Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Angie:Sorry to hear about all Allie is going thru. I do have a comment for you. Any child, before being placed on Remicade or Enbrel, needs to have a TB test (or PPD as it is called) prior to going on the drug. If a person has been exposed to TB and goes on Remicade, there is a risk of activating TB, IF there had been an exposure. You can read more about it on the web. TB exposure is pretty rare in this country. But my son's ped rheumy does make sure that all kids are tested for TB prior to beginning any of the the anti-TNF drugs. Just FYI. Statistically speaking there have been excellent results with remicade and it sounds very hopeful for your daughter to do quite well! Best wishes! and Rob 14 Spondy On Tue, 6 Jan 2004 17:34:46 -0800 "Angie Silver" <jaadsilver@...> writes: Hi group. Allie had her weekly checkup at the eye doctor and we were told that she is in yet another flare up of uveitis. The doctor suggested that it is probably time for Remicade. He thinks that she is better off with this than on steroids for the 6th time. Is anyone here familiar with Remicade and can you offer any advice or comments on it? We will be required to travel to Duke University once monthly for the IV. It's about a 2 hour trip one way...ugh. Allie is just 6 years old and it's so hard to think that she's on all these medications with so many side effects at such a young age...."sigh" On a side note, could I get added to the list??? Angie Allie 6 years, pauciarticular arthritis since 18 months with chronic uveitis Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of Medicine Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi group. Allie had her weekly checkup at the eye doctor and we were told that she is in yet another flare up of uveitis. The doctor suggested that it is probably time for Remicade. He thinks that she is better off with this than on steroids for the 6th time. Is anyone here familiar with Remicade and can you offer any advice or comments on it? We will be required to travel to Duke University once monthly for the IV. It's about a 2 hour trip one way...ugh. Allie is just 6 years old and it's so hard to think that she's on all these medications with so many side effects at such a young age...."sigh" On a side note, could I get added to the list??? Angie Allie 6 years, pauciarticular arthritis since 18 months with chronic uveitis Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of Medicine Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hi Angie, My 9 year old son has been on 8-weekly Remicade/Infliximab infusions for around 18 months now. He has Systemic JRA and the Remicade has been absolutely wonderful, allowing us to wean him off the steriods completely. We have had no adverse reactions at all so far and although he isn't totally cured, his arthritis is very much in remission. Steriods can cause lots of awful side-effects and should not really be used long-term. Remicade has completely changed our lives and his wheelchair has been practically unused since he started on it - what more can I say? To join the list, go to / If you need any other info please let me know. Oliver -----Original Message-----From: Angie Silver [mailto:jaadsilver@...]Sent: 07 January 2004 01:35 Subject: Remicade vs. Prednisone Hi group. Allie had her weekly checkup at the eye doctor and we were told that she is in yet another flare up of uveitis. The doctor suggested that it is probably time for Remicade. He thinks that she is better off with this than on steroids for the 6th time. Is anyone here familiar with Remicade and can you offer any advice or comments on it? We will be required to travel to Duke University once monthly for the IV. It's about a 2 hour trip one way...ugh. Allie is just 6 years old and it's so hard to think that she's on all these medications with so many side effects at such a young age...."sigh" On a side note, could I get added to the list??? Angie Allie 6 years, pauciarticular arthritis since 18 months with chronic uveitis Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of Medicine Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 --Angie.. Im so sorry to read that Allie is having more problems with her eyes. I hope that the remicade works wonders for her and things start to calm down for her soon. Hugs Helen and (6, systemic) - In , " Angie Silver " <jaadsilver@t...