Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 it is not too late!!! our ds did not get his band until he was 9 months old and we saw great improvement. we are in our 2nd band now. don't wait any longer - in my opinion - you should just start the procedure and get going. it isn't too late - but don't wait any longer. we wish we had started sooner too - but we were naive as well and trusting our ped who said wait and see. it's so hard when you feel you have let your child down before they are even one - but you haven't - there is still plenty of room for improvement!!!! good luck and feel free to email me anytime with questions about banding an older baby!! ~jen > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 it is not too late!!! our ds did not get his band until he was 9 months old and we saw great improvement. we are in our 2nd band now. don't wait any longer - in my opinion - you should just start the procedure and get going. it isn't too late - but don't wait any longer. we wish we had started sooner too - but we were naive as well and trusting our ped who said wait and see. it's so hard when you feel you have let your child down before they are even one - but you haven't - there is still plenty of room for improvement!!!! good luck and feel free to email me anytime with questions about banding an older baby!! ~jen > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Welcome to the group, . I see that you've already received some good information. It is not too late for you. Don't beat yourself up either, most of us never knew that this could happen. Natasha Atlanta, GA > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Welcome to the group, . I see that you've already received some good information. It is not too late for you. Don't beat yourself up either, most of us never knew that this could happen. Natasha Atlanta, GA > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi , It's not too late for your daughter. I have a brachy baby too who just turned 9 months and is in his 2nd week in a DOCband. You can see pics of him in the T. folder in Our Plagio kids in the photo section to see how flat his head was. I say was because in just 2 weeks we've seen improvement already. The back of his head is already starting to round out a bit. There are allot of older babies in this group that got wonderful correction. I'm sure they'll all chime in. My son doesn't crawl either and his head is big also. He cries terribly when we tried tummy time so we didn't bother too much with it not even thinking that it would result in him getting plagio. Repo was not an option for us because I didn't even know what plagio was till I started researching and found this group when my son was 6 months old. You've come to the right place for sure and I'm sure people on this board will guide you in the right direction...... Welcome!! :-) Manon Mom to T. brachy/mild plagio/DOCband 8-01 land --- Soler <pennadutchgirl@...> wrote: > Hi. > My daughter Liliana is 10 1/2 months old. The back > of her head is very > flat all the way across. Her pediatrician says her > head won't round > out and that it's too late for banding. We tried > repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says > this is not related > to plagio, but the fact that her head is larger than > average for her > body. > > Around six months she had a CT scan and it ruled out > craniosynistosis > and torticollis but the neuro did say the flatness > was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm > scheduling another > appointment with a neurologist to make sure there's > nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my > daughter's head go flat. I > tried repositioning, but I can't say I was > aggressive with my efforts. > I didn't force tummy time because she cried > inconsolably, to the point > of falling asleep, even when I was doing it for 5 > minute increments at > a time. > > I am glad there are other babies out there with > plagio. I am worried > that she will be made fun of in school. With baby > #2, we will do much > more tummy time, but how do I explain to my daughter > that I just > didn't know enough when she was an infant? I heard > " back to sleep, > tummy to play " but didn't realize that tummy time is > to prevent > flattening as much as it is for developing upper > body strength. > > Thanks for having a support group to help us > out. > ~ > > > > > > ____________________________________________________ Start your day with - make it your home page http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi , It's not too late for your daughter. I have a brachy baby too who just turned 9 months and is in his 2nd week in a DOCband. You can see pics of him in the T. folder in Our Plagio kids in the photo section to see how flat his head was. I say was because in just 2 weeks we've seen improvement already. The back of his head is already starting to round out a bit. There are allot of older babies in this group that got wonderful correction. I'm sure they'll all chime in. My son doesn't crawl either and his head is big also. He cries terribly when we tried tummy time so we didn't bother too much with it not even thinking that it would result in him getting plagio. Repo was not an option for us because I didn't even know what plagio was till I started researching and found this group when my son was 6 months old. You've come to the right place for sure and I'm sure people on this board will guide you in the right direction...... Welcome!! :-) Manon Mom to T. brachy/mild plagio/DOCband 8-01 land --- Soler <pennadutchgirl@...