Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Becki - Thanks for sharing your story. Thats a great story!!! Lately I've been concerned about Grants weight. He has gotten noticably smaller than the kids his age. I've been blaming that on the MTX. But after reading your story I see that its possible to continue growing. He is almost 12 and weighs 95 lbs. Hopefully that growth spurt will start soon! & Grant (11, PsA/Uveitis) > > Hi le, > Just wanted to congradulate you on your decision to start Enbrel and it worked it's miricle on your daughter.My son was diagnosed June of 2000 shortly before his 3rd b-day.He was systemic and so very sick,it took alot of fighting but we got a tentative diagnosis in 21 days.He was already on Motrin they put him on 30mg Prelone but we had to wait another 3 weeks before starting MTX,the official 6 weeks of symptoms.Months passed and eventualy at 3 he was maxed out on 25mg subq.They then went ahead and just maxed him out on Plaquenil with some sucess but not much.We were able however to get below 9mg Prelone with out the systemic flare.He was left with a very resistant lft ankle so we had it drained and injected.The steroid taper made it to 3mg and no systemic flare but that ankle swelled up huge again after only 1 month.Georgina our moderator posted an e-mail about Enbrel and a phase 3 safety study being done at Cincinnati Children's.Dr.Lovell is the one > that did the original phase 1 and 2 parts of the study.I called him up and qualified.We had to postpone the first visit because was in a cast,left ankle,after 2nd drainage and injection and refusal to wear his boot. > Enbrel was aproved for JRA in late 99 early 2000 but the demand was higher then the production so they had a waiting list.In Dec 2000 we sent in our prospective patient form and just days later Enbrels web site said that no one else would be able to obtain Enbrel until the new RI plant was up and running.We sat on that list for 9 long months before joing the 3 yr safety study. > was given a 50% chance of it working due to him being systemic,luckily for us had gone 6 months with no systemic symptoms.The only way for us to get Enbrel was due to entering the study,we had a special piece of paper with a number on it that the pharmacy had to call in.Nine days after the first shot woke up running into our room and jumping on our bed screaming it doesn't hurt.As far as Cincinnati was concerned he was a miricle case.They tapered the Motrin,took him off the Plaquenil,tapered the MTX and he didn't flare until our local ped rheumy took him off his 2.5mg dose.A good 18 months had passed by.Just a FYI 6 months with no pain,tenderness,swelling,lost range of motion and no morning stifness longer then 15 minutes is called complete control, after 1 yr of this it is then called full remission on medication. > Cincinnati Childrens has a page called Change the Outcome it is stories of some of their miricle patients.They picked to be the first JRA story and to this day still the only one.A local DJ who does their Children's Miricle Network Radiothon read his story and wanted to know if it was possible for us to do an interview,we live 307 miles a way.Luckily we had a month window before or after the last study visit to come in so it was ok. > I am very happy to say that years later is back in full remission on medication for another 18 months now.Even the time in between there wasn't much,nothing we could see,just tiny things Dr.Lovell found on extensive exams. > is currantly on 12.5 mg MTX subq and 32.5 mg Enbrel 1x a week.He now weighs 118lbs so he could be taking 42.5mg Enbrel.In April we see the rheumy and they are going to start tapering his MTX again. > I hope your daughter has the same long term success as .Sorry,known for rambeling.I just love a happy story!!! > Becki and 10 1/2 systemic onset and will always be labled that.. > > > > > ________________________________ > From: " deetipton@... " <deetipton@...> > > Sent: Sunday, January 25, 2009 12:02:51 PM > Subject: Hello! > > > Hello! > > I just wanted to introduce myself. My name is le. I probably > won't be around often, but I will try to pop by whenever possible. > I have a 7 yr old, , that was diagnosed with RF positive, poly- > articular JRA with erythema nodosum and Raynaud's Phenomenon last > year. After going through a roller coaster of medicines she is now > taking mtx by pill once a week, and Enbrel injections twice weekly. > Enbrel is surely a gift from God. I also have an older daughter, > , who is 14, and a son, Zachary, who is almost 6. Zachy has > bad eczema. If it's autoimmune chances are we have it covered. I > work full-time, and I'm trying to get back to school. I have a lot > to do because I haven't been to school since 1992. My husband has > been ill and can't do that much physically, so I have a lot of > things that he once took care of to do as well. We are alive and > together! That's all that matters. > > In trying to think of what I wish that I had known and had me > lost... for those of you thinking that you may have to move to > Enbrel, it is a crazy but worthwhile road. I was very worried about > the cost, for one thing. Enbrel isn't just a medicine- it's a > system. They know that they have an amazing medicine, and they can > afford to help you. They have the Enbrel Quick Assist program. > They fully cover your first 6 months of treatment. After that they > will pay half of your co-pay. The med without insurance is > something like $1300, but they won't make you pay any more than > $120. I was very emotional about moving to it despite wanting to > because the MTX just wasn't doing anything anymore. The first > couple of days were overwhelming. It's only available on my > insurance through a specialty pharmacy. However overwhelming, this > was definitely one of the best decisions we've ever made. Despite > being another immune suppressor, hasn't been sick since being > on it. Before it she was sick all the time. She's gaining weight > finally. It's been about 2 months, and she's been declared in > remission. The red in her fingers and the swelling is gone. Her > rheumy once took about 20 minutes looking at her fingers trying to > figure out why they were so bad, and now you'd never know. She's > running, jumping, tackling her brother!!! And this was a child that > screamed when she saw a dog while we were driving, or would panic > and cry for an hour whenever we went to a fun place with a lot of > rambunctious kids running around. She's right there with them now. > Please, if any of you have any questions leave me a message.. I have > learned so much, and I would love to share it. We're in a good > place now, but I remember a year ago when we were soooo lost... I > look forward to your friendship! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Pam, My Son use to be skinny as a bean pole when he was 10 thru 13 by age 14 he was gaining weight and growing more. At 15 he was muscle bound and weighed 175 all muscle and as the girls called it he had a 6 pack lololol. Right before he was 17 his Metabolism kicked in and in 1 month lost 30 pounds Tests were done as the weight loss concerned the Dr. Then she came back and told us that his Metabolism has hit high gear and he would have to eat more to keep weight on. Well that was many moons ago. Each child is different. Today he is the same weight as he was when he was 17 yrs old. 145 pounds. He eats but I think he has a bottomless pit of a tummy lololol. He is right at 6 ft tall. Where my hubby is 6 ft 4 in tall. on the other hand is 21 and only 4 ft 10 inches tall weight is up and down from 110 to 120 pounds. JA affected her growth as she has 1 leg shorter than the other. To put her against the Family she is the shortest until she puts heels on lolol. Then I take the name of shortest. I also have to look at my Mom who was 4 ft 8 in. She has made up for the shortest as she got the BIGGEST mouth lololol. She can out yell anyone here lolol. Robbin **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi , I definately recognise you and Grant's name.Boy have I been MIA for a very long time.Do have your own copy of Grant's growth chart? I got ahold of one,well actualy took it out of a wall holder at the ped rheumies office back when was 3.Following Grant's growth curve is what is most important. has always been in between the 75% to almost off the chart in weight.It tends to fluctuate more so then height.His height remains in the 75%-90% although I don't think he is keeping up with his normal 3 " a year but he is just hitting puberty so who knows.Keep in mind all children are made differant. is much taller then his older sisters best friend who is 2 yrs older. Having Grant doing so well now is what is most important and who knows Grant may be perfect and all the other kids may be junk food junkies lol Hugs Becki and 10 systemic ________________________________ From: toivonen4 <toivonen4@...> Sent: Thursday, January 29, 2009 9:23:50 AM Subject: Re: Hello! Becki - Thanks for sharing your story. Thats a great story!!! Lately I've been concerned about Grants weight. He has gotten noticably smaller than the kids his age. I've been blaming that on the MTX. But after reading your story I see that its possible to continue growing. He is almost 12 and weighs 95 lbs. Hopefully that growth spurt will start soon! & Grant (11, PsA/Uveitis) > > Hi le, > Just wanted to congradulate you on your decision to start Enbrel and it worked it's miricle on your daughter.My son was diagnosed June of 2000 shortly before his 3rd b-day.He was systemic and so very sick,it took alot of fighting but we got a tentative diagnosis in 21 days.He was already on Motrin they put him on 30mg Prelone but we had to wait another 3 weeks before starting MTX,the official 6 weeks of symptoms.Months passed and eventualy at 3 he was maxed out on 25mg subq.They then went ahead and just maxed him out on Plaquenil with some sucess but not much.We were able however to get below 9mg Prelone with out the systemic flare.He was left with a very resistant lft ankle so we had it drained and injected.The steroid taper made it to 3mg and no systemic flare but that ankle swelled up huge again after only 1 month.Georgina our moderator posted an e-mail about Enbrel and a phase 3 safety study being done at Cincinnati Children's.Dr. Lovell is the one > that did the original phase 1 and 2 parts of the study.I called him up and qualified.We had to postpone the first visit because was in a cast,left ankle,after 2nd drainage and injection and refusal to wear his boot. > Enbrel was aproved for JRA in late 99 early 2000 but the demand was higher then the production so they had a waiting list.In Dec 2000 we sent in our prospective patient form and just days later Enbrels web site said that no one else would be able to obtain Enbrel until the new RI plant was up and running.We sat on that list for 9 long months before joing the 3 yr safety study. > was given a 50% chance of it working due to him being systemic,luckily for us had gone 6 months with no systemic symptoms.The only way for us to get Enbrel was due to entering the study,we had a special piece of paper with a number on it that the pharmacy had to call in.Nine days after the first shot woke up running into our room and jumping on our bed screaming it doesn't hurt.As far as Cincinnati was concerned he was a miricle case.They tapered the Motrin,took him off the Plaquenil,tapered the MTX and he didn't flare until our local ped rheumy took him off his 2.5mg dose.A good 18 months had passed by.Just a FYI 6 months with no pain,tenderness, swelling, lost range of motion and no morning stifness longer then 15 minutes is called complete control, after 1 yr of this it is then called full remission on medication. > Cincinnati Childrens has a page called Change the Outcome it is stories of some of their miricle patients.They picked to be the first JRA story and to this day still the only one.A local DJ who does their Children's Miricle Network Radiothon read his story and wanted to know if it was possible for us to do an interview,we live 307 miles a way.Luckily we had a month window before or after the last study visit to come in so it was ok. > I am very happy to say that years later is back in full remission on medication for another 18 months now.Even the time in between there wasn't much,nothing we could see,just tiny things Dr.Lovell found on extensive exams. > is currantly on 12.5 mg MTX subq and 32.5 mg Enbrel 1x a week.He now weighs 118lbs so he could be taking 42.5mg Enbrel.In April we see the rheumy and they are going to start tapering his MTX again. > I hope your daughter has the same long term success as .Sorry, known for rambeling.I just love a happy story!!! > Becki and 10 1/2 systemic onset and will always be labled that.. > > > > > ____________ _________ _________ __ > From: " deetipton@. .. " <deetipton@. ..