> wrote: > Hi group. Allie had her weekly checkup at the eye doctor and we were told that she is in yet another flare up of uveitis. The doctor suggested that it is probably time for Remicade. He thinks that she is better off with this than on steroids for the 6th time. > > Is anyone here familiar with Remicade and can you offer any advice or comments on it? We will be required to travel to Duke University once monthly for the IV. It's about a 2 hour trip one way...ugh. Allie is just 6 years old and it's so hard to think that she's on all these medications with so many side effects at such a young age.... " sigh " > > On a side note, could I get added to the list??? > > Angie > Allie 6 years, pauciarticular arthritis since 18 months with chronic uveitis > Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of Medicine > Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine > Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Dear Angie, My son was diagnosed with systemic JRA and is now on Enbrel (same class of drugs as Remicade). The nice thing is that it is given as a subcutaneous injection twice a week (we give it at home)....maybe this would be easier on your daughter and she would have the same results. There is also a higher incidence of allergic reaction to Remicade than Enbrel. God Bless, Marguerite and (4) Re: Remicade vs. Prednisone --Angie..Im so sorry to read that Allie is having more problems with her eyes. I hope that the remicade works wonders for her and things start to calm down for her soon.Hugs Helen and (6, systemic)- In , "Angie Silver" <jaadsilver@t...> wrote:> Hi group. Allie had her weekly checkup at the eye doctor and we were told that she is in yet another flare up of uveitis. The doctor suggested that it is probably time for Remicade. He thinks that she is better off with this than on steroids for the 6th time. > > Is anyone here familiar with Remicade and can you offer any advice or comments on it? We will be required to travel to Duke University once monthly for the IV. It's about a 2 hour trip one way...ugh. Allie is just 6 years old and it's so hard to think that she's on all these medications with so many side effects at such a young age...."sigh"> > On a side note, could I get added to the list???> > Angie> Allie 6 years, pauciarticular arthritis since 18 months with chronic uveitis> Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of Medicine> Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine> Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hi Oliver, I was so happy to read about Damien's success with the Remicade treatments. That's wonderful, that he's had no adverse affects at all. And even better, of course, that after all the struggles over the years you've finally found something that's able to control the arthritis. I hope that everything remains stable for a very long time, indefinitely. One question. I wonder about your son having had any joint damage in the past, when things were more out of control, that still causes residual problems for him now? Hips, maybe? I hope this new year is a very good one for Damien. And you, too Take Care, Georgina Super Zola wrote: > Hi Angie, > > My 9 year old son has been on 8-weekly Remicade/Infliximab infusions for > around 18 months now. He has Systemic JRA and the Remicade has been > absolutely wonderful, allowing us to wean him off the steriods > completely. We have had no adverse reactions at all so far and although > he isn't totally cured, his arthritis is very much in remission. > Steriods can cause lots of awful side-effects and should not really > be used long-term. Remicade has completely changed our lives and his > wheelchair has been practically unused since he started on it - what > more can I say? > > If you need any other info please let me know. > > Oliver > > -----Original Message----- > From: Angie Silver [mailto:jaadsilver@...] > Hi group. Allie had her weekly checkup at the eye doctor and we were > told that she is in yet another flare up of uveitis. The doctor > suggested that it is probably time for Remicade. He thinks that she > is better off with this than on steroids for the 6th time. > > Is anyone here familiar with Remicade and can you offer any advice > or comments on it? We will be required to travel to Duke University > once monthly for the IV. It's about a 2 hour trip one way...ugh. > Allie is just 6 years old and it's so hard to think that she's on > all these medications with so many side effects at such a young > age.... " sigh " > > On a side note, could I get added to the list??? > > Angie > Allie 6 years, pauciarticular arthritis since 18 months with chronic > uveitis > Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of Medicine > Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine > Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi there Georgina, Thanks for your email and wishing you and your family a great new year too. Damien's main problems now are one hip which is damaged and due to his age, we can't do anything about it. He has one leg shorter than the other so has one shoe modified to help with that. He is still a very poor eater, regularly taking 2 hours over a meal with or without our reminders to hurry. Some cateract damage to one eye (thank you prednisolone?), limited wrist movement and finally of course small stature. As he is actually growing now, albeit very, very slowly, we aren't receiving any growth treatments yet. How is Josh faring these days? Did you give Enbrel/Remicade a try? Oliver Re: Remicade vs. Prednisone Hi Oliver, I was so happy to read about Damien's success with the Remicade treatments. That's wonderful, that he's had no adverse affects at all. And even better, of course, that