> wrote: > Hi. > My daughter Liliana is 10 1/2 months old. The back > of her head is very > flat all the way across. Her pediatrician says her > head won't round > out and that it's too late for banding. We tried > repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says > this is not related > to plagio, but the fact that her head is larger than > average for her > body. > > Around six months she had a CT scan and it ruled out > craniosynistosis > and torticollis but the neuro did say the flatness > was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm > scheduling another > appointment with a neurologist to make sure there's > nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my > daughter's head go flat. I > tried repositioning, but I can't say I was > aggressive with my efforts. > I didn't force tummy time because she cried > inconsolably, to the point > of falling asleep, even when I was doing it for 5 > minute increments at > a time. > > I am glad there are other babies out there with > plagio. I am worried > that she will be made fun of in school. With baby > #2, we will do much > more tummy time, but how do I explain to my daughter > that I just > didn't know enough when she was an infant? I heard > " back to sleep, > tummy to play " but didn't realize that tummy time is > to prevent > flattening as much as it is for developing upper > body strength. > > Thanks for having a support group to help us > out. > ~ > > > > > > ____________________________________________________ Start your day with - make it your home page http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hello I am new to the group, my son is now 8 months and had his helmet (I have to find out what type it is) for 7 weeks. We had tried the repositioning, but nothing worked. Our doctor kept telling us that is would grow out. I finally was able to see a neurosurgeon (a neurologist thought that the back was already fused, it wasn't), and he took one look at and said he needed a helmet. He is a great doctor! He helped us with our insurance who is paying for the whole thing (except a $250 co pay!). The orthotist is a wonderful doctor who is great with kids. We live close (only 20 min drive), so going there every 3 weeks isn't bad at all. I didn't realize we were this lucky to have someone this close. It isn't too late trying the helmet, was almost 7 months and only after 2 weeks, we could see a huge difference. So, try a neurosurgeon, they are the ones who, I think, have more experience with this. We think that needs to wear till the end of year, and I am looking forward when it's gone. In the mean time. He doesn't mind wearing. We had a good schedule at the beginning: 1 hour on, 1 hour off the first day, no naps with helmet. Second day: 2 hours on, 1 hours off, still not sleeping with it. On the third day he slept with it, and didn't care at all. He has been wearing it for 23 hours ever since. He plagio is severe according to the neurosurgeon, and he was impressed by how much better it already looked when we saw him 2 weeks ago (after 5 weeks in the helmet). I will try to find out what kind of helmet/band he has. It does look very good, he has trains and airplanes and trucks on it. Rosel Kirkville New York 8 months Hannah 5 yearsManon <jeffandmanon@...> wrote: Hi ,It's not too late for your daughter. I have a brachybaby too who just turned 9 months and is in his 2ndweek in a DOCband. You can see pics of him in the T. folder in Our Plagio kids in the photosection to see how flat his head was. I say wasbecause in just 2 weeks we've seen improvementalready. The back of his head is already starting toround out a bit. There are allot of older babies inthis group that got wonderful correction. I'm surethey'll all chime in. My son doesn't crawl either andhis head is big also. He cries terribly when we triedtummy time so we didn't bother too much with it noteven thinking that it would result in him gettingplagio. Repo was not an option for us because Ididn't even know what plagio was till I startedresearching and found this group when my son was 6months old.You've come to the right place for sure and I'm surepeople on this board will guide you in the rightdirection......Welcome!! :-)ManonMom to T.brachy/mild plagio/DOCband 8-01land--- Soler <pennadutchgirl@...> wrote:> Hi.> My daughter Liliana is 10 1/2 months old. The back> of her head is very> flat all the way across. Her pediatrician says her> head won't round> out and that it's too late for banding. We tried> repositioning at 4 to> 6 months but it didn't work. > > She's not crawling yet but the pediatrician says> this is not related> to plagio, but the fact that her head is larger than> average for her> body. > > Around six months she had a CT scan and it ruled out> craniosynistosis> and torticollis but the neuro did say the flatness> was "fairly> significant."