Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 Michele Just wanted to check in and see how your mom is doing? Hope she is getting around better and not in too much pain. How is Chris? Has he made any decision about going back to the doctor? Drop us a line when you get the chance. and Rob 18 JAS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2008 Report Share Posted February 22, 2008 Michele Thanks so much for your sweet words...sorry to have made you cry. I know that you guys have been hit with some really lousy weather. Hope it ends soon. When are your hubby's and Chris' appointments with the rheumy? are you able to go with them?? and Rob 18 JAS RE: Arthritis stinks! > Big giant HUGS!!!! I was in tears as I read your email. > You vent > whenever you need to girlfriend - that is what we are here for. > We do so > understand. > > Eat your berries - UGH!! Do people think you want to suffer? If > only it > was all so simple. > > I had forgotten about the going off meds part with the mono - I > hope Rob > can get back on soon. > > Hugs and prayers, Michele ( 20, spondy) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Michele Just thinking of you this evening and wondering if things are going any better? Hope all is well. Did start meds yet? Thanks for the well wishes! Rob went back on his Enbrel and methotrexate last week, and Thursday had to go to immediate care with strep and sinus infection. He's on antibiotics and feeling better now. Give us an update when you can. and Rob 18 JAS Update on us (long) > > > > Hello group > I've gotten hit and miss about posting, but for those who don't know > me... > My son Rob is 18 (almost 19) and was diagnosed with juvenile > ankylosingspondylitis at age 12. However, this was not the start > of his problems. > suffered from severe lung issues beginning at age 1. He was > diagnosed with asthma, but all the treatments never did get him under > good control. Early on in his school career it became evident that > 's learning processes were different. He had great difficulty > mastering written material and expressing himself in writing. We have > spent years working with tutors, finally utilizing medication for > inattentiveness in order to help achieve success in school. > Amazingly, graduated from his high school, a blue ribbon school > of excellence, with a 3.1 GPA. Pretty impressive! We are very > proud of > him. > At age 12, suddenly lost the ability to walk because of severe > pain. It was found that he had effusions in both hip joints, as > well as > inflammation in his spine and heels. He was diagnosed with juvenile > ankylosing spondylitis. Thankfully, after years of treatment, > does quite well now with this form of arthritis, and has few > issues with > walking. Interestingly, the treatment medications drastically improved > his lung function. It is believed that the inflammation from the JAS > initially affected his lungs before making its appearance in his > joints.Not two years after the arthritis diagnosis, was > diagnosed with > Alport syndrome, an unrelated kidney ailment. Thankfully, he is doing > well. His kidney function at this time is normal. However, the > possibility of the disease ultimately affecting his kidney function > precludes being able to take any sort of NSAID (advil, > ibuprofen,naproxen, celebrex and the like) for his arthritis > pain. It is unknown > whether his kidneys will eventually fail and he might require dialysis > or transplant. > Last summer, before his freshman year of college, he underwent major > surgery to repair a chest defect that was causing pressure on > his heart. > He now sports a titanium bar under his sternum. This will be > removed in > 2 years, not soon enough for Rob, who loves to work out and now has > restrictions from doing so. He is an incredible person full of spirit > and determination. He rarely complains about anything physical, > and has > dealt with all his diagnoses courageously. > has never been a huge fan of school, but now that he is in > college and majoring in criminal justice, his career aspirations have > come alive. I have never seen him this motivated. > This semester, he was diagnosed with mononucleosis, likely a > result of > the immunosuppression from the medications. He drove home on a Tuesday > with a sinus infection and eyes nearly swollen shut with pink eye > infections. He only stayed home for 2 days and was back in class by > Friday of that week. > Needless to say, Rob is my hero! > I watched my mother suffer for years with rheumatoid arthritis, > beginning in her 40's. I had symptoms in my teens (hands) but ignored > them for years. I had an acute attack in my 20's that was > written off as > a viral infection; it did resolve. I still had intermittent hand pain. > At age 37, I was in a severe auto accident that broke my right femur > completely in half. I also had a head injury and scapular > fracture, as > well as nerve and muscle damage to my thigh where the bone protruded. > After this accident, I started again with symptoms of RA, which > I still > ignored. About a year after was diagnosed with JAS, I was > wakingup in the middle of the night in pain and my hands forming > the letter C > with stiffness. Then pain began in knees, feet, and I finally > consultedmy doctor. I was sent on to the rheumatologist and > ultimately received a > diagnosis of RA. It has gotten progressively worse. I've had > periods of > remission while starting methotrexate, and also with Enbrel, but > eventually, my body found a way around it and I flared again. > I've spent > about the last year and a half on prednisone. Every time I try > to wean > off, I get a horrible flare that knocks me on my butt. Finally in > September of last year, I agreed to try Rituxan after failing on > Humira.I had an anaphylactic reaction. So in November, I tried > Orencia. It can > take up to 6 months to 'kick in'. I have been growing more and more > upset that it hasn't started working yet. Have lived on prednisone > again, tried to wean in the hopes that Orencia would start > working but > no dice. About 3 weeks ago, I joined a new initiative at work to > get in > better shape and eat right. I'm proud to say I've been exercising > religiously. One of the things that has helped me the most has been > Arthritis Aquatics sponsored by the Arthritis Foundation at our > local Y. > I also received my 6th infusion of Orencia last Friday. I woke > Saturdaymorning, and although in my usual pain, noticed that my > stiffness was > about 1/2 OF WHAT IT USUALLY IS!! I'm still having much the same > pain in > knees, elbows, hands, etc, but my stiffness has improved! I'm > also, I > think, feeling the benefits of the increased exercise. I have > hope!!! I > have to think that everything is falling into place, finally! > I'm still > on 10mg of prednisone a day, and won't try to wean further until my > monthly infusion in April. But after that, I will be weaning > again! I'm > so excited! Many of you may have read my ranting and raving post > a few > months ago. I felt really awful about that, considering what my > own son > and so many other kids on the list have gone through...so I > wanted to > share my great news and blossoming hope! > I also hope that Rob's story will offer hope and encouragement to > everybody here. He is a fighter, and he has been such a model > for me, > and yet I still have not handled things nearly as well as he has. > If you have read all this you are special indeed! > and Rob 18 JAS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Thanks for asking . will start his med as soon as it gets picked up. He was supposed to do that last week and he kept putting it off, and it was put back. So last night I had them refill it, and I will get them. It is $70 w/insurance, so was reluctant to spend the money, as he has other priorities, lol. So I am going to get the Arthrotec and he can pay me back. At least he will have it. As for my husband, things are better and I am once again a firm believer in prayer and handing your troubles over to that higher power. He went to the rheumy on Wednesday and that seemed to help him. He too is on Arthrotec but our insurance will not cover it right now, so he had to pay the full $160 to get it. There is paperwork to fill out and we may get some of the money back. We shall see. It is working ok; the rheumy is going on the new theory of NSAIDs for spondy and then biologics, not using MTX which does not seem to do much he said. I am worried the dr will want to put him back on steroids which did help the inflammation but I am afraid that is what triggered the depression to hit so hard. This last episode was a deep one. But by Wednesday he had been off of them for about 4 days, so I wonder if that also helped the mood disorder. So I did talk with hubby about my feelings about the steroids and we will discuss with the dr before they are tried again. Poor Rob! It sounds like he is just catching everything under the sun. I hope he gets some relief soon. Thanks again for all the prayers, everyone. They truly did help, Michele ( 20, spondy) ________________________________ From: [mailto: ] On Behalf Of and Schulz Sent: Saturday, March 29, 2008 7:34 PM Subject: Re: RE: Michele Michele Just thinking of you this evening and wondering if things are going any better? Hope all is well. Did start meds yet? Thanks for the well wishes! Rob went back on his Enbrel and methotrexate last week, and Thursday had to go to immediate care with strep and sinus infection. He's on antibiotics and feeling better now. Give us an update when you can. and Rob 18 JAS Update on us (long) > > > > Hello group > I've gotten hit and miss about posting, but for those who don't know > me... > My son Rob is 18 (almost 19) and was diagnosed with juvenile > ankylosingspondylitis at age 12. However, this was not the start > of his problems. > suffered from severe lung issues beginning at age 1. He was > diagnosed with asthma, but all the treatments never did get him under > good control. Early on in his school career it became evident that > 's learning processes were different. He had great difficulty > mastering written material and expressing himself in writing. We have > spent years working with tutors, finally utilizing medication for > inattentiveness in order to help achieve success in school. > Amazingly, graduated