My daughter has had juvenile rheumatoid arthritis and chronic uveitis since she was 2 1/2 years old diagnosed in 10/2004. She was started out on
Suflazalazine and Cyclosporine and MTX pills to no success. She was switched to MTX injection and that brought her JRA under control and started to work a
little on her chronic uveitis. They started her on Remicade IV infusions the following 06/2005. She was on Remicade until 05/2008.
She is now 7 years old. She recently started to have psoriasis while being on Remicade. The latest thing that has worked to some degree is MTX weekly injection, Remicade IVnfusion every 5 weeks, and 2 dilation drops - Cyclogyl and Phenylephrine, at bedtime for the last 3 years. Her count for eye inflamation was about 7 in each eye and stayed there for about the last year. She started at 30. In May 2008, she was diagnosed with high kidney inflamation with excessive protein and blood in her urine. She was taken off Remicade. Now her eye inflammation have gotten worse to be back to what it was when she first diagnosed - 30 count. She was put on Prednisolone eye drops and oral Prednisone. Her eye pressure went way high and was taken off the steroid eye drops, put on eye pressure drops and kept on the prednisone oral pills. Then, they tried Cellcept and Azathioprine. She was taken off these very shortly afterward as it caused her to have extreme nightmares after only a few days, screaming 4 - 5 times a night and bed wetting .
We went for a 3rd opinion at Wilmer Eye Institute at John Hopkins with Dr. Nguyen. He put her on Zenapax in 01/2009. It worked after 3 infusions but now her eyes are back to a count of 25 after a week. She was on Zenepax for about 2 months. The Zenepax would work only for 2 weeks and then quit. They have taken her off Zenapax and put her back on Remicade in 03/2009. She is still on MTX weekly injection. The Zenapax seemed to have gotten rid of her psoriasis though. She is still on oral Prednisone, eye dilation drops at bedtime.
The Remicade is not working the 2nd time around. She is still on MTX, eye dialation drops, oral Prednisone, Leucovorin (for MTX side affects). She is also on Singular for asthma and allergies and an inhaler when needed. She is also on Zyrtec.
He gave very few choices for her:
1. increase Remicade again to 9 mg/kilo for 2 months 4 week apart and go back 2 weeks after that to see him - decided to try this one
2. introduce a 3rd autoimmune drug besides her MTX and Remicade like CellCept, Azathioprine, Cyclosporine - not an option, 3 drugs too much
3. drop MTX, keep Remicade and use another drug like CellCept, Azathioprine, Cyclosporine - not an option, these drugs tried before with severe side affects
4. try to get into a trial - may be but probably not as she is too young
5. go to Retisert eye steroid implant and also put in a tube shunt to relieve pressure - last resort
I asked about chlorambucil. Not really want to but as a last resort. He said that he went to a conference where Retisert was being used in 5 year olds with pretty good success.
We did the Remicade at 9 and went back for a 2 week appointment after that at local eye specialist on 6/12. Her eyes got worse. Her local pediatric rhematologist and local pediatric opthamologist want to try something else besides above. They want to increase her MTX to .8 cc next week and .9 the week after that. They want to push Remicade every 2 weeks for awhile @10 mg/kilo that would be resulting 20 mg/kilo and watch her kidney inflammation with urine analysis to see if it goes up. If it goes up, time to quit Remicade and onto something else. This is based on a study at Columbia recently her pediatric rheumatologist said. If Remicade has to be stopped, they want to use chorambucil pills.
I really don't want to try the above but I dont' want do the Retisert yet either.
Her local eye specialist recommended going for a 4th opinion at Wills with Alex Levin or to Boston to Dr. Foster.
My husband wants our daughter to just get the Retisert implant and get it overwith. I kind of do also but her local specialists say not to because of the side affects and the surgery should not be done until the inflammation is under control first as surgery will aggrevate it even more. We are at a loss and don't know what to do. Her eye site is getting worse. She does already have a cataract starting in her right eye. Currently her eye pressure bounces around 12 - 18 in both eyes and is considered normal per her local specialist.
