Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Prayers are coming your way, girl. That is wonderful news about the prostate cancer. And woman, you are brave putting your age down there. Ain't no way I am putting my age down. Are you nuts? The MRI will show what's going on in the knee. I tore my meniscus running this summer and had to have surgery. So if it is that, I can talk you thru that one. And if it is Acl, there was a recent Swedish study done on that one. , no age- I take the fifth Sent from my iPhone On Feb 7, 2011, at 8:15 PM, and Schulz <snooksmama@...> wrote: > For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. > Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice storm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... > I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. > My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! > Prayers for would be appreciated!! > , 50, mom to Rob, 21 > > Jaye Update > > > > > > Hello all, > > > > Just thought I would let you all know that things are going > > well. We saw the rheumy today and we all are pleased to announce > > that things are going very well. He was pleased to find > > only minor swelling in one of Jaye's knees. We are so > > thrilled with the Enbrel and how it is helping so much. > > Two weekends in a row, we have spent a full day on our feet and > > Jaye has kept up. Last weekend we had gone to > > Joplin to spend some time with one of my brothers. He is > > stationed in Japan but was baack in the states for > > schooling. We went to the mall, played putt putt, walked > > quite a bit, went to the motel for a nap and then went bowling. > > Jaye said she had more fun last Saturday then she can > > remember ever having. This weekend we went to KC for the appt > > and so had to go up ahead of time and spent time shopping. We > > walked the mall for four or five hours and out to eat before > > going back to the motel. She never complained at all. > > NONE!!!! Now this was her birthday shopping > > excursion so she was trying on clothes and shoes so that > > is exciting for her, but also that is exhausting for > > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > > leave her meds where they are at this point but will begin to > > wein her off of something eventually. I am happy to stay > > the course we are on now. I was actually hoping that he > > would not try to wein yet because I do not want to rock the > > boat. Jaye has been on Enbrel now for 8 weeks and > > we are EXCITED. She has a bit of pain in one wrist but no > > swelling and that was the only joint she had any pain in at all > > today. That is amazing. I do not think we have ever gone > > into the appointment with just a little pain in only one joint. > > I just had to share our excitement. > > > > Veri & Jaye 17 poly > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Sorry to hear about Rob's accident but not surprised to hear that he pushed it back into place on his own. will be praying that the monster keeps sleeping and that he will recover quickly. I hope that you will find something to work again for you and that you will be feeling great soon. Veri & jaye 17 poly Rob update and a little about me For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice storm ! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! Prayers for would be appreciated!! , 50, mom to Rob, 21 Jaye Update > > Hello all, > > Just thought I would let you all know that things are going > well. We saw the rheumy today and we all are pleased to announce > that things are going very well. He was pleased to find > only minor swelling in one of Jaye's knees. We are so > thrilled with the Enbrel and how it is helping so much. > Two weekends in a row, we have spent a full day on our feet and > Jaye has kept up. Last weekend we had gone to > Joplin to spend some time with one of my brothers. He is > stationed in Japan but was baack in the states for > schooling. We went to the mall, played putt putt, walked > quite a bit, went to the motel for a nap and then went bowling. > Jaye said she had more fun last Saturday then she can > remember ever having. This weekend we went to KC for the appt > and so had to go up ahead of time and spent time shopping. We > walked the mall for four or five hours and out to eat before > going back to the motel. She never complained at all. > NONE!!!! Now this was her birthday shopping > excursion so she was trying on clothes and shoes so that > is exciting for her, but also that is exhausting for > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > leave her meds where they are at this point but will begin to > wein her off of something eventually. I am happy to stay > the course we are on now. I was actually hoping that he > would not try to wein yet because I do not want to rock the > boat. Jaye has been on Enbrel now for 8 weeks and > we are EXCITED. She has a bit of pain in one wrist but no > swelling and that was the only joint she had any pain in at all > today. That is amazing. I do not think we have ever gone > into the appointment with just a little pain in only one joint. > I just had to share our excitement. > > Veri & Jaye 17 poly > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Oh hush about your age. You may have been born before me but in all reality you are younger then many of us. I wish I could run half as much as you can. My knees and ankles have been very old since I