from his high school, a blue ribbon school > of excellence, with a 3.1 GPA. Pretty impressive! We are very > proud of > him. > At age 12, suddenly lost the ability to walk because of severe > pain. It was found that he had effusions in both hip joints, as > well as > inflammation in his spine and heels. He was diagnosed with juvenile > ankylosing spondylitis. Thankfully, after years of treatment, > does quite well now with this form of arthritis, and has few > issues with > walking. Interestingly, the treatment medications drastically improved > his lung function. It is believed that the inflammation from the JAS > initially affected his lungs before making its appearance in his > joints.Not two years after the arthritis diagnosis, was > diagnosed with > Alport syndrome, an unrelated kidney ailment. Thankfully, he is doing > well. His kidney function at this time is normal. However, the > possibility of the disease ultimately affecting his kidney function > precludes being able to take any sort of NSAID (advil, > ibuprofen,naproxen, celebrex and the like) for his arthritis > pain. It is unknown > whether his kidneys will eventually fail and he might require dialysis > or transplant. > Last summer, before his freshman year of college, he underwent major > surgery to repair a chest defect that was causing pressure on > his heart. > He now sports a titanium bar under his sternum. This will be > removed in > 2 years, not soon enough for Rob, who loves to work out and now has > restrictions from doing so. He is an incredible person full of spirit > and determination. He rarely complains about anything physical, > and has > dealt with all his diagnoses courageously. > has never been a huge fan of school, but now that he is in > college and majoring in criminal justice, his career aspirations have > come alive. I have never seen him this motivated. > This semester, he was diagnosed with mononucleosis, likely a > result of > the immunosuppression from the medications. He drove home on a Tuesday > with a sinus infection and eyes nearly swollen shut with pink eye > infections. He only stayed home for 2 days and was back in class by > Friday of that week. > Needless to say, Rob is my hero! > I watched my mother suffer for years with rheumatoid arthritis, > beginning in her 40's. I had symptoms in my teens (hands) but ignored > them for years. I had an acute attack in my 20's that was > written off as > a viral infection; it did resolve. I still had intermittent hand pain. > At age 37, I was in a severe auto accident that broke my right femur > completely in half. I also had a head injury and scapular > fracture, as > well as nerve and muscle damage to my thigh where the bone protruded. > After this accident, I started again with symptoms of RA, which > I still > ignored. About a year after was diagnosed with JAS, I was > wakingup in the middle of the night in pain and my hands forming > the letter C > with stiffness. Then pain began in knees, feet, and I finally > consultedmy doctor. I was sent on to the rheumatologist and > ultimately received a > diagnosis of RA. It has gotten progressively worse. I've had > periods of > remission while starting methotrexate, and also with Enbrel, but > eventually, my body found a way around it and I flared again. > I've spent > about the last year and a half on prednisone. Every time I try > to wean > off, I get a horrible flare that knocks me on my butt. Finally in > September of last year, I agreed to try Rituxan after failing on > Humira.I had an anaphylactic reaction. So in November, I tried > Orencia. It can > take up to 6 months to 'kick in'. I have been growing more and more > upset that it hasn't started working yet. Have lived on prednisone > again, tried to wean in the hopes that Orencia would start > working but > no dice. About 3 weeks ago, I joined a new initiative at work to > get in > better shape and eat right. I'm proud to say I've been exercising > religiously. One of the things that has helped me the most has been > Arthritis Aquatics sponsored by the Arthritis Foundation at our > local Y. > I also received my 6th infusion of Orencia last Friday. I woke > Saturdaymorning, and although in my usual pain, noticed that my > stiffness was > about 1/2 OF WHAT IT USUALLY IS!! I'm still having much the same > pain in > knees, elbows, hands, etc, but my stiffness has improved! I'm > also, I > think, feeling the benefits of the increased exercise. I have > hope!!! I > have to think that everything is falling into place, finally! > I'm still > on 10mg of prednisone a day, and won't try to wean further until my > monthly infusion in April. But after that, I will be weaning > again! I'm > so excited! Many of you may have read my ranting and raving post > a few > months ago. I felt really awful about that, considering what my > own son > and so many other kids on the list have gone through...so I > wanted to > share my great news and blossoming hope! > I also hope that Rob's story will offer hope and encouragement to > everybody here. He is a fighter, and he has been such a model > for me, > and yet I still have not handled things nearly as well as he has. > If you have