> > @group s.com > Sent: Sunday, January 25, 2009 12:02:51 PM > Subject: Hello! > > > Hello! > > I just wanted to introduce myself. My name is le. I probably > won't be around often, but I will try to pop by whenever possible. > I have a 7 yr old, , that was diagnosed with RF positive, poly- > articular JRA with erythema nodosum and Raynaud's Phenomenon last > year. After going through a roller coaster of medicines she is now > taking mtx by pill once a week, and Enbrel injections twice weekly. > Enbrel is surely a gift from God. I also have an older daughter, > , who is 14, and a son, Zachary, who is almost 6. Zachy has > bad eczema. If it's autoimmune chances are we have it covered. I > work full-time, and I'm trying to get back to school. I have a lot > to do because I haven't been to school since 1992. My husband has > been ill and can't do that much physically, so I have a lot of > things that he once took care of to do as well. We are alive and > together! That's all that matters. > > In trying to think of what I wish that I had known and had me > lost... for those of you thinking that you may have to move to > Enbrel, it is a crazy but worthwhile road. I was very worried about > the cost, for one thing. Enbrel isn't just a medicine- it's a > system. They know that they have an amazing medicine, and they can > afford to help you. They have the Enbrel Quick Assist program. > They fully cover your first 6 months of treatment. After that they > will pay half of your co-pay. The med without insurance is > something like $1300, but they won't make you pay any more than > $120. I was very emotional about moving to it despite wanting to > because the MTX just wasn't doing anything anymore. The first > couple of days were overwhelming. It's only available on my > insurance through a specialty pharmacy. However overwhelming, this > was definitely one of the best decisions we've ever made. Despite > being another immune suppressor, hasn't been sick since being > on it. Before it she was sick all the time. She's gaining weight > finally. It's been about 2 months, and she's been declared in > remission. The red in her fingers and the swelling is gone. Her > rheumy once took about 20 minutes looking at her fingers trying to > figure out why they were so bad, and now you'd never know.. She's > running, jumping, tackling her brother!!! And this was a child that > screamed when she saw a dog while we were driving, or would panic > and cry for an hour whenever we went to a fun place with a lot of > rambunctious kids running around. She's right there with them now. > Please, if any of you have any questions leave me a message.. I have > learned so much, and I would love to share it. We're in a good > place now, but I remember a year ago when we were soooo lost... I > look forward to your friendship! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Sometimes kids are just smaller. My 11 yr old is 53 " tall and only weighs 57 lbs. But he's been growing a lot lately. Still tiny, but making progress. Then again, he was always small, lesss than 10%. I think at his biggest, he might have hit the 10%. Pam Hello! > > > > > > Hello! > > > > I just wanted to introduce myself. My name is le. I > probably > > won't be around often, but I will try to pop by whenever > possible. > > I have a 7 yr old, , that was diagnosed with RF positive, > poly- > > articular JRA with erythema nodosum and Raynaud's Phenomenon > last > > year. After going through a roller coaster of medicines she is > now > > taking mtx by pill once a week, and Enbrel injections twice > weekly. > > Enbrel is surely a gift from God. I also have an older > daughter, > > , who is 14, and a son, Zachary, who is almost 6. Zachy > has > > bad eczema. If it's autoimmune chances are we have it covered. > I > > work full-time, and I'm trying to get back to school. I have a > lot > > to do because I haven't been to school since 1992. My husband > has > > been ill and can't do that much physically, so I have a lot of > > things that he once took care of to do as well. We are alive > and > > together! That's all that matters. > > > > In trying to think of what I wish that I had known and had me > > lost... for those of you thinking that you may have to move to > > Enbrel, it is a crazy but worthwhile road. I was very worried > about > > the cost, for one thing. Enbrel isn't just a medicine- it's a > > system. They know that they have an amazing medicine, and they > can > > afford to help you. They have the Enbrel Quick Assist program. > > They fully cover your first 6 months of treatment. After that > they > > will pay half of your co-pay. The med without insurance is > > something like $1300, but they won't make you pay any more > than > > $120. I was very emotional about moving to it despite wanting > to > > because the MTX just wasn't doing anything anymore. The first > > couple of days were overwhelming. It's only available on my > > insurance through a specialty pharmacy. However overwhelming, > this > > was definitely one of the best decisions we've ever made. > Despite > > being another immune suppressor, hasn't been sick since > being > > on it. Before it she was sick all the time. She's gaining > weight > > finally. It's been about 2 months, and she's been declared in > > remission. The red in her fingers and the swelling is gone. > Her > > rheumy once took about 20 minutes looking at her fingers > trying to > > figure out why they were so bad, and now you'd never know.. > She's > > running, jumping, tackling her brother!!! And this was a child > that > > screamed when she saw a dog while we were driving, or would > panic > > and cry for an hour whenever we went to a fun place with a lot > of > > rambunctious kids running around. She's right there with them > now. > > Please, if any of you have any questions leave me a message.. > I > have > > learned so much, and I would love to share it. We're in a good > > place now, but I remember a year ago when we were soooo > lost... I > > look forward to your friendship! > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 You are both so right! I just need to keep it in perspective. He has always been in about the 25% category for height and weight, so yes he will not be a big person. You know though when you start seeing his friends that were about the same size as him all these years, start surpassing him it makes me wonder if it isn't this darn disease! Becki - glad you aren't mia anymore! & Grant (11, PsA/Uveitis) > > > > > > Hi le, > > > Just wanted to congradulate you on your decision to start > > Enbrel > > and it worked it's miricle on your daughter.My son was diagnosed > > June of 2000 shortly before his 3rd b-day.He was systemic and so > > very sick,it took alot of fighting but we got a tentative > > diagnosis > > in 21 days.He was already on Motrin they put him on 30mg > > Prelone but > > we had to wait another 3 weeks before starting MTX,the official > > 6 > > weeks of symptoms.Months passed and eventualy at 3 he was maxed > > out > > on 25mg subq.They then went ahead and just maxed him out on > > Plaquenil with some sucess but not much.We were able however to > > get > > below 9mg Prelone with out the systemic flare.He was left with a > > very resistant lft ankle so we had it drained and injected.The > > steroid taper made it to 3mg and no systemic flare but that > > ankle > > swelled up huge again after only 1 month.Georgina our moderator > > posted an e-mail about Enbrel and a phase 3 safety study being > > done > > at Cincinnati Children's.Dr. Lovell is the one > > > that did the original phase 1 and 2 parts of the study.I > > called > > him up and qualified.We had to postpone the first visit > > because was in a cast,left ankle,after 2nd drainage and > > injection and refusal to wear his boot. > > > Enbrel was aproved for JRA in late 99 early 2000 but the > > demand > > was higher then the production so they had a waiting list.In Dec > > 2000 we sent in our prospective patient form and just days later > > Enbrels web site said that no one else would be able to obtain > > Enbrel until the new RI plant was up and running.We sat on that > > list > > for 9 long months before joing the 3 yr safety study. > > > was given a 50% chance of it working due to him being > > systemic,luckily for us had gone 6 months with no systemic > > symptoms.The only way for us to get Enbrel was due to entering > > the > > study,we had a special piece of paper with a number on it that > > the > > pharmacy had to call in.Nine days after the first shot > > woke up > > running into our room and jumping on our bed screaming it > > doesn't > > hurt.As far as Cincinnati was concerned he was a miricle > > case.They > > tapered the Motrin,took him off the Plaquenil,tapered the MTX > > and he > > didn't flare until our local ped rheumy took him off his 2.5mg > > dose.A good 18 months had passed by.Just a FYI 6 months with no > > pain,tenderness, swelling, lost range of motion and no morning > > stifness longer then 15 minutes is called complete control, > > after 1 > > yr of this it is then called full remission on medication. > > > Cincinnati Childrens has a page called Change the Outcome it > > is > > stories of some of their miricle patients.They picked to > > be > > the first JRA story and to this day still the only one.A local > > DJ > > who does their Children's Miricle Network Radiothon read his > > story > > and wanted to know if it was possible for us to do an > > interview,we > > live 307 miles a way.Luckily we had a month window before or > > after > > the last study visit to come in so it was ok. > > > I am very happy to say that years later is back in full > > remission on medication for another 18 months now.Even the time > > in > > between there wasn't much,nothing we could see,just tiny things > > Dr.Lovell found on extensive exams. > > > is currantly on 12.5 mg MTX subq and 32.5 mg Enbrel 1x a > > week.He now weighs 118lbs so he could be taking 42.5mg Enbrel.In > > April we see the rheumy and they are going to start tapering his > > MTX > > again. > > > I hope your daughter has the same long term success as > > .Sorry, known for rambeling.I just love a happy story!!! > > > Becki and 10 1/2 systemic onset and will always be > > labled > > that.. > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: " deetipton@ .. " <deetipton@ ..