> > Upon recommendation from her pediatrician, I'm> scheduling another> appointment with a neurologist to make sure there's> nothing medically> preventing her from crawling at this point.> > Right now I feel so terrible for letting my> daughter's head go flat. I> tried repositioning, but I can't say I was> aggressive with my efforts.> I didn't force tummy time because she cried> inconsolably, to the point> of falling asleep, even when I was doing it for 5> minute increments at> a time.> > I am glad there are other babies out there with> plagio. I am worried> that she will be made fun of in school. With baby> #2, we will do much> more tummy time, but how do I explain to my daughter> that I just> didn't know enough when she was an infant? I heard> "back to sleep,> tummy to play" but didn't realize that tummy time is> to prevent> flattening as much as it is for developing upper> body strength.> > Thanks for having a support group to help us> out.> ~> > > > > > ____________________________________________________Start your day with - make it your home page http://www./r/hs __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hello I am new to the group, my son is now 8 months and had his helmet (I have to find out what type it is) for 7 weeks. We had tried the repositioning, but nothing worked. Our doctor kept telling us that is would grow out. I finally was able to see a neurosurgeon (a neurologist thought that the back was already fused, it wasn't), and he took one look at and said he needed a helmet. He is a great doctor! He helped us with our insurance who is paying for the whole thing (except a $250 co pay!). The orthotist is a wonderful doctor who is great with kids. We live close (only 20 min drive), so going there every 3 weeks isn't bad at all. I didn't realize we were this lucky to have someone this close. It isn't too late trying the helmet, was almost 7 months and only after 2 weeks, we could see a huge difference. So, try a neurosurgeon, they are the ones who, I think, have more experience with this. We think that needs to wear till the end of year, and I am looking forward when it's gone. In the mean time. He doesn't mind wearing. We had a good schedule at the beginning: 1 hour on, 1 hour off the first day, no naps with helmet. Second day: 2 hours on, 1 hours off, still not sleeping with it. On the third day he slept with it, and didn't care at all. He has been wearing it for 23 hours ever since. He plagio is severe according to the neurosurgeon, and he was impressed by how much better it already looked when we saw him 2 weeks ago (after 5 weeks in the helmet). I will try to find out what kind of helmet/band he has. It does look very good, he has trains and airplanes and trucks on it. Rosel Kirkville New York 8 months Hannah 5 yearsManon <jeffandmanon@...> wrote: Hi ,It's not too late for your daughter. I have a brachybaby too who just turned 9 months and is in his 2ndweek in a DOCband. You can see pics of him in the T. folder in Our Plagio kids in the photosection to see how flat his head was. I say wasbecause in just 2 weeks we've seen improvementalready. The back of his head is already starting toround out a bit. There are allot of older babies inthis group that got wonderful correction. I'm surethey'll all chime in. My son doesn't crawl either andhis head is big also. He cries terribly when we triedtummy time so we didn't bother too much with it noteven thinking that it would result in him gettingplagio. Repo was not an option for us because Ididn't even know what plagio was till I startedresearching and found this group when my son was 6months old.You've come to the right place for sure and I'm surepeople on this board will guide you in the rightdirection......Welcome!! :-)ManonMom to T.brachy/mild plagio/DOCband 8-01land--- Soler <pennadutchgirl@...> wrote:> Hi.> My daughter Liliana is 10 1/2 months old. The back> of her head is very> flat all the way across. Her pediatrician says her> head won't round> out and that it's too late for banding. We tried> repositioning at 4 to> 6 months but it didn't work. > > She's not crawling yet but the pediatrician says> this is not related> to plagio, but the fact that her head is larger than> average for her> body. > > Around six months she had a CT scan and it ruled out> craniosynistosis> and torticollis but the neuro did say the flatness> was "fairly> significant."> > Upon recommendation from her pediatrician, I'm> scheduling another> appointment with a neurologist to make sure there's> nothing medically> preventing her from crawling at this point.> > Right now I feel so terrible for letting my> daughter's head go flat. I> tried repositioning, but I can't say I was> aggressive with my efforts.> I didn't force tummy time because she cried> inconsolably, to the point> of falling asleep, even when I was doing it for 5> minute increments at> a time.> > I am glad there are other babies out there with> plagio. I am worried> that she will be made fun of in school. With baby> #2, we will do much> more tummy time, but how do I explain to my daughter> that I just> didn't know enough when she was an infant? I heard> "back to sleep,> tummy to play" but didn't realize that tummy time is> to prevent> flattening as much as it is for developing upper> body strength.> > Thanks for having a support group to help us> out.