was very young and have never cooperated with me. If I don't walk careful they pop, twist and swell. I have had back surgery three times and know my arthritis is in my back as well as my other joints. My body is much older then my actual age. Enjoy your age and stay young. Veri Re: Rob update and a little about me Prayers are coming your way, girl. That is wonderful news about the prostate cancer. And woman, you are brave putting your age down there. Ain't no way I am putting my age down. Are you nuts? The MRI will show what's going on in the knee. I tore my meniscus running this summer and had to have surgery. So if it is that, I can talk you thru that one. And if it is Acl, there was a recent Swedish study done on that one. , no age- I take the fifth Sent from my iPhone On Feb 7, 2011, at 8:15 PM, and Schulz <snooksmama@...> wrote: > For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. > Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice s torm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... > I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. > My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! > Prayers for would be appreciated!! > , 50, mom to Rob, 21 > > Jaye Update > > > > > > Hello all, > > > > Just thought I would let you all know that things are going > > well. We saw the rheumy today and we all are pleased to announce > > that things are going very well. He was pleased to find > > only minor swelling in one of Jaye's knees. We are so > > thrilled with the Enbrel and how it is helping so much. > > Two weekends in a row, we have spent a full day on our feet and > > Jaye has kept up. Last weekend we had gone to > > Joplin to spend some time with one of my brothers. He is > > stationed in Japan but was baack in the states for > > schooling. We went to the mall, played putt putt, walked > > quite a bit, went to the motel for a nap and then went bowling. > > Jaye said she had more fun last Saturday then she can > > remember ever having. This weekend we went to KC for the appt > > and so had to go up ahead of time and spent time shopping. We > > walked the mall for four or five hours and out to eat before > > going back to the motel. She never complained at all. > > NONE!!!! Now this was her birthday shopping > > excursion so she was trying on clothes and shoes so that > > is exciting for her, but also that is exhausting for > > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > > leave her meds where they are at this point but will begin to > > wein her off of something eventually. I am happy to stay > > the course we are on now. I was actually hoping that he > > would not try to wein yet because I do not want to rock the > > boat. Jaye has been on Enbrel now for 8 weeks and > > we are EXCITED. She has a bit of pain in one wrist but no > > swelling and that was the only joint she had any pain in at all > > today. That is amazing. I do not think we have ever gone > > into the appointment with just a little pain in only one joint. > > I just had to share our excitement. > > > > Veri & Jaye 17 poly > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 , I am not surprised that Rob is just pushing through, that is what our kids do. I hope whatever is going on is not serious and is easy to fix. I will pray the monster stays away too. I am sorry you continue to struggle, but your attitude is awesome. Hope you get to feeling better very soon.  Beth & Hannah, 14, OA, HMJS, Sever's Disease, asthma, allergies Life is one grand, sweet song, so start the music. ~ Reagan ________________________________ From: and Schulz <snooksmama@...> Sent: Mon, February 7, 2011 10:15:53 PM Subject: Rob update and a little about me  For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice storm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! Prayers for would be appreciated!! , 50, mom to Rob, 21 Jaye Update > > Hello all, > > Just thought I would let you all know that things are going > well. We saw the rheumy today and we all are pleased to announce > that things are going very well. He was pleased to find > only minor swelling in one of Jaye's knees. We are so > thrilled with the Enbrel and how it is helping so much. > Two weekends in a row, we have spent a full day on our feet and > Jaye has kept up. Last weekend we had gone to > Joplin to spend some time with one of my brothers. He is > stationed in Japan but was baack in the states for > schooling. We went to the mall, played putt putt, walked > quite a bit, went to the motel for a nap and then went bowling. > Jaye said she had more fun last Saturday then she can > remember ever having. This weekend we went to KC for the appt > and so had to go up ahead of time and spent time shopping. We > walked the mall for four or five hours and out to eat before > going back to the motel. She never complained at all. > NONE!!!! Now this was her birthday shopping > excursion so she was trying on clothes and shoes so that > is exciting for her, but also that is exhausting for > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > leave her meds where they are at this point but will begin to > wein her off of something eventually. I am happy to stay > the course we are on now. I was actually hoping that he > would not try to wein yet because I do not want to rock the > boat. Jaye has been on Enbrel now for 8 weeks and > we are EXCITED. She has a bit of pain in one wrist but no > swelling and that