> > > > @group s.com > > > Sent: Sunday, January 25, 2009 12:02:51 PM > > > Subject: Hello! > > > > > > > > > Hello! > > > > > > I just wanted to introduce myself. My name is le. I > > probably > > > won't be around often, but I will try to pop by whenever > > possible. > > > I have a 7 yr old, , that was diagnosed with RF positive, > > poly- > > > articular JRA with erythema nodosum and Raynaud's Phenomenon > > last > > > year. After going through a roller coaster of medicines she is > > now > > > taking mtx by pill once a week, and Enbrel injections twice > > weekly. > > > Enbrel is surely a gift from God. I also have an older > > daughter, > > > , who is 14, and a son, Zachary, who is almost 6. Zachy > > has > > > bad eczema. If it's autoimmune chances are we have it covered. > > I > > > work full-time, and I'm trying to get back to school. I have a > > lot > > > to do because I haven't been to school since 1992. My husband > > has > > > been ill and can't do that much physically, so I have a lot of > > > things that he once took care of to do as well. We are alive > > and > > > together! That's all that matters. > > > > > > In trying to think of what I wish that I had known and had me > > > lost... for those of you thinking that you may have to move to > > > Enbrel, it is a crazy but worthwhile road. I was very worried > > about > > > the cost, for one thing. Enbrel isn't just a medicine- it's a > > > system. They know that they have an amazing medicine, and they > > can > > > afford to help you. They have the Enbrel Quick Assist program. > > > They fully cover your first 6 months of treatment. After that > > they > > > will pay half of your co-pay. The med without insurance is > > > something like $1300, but they won't make you pay any more > > than > > > $120. I was very emotional about moving to it despite wanting > > to > > > because the MTX just wasn't doing anything anymore. The first > > > couple of days were overwhelming. It's only available on my > > > insurance through a specialty pharmacy. However overwhelming, > > this > > > was definitely one of the best decisions we've ever made. > > Despite > > > being another immune suppressor, hasn't been sick since > > being > > > on it. Before it she was sick all the time. She's gaining > > weight > > > finally. It's been about 2 months, and she's been declared in > > > remission. The red in her fingers and the swelling is gone. > > Her > > > rheumy once took about 20 minutes looking at her fingers > > trying to > > > figure out why they were so bad, and now you'd never know.. > > She's > > > running, jumping, tackling her brother!!! And this was a child > > that > > > screamed when she saw a dog while we were driving, or would > > panic > > > and cry for an hour whenever we went to a fun place with a lot > > of > > > rambunctious kids running around. She's right there with them > > now. > > > Please, if any of you have any questions leave me a message.. > > I > > have > > > learned so much, and I would love to share it. We're in a good > > > place now, but I remember a year ago when we were soooo > > lost... I > > > look forward to your friendship! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 : If it makes you feel any better, Hannah literally did not grow for three years, height or weight. She is now 12 growing like a weed, weighs about 80 lbs and wearing a woman's shoe size. She is still small, but is no longer the smallest in her class. I bet once he hits 12 he'll take off. Beth & Hannah Beth " We can't direct the wind, but we can adjust our sails " -author unknown ________________________________ From: toivonen4 <toivonen4@...> Sent: Thursday, January 29, 2009 2:06:02 PM Subject: Re: Hello! You are both so right! I just need to keep it in perspective. He has always been in about the 25% category for height and weight, so yes he will not be a big person. You know though when you start seeing his friends that were about the same size as him all these years, start surpassing him it makes me wonder if it isn't this darn disease! Becki - glad you aren't mia anymore! & Grant (11, PsA/Uveitis) > > > > > > Hi le, > > > Just wanted to congradulate you on your decision to start > > Enbrel > > and it worked it's miricle on your daughter.My son was diagnosed > > June of 2000 shortly before his 3rd b-day.He was systemic and so > > very sick,it took alot of fighting but we got a tentative > > diagnosis > > in 21 days.He was already on Motrin they put him on 30mg > > Prelone but > > we had to wait another 3 weeks before starting MTX,the official > > 6 > > weeks of symptoms.Months passed and eventualy at 3 he was maxed > > out > > on 25mg subq.They then went ahead and just maxed him out on > > Plaquenil with some sucess but not much.We were able however to > > get > > below 9mg Prelone with out the systemic flare.He was left with a > > very resistant lft ankle so we had it drained and injected.The > > steroid taper made it to 3mg and no systemic flare but that > > ankle > > swelled up huge again after only 1 month.Georgina our moderator > > posted an e-mail about Enbrel and a phase 3 safety study being > > done > > at Cincinnati Children's.Dr. Lovell is the one > > > that did the original phase 1 and 2 parts of the study.I > > called > > him up and qualified.We had to postpone the first visit > > because was in a cast,left ankle,after 2nd drainage and > > injection and refusal to wear his boot. > > > Enbrel was aproved for JRA in late 99 early 2000 but the > > demand > > was higher then the production so they had a waiting list.In Dec > > 2000 we sent in our prospective patient form and just days later > > Enbrels web site said that no one else would be able to obtain > > Enbrel until the new RI plant was up and running.We sat on that > > list > > for 9 long months before joing the 3 yr safety study. > > > was given a 50% chance of it working due to him being > > systemic,luckily for us had gone 6 months with no systemic > > symptoms.The only way for us to get Enbrel was due to entering > > the > > study,we had a special piece of paper with a number on it that > > the > > pharmacy had to call in.Nine days after the first shot > > woke up > > running into our room and jumping on our bed screaming it > > doesn't > > hurt.As far as Cincinnati was concerned he was a miricle > > case.They > > tapered the Motrin,took him off the Plaquenil,tapered the MTX > > and he > > didn't flare until our local ped rheumy took him off his 2.5mg > > dose.A good 18 months had passed by.Just a FYI 6 months with no > > pain,tenderness, swelling, lost range of motion and no morning > > stifness longer then 15 minutes is called complete control, > > after 1 > > yr of this it is then called full remission on medication. > > > Cincinnati Childrens has a page called Change the Outcome it > > is > > stories of some of their miricle patients.They picked to > > be > > the first JRA story and to this day still the only one.A local > > DJ > > who does their Children's Miricle Network Radiothon read his > > story > > and wanted to know if it was possible for us to do an > > interview,we > > live 307 miles a way.Luckily we had a month window before or > > after > > the last study visit to come in so it was ok. > > > I am very happy to say that years later is back in full > > remission on medication for another 18 months now.Even the time > > in > > between there wasn't much,nothing we could see,just tiny things > > Dr.Lovell found on extensive exams. > > > is currantly on 12.5 mg MTX subq and 32.5 mg Enbrel 1x a > > week.He now weighs 118lbs so he could be taking 42.5mg Enbrel.In > > April we see the rheumy and they are going to start tapering his > > MTX > > again. > > > I hope your daughter has the same long term success as > > .Sorry, known for rambeling.I just love a happy story!!! > > > Becki and 10 1/2 systemic onset and will always be > > labled > > that.. > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: " deetipton@ .. " <deetipton@ ..> > > > @group s.com > > > Sent: Sunday, January 25, 2009 12:02:51 PM > > > Subject: Hello! > > > > > > > > > Hello! > > > > > > I just wanted to introduce myself. My name is le. I > > probably > > > won't be around often, but I will try to pop by whenever > > possible. > > > I have a 7 yr old, , that was diagnosed with RF positive, > > poly- > > > articular JRA with erythema nodosum and Raynaud's Phenomenon > > last > > > year. After going through a roller coaster of medicines she is > > now > > > taking mtx by pill once a week, and Enbrel injections twice > > weekly. > > > Enbrel is surely a gift from God. I also have an older > > daughter, > > > , who is 14, and a son, Zachary, who is almost 6. Zachy > > has > > > bad eczema. If it's autoimmune chances are we have it covered. > > I > > > work full-time, and I'm trying to get back to school. I have a > > lot > > > to do because I haven't been to school since 1992. My husband > > has > > > been ill and can't do that much physically, so I have a lot of > > > things that he once took care of to do as well. We are alive > > and > > > together! That's all that matters. > > > > > > In trying to think of what I wish that I had known and had me > > > lost... for those of you thinking that you may have to move to > > > Enbrel, it is a crazy but worthwhile road. I was very worried > > about > > > the cost, for one thing. Enbrel isn't just a medicine- it's a > > > system. They know that they have an amazing medicine, and they > > can > > > afford to help you. They have the Enbrel Quick Assist program. > > > They fully cover your first 6 months of treatment. After that > > they > > > will pay half of your co-pay. The med without insurance is > > > something like $1300, but they won't make you pay any more > > than > > > $120. I was very emotional about moving to it despite wanting > > to > > > because the MTX just wasn't doing anything anymore. The first > > > couple of days were overwhelming. It's only available on my > > > insurance through a specialty pharmacy. However overwhelming, > > this > > > was definitely one of the best decisions we've ever made. > > Despite > > > being another immune suppressor, hasn't been sick since > > being > > > on it. Before it she was sick all the time. She's gaining > > weight > > > finally. It's been about 2 months, and she's been declared in > > > remission. The red in her fingers and the swelling is gone. > > Her > > > rheumy once took about 20 minutes looking at her fingers > > trying to > > > figure out why they were so bad, and now you'd never know.. > > She's > > > running, jumping, tackling her brother!!! And this was a child > > that > > > screamed when she saw a dog while we were driving, or would > > panic > > > and cry for an hour whenever we went to a fun place with a lot > > of > > > rambunctious kids running around. She's right there with them > > now. > > > Please, if any of you have any questions leave me a message.. > > I > > have > > > learned so much, and I would love to share it. We're in a good > > > place now, but I remember a year ago when we were soooo > > lost... I > > > look forward to your friendship! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi , It is true that you have to look at the overall growth chart and evaluate the growth trend - at the same time JRA can inhibit/affect growth - many of the medications used to treat JRA also inhibit growth - so don't write off all of your concerns just yet. In spite of being a 28 week preemie - 's growth chart shows a steady incline in growth - and on the chart for his adjusted age - before he developed JRA. . Soon after diagnosis, his growth chart shows a clear leveling of his growth - and he hasn't been on the growth chart since.? If you continue to have questions, it wouldn't hurt to consult an endocrinologist. Val Rob's Mom (11, systemic) iginal Message----- From: toivonen4 <toivonen4@...> Sent: Thu, 29 Jan 2009 3:06 pm Subject: Re: Hello! You are both so right! I just need to keep it in perspective. He has always been in about the 25% category for height and weight, so yes he will not be a big person. You know though when you start seeing his friends that were about the same size as him all these years, start surpassing him it makes me wonder if it isn't this darn disease! Becki - glad you aren't mia anymore! & Grant (11, PsA/Uveitis) > > > > > > Hi le, > > > Just wanted to congradulate you on your decision to start > > Enbrel > > and it worked it's miricle on your daughter.My son was diagnosed > > June of 2000 shortly before his 3rd b-day.He was systemic and so > > very sick,it took alot of fighting but we got a tentative > > diagnosis > > in 21 days.He was already on Motrin they put him on 30mg > > Prelone but > > we had to wait another 3 weeks before starting MTX,the official > > 6 > > weeks of symptoms.Months passed and eventualy at 3 he was maxed > > out > > on 25mg subq.They then went ahead and just maxed him out on > > Plaquenil with some sucess but not much.We were able however to > > get > > below 9mg Prelone with out the systemic flare.He was left with a > > very resistant lft ankle so we had it drained and injected.The > > steroid taper made it to 3mg and no systemic flare but that > > ankle > > swelled up huge again after only 1 month.Georgina our moderator > > posted an e-mail about Enbrel and a phase 3 safety study being > > done > > at Cincinnati Children's.Dr. Lovell is the one > > > that did the original phase 1 and 2 parts of the study.I > > called > > him up and qualified.We had to postpone the first visit > > because was in a cast,left ankle,after 2nd drainage and > > injection and refusal to wear his boot. > > > Enbrel was aproved for JRA in late 99 early 2000 but the > > demand > > was higher then the production so they had a waiting list.In Dec > > 2000 we sent in our prospective patient form and just days later > > Enbrels web site said that no one else would be able to obtain > > Enbrel until the new RI plant was up and running.We sat on that > > list > > for 9 long months before joing the 3 yr safety study. > > > was given a 50% chance of it working due to him being > > systemic,luckily for us had gone 6 months with no systemic > > symptoms.The only way for us to get Enbrel was due to entering > > the > > study,we had a special piece of paper with a number on it that > > the > > pharmacy had to call in.Nine days after the first shot > > woke up > > running into our room and jumping on our bed screaming it > > doesn't > > hurt.As far as Cincinnati was concerned he was a miricle > > case.They > > tapered the Motrin,took him off the Plaquenil,tapered the MTX > > and he > > didn't flare until our local ped rheumy took him off his 2.5mg > > dose.A good 18 months had passed by.Just a FYI 6 months with no > > pain,tenderness, swelling, lost range of motion and no morning > > stifness longer then 15 minutes is called complete control, > > after 1 > > yr of this it is then called full remission on medication. > > > Cincinnati Childrens has a page called Change the Outcome it > > is > > stories of some of their miricle patients.They picked to > > be > > the first JRA story and to this day still the only one.A local > > DJ > > who does their Children's Miricle Network Radiothon read his > > story > > and wanted to know if it was possible for us to do an > > interview,we > > live 307 miles a way.Luckily we had a month window before or > > after > > the last study visit to come in so it was ok. > > > I am very happy to say that years later is back in full > > remission on medication for another 18 months now.Even the time > > in > > between there wasn't much,nothing we could see,just tiny things > > Dr.Lovell found on extensive exams. > > > is currantly on 12.5 mg MTX subq and 32.5 mg Enbrel 1x a > > week.He now weighs 118lbs so he could be taking 42.5mg Enbrel.In > > April we see the rheumy and they are going to start tapering his > > MTX > > again. > > > I hope your daughter has the same long term success as > > .Sorry, known for rambeling.I just love a happy story!!! > > > Becki and 10 1/2 systemic onset and will always be > > labled > > that.. > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: " deetipton@ .. " <deetipton@ ..> > > > @group s.com > > > Sent: Sunday, January 25, 2009 12:02:51 PM > > > Subject: Hello! > > > > > > > > > Hello! > > > > > > I just wanted to introduce myself. My name is le. I > > probably > > > won't be around often, but I will try to pop by whenever > > possible. > > > I have a 7 yr old, , that was diagnosed with RF positive, > > poly- > > > articular JRA with erythema nodosum and Raynaud's Phenomenon > > last > > > year. After going through a roller coaster of medicines she is > > now > > > taking mtx by pill once a week, and Enbrel injections twice > > weekly. > > > Enbrel is surely a gift from God. I also have an older > > daughter, > > > , who is 14, and a son, Zachary, who is almost 6. Zachy > > has > > > bad eczema. If it's autoimmune chances are we have it covered. > > I > > > work full-time, and I'm trying to get back to school. I have a > > lot > > > to do because I haven't been to school since 1992. My husband > > has > > > been ill and can't do that much physically, so I have a lot of > > > things that he once took care of to do as well. We are alive > > and > > > together! That's all that matters. > > > > > > In trying to think of what I wish that I had known and had me > > > lost... for those of you thinking that you may have to move to > > > Enbrel, it is a crazy but worthwhile road. I was very worried > > about > > > the cost, for one thing. Enbrel isn't just a medicine- it's a > > > system. They know that they have an amazing medicine, and they > > can > > > afford to help you. They have the Enbrel Quick Assist program. > > > They fully cover your first 6 months of treatment. After that > > they > > > will pay half of your co-pay. The med without insurance is > > > something like $1300, but they won't make you pay any more > > than > > > $120. I was very emotional about moving to it despite wanting > > to > > > because the MTX just wasn't doing anything anymore. The first > > > couple of days were overwhelming. It's only available on my > > > insurance through a specialty pharmacy. However overwhelming, > > this > > > was definitely one of the best decisions we've ever made. > > Despite > > > being another immune suppressor, hasn't been sick since > > being > > > on it. Before it she was sick all the time. She's gaining > > weight > > > finally. It's been about 2 months, and she's been declared in > > > remission. The red in her fingers and the swelling is gone. > > Her > > > rheumy once took about 20 minutes looking at her fingers > > trying to > > > figure out why they were so bad, and now you'd never know.. > > She's > > > running, jumping, tackling her brother!!! And this was a child > > that > > > screamed when she saw a dog while we were driving, or would > > panic > > > and cry for an hour whenever we went to a fun place with a lot > > of > > > rambunctious kids running around. She's right there with them > > now. > > > Please, if any of you have any questions leave me a message.. > > I > > have > > > learned so much, and I would love to share it. We're in a good > > > place now, but I remember a year ago when we were soooo > > lost... I > > > look forward to your friendship! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Silly as it may be, your story put tears in my eyes. I totally know how it is to have your child thrilled just to not be in pain. Thank you so much for the awesome read!!! > > Hi le, > Just wanted to congradulate you on your decision to start Enbrel and it worked it's miricle on your daughter.My son was diagnosed June of 2000 shortly before his 3rd b-day.He was systemic and so very sick,it took alot of fighting but we got a tentative diagnosis in 21 days.He was already on Motrin they put him on 30mg Prelone but we had to wait another 3 weeks before starting MTX,the official 6 weeks of symptoms.Months passed and eventualy at 3 he was maxed out on 25mg subq.They then went ahead and just maxed him out on Plaquenil with some sucess but not much.We were able however to get below 9mg Prelone with out the systemic flare.He was left with a very resistant lft ankle so we had it drained and injected.The steroid taper made it to 3mg and no systemic flare but that ankle swelled up huge again after only 1 month.Georgina our moderator posted an e-mail about Enbrel and a phase 3 safety study being done at Cincinnati Children's.Dr.Lovell is the one > that did the original phase 1 and 2 parts of the study.I called him up and qualified.We had to postpone the first visit because was in a cast,left ankle,after 2nd drainage and injection and refusal to wear his boot. > Enbrel was aproved for JRA in late 99 early 2000 but the demand was higher then the production so they had a waiting list.In Dec 2000 we sent in our prospective patient form and just days later Enbrels web site said that no one else would be able to obtain Enbrel until the new RI plant was up and running.We sat on that list for 9 long months before joing the 3 yr safety study. > was given a 50% chance of it working due to him being systemic,luckily for us had gone 6 months with no systemic symptoms.The only way for us to get Enbrel was due to entering the study,we had a special piece of paper with a number on it that the pharmacy had to call in.Nine days after the first shot woke up running into our room and jumping on our bed screaming it doesn't hurt.As far as Cincinnati was concerned he was a miricle case.They tapered the Motrin,took him off the Plaquenil,tapered the MTX and he didn't flare until our local ped rheumy took him off his 2.5mg dose.A good 18 months had passed by.Just a FYI 6 months with no pain,tenderness,swelling,lost range of motion and no morning stifness longer then 15 minutes is called complete control, after 1 yr of this it is then called full remission on medication. > Cincinnati Childrens has a page called Change the Outcome it is stories of some of their miricle patients.They picked to be the first JRA story and to this day still the only one.A local DJ who does their Children's Miricle Network Radiothon read his story and wanted to know if it was possible for us to do an interview,we live 307 miles a way.Luckily we had a month window before or after the last study visit to come in so it was ok. > I am very happy to say that years later is back in full remission on medication for another 18 months now.Even the time in between there wasn't much,nothing we could see,just tiny things Dr.Lovell found on extensive exams. > is currantly on 12.5 mg MTX subq and 32.5 mg Enbrel 1x a week.He now weighs 118lbs so he could be taking 42.5mg Enbrel.In April we see the rheumy and they are going to start tapering his MTX again. > I hope your daughter has the same long term success as .Sorry,known for rambeling.I just love a happy story!!! > Becki and 10 1/2 systemic onset and will always be labled that.. > > > > > ________________________________ > From: " deetipton@... " <deetipton@...