read all this you are special indeed! > and Rob 18 JAS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Hi Michele: I'm so glad to hear both your guys are doing better. If you would not mind, would you let me know how Arthrotec works for them. That will be the next step for me if the Celebrex does not work (so far so good, but its only been 3 weeks). I will continue to pray for your husband and hope they can keep him off the steroids! Beth & Hannah, 11, unspec arthritis w/hypermobility; asthma; gerd;migraines Sending prayers & happy thoughts, Beth :-) Update on us (long) > > > > Hello group > I've gotten hit and miss about posting, but for those who don't know > me... > My son Rob is 18 (almost 19) and was diagnosed with juvenile > ankylosingspondylit is at age 12. However, this was not the start > of his problems. > suffered from severe lung issues beginning at age 1. He was > diagnosed with asthma, but all the treatments never did get him under > good control. Early on in his school career it became evident that > 's learning processes were different. He had great difficulty > mastering written material and expressing himself in writing. We have > spent years working with tutors, finally utilizing medication for > inattentiveness in order to help achieve success in school. > Amazingly, graduated from his high school, a blue ribbon school > of excellence, with a 3.1 GPA. Pretty impressive! We are very > proud of > him. > At age 12, suddenly lost the ability to walk because of severe > pain. It was found that he had effusions in both hip joints, as > well as > inflammation in his spine and heels. He was diagnosed with juvenile > ankylosing spondylitis. Thankfully, after years of treatment, > does quite well now with this form of arthritis, and has few > issues with > walking. Interestingly, the treatment medications drastically improved > his lung function. It is believed that the inflammation from the JAS > initially affected his lungs before making its appearance in his > joints.Not two years after the arthritis diagnosis, was > diagnosed with > Alport syndrome, an unrelated kidney ailment. Thankfully, he is doing > well. His kidney function at this time is normal. However, the > possibility of the disease ultimately affecting his kidney function > precludes being able to take any sort of NSAID (advil, > ibuprofen,naproxen, celebrex and the like) for his arthritis > pain. It is unknown > whether his kidneys will eventually fail and he might require dialysis > or transplant. > Last summer, before his freshman year of college, he underwent major > surgery to repair a chest defect that was causing pressure on > his heart. > He now sports a titanium bar under his sternum. This will be > removed in > 2 years, not soon enough for Rob, who loves to work out and now has > restrictions from doing so. He is an incredible person full of spirit > and determination. He rarely complains about anything physical, > and has > dealt with all his diagnoses courageously. > has never been a huge fan of school, but now that he is in > college and majoring in criminal justice, his career aspirations have > come alive. I have never seen him this motivated. > This semester, he was diagnosed with mononucleosis, likely a > result of > the immunosuppression from the medications. He drove home on a Tuesday > with a sinus infection and eyes nearly swollen shut with pink eye > infections. He only stayed home for 2 days and was back in class by > Friday of that week. > Needless to say, Rob is my hero! > I watched my mother suffer for years with rheumatoid arthritis, > beginning in her 40's. I had symptoms in my teens (hands) but ignored > them for years. I had an acute attack in my 20's that was > written off as > a viral infection; it did resolve. I still had intermittent hand pain. > At age 37, I was in a severe auto accident that broke my right femur > completely in half. I also had a head injury and scapular > fracture, as > well as nerve and muscle damage to my thigh where the bone protruded. > After this accident, I started again with symptoms of RA, which > I still > ignored. About a year after was diagnosed with JAS, I was > wakingup in the middle of the night in pain and my hands forming > the letter C > with stiffness. Then pain began in knees, feet, and I finally > consultedmy doctor. I was sent on to the rheumatologist and > ultimately received a > diagnosis of RA. It has gotten progressively worse. I've had > periods of > remission while starting methotrexate, and also with Enbrel, but > eventually, my body found a way around it and I flared again. > I've spent > about the last year and a half on prednisone. Every time I try > to wean > off, I get a horrible flare that knocks me on my butt. Finally in > September of last year, I agreed to try Rituxan after failing on > Humira.I had an anaphylactic reaction. So in November, I tried > Orencia. It can > take up to 6 months to 'kick in'. I have been growing more and more > upset that it hasn't started working yet. Have lived on prednisone > again, tried to wean in the hopes that Orencia would start > working but > no dice. About 3 weeks ago, I joined a new initiative at work