was the only joint she had any pain in at all > today. That is amazing. I do not think we have ever gone > into the appointment with just a little pain in only one joint. > I just had to share our excitement. > > Veri & Jaye 17 poly > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 I do love to run. Every Monday, I have a standing appointment to run with a buddy of mine. We go 7-11 miles on narrow single track trails thru a forest in the Tualatin Mountains. With our rainy winters, it is often muddy. Yesterday wasn't too bad, but the mud still splattered up to my waist. My shoes are always a mess. We have to crawl over or under fallen trees and pick our way over many damaged trail bridges. We listen for the cries of the Bald Eagle, Great Northern Pygmy Owl, and lots of other birds. I have even memorized the call of an elk because they are up where we run. We have seen their scat. But I am still not going to put my age down because I am really only 25. (n, 22, systemi) On Feb 8, 2011, at 4:29 AM, veristroud@... wrote: > > Oh hush about your age. You may have been born before me but in all reality you are younger then many of us. I wish I could run half as much as you can. My knees and ankles have been very old since I was very young and have never cooperated with me. If I don't walk careful they pop, twist and swell. I have had back surgery three times and know my arthritis is in my back as well as my other joints. My body is much older then my actual age. Enjoy your age and stay young. > > Veri > > Re: Rob update and a little about me > > Prayers are coming your way, girl. That is wonderful news about the prostate cancer. And woman, you are brave putting your age down there. Ain't no way I am putting my age down. Are you nuts? > The MRI will show what's going on in the knee. I tore my meniscus running this summer and had to have surgery. So if it is that, I can talk you thru that one. And if it is Acl, there was a recent Swedish study done on that one. , no age- I take the fifth > > Sent from my iPhone > > On Feb 7, 2011, at 8:15 PM, and Schulz <snooksmama@...> wrote: > > > For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. > > Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice s torm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... > > I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. > > My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! > > Prayers for would be appreciated!! > > , 50, mom to Rob, 21 > > > > Jaye Update > > > > > > > > > > Hello all, > > > > > > Just thought I would let you all know that things are going > > > well. We saw the rheumy today and we all are pleased to announce > > > that things are going very well. He was pleased to find > > > only minor swelling in one of Jaye's knees. We are so > > > thrilled with the Enbrel and how it is helping so much. > > > Two weekends in a row, we have spent a full day on our feet and > > > Jaye has kept up. Last weekend we had gone to > > > Joplin to spend some time with one of my brothers. He is > > > stationed in Japan but was baack in the states for > > > schooling. We went to the mall, played putt putt, walked > > > quite a bit, went to the motel for a nap and then went bowling. > > > Jaye said she had more fun last Saturday then she can > > > remember ever having. This weekend we went to KC for the appt > > > and so had to go up ahead of time and spent time shopping. We > > > walked the mall for four or five hours and out to eat before > > > going back to the motel. She never complained at all. > > > NONE!!!! Now this was her birthday shopping > > > excursion so she was trying on clothes and shoes so that > > > is exciting for her, but also that is exhausting for > > > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > > > leave her meds where they are at this point but will begin to > > > wein her off of something eventually. I am happy to stay > > > the course we are on now. I was actually hoping that he > > > would not try to wein yet because I do not want to rock the > > > boat. Jaye has been on Enbrel now for 8 weeks and > > > we are EXCITED. She has a bit of pain in one wrist but no > > > swelling and that was the only joint she had any pain in at all > > > today. That is amazing. I do not think we have ever gone > > > into the appointment with just a little pain in only one joint. > > > I just had to share our excitement. > > > > > > Veri & Jaye 17 poly > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 I am so sorry to hear about Rob's injury. I can just see him walking with those crutches! Don't they have some kind of bus that would run around campus?? I know, he figured he could make it - no problem. I sure hope he heals up well and that darn AS does not rear its ugly head! Sorry to hear about your mono. Please take care of yourself. As you know it can take quite a while for someone with auto immune to feel better after that. It took quite a few months when it happened to him a few years back. I know you have been through so many different meds and I hope that the newest one can give you much deserved relief. Actually, I pray all the time for a cure for all this so that all who have to deal with this can feel better. That is great news about your hubby being cancer free!! Lots of prayers and hugs for your family, Michele ( 23, spondy) From: [mailto: ] On Behalf Of and Schulz Sent: Monday, February 07, 2011 10:16 PM Subject: Rob update and a