> ~> > > > > > ____________________________________________________Start your day with - make it your home page http://www./r/hs __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2005 Report Share Posted August 13, 2005 Hi . I'm pretty new here too- my heart broke (and can also completely commiserate) with how you feel on the " prevention " end of it. I just didn't get how important it was (probably even more so with my son since he was born 5 weeks early) I heard the tummy to play thing too- and saw it more as a recommendation but that if they protested loads, like my son & sounds like Liliana did, that you just let them alone- I'm vowing to be oh-so-better and vigilant with a second baby whenever that happens- but unfortunately for our kids (and it seems many, many, many other kids out there) it's already done. The best reassurance I've received was someone telling me that I'm a good mom because I'm doing the best I can for my baby now- and that as soon as I realized what was happening I started acting on it- and it sounds like you've done that, too. So I want to commend you for responding and actively seeking a way to help your daughter. You're a good mom, . Hang in there, we'll all get through this together Lynn mom to Dylan, 5 mo. (about to start process) Indiana > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2005 Report Share Posted August 13, 2005 Hi . I'm pretty new here too- my heart broke (and can also completely commiserate) with how you feel on the " prevention " end of it. I just didn't get how important it was (probably even more so with my son since he was born 5 weeks early) I heard the tummy to play thing too- and saw it more as a recommendation but that if they protested loads, like my son & sounds like Liliana did, that you just let them alone- I'm vowing to be oh-so-better and vigilant with a second baby whenever that happens- but unfortunately for our kids (and it seems many, many, many other kids out there) it's already done. The best reassurance I've received was someone telling me that I'm a good mom because I'm doing the best I can for my baby now- and that as soon as I realized what was happening I started acting on it- and it sounds like you've done that, too. So I want to commend you for responding and actively seeking a way to help your daughter. You're a good mom, . Hang in there, we'll all get through this together Lynn mom to Dylan, 5 mo. (about to start process) Indiana > Hi. > My daughter Liliana is 10 1/2 months old. The back of her head is very > flat all the way across. Her pediatrician says her head won't round > out and that it's too late for banding. We tried repositioning at 4 to > 6 months but it didn't work. > > She's not crawling yet but the pediatrician says this is not related > to plagio, but the fact that her head is larger than average for her > body. > > Around six months she had a CT scan and it ruled out craniosynistosis > and torticollis but the neuro did say the flatness was " fairly > significant. " > > Upon recommendation from her pediatrician, I'm scheduling another > appointment with a neurologist to make sure there's nothing medically > preventing her from crawling at this point. > > Right now I feel so terrible for letting my daughter's head go flat. I > tried repositioning, but I can't say I was aggressive with my efforts. > I didn't force tummy time because she cried inconsolably, to the point > of falling asleep, even when I was doing it for 5 minute increments at > a time. > > I am glad there are other babies out there with plagio. I am worried > that she will be made fun of in school. With baby #2, we will do much > more tummy time, but how do I explain to my daughter that I just > didn't know enough when she was an infant? I heard " back to sleep, > tummy to play " but didn't realize that tummy time is to prevent > flattening as much as it is for developing upper body strength. > > Thanks for having a support group to help us out. > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 , Welcome...I was dx'd about 3 yrs ago now. I was on 5mg prednisone, MTX(pills and then injectable), folic acid and Leukovorin(super potent form of folic acid). Unfortunately the MTX was a real problem for me and due to many side effects some of which were serious I could not continue the drug. I did not see a lot of improvement while on it, though it was hard to tell due to all the side effects. I was on it for almost 9 months. Prednisone was great at first but again I started getting some side effects and it was stopped as well. Plaquinil is the only one I have not taken due to drug allergy. So I can't offer any experiences there. I have been told you need baseline eye exam before starting it and eye exams every six months to make sure you are not getting eye problems(a side effect) that some people can get from long term use of the drug. I know my rheummy at the time made me get TB test and chest Xray before I started MTX because it can cause lung problems for some people. Which I was one of those and ended up with drug induced pneumonitis. I have also been on Arava and Enbrel. Arava was fine no problems but my rheummy does not like the drug because it is so hard on the liver. Enbrel worked great at first and then stopped working. I also