after all the struggles over the years you've finally found something that's able to control the arthritis. I hope that everything remains stable for a very long time, indefinitely. One question. I wonder about your son having had any joint damage in the past, when things were more out of control, that still causes residual problems for him now? Hips, maybe? I hope this new year is a very good one for Damien. And you, too Take Care, Georgina Super Zola wrote: > Hi Angie, > > My 9 year old son has been on 8-weekly Remicade/Infliximab infusions for > around 18 months now. He has Systemic JRA and the Remicade has been > absolutely wonderful, allowing us to wean him off the steriods > completely. We have had no adverse reactions at all so far and although > he isn't totally cured, his arthritis is very much in remission. > Steriods can cause lots of awful side-effects and should not really > be used long-term. Remicade has completely changed our lives and his > wheelchair has been practically unused since he started on it - what > more can I say? > > If you need any other info please let me know. > > Oliver > > -----Original Message----- > From: Angie Silver [mailto:jaadsilver@...] > Hi group. Allie had her weekly checkup at the eye doctor and we were > told that she is in yet another flare up of uveitis. The doctor > suggested that it is probably time for Remicade. He thinks that she > is better off with this than on steroids for the 6th time. > > Is anyone here familiar with Remicade and can you offer any advice > or comments on it? We will be required to travel to Duke University > once monthly for the IV. It's about a 2 hour trip one way...ugh. > Allie is just 6 years old and it's so hard to think that she's on > all these medications with so many side effects at such a young > age.... " sigh " > > On a side note, could I get added to the list??? > > Angie > Allie 6 years, pauciarticular arthritis since 18 months with chronic > uveitis > Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of Medicine > Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine > Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hi, Thanks for sharing Damien's update, Oliver. I guess our children still share a few of the same characteristics, having both traveled down the path of having systemic JRA since they were youngsters. I'm glad, though, that they both seem to be doing much better than they had been at earlier stages. No. Josh hasn't tried any of the biologicals at this point. We've just increased his MTX dose and are hopeful that will take care of his current issues. He's also just decreased his prednisone dose once again. This time, to his all-time lowest dose ever. Wish us luck Take Care, Georgina Super Zola wrote: > Hi there Georgina, > > Thanks for your email and wishing you and your family a great new year too. > > Damien's main problems now are one hip which is damaged and due to his age, > we can't do anything about it. He has one leg shorter than the other so has > one shoe modified to help with that. He is still a very poor eater, > regularly taking 2 hours over a meal with or without our reminders to hurry. > Some cateract damage to one eye (thank you prednisolone?), limited wrist > movement and finally of course small stature. As he is actually growing now, > albeit very, very slowly, we aren't receiving any growth treatments yet. > > How is Josh faring these days? Did you give Enbrel/Remicade a try? > > Oliver > > -----Original Message----- > From: Georgina [mailto:gmckin@...] > Hi Oliver, > I was so happy to read about Damien's success with the Remicade > treatments. That's wonderful, that he's had no adverse affects at all. > And even better, of course, that after all the struggles over the years > you've finally found something that's able to control the arthritis. I > hope that everything remains stable for a very long time, indefinitely. > One question. I wonder about your son having had any joint damage in the > past, when things were more out of control, that still causes residual > problems for him now? Hips, maybe? > > I hope this new year is a very good one for Damien. And you, too > > Take Care, > Georgina > > Super Zola wrote: > > Hi Angie, > > > > My 9 year old son has been on 8-weekly Remicade/Infliximab infusions for > > around 18 months now. He has Systemic JRA and the Remicade has been > > absolutely wonderful, allowing us to wean him off the steriods > > completely. We have had no adverse reactions at all so far and although > > he isn't totally cured, his arthritis is very much in remission. > > Steriods can cause lots of awful side-effects and should not really > > be used long-term. Remicade has completely changed our lives and his > > wheelchair has been practically unused since he started on it - what > > more can I say? > > > > If you need any other info please let me know. > > > > Oliver > > > > -----Original Message----- > > From: Angie Silver [mailto:jaadsilver@...] > > Hi group. Allie had her weekly checkup at the eye doctor and we were > > told that she is in