to > get in > better shape and eat right. I'm proud to say I've been exercising > religiously. One of the things that has helped me the most has been > Arthritis Aquatics sponsored by the Arthritis Foundation at our > local Y. > I also received my 6th infusion of Orencia last Friday. I woke > Saturdaymorning, and although in my usual pain, noticed that my > stiffness was > about 1/2 OF WHAT IT USUALLY IS!! I'm still having much the same > pain in > knees, elbows, hands, etc, but my stiffness has improved! I'm > also, I > think, feeling the benefits of the increased exercise. I have > hope!!! I > have to think that everything is falling into place, finally! > I'm still > on 10mg of prednisone a day, and won't try to wean further until my > monthly infusion in April. But after that, I will be weaning > again! I'm > so excited! Many of you may have read my ranting and raving post > a few > months ago. I felt really awful about that, considering what my > own son > and so many other kids on the list have gone through...so I > wanted to > share my great news and blossoming hope! > I also hope that Rob's story will offer hope and encouragement to > everybody here. He is a fighter, and he has been such a model > for me, > and yet I still have not handled things nearly as well as he has. > If you have read all this you are special indeed! > and Rob 18 JAS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 I'll let you know how it goes for them. My mom has been taking it for a few years now for her severe OA and she finds it really helps, especially when you take the proper dose. LOL! She was only taking it once in a while when the pain was really bad, and with her recent surgeries I have been paying more attention to the meds she takes. During a recent chat, she was complaining about how things were hurting. When I asked if she was taking her Arthrotec she admitted she was not taking the prescribed dose. I told her to try it and see if it can help with her knee as well as the hands and feet. She has upped the dose properly and she is feeling much better. A lot less pain and inflammation. My husband has been on it twice a day since Thursday and he has some swelling, but it is not as bad as it had been. The rheumy wants to see if it can control things for the next 2 months. I'll keep you posted how they both do. Just a thought on the insurance, you might want to check into how yours would cover it. Chris' did according to its usual tier, but with Ed's they said he had to have been on 2 other nsaid's previously before going to the Arthrotec. He has not been prescribed two different ones recently so that is why we are having a problem with coverage. Michele ( 20, spondy) ________________________________ From: [mailto: ] On Behalf Of Beth Yohnk Sent: Monday, March 31, 2008 12:04 PM Subject: Re: RE: Michele Hi Michele: I'm so glad to hear both your guys are doing better. If you would not mind, would you let me know how Arthrotec works for them. That will be the next step for me if the Celebrex does not work (so far so good, but its only been 3 weeks). I will continue to pray for your husband and hope they can keep him off the steroids! Beth & Hannah, 11, unspec arthritis w/hypermobility; asthma; gerd;migraines Sending prayers & happy thoughts, Beth :-) Update on us (long) > > > > Hello group > I've gotten hit and miss about posting, but for those who don't know > me... > My son Rob is 18 (almost 19) and was diagnosed with juvenile > ankylosingspondylit is at age 12. However, this was not the start > of his problems. > suffered from severe lung issues beginning at age 1. He was > diagnosed with asthma, but all the treatments never did get him under > good control. Early on in his school career it became evident that > 's learning processes were different. He had great difficulty > mastering written material and expressing himself in writing. We have > spent years working with tutors, finally utilizing medication for > inattentiveness in order to help achieve success in school. > Amazingly, graduated from his high school, a blue ribbon school > of excellence, with a 3.1 GPA. Pretty impressive! We are very > proud of > him. > At age 12, suddenly lost the ability to walk because of severe > pain. It was found that he had effusions in both hip joints, as > well as > inflammation in his spine and heels. He was diagnosed with juvenile > ankylosing spondylitis. Thankfully, after years of treatment, > does quite well now with this form of arthritis, and has few > issues with > walking. Interestingly, the treatment medications drastically improved > his lung function. It is believed that the inflammation from the JAS > initially affected his lungs before making its appearance in his > joints.Not two years after the arthritis diagnosis, was > diagnosed with > Alport syndrome, an unrelated kidney ailment. Thankfully, he is doing > well. His kidney function at this time is normal. However, the > possibility of the disease ultimately affecting his kidney function > precludes being able to take any sort of NSAID (advil, > ibuprofen,naproxen, celebrex and the like) for his arthritis > pain. It is unknown > whether his kidneys will