started having reactions to it about the time it stopped being as effective. Currently I am on Antibiotic Protocol and I am taking Doxycycline. Its too early to tell if this is going to work. I started it about two months ago but got a major increase in the amount of pain so my new rheummy decreased the dose. I do know that my sed rate is the lowiest that it has ever been since my DX. He says that is great even though I don't feel like there has been any improvement. The good thing is so far AP is the least harsh treatment I have been on. I have a very sensitive stomach made even more sensitive by the fact that I am post op weight loss patient as well. I think it is hard for some to find the right combo of meds. I know many here have been on the same med from day one for many years and it works great. Unfortunate my body seems to either get immune or reject the drug after awhile and it no longer works. I do know that right now this is the least amount of meds I have ever been on and its great!!! Its better for me financially as well as I feel clearer and not so drugged up. LOL Toni in Texas In a message dated 8/23/05 5:07:45 A.M. Central Daylight Time, writes: Date: Tue, 23 Aug 2005 02:18:55 -0000 From: " jhawkot87 " <Kks662@...> Subject: New to group Hi, I am a newbie to this group. I'm 41 and was recently diagnosed with RA (seronegative, for what it's worth). It mostly affects my hands and feet. My doctor has started me on the standard protocol - low dose prednisone, metho, plaquenil and folic acid. I also take Ibu secondary to recent knee surgery. I have been on meds for approximately 5 weeks - doc says it will take a couple months for them to really start working, but already I notice a significant decrease in pain (probably mostly due to the prednisone?). I know everyone responds differently to meds, but am interested if many/any of you on this same protocol have had success with it. I'm sure I will have a lot more questions over time and I appreciate all the great resources I have already found from this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 , Welcome...I was dx'd about 3 yrs ago now. I was on 5mg prednisone, MTX(pills and then injectable), folic acid and Leukovorin(super potent form of folic acid). Unfortunately the MTX was a real problem for me and due to many side effects some of which were serious I could not continue the drug. I did not see a lot of improvement while on it, though it was hard to tell due to all the side effects. I was on it for almost 9 months. Prednisone was great at first but again I started getting some side effects and it was stopped as well. Plaquinil is the only one I have not taken due to drug allergy. So I can't offer any experiences there. I have been told you need baseline eye exam before starting it and eye exams every six months to make sure you are not getting eye problems(a side effect) that some people can get from long term use of the drug. I know my rheummy at the time made me get TB test and chest Xray before I started MTX because it can cause lung problems for some people. Which I was one of those and ended up with drug induced pneumonitis. I have also been on Arava and Enbrel. Arava was fine no problems but my rheummy does not like the drug because it is so hard on the liver. Enbrel worked great at first and then stopped working. I also started having reactions to it about the time it stopped being as effective. Currently I am on Antibiotic Protocol and I am taking Doxycycline. Its too early to tell if this is going to work. I started it about two months ago but got a major increase in the amount of pain so my new rheummy decreased the dose. I do know that my sed rate is the lowiest that it has ever been since my DX. He says that is great even though I don't feel like there has been any improvement. The good thing is so far AP is the least harsh treatment I have been on. I have a very sensitive stomach made even more sensitive by the fact that I am post op weight loss patient as well. I think it is hard for some to find the right combo of meds. I know many here have been on the same med from day one for many years and it works great. Unfortunate my body seems to either get immune or reject the drug after awhile and it no longer works. I do know that right now this is the least amount of meds I have ever been on and its great!!! Its better for me financially as well as I feel clearer and not so drugged up. LOL Toni in Texas In a message dated 8/23/05 5:07:45 A.M. Central Daylight Time, writes: Date: Tue, 23 Aug 2005 02:18:55 -0000 From: " jhawkot87 " <Kks662@...