yet another flare up of uveitis. The doctor > > suggested that it is probably time for Remicade. He thinks that she > > is better off with this than on steroids for the 6th time. > > > > Is anyone here familiar with Remicade and can you offer any advice > > or comments on it? We will be required to travel to Duke University > > once monthly for the IV. It's about a 2 hour trip one way...ugh. > > Allie is just 6 years old and it's so hard to think that she's on > > all these medications with so many side effects at such a young > > age.... " sigh " > > > > On a side note, could I get added to the list??? > > > > Angie > > Allie 6 years, pauciarticular arthritis since 18 months with chronic > > uveitis > > Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of > Medicine > > Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine > > Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Hi Georgina, Naturally I wish you and Josh the very best of luck with the prednisolone taper. We were over the moon when we finally got Damien off that awful stuff. Oliver Re: Remicade vs. Prednisone Hi, Thanks for sharing Damien's update, Oliver. I guess our children still share a few of the same characteristics, having both traveled down the path of having systemic JRA since they were youngsters. I'm glad, though, that they both seem to be doing much better than they had been at earlier stages. No. Josh hasn't tried any of the biologicals at this point. We've just increased his MTX dose and are hopeful that will take care of his current issues. He's also just decreased his prednisone dose once again. This time, to his all-time lowest dose ever. Wish us luck Take Care, Georgina Super Zola wrote: > Hi there Georgina, > > Thanks for your email and wishing you and your family a great new year too. > > Damien's main problems now are one hip which is damaged and due to his age, > we can't do anything about it. He has one leg shorter than the other so has > one shoe modified to help with that. He is still a very poor eater, > regularly taking 2 hours over a meal with or without our reminders to hurry. > Some cateract damage to one eye (thank you prednisolone?), limited wrist > movement and finally of course small stature. As he is actually growing now, > albeit very, very slowly, we aren't receiving any growth treatments yet. > > How is Josh faring these days? Did you give Enbrel/Remicade a try? > > Oliver > > -----Original Message----- > From: Georgina [mailto:gmckin@...] > Hi Oliver, > I was so happy to read about Damien's success with the Remicade > treatments. That's wonderful, that he's had no adverse affects at all. > And even better, of course, that after all the struggles over the years > you've finally found something that's able to control the arthritis. I > hope that everything remains stable for a very long time, indefinitely. > One question. I wonder about your son having had any joint damage in the > past, when things were more out of control, that still causes residual > problems for him now? Hips, maybe? > > I hope this new year is a very good one for Damien. And you, too > > Take Care, > Georgina > > Super Zola wrote: > > Hi Angie, > > > > My 9 year old son has been on 8-weekly Remicade/Infliximab infusions for > > around 18 months now. He has Systemic JRA and the Remicade has been > > absolutely wonderful, allowing us to wean him off the steriods > > completely. We have had no adverse reactions at all so far and although > > he isn't totally cured, his arthritis is very much in remission. > > Steriods can cause lots of awful side-effects and should not really > > be used long-term. Remicade has completely changed our lives and his > > wheelchair has been practically unused since he started on it - what > > more can I say? > > > > If you need any other info please let me know. > > > > Oliver > > > > -----Original Message----- > > From: Angie Silver [mailto:jaadsilver@...] > > Hi group. Allie had her weekly checkup at the eye doctor and we were > > told that she is in yet another flare up of uveitis. The doctor > > suggested that it is probably time for Remicade. He thinks that she > > is better off with this than on steroids for the 6th time. > > > > Is anyone here familiar with Remicade and can you offer any advice > > or comments on it? We will be required to travel to Duke University > > once monthly for the IV. It's about a 2 hour trip one way...ugh. > > Allie is just 6 years old and it's so hard to think that she's on > > all these medications with so many side effects at such a young > > age.... " sigh " > > > > On a side note, could I get added to the list??? > > > > Angie > > Allie 6 years, pauciarticular arthritis since 18 months with chronic > > uveitis > > Ped. Rheumy- Dr. Sara Sinal - Wake Forest University School of > Medicine > > Eyes - Dr. Grey Weaver - Wake Forest University School of Medicine > > Will start seeing Dr. Kreditch at Duke University starting March 9th. Quote Link to comment Share on other sites More sharing options...
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