> > > Sent: Sunday, January 25, 2009 12:02:51 PM > Subject: Hello! > > > Hello! > > I just wanted to introduce myself. My name is le. I probably > won't be around often, but I will try to pop by whenever possible. > I have a 7 yr old, , that was diagnosed with RF positive, poly- > articular JRA with erythema nodosum and Raynaud's Phenomenon last > year. After going through a roller coaster of medicines she is now > taking mtx by pill once a week, and Enbrel injections twice weekly. > Enbrel is surely a gift from God. I also have an older daughter, > , who is 14, and a son, Zachary, who is almost 6. Zachy has > bad eczema. If it's autoimmune chances are we have it covered. I > work full-time, and I'm trying to get back to school. I have a lot > to do because I haven't been to school since 1992. My husband has > been ill and can't do that much physically, so I have a lot of > things that he once took care of to do as well. We are alive and > together! That's all that matters. > > In trying to think of what I wish that I had known and had me > lost... for those of you thinking that you may have to move to > Enbrel, it is a crazy but worthwhile road. I was very worried about > the cost, for one thing. Enbrel isn't just a medicine- it's a > system. They know that they have an amazing medicine, and they can > afford to help you. They have the Enbrel Quick Assist program. > They fully cover your first 6 months of treatment. After that they > will pay half of your co-pay. The med without insurance is > something like $1300, but they won't make you pay any more than > $120. I was very emotional about moving to it despite wanting to > because the MTX just wasn't doing anything anymore. The first > couple of days were overwhelming. It's only available on my > insurance through a specialty pharmacy. However overwhelming, this > was definitely one of the best decisions we've ever made. Despite > being another immune suppressor, hasn't been sick since being > on it. Before it she was sick all the time. She's gaining weight > finally. It's been about 2 months, and she's been declared in > remission. The red in her fingers and the swelling is gone. Her > rheumy once took about 20 minutes looking at her fingers trying to > figure out why they were so bad, and now you'd never know. She's > running, jumping, tackling her brother!!! And this was a child that > screamed when she saw a dog while we were driving, or would panic > and cry for an hour whenever we went to a fun place with a lot of > rambunctious kids running around. She's right there with them now. > Please, if any of you have any questions leave me a message.. I have > learned so much, and I would love to share it. We're in a good > place now, but I remember a year ago when we were soooo lost... I > look forward to your friendship! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Our OT suggested that we get Light Bright to help with the wrist contractures. had the worst time with her fingers, but wrists, ankles and neck were the worst. The Light Bright helped and didn't feel like therapy. Patty-cake was a good game, too. I used to flex her wrists at night after bathtime, gently. ~Dee Mom to , 7, Poly-articular JRA with Raynaud's Phenomenon and Erythema Nodosum Zachary- 5, eczema and asthma , 14, ear problems > > First, I have a *suggestion*. After your name could you write your > children names and which one has JRA. This would be helpful for me to get > to know you better. > > Today we were playing games after gymnastic class and I had crawl > like a kitty cat. On her right side, she would drop down to her > forearm. So, she looked like a wounded bird when she was crawling. So, > tonight hubby had her make fist instead of putting her hands down. She > could do it for a little while. But on that same side she stuck out her > index finger. Anyway, it is very hard to watch your child not do the stuff > like other kids. > > I have also noticed that she makes fist when she is getting off the ground > (instead of putting her hands flat). Anyone else have kids doing the same > thing? > > ~Amy > Mommy to - 3years old JRA > Mommy to Andy - will 2 years old at Thanksgiving > Mommy to Maddie - 5 1/2 months old > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 We felt like that, too. I knew a child as a child that had JRA. I knew he had it long-term. I knew that was going to need Enbrel. I just KNEW it. It wasn't a panicky, or emotional thing. It was just a gut feeling because she was so, so severe. was about 50% improved after months on the MTX. We couldn't increase her anymore. Her fingers were still red and swollen all of the time. Yet, despite being so prepared, I still felt like someone hit me really hard when we got the official ok to Enbrel. It was a flurry of activity to get started- days actually. (Enbrel- not just a medication but a process!) However, I just steeled myself and prepared her as well as I could, and here we are. I hope you find something that really works for her, I hope you find your miracle. That's the beauty of these groups. You know SOMEone will be here for you. Everyone here seems so great! Let me know if you need anything... ~Dee~ Mom to , 7, poly-JRA with Raynaud's and erythema nodosum Zachary, 6, eczema and asthma , 14, ear problems > > Hi everyone. My name is , and my 3-year-old daughter was > diagnosed with pauciarticular JRA in september of last year. I > thought it would just go away with the medication, especially when we > started MTX, but it hasn't been helping, so now we've just passed > round two of her remicade treatments and I'm feeling much more like > we're into this for the long haul. Did anyone else have > that " realization " months after getting the diagnosis? > > Anyway, I have a question. Izzie keeps getting cold sores, and I've > wondered if anyone else has seen that. Also, I think the naproxen she > was taking was making her REALLY moody, so we switched her back to > Ibuprofen and she seems to be better. Has anyone else seen that? > Those are just two things we've experienced that I haven't seen > documented anywhere else, so wanted to ask. > > The Remicade seems to be helping so far, and we're hoping she'll be > completely into a remission state next year sometime. Wish us luck! > > Isabel's story is at www.caringbridge.com - username isabel_rose > > It probably sounds a lot like yours! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 My rheumy said that he sees a lot of children who are smaller because of their illness. He said mostly it seems to have to do with the pain controls. Lots of the kids are still in pain. When you're in pain you don't want to be bothered with eating. We were very concerned for a while. Emmy was so small. She just got back up to about 36 lbs. At age 7. But for the first time in a long time she actually looks healthy. She looks heavier, more solid. I know she's ok now, or at least on the right path. > > > > > > > > Hi le, > > > > Just wanted to congradulate you on your decision to start > > > Enbrel > > > and it worked it's miricle on your daughter.My son was diagnosed > > > June of 2000 shortly before his 3rd b-day.He was systemic and so > > > very sick,it took alot of fighting but we got a tentative > > > diagnosis > > > in 21 days.He was already on Motrin they put him on 30mg > > > Prelone but > > > we had to wait another 3 weeks before starting MTX,the official > > > 6 > > > weeks of symptoms.Months passed and eventualy at 3 he was maxed > > > out > > > on 25mg subq.They then went ahead and just maxed him out on > > > Plaquenil with some sucess but not much.We were able however to > > > get > > > below 9mg Prelone with out the systemic flare.He was left with a > > > very resistant lft ankle so we had it drained and injected.The > > > steroid taper made it to 3mg and no systemic flare but that > > > ankle > > > swelled up huge again after only 1 month.Georgina our moderator > > > posted an e-mail about Enbrel and a phase 3 safety study being > > > done > > > at Cincinnati Children's.Dr. Lovell is the one > > > > that did the original phase 1 and 2 parts of the study.I > > > called > > > him up and qualified.We had to postpone the first visit > > > because was in a cast,left ankle,after 2nd drainage and > > > injection and refusal to wear his boot. > > > > Enbrel was aproved for JRA in late 99 early 2000 but the > > > demand > > > was higher then the production so they had a waiting list.In Dec > > > 2000 we sent in our prospective patient form and just days later > > > Enbrels web site said that no one else would be able to obtain > > > Enbrel until the new RI plant was up and running.We sat on that > > > list > > > for 9 long months before joing the 3 yr safety study. > > > > was given a 50% chance of it working due to him being > > > systemic,luckily for us had gone 6 months with no systemic > > > symptoms.The only way for us to get Enbrel was due to entering > > > the > > > study,we had a special piece of paper with a number on it that > > > the > > > pharmacy had to call in.Nine days after the first shot > > > woke up > > > running into our room and jumping on our bed screaming it > > > doesn't > > > hurt.As far as Cincinnati was concerned he was a miricle > > > case.They > > > tapered the Motrin,took him off the Plaquenil,tapered the MTX > > > and he > > > didn't flare until our local ped rheumy took him off his 2.5mg > > > dose.A good 18 months had passed by.Just a FYI 6 months with no > > > pain,tenderness, swelling, lost range of motion and no morning > > > stifness longer then 15 minutes is called complete control, > > > after 1 > > > yr of this it is then called full remission on medication. > > > > Cincinnati Childrens has a page called Change the Outcome it > > > is > > > stories of some of their miricle patients.They picked to > > > be > > > the first JRA story and to this day still the only one.A local > > > DJ > > > who does their Children's Miricle Network Radiothon read his > > > story > > > and wanted to know if it was possible for us to do an > > > interview,we > > > live 307 miles a way.Luckily we had a month window before or > > > after > > > the last study visit to come in so it was ok. > > > > I am very happy to say that years later is back in full > > > remission on medication for another 18 months now.Even the time > > > in > > > between there wasn't much,nothing we could see,just tiny things > > > Dr.Lovell found on extensive exams. > > > > is currantly on 12.5 mg MTX subq and 32.5 mg Enbrel 1x a > > > week.He now weighs 118lbs so he could be taking 42.5mg Enbrel.In > > > April we see the rheumy and they are going to start tapering his > > > MTX > > > again. > > > > I hope your daughter has the same long term success as > > > .Sorry, known for rambeling.I just love a happy story!!! > > > > Becki and 10 1/2 systemic onset and will always be > > > labled > > > that.. > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: " deetipton@ .. " <deetipton@ ..