little about me For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice storm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! Prayers for would be appreciated!! , 50, mom to Rob, 21 Jaye Update <mailto: %40> > > Hello all, > > Just thought I would let you all know that things are going > well. We saw the rheumy today and we all are pleased to announce > that things are going very well. He was pleased to find > only minor swelling in one of Jaye's knees. We are so > thrilled with the Enbrel and how it is helping so much. > Two weekends in a row, we have spent a full day on our feet and > Jaye has kept up. Last weekend we had gone to > Joplin to spend some time with one of my brothers. He is > stationed in Japan but was baack in the states for > schooling. We went to the mall, played putt putt, walked > quite a bit, went to the motel for a nap and then went bowling. > Jaye said she had more fun last Saturday then she can > remember ever having. This weekend we went to KC for the appt > and so had to go up ahead of time and spent time shopping. We > walked the mall for four or five hours and out to eat before > going back to the motel. She never complained at all. > NONE!!!! Now this was her birthday shopping > excursion so she was trying on clothes and shoes so that > is exciting for her, but also that is exhausting for > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > leave her meds where they are at this point but will begin to > wein her off of something eventually. I am happy to stay > the course we are on now. I was actually hoping that he > would not try to wein yet because I do not want to rock the > boat. Jaye has been on Enbrel now for 8 weeks and > we are EXCITED. She has a bit of pain in one wrist but no > swelling and that was the only joint she had any pain in at all > today. That is amazing. I do not think we have ever gone > into the appointment with just a little pain in only one joint. > I just had to share our excitement. > > Veri & Jaye 17 poly > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 , Prayers going out for Rob - I hope the knee can heal quickly, and without triggering the beast. He has quite the pain tolerance for being able to put it back in place himselff! And, what a trooper to walk that far on crutches! Great news about your husband, and I hope you are feeling better soon as well!! nn (, 9, systemic) (oh, and 41.5 years old, and feeling not so young and energetic lately; since I'm headed for ablation surgery next Monday, and maybe a hysterectomy. My hemoglobin was 5.9 when checked today - looking forward to stemming the monthly blood loss so I can venture toward 50 with lots of energy like all of you moms have > > For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. > Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice storm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... > I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. > My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! > Prayers for would be appreciated!! > , 50, mom to Rob, 21 > > > > Jaye Update > > > > > > Hello all, > > > > Just thought I would let you all know that things are going > > well. We saw the rheumy today and we all are pleased to announce > > that things are going very well. He was pleased to find > > only minor swelling in one of Jaye's knees. We are so > > thrilled with the Enbrel and how it is helping so much. > > Two weekends in a row, we have spent a full day on our feet and > > Jaye has kept up. Last weekend we had gone to > > Joplin to spend some time with one of my brothers. He is > > stationed in Japan but was baack in the states for > > schooling. We went to the mall, played putt putt, walked > > quite a bit, went to the motel for a nap and then went bowling. > > Jaye said she had more fun last Saturday then she can > > remember ever having. This weekend we went to KC for the appt > > and so had to go up ahead of time and spent time shopping. We > > walked the mall for four or five hours and out to eat before > > going back to the motel. She never complained at all. > > NONE!!!! Now this was her birthday shopping > > excursion so she was trying on clothes and shoes so that > > is exciting for her, but also that is exhausting for > > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > > leave her meds where they are at this point but will begin to > > wein her off of something eventually. I am happy to stay > > the course we are on now. I was actually hoping that he > > would not try to wein yet because I do not want to rock the > > boat. Jaye has been on Enbrel now for 8 weeks and > > we are EXCITED. She has a bit of pain in one wrist but no > > swelling and that was the only joint she had any pain in at all > > today. That is amazing. I do not think we have ever gone > > into the appointment with just a little pain in only one joint. > > I just had to share our excitement. > > > > Veri & Jaye 17 poly > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Roseann, I hope your surgery goes well so that you feel young again soon. 5.9 is quite low. Will they even do it with it that low. when my surgery was scheduled and my hemoglobin was at 6.9 I think they refused to operate til we got it up and I had to take iron tablets to get it up. Veri Re: Rob update and a little about me , Prayers going out for Rob - I hope the knee can heal quickly, and without triggering the beast. He has quite the pain