eventually fail and he might require dialysis > or transplant. > Last summer, before his freshman year of college, he underwent major > surgery to repair a chest defect that was causing pressure on > his heart. > He now sports a titanium bar under his sternum. This will be > removed in > 2 years, not soon enough for Rob, who loves to work out and now has > restrictions from doing so. He is an incredible person full of spirit > and determination. He rarely complains about anything physical, > and has > dealt with all his diagnoses courageously. > has never been a huge fan of school, but now that he is in > college and majoring in criminal justice, his career aspirations have > come alive. I have never seen him this motivated. > This semester, he was diagnosed with mononucleosis, likely a > result of > the immunosuppression from the medications. He drove home on a Tuesday > with a sinus infection and eyes nearly swollen shut with pink eye > infections. He only stayed home for 2 days and was back in class by > Friday of that week. > Needless to say, Rob is my hero! > I watched my mother suffer for years with rheumatoid arthritis, > beginning in her 40's. I had symptoms in my teens (hands) but ignored > them for years. I had an acute attack in my 20's that was > written off as > a viral infection; it did resolve. I still had intermittent hand pain. > At age 37, I was in a severe auto accident that broke my right femur > completely in half. I also had a head injury and scapular > fracture, as > well as nerve and muscle damage to my thigh where the bone protruded. > After this accident, I started again with symptoms of RA, which > I still > ignored. About a year after was diagnosed with JAS, I was > wakingup in the middle of the night in pain and my hands forming > the letter C > with stiffness. Then pain began in knees, feet, and I finally > consultedmy doctor. I was sent on to the rheumatologist and > ultimately received a > diagnosis of RA. It has gotten progressively worse. I've had > periods of > remission while starting methotrexate, and also with Enbrel, but > eventually, my body found a way around it and I flared again. > I've spent > about the last year and a half on prednisone. Every time I try > to wean > off, I get a horrible flare that knocks me on my butt. Finally in > September of last year, I agreed to try Rituxan after failing on > Humira.I had an anaphylactic reaction. So in November, I tried > Orencia. It can > take up to 6 months to 'kick in'. I have been growing more and more > upset that it hasn't started working yet. Have lived on prednisone > again, tried to wean in the hopes that Orencia would start > working but > no dice. About 3 weeks ago, I joined a new initiative at work to > get in > better shape and eat right. I'm proud to say I've been exercising > religiously. One of the things that has helped me the most has been > Arthritis Aquatics sponsored by the Arthritis Foundation at our > local Y. > I also received my 6th infusion of Orencia last Friday. I woke > Saturdaymorning, and although in my usual pain, noticed that my > stiffness was > about 1/2 OF WHAT IT USUALLY IS!! I'm still having much the same > pain in > knees, elbows, hands, etc, but my stiffness has improved! I'm > also, I > think, feeling the benefits of the increased exercise. I have > hope!!! I > have to think that everything is falling into place, finally! > I'm still > on 10mg of prednisone a day, and won't try to wean further until my > monthly infusion in April. But after that, I will be weaning > again! I'm > so excited! Many of you may have read my ranting and raving post > a few > months ago. I felt really awful about that, considering what my > own son > and so many other kids on the list have gone through...so I > wanted to > share my great news and blossoming hope! > I also hope that Rob's story will offer hope and encouragement to > everybody here. He is a fighter, and he has been such a model > for me, > and yet I still have not handled things nearly as well as he has. > If you have read all this you are special indeed! > and Rob 18 JAS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Thanks Michele: our insurance does cover it and I've been on 5 NSAIDS before trying the Celebrex so that certainly is not an issue! Sending prayers & happy thoughts, Beth :-) Update on us (long) > > > > Hello group > I've gotten hit and miss about posting, but for those who don't know > me... > My son Rob is 18 (almost 19) and was diagnosed with juvenile > ankylosingspondylit is at age 12. However, this was not the start > of his problems. > suffered from severe lung issues beginning at age 1. He was > diagnosed with asthma, but all the treatments never did get him under > good control. Early on in his school career it became evident that > 's learning processes were different. He had great difficulty > mastering written material and expressing himself in writing. We have > spent years working with tutors, finally utilizing medication for > inattentiveness in order to help achieve success in school. > Amazingly, graduated from his high school, a blue ribbon school > of excellence, with a 3.1 GPA. Pretty impressive! We are very > proud of > him. > At age 12, suddenly lost the ability to walk because of severe > pain. It was found that he had effusions in both hip joints, as > well as > inflammation in his spine and heels. He was diagnosed with juvenile > ankylosing spondylitis. Thankfully, after years of treatment, > does quite well now with this form of arthritis, and has few > issues with > walking. Interestingly, the treatment medications drastically improved > his lung function. It is believed that the inflammation from the JAS > initially affected his lungs before making its appearance in his > joints.Not two years after the arthritis diagnosis, was > diagnosed with > Alport syndrome, an unrelated kidney ailment. Thankfully, he is doing > well. His kidney function at this time is normal. However, the > possibility of the disease ultimately affecting his kidney function > precludes being able to take any sort of NSAID (advil, > ibuprofen,naproxen, celebrex and the like) for his arthritis > pain. It is unknown > whether his kidneys will eventually fail and he might require dialysis > or transplant. > Last summer, before his freshman year of college, he underwent major > surgery to repair a chest defect that was causing pressure on > his heart. > He now sports a titanium bar under his sternum. This will be > removed in > 2 years, not soon enough for Rob, who loves to work out and now has > restrictions from doing so. He is an incredible person full of spirit > and determination. He rarely complains about anything physical, > and has > dealt with all his diagnoses courageously. > has never been a huge fan of school, but now that he is in > college and majoring in criminal justice, his career aspirations have > come alive. I have never seen him this motivated. > This semester, he was diagnosed with mononucleosis, likely a > result of > the immunosuppression from the medications. He drove home on a Tuesday > with a sinus infection and eyes nearly swollen shut with pink eye > infections. He only stayed home for 2 days and was back in class by > Friday of that week. > Needless to say, Rob is my hero! > I watched my mother suffer for years with rheumatoid arthritis, > beginning in her 40's. I had symptoms in my teens (hands) but ignored > them for years. I had an acute attack in my 20's that was > written off as > a viral infection; it did resolve. I still had intermittent hand pain. > At age 37, I was in a severe auto accident that broke my right femur > completely in half. I also had a head injury and scapular > fracture, as > well as nerve and muscle damage to my thigh where the bone protruded. > After this accident, I started again with symptoms of RA, which > I still > ignored. About a year after was diagnosed with JAS, I was > wakingup in the middle of the night in pain and my hands forming > the letter C > with stiffness. Then pain began in knees, feet, and I finally > consultedmy doctor. I was sent on to the rheumatologist and > ultimately received a > diagnosis of RA. It has gotten progressively worse. I've had > periods of > remission while starting methotrexate, and also with Enbrel, but > eventually, my body found a way around it and I flared again. > I've spent > about the last year and a half on prednisone. Every time I try > to wean > off, I get a horrible flare that knocks me on my butt. Finally in > September of last year, I agreed to try Rituxan after failing on > Humira.I had an anaphylactic reaction. So in November, I tried > Orencia. It can > take up to 6 months to 'kick in'. I have been growing more and more > upset that it hasn't started working yet. Have lived on prednisone > again, tried to wean in the hopes that Orencia would start > working but > no dice. About 3 weeks ago, I joined a new initiative at work to > get in > better shape and eat right. I'm proud to say I've been exercising > religiously. One of the things that has helped me the most has been > Arthritis Aquatics sponsored by the Arthritis Foundation at our > local Y. > I also received my 6th infusion of Orencia last Friday. I woke > Saturdaymorning, and although in my usual pain, noticed that my > stiffness was > about 1/2 OF WHAT IT USUALLY IS!! I'm still having much the same > pain in > knees, elbows, hands, etc, but my stiffness has improved! I'm > also, I > think, feeling the benefits of the increased exercise. I have > hope!!! I > have to think that everything is falling into place, finally! > I'm still > on 10mg of prednisone a day, and won't try to wean further until my > monthly infusion in April. But after that, I will be weaning > again! I'm > so excited! Many of you may have read my ranting and raving post > a few > months ago. I felt really awful about that, considering what my > own son > and so many other kids on the list have gone through...so I > wanted to > share my great news and blossoming hope! > I also hope that Rob's story will offer hope and encouragement to > everybody here. He is a fighter, and he has been such a model > for me, > and yet I still have not handled things nearly as well as he has. > If you have read all this you are special indeed! > and Rob 18 JAS > > 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.