> Subject: New to group Hi, I am a newbie to this group. I'm 41 and was recently diagnosed with RA (seronegative, for what it's worth). It mostly affects my hands and feet. My doctor has started me on the standard protocol - low dose prednisone, metho, plaquenil and folic acid. I also take Ibu secondary to recent knee surgery. I have been on meds for approximately 5 weeks - doc says it will take a couple months for them to really start working, but already I notice a significant decrease in pain (probably mostly due to the prednisone?). I know everyone responds differently to meds, but am interested if many/any of you on this same protocol have had success with it. I'm sure I will have a lot more questions over time and I appreciate all the great resources I have already found from this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Welcome , Wow, are stories are very similar. I was diagnosed last year at 38 and those are the exact same drugs I was started on. I have Sjogren's syndrome as well do you? That is the dry eyes, dry mouth thing. Anyway, the MTX and Prednisone worked wonders for me and now I am actually trying to taper the Prednisone as I started Humira a few months back and that really improved things. I sort of leveled off on the folic acid, MTX and Plaquenil so I ditched the Plaquenil as it gave me wicked headaches and was not helping at all I did not think. Some people it works on, some it does not. The MTX does not bother me at all and helps a lot. It also works well in conjunction with my Humira injections. I have seronegative RA as well which is harder to diagnose so we are lucky to be diagnosed I have found. I did win my disability back in May which was a real plus. I started the Humira because I progressed to a certain point and then leveled off and no longer improved so I decided to try the biologic Humira. I love it. It has totally changed my life and I want to come off the Prednisone because of the weight gain and other long- term side effects it can have. Anytime you need to chat or anything feel free to email me at the address or at tracierae@.... I love new friends, especially from the RA group:o) The folic acid is wicked cheap. The other med that does the same thing the Glucovor or Leukovor or whatever the heck it is called is way more expensive so since the folic acid works, I don't mind popping another pill once a day rather than once a week. I am not sure about you, but even with a prescription card the copays can be ridiculous. Well, sorry I rambled on so. My symptoms are worst in my feet as well and I had knee surgery one year ago too! My hands and wrists are bad as well as my shoulders. They are doing better than before though, I have to admit. I was at a very low point when I was first diagnosed and this group saved my butt so to speak so you have definitely come to the right place! Good luck! Tracie in Maine > Hi, > I am a newbie to this group. I'm 41 and was recently diagnosed > with RA (seronegative, for what it's worth). It mostly affects my > hands and feet. My doctor has started me on the standard protocol - > low dose prednisone, metho, plaquenil and folic acid. I also take Ibu > secondary to recent knee surgery. I have been on meds for > approximately 5 weeks - doc says it will take a couple months for them > to really start working, but already I notice a significant decrease in > pain (probably mostly due to the prednisone?). I know everyone responds > differently to meds, but am interested if many/any of you on this same > protocol have had success with it. I'm sure I will have a lot more > questions over time and I appreciate all the great resources I have > already found from this group. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Welcome , Wow, are stories are very similar. I was diagnosed last year at 38 and those are the exact same drugs I was started on. I have Sjogren's syndrome as well do you? That is the dry eyes, dry mouth thing. Anyway, the MTX and Prednisone worked wonders for me and now I am actually trying to taper the Prednisone as I started Humira a few months back and that really improved things. I sort of leveled off on the folic acid, MTX and Plaquenil so I ditched the Plaquenil as it gave me wicked headaches and was not helping at all I did not think. Some people it works on, some it does not. The MTX does not bother me at all and helps a lot. It also works well in conjunction with my Humira injections. I have seronegative RA as well which is harder to diagnose so we are lucky to be diagnosed I have found. I did win my disability back in May which was a real plus. I started the Humira because I progressed to a certain point and then leveled off and no longer improved so I decided to try the biologic Humira. I love it. It has totally changed my life and I want to come off the Prednisone because of the weight gain and other long- term side effects it can have. Anytime you need to chat or anything feel free to email me at the address or at tracierae@.... I love new friends, especially from the RA group:o) The folic acid is wicked cheap. The other med that does the same thing the Glucovor or Leukovor or whatever the heck it is called is way more expensive so since the folic acid works, I don't mind popping another pill once a day rather than once a week. I am not sure about you, but even with a prescription card the copays can be ridiculous. Well, sorry I rambled on so. My symptoms are worst in my feet as well and I had knee surgery one year ago too! My hands and wrists are bad as well as my shoulders. They are doing better than before though, I have to admit. I was at a very low point when I was first diagnosed and this group saved my butt so to speak so you have definitely come to the right place! Good luck! Tracie in Maine > Hi, > I am a newbie to this group. I'm 41 and was recently diagnosed > with RA (seronegative, for what it's worth). It mostly affects my > hands and feet. My doctor has started me on the standard protocol - > low dose prednisone, metho, plaquenil and folic acid. I also take Ibu > secondary to recent knee surgery. I have been on meds for > approximately 5 weeks - doc says it will take a couple months for them > to really start working, but already I notice a significant decrease in > pain (probably mostly due to the prednisone?). I know everyone responds > differently to meds, but am interested if many/any of you on this same > protocol have had success with it. I'm sure I will have a lot more > questions over time and I appreciate all the great resources I have > already found from this group. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 I also am a newbie to this group. Please let me know what seronegative means. Are the hands and feet typical of areas effected by RA? I also have osteo so I don't know which is causing what ache. This seems to be a good group. jhawkot87 <Kks662@...> wrote: Hi, I am a newbie to this group. I'm 41 and was recently diagnosed with RA (seronegative, for what it's worth). It mostly affects my hands and feet. My doctor has started me on the standard protocol - low dose prednisone, metho, plaquenil and folic acid. I also take Ibu secondary to recent knee surgery. I have been on meds for approximately 5 weeks - doc says it will take a couple months for them to really start working, but already I notice a significant decrease in pain (probably mostly due to the prednisone?). I know everyone responds differently to meds, but am interested if many/any of you on this same protocol have had success with it. I'm sure I will have a lot more questions over time and I appreciate all the great resources I have already found from this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 I also am a newbie to this group. Please let me know what seronegative means. Are the hands and feet typical of areas effected by RA? I also have osteo so I don't know which is causing what ache. This seems to be a good group. jhawkot87 <Kks662@...> wrote: Hi, I am a newbie to this group. I'm 41 and was recently diagnosed with RA (seronegative, for what it's worth). It mostly affects my hands and feet. My doctor has started me on the standard protocol - low dose prednisone, metho, plaquenil and folic acid. I also take Ibu secondary to recent knee surgery. I have been on meds for approximately 5 weeks - doc says it will take a couple months for them to really start working, but already I notice a significant decrease in pain (probably mostly due to the prednisone?). I know everyone responds differently to meds, but am interested if many/any of you on this same protocol have had success with it. I'm sure I will have a lot more questions over time and I appreciate all the great resources I have already found from this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 I also am a newbie to this group. Please let me know what seronegative means. Are the hands and feet typical of areas effected by RA? I also have osteo so I don't know which is causing what ache. This seems to be a good group. jhawkot87 <Kks662@...> wrote: Hi, I am a newbie to this group. I'm 41 and was recently diagnosed with RA (seronegative, for what it's worth). It mostly affects my hands and feet. My doctor has started me on the standard protocol - low dose prednisone, metho, plaquenil and folic acid. I also take Ibu secondary to recent knee surgery. I have been on meds for approximately 5 weeks - doc says it will take a couple months for them to really start working, but already I notice a significant decrease in pain (probably mostly due to the prednisone?). I know everyone responds differently to meds, but am interested if many/any of you on this same protocol have had success with it. I'm sure I will have a lot more questions over time and I appreciate all the great resources I have already found from this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 I also am a newbie to this group. Please let me know what seronegative means. Are the hands and feet typical of areas effected by RA? I also have osteo so I don't know which is causing what ache. This seems to be a good group. jhawkot87 <Kks662@...> wrote: Hi, I am a newbie to this group. I'm 41 and was recently diagnosed with RA (seronegative, for what it's worth). It mostly affects my hands and feet. My doctor has started me on the standard protocol - low dose prednisone, metho, plaquenil and folic acid. I also take Ibu secondary to recent knee surgery. I have been on meds for approximately 5 weeks - doc says it will take a couple months for them to really start working, but already I notice a significant decrease in pain (probably mostly due to the prednisone?). I know everyone responds differently to meds, but am interested if many/any of you on this same protocol have had success with it. I'm sure I will have a lot more questions over time and I appreciate all the great resources I have already found from this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Welcome, Maggie! In the case of rheumatoid arthritis, seronegative means that the test for the rheumatoid factor (RF) is negative. Yes, it is typical for the hands and feet to be affected by RA. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] New to group >I also am a newbie to this group. Please let me know what seronegative >means. > > Are the hands and feet typical of areas effected by RA? > > I also have osteo so I don't know which is causing what ache. > > This seems to be a good group. > > jhawkot87 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Welcome, Maggie! In the case of rheumatoid arthritis, seronegative means that the test for the rheumatoid factor (RF) is negative. Yes, it is typical for the hands and feet to be affected by RA. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] New to group >I also am a newbie to this group. Please let me know what seronegative >means. > > Are the hands and feet typical of areas effected by RA? > > I also have osteo so I don't know which is causing what ache. > > This seems to be a good group. > > jhawkot87 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hey Jessi, I would like to welcome you to the group. Sorry about your diagnose of RA, but you have come to the right place. What type of meds are you on? It will be so nice to know more about you,.....Tawny > Hello. My name is and I am 24 yrs old. I was diagnosed with > Rheumatoid Arthritis about 10 months ago, finally. Dealt with the > pain, off and on, for over a year. When one morning I woke up and felt > like I had fell from a plane, couldnt ignore the pain anymore. I am a > very active person, so this hit me pretty hard. So glad I found this > support group. Nice to know there are other people out there to talk > to who understand exactly what you are going through. > > Jessi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hey Jessi, I would like to welcome you to the group. Sorry about your diagnose of RA, but you have come to the right place. What type of meds are you on? It will be so nice to know more about you,.....Tawny > Hello. My name is and I am 24 yrs old. I was diagnosed with > Rheumatoid Arthritis about 10 months ago, finally. Dealt with the > pain, off and on, for over a year. When one morning I woke up and felt > like I had fell from a plane, couldnt ignore the pain anymore. I am a > very active person, so this hit me pretty hard. So glad I found this > support group. Nice to know there are other people out there to talk > to who understand exactly what you are going through. > > Jessi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Jessi, I am so sorry that you got RA at such a young age. I was fortunate enough to wait until I was sixty (six years ago) to get it. There are a number of new drugs that can prevent joint damage, so that we don't have to develop deformities if our doctors find the right combination of medications for us. I hope that you are going to a rheumatologist who will treat it aggressively from the beginning. This is a very supportive group, and we do understand what you're going through. a and , our moderators, post articles about RA and other auto-immune diseases and keep us up to date. Sue On Friday, August 26, 2005, at 07:19 PM, Jessi wrote: > Hello. My name is and I am 24 yrs old. I was diagnosed with > Rheumatoid Arthritis about 10 months ago, finally. Dealt with the > pain, off and on, for over a year. When one morning I woke up and felt > like I had fell from a plane, couldnt ignore the pain anymore. I am a > very active person, so this hit me pretty hard. So glad I found this > support group. Nice to know there are other people out there to talk > to who understand exactly what you are going through. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Jessi, I am so sorry that you got RA at such a young age. I was fortunate enough to wait until I was sixty (six years ago) to get it. There are a number of new drugs that can prevent joint damage, so that we don't have to develop deformities if our doctors find the right combination of medications for us. I hope that you are going to a rheumatologist who will treat it aggressively from the beginning. This is a very supportive group, and we do understand what you're going through. a and , our moderators, post articles about RA and other auto-immune diseases and keep us up to date. Sue On Friday, August 26, 2005, at 07:19 PM, Jessi wrote: > Hello. My name is and I am 24 yrs old. I was diagnosed with > Rheumatoid Arthritis about 10 months ago, finally. Dealt with the > pain, off and on, for over a year. When one morning I woke up and felt > like I had fell from a plane, couldnt ignore the pain anymore. I am a > very active person, so this hit me pretty hard. So glad I found this > support group. Nice to know there are other people out there to talk > to who understand exactly what you are going through. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hi Jessi, Welcome. This is a good group to be in. Cassy > Hello. My name is and I am 24 yrs old. I was diagnosed with > Rheumatoid Arthritis about 10 months ago, finally. Dealt with the > pain, off and on, for over a year. When one morning I woke up and felt > like I had fell from a plane, couldnt ignore the pain anymore. I am a > very active person, so this hit me pretty hard. So glad I found this > support group. Nice to know there are other people out there to talk > to who understand exactly what you are going through. > > Jessi Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.