tolerance for being able to put it back in place himselff! And, what a trooper to walk that far on crutches! Great news about your husband, and I hope you are feeling better soon as well!! nn (, 9, systemic) (oh, and 41.5 years old, and feeling not so young and energetic lately; since I'm headed for ablation surgery next Monday, and maybe a hysterectomy. My hemoglobin was 5.9 when checked today - looking forward to stemming the monthly blood loss so I can venture toward 50 with lots of energy like all of you moms have > > For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. > Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice storm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... > I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. > My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! > Prayers for would be appreciated!! > , 50, mom to Rob, 21 > > > > Jaye Update > > > > > > Hello all, > > > > Just thought I would let you all know that things are going > > well. We saw the rheumy today and we all are pleased to announce > > that things are going very well. He was pleased to find > > only minor swelling in one of Jaye's knees. We are so > > thrilled with the Enbrel and how it is helping so much. > > Two weekends in a row, we have spent a full day on our feet and > > Jaye has kept up. Last weekend we had gone to > > Joplin to spend some time with one of my brothers. He is > > stationed in Japan but was baack in the states for > > schooling. We went to the mall, played putt putt, walked > > quite a bit, went to the motel for a nap and then went bowling. > > Jaye said she had more fun last Saturday then she can > > remember ever having. This weekend we went to KC for the appt > > and so had to go up ahead of time and spent time shopping. We > > walked the mall for four or five hours and out to eat before > > going back to the motel. She never complained at all. > > NONE!!!! Now this was her birthday shopping > > excursion so she was trying on clothes and shoes so that > > is exciting for her, but also that is exhausting for > > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > > leave her meds where they are at this point but will begin to > > wein her off of something eventually. I am happy to stay > > the course we are on now. I was actually hoping that he > > would not try to wein yet because I do not want to rock the > > boat. Jaye has been on Enbrel now for 8 weeks and > > we are EXCITED. She has a bit of pain in one wrist but no > > swelling and that was the only joint she had any pain in at all > > today. That is amazing. I do not think we have ever gone > > into the appointment with just a little pain in only one joint. > > I just had to share our excitement. > > > > Veri & Jaye 17 poly > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 Prayers being said! Great news on your hubbys cancer! , 45...trying to keep up with , 7, poly & Arianna, 9 Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Hi Veri, Yes, 5.9, was too low - they rushed me in for a blood tranfusion, and then surgery yesterday! Home now and on the mend. I was stressed to not be here for the evening injetion and all the other medical management with , but it gave my husband a chance to be totally responsible for all of it. Actually, it was a nice break Take care, nn > > > > For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. > > Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice storm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... > > I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. > > My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! > > Prayers for would be appreciated!! > > , 50, mom to Rob, 21 > > > > > > > > Jaye Update > > > > > > > > > > Hello all, > > > > > > Just thought I would let you all know that things are going > > > well. We saw the rheumy today and we all are pleased to announce > > > that things are going very well. He was pleased to find > > > only minor swelling in one of Jaye's knees. We are so > > > thrilled with the Enbrel and how it is helping so much. > > > Two weekends in a row, we have spent a full day on our feet and > > > Jaye has kept up. Last weekend we had gone to > > > Joplin to spend some time with one of my brothers. He is > > > stationed in Japan but was baack in the states for > > > schooling. We went to the mall, played putt putt, walked > > > quite a bit, went to the motel for a nap and then went bowling. > > > Jaye said she had more fun last Saturday then she can > > > remember ever having. This weekend we went to KC for the appt > > > and so had to go up ahead of time and spent time shopping. We > > > walked the mall for four or five hours and out to eat before > > > going back to the motel. She never complained at all. > > > NONE!!!! Now this was her birthday shopping > > > excursion so she was trying on clothes and shoes so that > > > is exciting for her, but also that is exhausting for > > > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > > > leave her meds where they are at this point but will begin to > > > wein her off of something eventually. I am happy to stay > > > the course we are on now. I was actually hoping that he > > > would not try to wein yet because I do not want to rock the > > > boat. Jaye has been on Enbrel now for 8 weeks and > > > we are EXCITED. She has a bit of pain in one wrist but no > > > swelling and that was the only joint she had any pain