> > > > > @group s.com > > > > Sent: Sunday, January 25, 2009 12:02:51 PM > > > > Subject: Hello! > > > > > > > > > > > > Hello! > > > > > > > > I just wanted to introduce myself. My name is le. I > > > probably > > > > won't be around often, but I will try to pop by whenever > > > possible. > > > > I have a 7 yr old, , that was diagnosed with RF positive, > > > poly- > > > > articular JRA with erythema nodosum and Raynaud's Phenomenon > > > last > > > > year. After going through a roller coaster of medicines she is > > > now > > > > taking mtx by pill once a week, and Enbrel injections twice > > > weekly. > > > > Enbrel is surely a gift from God. I also have an older > > > daughter, > > > > , who is 14, and a son, Zachary, who is almost 6. Zachy > > > has > > > > bad eczema. If it's autoimmune chances are we have it covered. > > > I > > > > work full-time, and I'm trying to get back to school. I have a > > > lot > > > > to do because I haven't been to school since 1992. My husband > > > has > > > > been ill and can't do that much physically, so I have a lot of > > > > things that he once took care of to do as well. We are alive > > > and > > > > together! That's all that matters. > > > > > > > > In trying to think of what I wish that I had known and had me > > > > lost... for those of you thinking that you may have to move to > > > > Enbrel, it is a crazy but worthwhile road. I was very worried > > > about > > > > the cost, for one thing. Enbrel isn't just a medicine- it's a > > > > system. They know that they have an amazing medicine, and they > > > can > > > > afford to help you. They have the Enbrel Quick Assist program. > > > > They fully cover your first 6 months of treatment. After that > > > they > > > > will pay half of your co-pay. The med without insurance is > > > > something like $1300, but they won't make you pay any more > > > than > > > > $120. I was very emotional about moving to it despite wanting > > > to > > > > because the MTX just wasn't doing anything anymore. The first > > > > couple of days were overwhelming. It's only available on my > > > > insurance through a specialty pharmacy. However overwhelming, > > > this > > > > was definitely one of the best decisions we've ever made. > > > Despite > > > > being another immune suppressor, hasn't been sick since > > > being > > > > on it. Before it she was sick all the time. She's gaining > > > weight > > > > finally. It's been about 2 months, and she's been declared in > > > > remission. The red in her fingers and the swelling is gone. > > > Her > > > > rheumy once took about 20 minutes looking at her fingers > > > trying to > > > > figure out why they were so bad, and now you'd never know.. > > > She's > > > > running, jumping, tackling her brother!!! And this was a child > > > that > > > > screamed when she saw a dog while we were driving, or would > > > panic > > > > and cry for an hour whenever we went to a fun place with a lot > > > of > > > > rambunctious kids running around. She's right there with them > > > now. > > > > Please, if any of you have any questions leave me a message.. > > > I > > > have > > > > learned so much, and I would love to share it. We're in a good > > > > place now, but I remember a year ago when we were soooo > > > lost... I > > > > look forward to your friendship! > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 110-120 is a good weight for 4'10 " . I am that height. When I got pregnant with my 14 yr old I only weighed 85 lbs. After her I fluctuated between 93-97 for years. Of course, now I've had 3 children and a thyroid problem. I would kill to get back to 110... > > Pam, > My Son use to be skinny as a bean pole when he was 10 thru 13 by age 14 > he was gaining weight and growing more. At 15 he was muscle bound and weighed > 175 all muscle and as the girls called it he had a 6 pack lololol. Right > before he was 17 his Metabolism kicked in and in 1 month lost 30 pounds Tests > were done as the weight loss concerned the Dr. Then she came back and told us > that his Metabolism has hit high gear and he would have to eat more to keep > weight on. Well that was many moons ago. Each child is different. Today he is > the same weight as he was when he was 17 yrs old. 145 pounds. He eats but I > think he has a bottomless pit of a tummy lololol. He is right at 6 ft tall. > Where my hubby is 6 ft 4 in tall. > on the other hand is 21 and only 4 ft 10 inches tall weight is up > and down from 110 to 120 pounds. > JA affected her growth as she has 1 leg shorter than the other. To put her > against the Family she is the shortest until she puts heels on lolol. Then I > take the name of shortest. I also have to look at my Mom who was 4 ft 8 in. She > has made up for the shortest as she got the BIGGEST mouth lololol. She can > out yell anyone here lolol. > Robbin > **************A Good Credit Score is 700 or Above. See yours in just 2 easy > steps! > (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol? redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072% 26hmpgID=62%26bcd=De > cemailfooterNO62) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 HI and welcome to the group!!!! I have been on Synthroid for 4 years and I still have not been able to stabilize my numbers, My ENDO added Cytomel and I take 5mcg,s twice a day and still have no energy like everyday, I wish you much success on your journey and the following statement is my signature, not anything to do with you.LOL, I hope you have a great day, Again, welcome to the group and have a great day. You're not entitled to pursue a relationship just because you are attracted to someone. You made a commitment to someone, and the question is do you have the integrity and self-control to come through for your Spouse? Love is a decision that you made long ago, and you are in the process of consciously choosing to destroy someone's trust and life. This isn't about what YOU should do, or what YOU feel like.... it's about what you are choosing to do TO YOUR SPOUSE... someone you chose to love and spend the rest of your life with. What does that say about you as a person if you are willing to do that to the one person you love more than anyone in the world? Not very much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 > > Hello all, I just joined this group. I am posting this just to say hello and to say that I look forward to reading more. > > I have been reading bits and pieces about alternative health care for a long time. I work as a medical transcriptionist, but am not enthusiastic about conventional medicine for degenerative diseases. +++Hello Pam. Welcome to our group. What does a medical transcriptionist do? The best to you, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Hi I just had my surgery about 3 weeks ago. Just had my first post-op visit and everything is well. The surgery lasted about 3-4 hours. My surgeon was able to remove all the c-toma and fix the drum (I had a hole as well). The surgeon cut behind my ear lobe to do his work so I’ll be left with no visible scarring. The cavity was then filled with antibacterial ointment which has just today started to breakdown and discharge from my ear. This ointment has completely muffled my hearing in that ear this whole time. The doctor suctioned quite a bit of it out today and I was glad to realize my hearing is back! I have had no pain in that area. The only discomfort has been around the ear canal which feels a bit awkward; I assume it’s from the swelling and the antibacterial ointment. I still can’t sleep on that side comfortably. I’ve had to keep cotton in my ear this whole time; changing it out every day (I was told I can stop doing this now). And I have to keep water out of my ear for at least 3 more weeks. During my pre-op visits, the surgeon told me there was a possibility of a follow up visit in approx 6 months to make sure everything was cleaned out and the c-toma hadn’t returned. But after the operation and today’s visit, he seems very sure that that won’t be necessary although there’s always still an outside chance that it could return at some point. I have a desk job. My surgery was on a Wednesday. I could have easily returned to work the following Monday but took two extra days off instead. J Having had surgeries in the past that have taken WEEKS to feel somewhat normal, I’m surprised at how different this one has been. Love wholeheartedly, be surprised, give thanks and praise--then you will discover the fullness of your life. -Brother Steindl-Rast From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of hollywood529 Sent: Monday, March 30, 2009 7:13 PM cholesteatoma Subject: Hello! Well I am new here! I came across this group looking up information on Cholesteatomas for my husband. I can't seem to find much information, or not all the information I want anyway! I was just looking for people to share their stories with me, especially about the surgery and after it. I guess I will share my husbands story. He is 27 years old and has pretty much had problems with his ears all his life. When he was a child he always got ear infections and had tubes put in 3 times and they always fell out on their own. The last time the tube in his right ear did not fall out so they had to go in and remove it. When they removed they somehow put a whole in his eardrum I believe and from their I guess he just never got it fixed! So as long as I've known him his ear always hurt him and been VERY sensitive. He couldnt hear very well out of it, and it would drain constantly a mixture of pus and wax I assume and it smelled horrible. Sometimes it would have blood in it. So for the longest time he did not have insurance which is why it never got taken care of. Finally he got insurance and I made an appt. for him right away. On the first appt. the dr. tried to clean it out with some sort of suction thing, but it hurt my husband too bad and he had to have him stop. So the dr. gave him a prescription for antibiotic eardrops and had him take those for a week. When he went back the dr. said all was looking good and the infection was clearing up. As he looked closed he told us that he saw something. He went on to tell us he knew he had a cholesteatoma. We had never heard of it, so he told us about it and gave us some info on it. They then did a hearing test on him. They then scheduled a ct scan for him, which he goes to on thursday. So i guess we wont know anymore until then. I'm very nervous for him becuase he has had this problem for so long and it had not been treated. The doctor said it can cause brain problems and things like that. I am wondering about the srgery and how long it takes and what will happen afterwards! Any responses will be apprecited! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Hi, You've certainly found a good group to touch base with. I'm so sorry that insurance was the deterrent keeping your husband from treatment, but you've done the right thing now with getting him to a doctor and getting a diagnosis. One good thing is that these lousy cholesteatomas tend to grow slowly, so we'll all hope for the best. In case you haven't come across them, here are a couple of good links to follow for some good information about the disease: http://www.nlm.nih.gov/medlineplus/ency/article/001050.htm http://www.entnet.org/HealthInformation/cholesteatoma.cfm The first one helps to get some return on all those taxes you've paid over the years. You may want to think a bit about who should do the actual surgery. If the doctor you visited is an otologist and possibly a neurotologist, you are likely in very good hands. Many of us feel strongly that the expertise is recommended. The operation itself is usually considered minor - not by any patient I've known - but the docs think that way. They'll probably tell you it will take 2 or 3 hours, but honestly - don't be surprised if it's more like 8 - especially for one that's been growing a while. My first surgery was a bit of a marathon - it was dark when we got to the hospital and dark again when my wife drove me home. The surgery is usually done on an outpatient basis - especially for adults. He will have a large bandage on his head for the first day, so make sure he has button-down clothing to go home in. It will take a good 4 days just for the anesthetic to wear off completely, but he should be able to do work after that. However, if his work involves strenuous activity, this may involve a bit of negotiation with the doc. If reconstruction of his hearing bones is involved, there will be lifting restrictions and a hold on any airplane flights for ... maybe six weeks. I've been through this three times and I had trouble with reading while I recuperated, but I enjoyed movies - so, I'd recommend lining up some good movies to pass the time. One thing I messed up was when I let myself get dehydrated, so avoid that! Have him drink ... maybe 8 ounces of water for every hour he's awake. The trips to the toilet will help work out the anesthetic. :-) Slow walks starting on the day after surgery really help as well ... but don't forget the water. There will be packing in his ear for about the first week or two, so any kind of hearing expectations won't be realized right away. The primary reason for the surgery will be a clean dry ear - then they'll see what they can do about his hearing. Many folks experience very little pain with the surgery - that's the one thing that really surprised me. May it be the same for him. All the best, Matt hollywood529 wrote: > > Well I am new here! I came across this group looking up information on > Cholesteatomas for my husband. I can't seem to find much information, > or not all the information I want anyway! I was just looking for > people to share their stories with me, especially about the surgery > and after it. I guess I will share my husbands story. He is 27 years > old and has pretty much had problems with his ears all his life. When > he was a child he always got ear infections and had tubes put in 3 > times and they always fell out on their own. The last time the tube in > his right ear did not fall out so they had to go in and remove it. > When they removed they somehow put a whole in his eardrum I believe > and from their I guess he just never got it fixed! So as long as I've > known him his ear always hurt him and been VERY sensitive. He couldnt > hear very well out of it, and it would drain constantly a mixture of > pus and wax I assume and it smelled horrible. Sometimes it would have > blood in it. So for the longest time he did not have insurance which > is why it never got taken care of. Finally he got insurance and I made > an appt. for him right away. On the first appt. the dr. tried to clean > it out with some sort of suction thing, but it hurt my husband too bad > and he had to have him stop. So the dr. gave him a prescription for > antibiotic eardrops and had him take those for a week. When he went > back the dr. said all was looking good and the infection was clearing > up. As he looked closed he told us that he saw something. He went on > to tell us he knew he had a cholesteatoma. We had never heard of it, > so he told us about it and gave us some info on it. They then did a > hearing test on him. They then scheduled a ct scan for him, which he > goes to on thursday. So i guess we wont know anymore until then. I'm > very nervous for him becuase he has had this problem for so long and > it had not been treated. The doctor said it can cause brain problems > and things like that. I am wondering about the srgery and how long it > takes and what will happen afterwards! Any responses will be apprecited! > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 I have seen materials indicating that all sphincter muscles are related to one another--the theory being that if you remediate one you affect them all. So you might want to try working with mouth (perhaps root/suck reflex) and eyes, if you're familiar with Creative Vision work of Dr. Dennison. Also, please note that all facial expressions of emotion involve sphincter muscles. http://www.nbb.cornell.edu/neurobio/land/OldStudentProjects/cs490-95to96/hjkim/emotions.html Sharon Heller, M.S.The BRAIN GYM LADY Licensed BRAIN GYM® Instructor Grow into the possibilities . . . www.sharonheller.com Official International Brain Gym® website: www.braingym.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2009 Report Share Posted May 16, 2009 Hi : Glad that you have found this group. I am fairly new as well, but have been given lots of good info. It really helps to be able to talk with others that are going through similar issues. I was just diagnosed last month with RA. I also have fibromyalgia, osteoporosis and a bunch of other ailments as well. I have been told for the past 5 years that I had arthritis and that is why my knees, wrists, and lower back always hurt..and also due to the fibro as well. However, after finally seeing a rheumatologist who ran tons of blood work, he diagnosed me with sero-negative RA. he said my blood tests did not support RA, but my MRIs, CAT scans, x-rays, signs and symptoms definitely confirmed RA. In the past I have tried Lyrica (mainly for fibro, but said it could help the RA), then Prednisone, Elavil...all with major side effects that caused me to have to stop taking them. The next med he wants me to try is going to be Neurontin. However, I am leaving Tuesday for a 9 day trip to Pennsylvania to visit a friend, so I am waiting until I return before I start anything else. I guess what I am looking for at this point is how fast does RA move? I am already limping due to my right knee really hurting bad and my lower back pain keeps me from being able to sit or stand for more than 15 mins at a time. I am always tired and for the past 6 months my eyesight has gone down the drain. My left eye is so bad that I feel that most of the time I am just using the right one. I know a lot of my symptoms can be due to the fibro, but it just seems that each day that goes by, more pain comes along. Maybe it has become psychological to me since I was finally diagnosed with RA and my pain hasn't gotten worse, but I really don't think that is the case. I am the type of person that likes to plan ahead and at this point, I don't know how to plan ahead or what to expect, just how bad will the RA become, will it take over my body, will I end up in a wheelchair...these are the kinds of questions I have bouncing around in my head. Maybe since you have dealt with RA longer than me, maybe you can give me a little insight. I truly am sorry that you have RA and everyone else on this group, but I am really glad that I have a place to go where others can relate. Welcome to the group. Hugs, On Thu, May 14, 2009 at 1:06 PM, lisareger <lisareger@...> wrote: > > Hi all! I was diagnosed with RA in 2006 (after going from doc to doc, > etc.) > > Currently on methotrexate and hoping insurance will approve Humira. > Does anyone have success with this combo? Tried a few other meds. with > no success. Have problems with larger doses of methotrexate such as > pleurisy and chest congestion. > > I am looking forward to chatting with other's who can relate to RA. > It's hard for others to understand. [] > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 Hi Susie! Thank you for your message. The good news is (and hopefully in your's as well) my progression has been slow. I do notice when it is advancing. Mine started with my fingers swanning - that was the first " outward " appearance. I was having difficulty sleeping, extreme fatigue, mild anemia and symptoms all over the board but they were having difficulty figuring it out. Finally when my fingers started swanning I was diagnosed. I take herbal supplements for help as well as methotrexate and folic acid. Currently I use B6 and just started trying Yucca supplements. The Yucca herb is supposed to help with inflammation and pain and to be honest I do think it is helping. If you need help trying to find it, please let me know. I have alot of pain in my lower back and neck. My Dr. gives me Cortisone shots occassionally and they help alot! My toes are " numb " and some days are better than others but I try to have a positive outlook. I am still able to do all my regular activities but did leave my part-time job due to the fatigue. I worked 1-3 times a week and the day after I was shot. I have four children, ages 5 through 12, so I am really busy with the houshold activities and life in general. I have tried Plaquenol and Sulfadine with no benefit. The metho. works well but does cause side effects for me. Currently my biggest issue is mouth sores (but it's worth it). The best advice I can give is " listen " to your body. We can't change the condition's we have but we can try to deal with them as best as possible. I hope this gives you a little comfort. I read alot (sometimes it's scary but everyone of us is different and it doesn't always have to be the worst case scenario). Vitamin B6 helps with fatigue-maybe you can check with your Dr. I hate always being tired!!! I hope to hear from you soon. If not, have a great trip!!!! Hugs Back! R. > > > > > Hi all! I was diagnosed with RA in 2006 (after going from doc to doc, > > etc.) > > > > Currently on methotrexate and hoping insurance will approve Humira. > > Does anyone have success with this combo? Tried a few other meds. with > > no success. Have problems with larger doses of methotrexate such as > > pleurisy and chest congestion. > > > > I am looking forward to chatting with other's who can relate to RA. > > It's hard for others to understand. [] > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Hi - I read where you are getting mouth sores from the Methotrexate. Check with your Rheumy. You may need to have your Folic Acid increased. I take 0.8 MTX injection weekly and 1mg Folic Acid on every day except the MTX day. I don't have any side effects other than about a day and a half of increased fatigue which is a lot less than when I was taking the pills.....Doreen Hi Susie! Thank you for your message. The good news is (and hopefully in your's as well) my progression has been slow. I do notice when it is advancing. Mine started with my fingers swanning - that was the first " outward " appearance. I was having difficulty sleeping, extreme fatigue, mild anemia and symptoms all over the board but they were having difficulty figuring it out. Finally when my fingers started swanning I was diagnosed. I take herbal supplements for help as well as methotrexate and folic acid. Currently I use B6 and just started trying Yucca supplements. The Yucca herb is supposed to help with inflammation and pain and to be honest I do think it is helping. If you need help trying to find it, please let me know. I have alot of pain in my lower back and neck. My Dr. gives me Cortisone shots occassionally and they help alot! My toes are " numb " and some days are better than others but I try to have a positive outlook. I am still able to do all my regular activities but did leave my part-time job due to the fatigue. I worked 1-3 times a week and the day after I was shot. I have four children, ages 5 through 12, so I am really busy with the houshold activities and life in general. I have tried Plaquenol and Sulfadine with no benefit. The metho. works well but does cause side effects for me. Currently my biggest issue is mouth sores (but it's worth it). The best advice I can give is " listen " to your body. We can't change the condition's we have but we can try to deal with them as best as possible. I hope this gives you a little comfort. I read alot (sometimes it's scary but everyone of us is different and it doesn't always have to be the worst case scenario). Vitamin B6 helps with fatigue-maybe you can check with your Dr. I hate always being tired!!! I hope to hear from you soon. If not, have a great trip!!!! Hugs Back! R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Don't worry you will do fine!! Yes it does get a little overwhelming, but you will get used to it!! As for his forehead, does he need an adjustment?? You may want to get in contact with your ortho. As for people starring, I would just look at them and ask if they had a question, or I would explain to them why my daughter was in a helmet. Most people are affraid to ask questions and they have no idea why a child would be in a helmet. K good luck. Candy From: Jake and Sydney <1hotsoccermom@...>Subject: Hello!Plagiocephaly Date: Tuesday, June 2, 2009, 12:03 PM Hi. Just wanted to take a second to introduce myself. I'm Sydney. I'm married to Jake. We have two kiddos: Beckham and Holden. Beckham is 3.5 and Holden is almost 8 months. He started StarBand on May 22nd. So far doing pretty good. Took a little getting used to. He's always got such a red/irritated looking forehead when it comes off for bath time. It's hard getting used to people that look/stare at us without bothering to comment or even take 2 seconds to ask about the helmet... doesn't bother my hubby, but I have a hard time with it. We're planning for 4 months with the helmet. My hubby leaves for Basic Training on the 16th of this month, so once he's gone, it's just me and the boys. I am SO freakin' out that I'll forget to take it off for an hour, or, heaven forbid, forget to put it back on after bath time. lol My hubby is usually the one that takes care of it. Can't wait to get to know everybody here! I am sure I'll start posting questions soon. With my first being "What on earth to do regarding the stinky feet smell?!" LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2009 Report Share Posted July 15, 2009 > I hope you are all doing well. It looks rather quiet in my inbox so seems > like I am not missing much other than flooding you all with my own > bantering. Banter away! Lists as usually quieter in summer, and here in the east coast we're finally enjoying more summer-like weather with real sunshine so people are trying to get outside more. Heck, I'm gonna try talk Ed into a walk after dinner if my foot feels up to it. He'll moan and groan, but if I offer to walk to the library he may go for it. > DS16 got his learner's permit Thursday and we're on the road to learning to > drive teenage style (Oh.My.Gosh can you say stress? LOL!!) Oh, yeah! Now that Henry is driving more on his own his skills have greatly improved, but he still doesn't drive like *I* would, so of course I'm your typical back-seat driver when he's at the wheel. One day he threatened to stop the car and set me out on the sidewalk a few blocks from home if I didn't shut up about the way he drove. Since my foot was throbbing particularly bad that day I found it better to zip my lip than nag on any more. > Mom had her 2 week post-op Friday and can " quit " PT when she wants and can > " start " driving when she wants (her doctor's words LOL) Great news, for both of you. > Work: I get an interview for the promotion I applied for! Yippee!! > It's been a long process (test was on what, June 17th??) Who was it that was going for a job at a sherrif's office from this list? I think start to finish the process took almost 9 months. Now talk about nerve wracking! so I will be 1 of 3 interviewees on Monday. > YIKES!! I don't know if they will then decide next week or go to 2nd > interviews. Remind us Sunday so we can all send good vibrations your way on Monday. > Diet-wise, I am holding fairly steady and exercise-wise am side-lined with > " only " walking for right now. I wrote about my new routine in my reply to Sapphyre's post. I can't wait until I can get walking again. Maybe by the time the cooler weather starts rolling in I'll be able to invest in a pair of good walking shoes and even get outside walking in again. I don't mean a 20 minute stroll, but those multi-mile walks I used to do about 20 years ago before I had the asthma attack miles from home. I would *love* to be able to do that again. I think when I try to move past the 12K > distance that I know I can go relatively injury-free is when my knee really > starts tweaking and speaking to me, so I really need to hold off in upping the > ante until I lose a little more weight. My knees aren't bad for walking, just the feet. OK, the arthritic hip, too. But like you, weight loss should make many of those problems go away or at least lessen greatly. > Thanks for the thoughts and prayers for everything. I'll get back on here > as time allows in the next week. Just keep us up to date on the interview, and keep a rosary in your pocket when out with DS driving. LOL Sue in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Hi Ed Wow, and good for you, is all I can say. I myself am a newbie to HCV, diagnosed 2008. I have never done TX. I am a 1B geno, VL 551K, all labs pretty good. I am doing diet and sups to slow progression. Please tell us what alternative stuff you do...diet, sups, other. Any suggestions would be helpful. love don in ks From: Ed S <edstewart1@...>Subject: [ ] Hello! Date: Monday, November 2, 2009, 9:12 PM Hi everyone I am a new member. My name is Ed and I have been the whole route with hep_c. I was diagnosed in March 1995 and my first biospy showed my liver to be 92% gone. I received a liver transplant in Jan. 1996 and have been doing quite well since. I have been on treatment 3 times in the past 14 years and none of them have worked for very long Interferon and amantadine, interferon and ribovirian, Pegatron and riboviran whick worked well till it dang near killed and was switched to pegasis and I quit responding. Since then it has been the alternate, my viral load has went up and now it is down near normal, a biospy showed my liver to be in very good shape for being in me for almost 14 years. I am genotype 1. Ed------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Wow EdYou've got a lot to teach us probably!! Welcome to the site!!I'm on my second treatment and this one is a clinical trial of the Trio. As I've told most people, if treatment doesn't work this time, then I'm all done. Of course, they ask about a Liver Transplant and my answer - what good is a new liver going to do me if I can't get rid of the virus that's doing all this damage?? Good news though - my last blood work showed that I was HCV-DNA negative. So at least at that level I've gone negative so it's really built my hope up.I'll be finished this trial on Jan 15th and then my gastro wants me back in the clinic promptly for an CT Scan on my liver. They have found two tumours that of course could be very indicative of HCC.Gloria Hi everyone I am a new member. My name is Ed and I have been the whole route with hep_c. I was diagnosed in March 1995 and my first biospy showed my liver to be 92% gone. I received a liver transplant in Jan. 1996 and have been doing quite well since. I have been on treatment 3 times in the past 14 years and none of them have worked for very long Interferon and amantadine, interferon and ribovirian, Pegatron and riboviran whick worked well till it dang near killed and was switched to pegasis and I quit responding. Since then it has been the alternate, my viral load has went up and now it is down near normal, a biospy showed my liver to be in very good shape for being in me for almost 14 years. I am genotype 1. Ed Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2009 Report Share Posted December 7, 2009 Hi Vicky, Yes, you should feel normal again once they find the " coctail " that works for you and it may take a little while till you find that. Yes, you will be on meds for the rest of your life unless they find a cure (yeah, right) HOWEVER, once you find what works for you and you go through the fear/anger stage that you seem to be in right now, it's really not too bad. There are alot of other diseases out there that I am thankful that I do not have, I'll take this cross. Yes, there are flares occasionally and pain occasionally but that's life. I hope this helps you somehow. I was diagnosed 10 years ago and thought it was the end of the world but it wasn't and life isn't too bad right now (now if my college educated son could only find a job, life would really be rosey). in PA [ ] hello! Hello all. My name is vicky I am 24 and I was recently diagnosed with RA and it has scared be to death because it was found by a positive ANA and my aunt died recently of complications from lupus and RA. I have swelling and severe pain and stiffness in my hands and knees, I also have problems with my neck which they say may be degenerative disc disease. I am currently on 10mg of methotrexate, 200mg of plaquel, Tapering down on prednisone down to 5mg thank goodness and 75mg of diclofenac twice a day! I am feeling about 40 percent better. Am I ever going to feel normal again? Am I ever going to be able to not take all these meds? Please someone who has been in my shoes help! Quote Link to comment Share on other sites More sharing options...
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