in at all > > > today. That is amazing. I do not think we have ever gone > > > into the appointment with just a little pain in only one joint. > > > I just had to share our excitement. > > > > > > Veri & Jaye 17 poly > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 I am glad you are doing well. Take it easy. On Feb 10, 2011, at 8:01 AM, nn wrote: > Hi Veri, > Yes, 5.9, was too low - they rushed me in for a blood tranfusion, and then surgery yesterday! Home now and on the mend. I was stressed to not be here for the evening injetion and all the other medical management with , but it gave my husband a chance to be totally responsible for all of it. Actually, it was a nice break > Take care, > nn > > > > > > > > For the new ones here, my son was diagnosed at age 12 with juvenile ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put on Enbrel and it was his miracle drug. It put him in remission, which he is still enjoying (at least I think, he won't tell me if he hurts and insists his arthritis is 'gone'). He has been off all his arthritis meds for about 3 years now. > > > Well, last week, where he goes to school in Indianapolis, there were 2 inches of ice on the streets. He was bugging around and fell. He dislocated his kneecap all the way to one side. He pushed it back into place himself. He still has his high pain tolerance from before, and so he went back to his apartment, thinking it might be better in the morning. The next morning he called me in terrible pain. So I made him go to the ER. They xrayed it, and nothing broken, but there was fluid in the joint, indicating there might be a tear. He is not doing well at all, in terrible pain, and not able to walk on it. He is in a brace and on crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will really be difficult for him in the middle of the semester. He has 3 semesters left and wants to finish college so badly. He walked on crutches for a mile and a half on Saturday to get to where he had to take a makeup test from when classes were called off due to the ice storm! My trooper....but I'm sure that will get old. Hoping his arthritis doesn't come back after this experience. Please pray he heals and hasn't awoken the monster...His rheumatologist was delighted with his remission but cautioned us a few years ago that AS rarely stays in remission forever... > > > I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on Simponi when I started getting terribly sick at the end of december. I had one infection after the other. I finally was diagnosed with mono, and they think I have had it since January. I am now off my simponi and methotrexate, to let my immune system recover. And my joints are starting to flare. I've tried all the TNF inhibitors and consistently get infections on them, so those are now out of the picture. I tried Rituxan and had a horrible allergic reaction. I was on Orencia for about 2 years and every time I took the infusion, I'd be down sick for 2 days afterwards. So I guess I am looking at Actemra next, once I am able to start back on meds. > > > My husband had prostate cancer last year, and had surgery, and I am happy to say that his last tests show that he is cancer free! We are blessed!! > > > Prayers for would be appreciated!! > > > , 50, mom to Rob, 21 > > > > > > > > > > > > Jaye Update > > > > > > > > > > > > > > Hello all, > > > > > > > > Just thought I would let you all know that things are going > > > > well. We saw the rheumy today and we all are pleased to announce > > > > that things are going very well. He was pleased to find > > > > only minor swelling in one of Jaye's knees. We are so > > > > thrilled with the Enbrel and how it is helping so much. > > > > Two weekends in a row, we have spent a full day on our feet and > > > > Jaye has kept up. Last weekend we had gone to > > > > Joplin to spend some time with one of my brothers. He is > > > > stationed in Japan but was baack in the states for > > > > schooling. We went to the mall, played putt putt, walked > > > > quite a bit, went to the motel for a nap and then went bowling. > > > > Jaye said she had more fun last Saturday then she can > > > > remember ever having. This weekend we went to KC for the appt > > > > and so had to go up ahead of time and spent time shopping. We > > > > walked the mall for four or five hours and out to eat before > > > > going back to the motel. She never complained at all. > > > > NONE!!!! Now this was her birthday shopping > > > > excursion so she was trying on clothes and shoes so that > > > > is exciting for her, but also that is exhausting for > > > > anyone. WE LOVE ENBREL!!!! The rheumy said we are going to > > > > leave her meds where they are at this point but will begin to > > > > wein her off of something eventually. I am happy to stay > > > > the course we are on now. I was actually hoping that he > > > > would not try to wein yet because I do not want to rock the > > > > boat. Jaye has been on Enbrel now for 8 weeks and > > > > we are EXCITED. She has a bit of pain in one wrist but no > > > > swelling and that was the only joint she had any pain in at all > > > > today. That is amazing. I do not think we have ever gone > > > > into the appointment with just a little pain in only one joint. > > > > I just had to share our excitement. > > > > > > > > Veri & Jaye 17 poly > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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