Our daughter always has her eye pressure go immediately way up when doing eye steroid drops. When we discussed Retisert with Dr. Nguyen, he said that he would put in an tube shunt to relieve the eye pressure at the same time as the implant surgery is done so not having to go back for another surgery with her history. I don't know much about the recovery time with Retisert either. He only said 1 eye at a time first.
When she takes any meds, she most always falls into the small not happens section of side affects.
My feeling is that the Remicade caused the kidney inflammation. We are being told it was no, as the kidney biopsy was inconclusive.
If you were to look at my daughter, you could not tell that anything is wrong with her. Her MTX handles her arthritis great.
We live in PA.
I have been in www.iritis.org where I was told to go here by Mike and Renee.
Any help or suggestions will greatly be appreciated.
Christina
Edited by Webmaster
She is now 7 years old. She recently started to have psoriasis while being on Remicade. The latest thing that has worked to some degree is MTX weekly injection, Remicade IVnfusion every 5 weeks, and 2 dilation drops - Cyclogyl and Phenylephrine, at bedtime for the last 3 years. Her count for eye inflamation was about 7 in each eye and stayed there for about the last year. She started at 30. In May 2008, she was diagnosed with high kidney inflamation with excessive protein and blood in her urine. She was taken off Remicade. Now her eye inflammation have gotten worse to be back to what it was when she first diagnosed - 30 count. She was put on Prednisolone eye drops and oral Prednisone. Her eye pressure went way high and was taken off the steroid eye drops, put on eye pressure drops and kept on the prednisone oral pills. Then, they tried Cellcept and Azathioprine. She was taken off these very shortly afterward as it caused her to have extreme nightmares after only a few days, screaming 4 - 5 times a night and bed wetting .
We went for a 3rd opinion at Wilmer Eye Institute at John Hopkins with Dr. Nguyen. He put her on Zenapax in 01/2009. It worked after 3 infusions but now her eyes are back to a count of 25 after a week. She was on Zenepax for about 2 months. The Zenepax would work only for 2 weeks and then quit. They have taken her off Zenapax and put her back on Remicade in 03/2009. She is still on MTX weekly injection. The Zenapax seemed to have gotten rid of her psoriasis though. She is still on oral Prednisone, eye dilation drops at bedtime.
The Remicade is not working the 2nd time around. She is still on MTX, eye dialation drops, oral Prednisone, Leucovorin (for MTX side affects). She is also on Singular for asthma and allergies and an inhaler when needed. She is also on Zyrtec.
He gave very few choices for her:
1. increase Remicade again to 9 mg/kilo for 2 months 4 week apart and go back 2 weeks after that to see him - decided to try this one
2. introduce a 3rd autoimmune drug besides her MTX and Remicade like CellCept, Azathioprine, Cyclosporine - not an option, 3 drugs too much
3. drop MTX, keep Remicade and use another drug like CellCept, Azathioprine, Cyclosporine - not an option, these drugs tried before with severe side affects
4. try to get into a trial - may be but probably not as she is too young
5. go to Retisert eye steroid implant and also put in a tube shunt to relieve pressure - last resort
I asked about chlorambucil. Not really want to but as a last resort. He said that he went to a conference where Retisert was being used in 5 year olds with pretty good success.
We did the Remicade at 9 and went back for a 2 week appointment after that at local eye specialist on 6/12. Her eyes got worse. Her local pediatric rhematologist and local pediatric opthamologist want to try something else besides above. They want to increase her MTX to .8 cc next week and .9 the week after that. They want to push Remicade every 2 weeks for awhile @10 mg/kilo that would be resulting 20 mg/kilo and watch her kidney inflammation with urine analysis to see if it goes up. If it goes up, time to quit Remicade and onto something else. This is based on a study at Columbia recently her pediatric rheumatologist said. If Remicade has to be stopped, they want to use chorambucil pills.
I really don't want to try the above but I dont' want do the Retisert yet either.
Her local eye specialist recommended going for a 4th opinion at Wills with Alex Levin or to Boston to Dr. Foster.
My husband wants our daughter to just get the Retisert implant and get it overwith. I kind of do also but her local specialists say not to because of the side affects and the surgery should not be done until the inflammation is under control first as surgery will aggrevate it even more. We are at a loss and don't know what to do. Her eye site is getting worse. She does already have a cataract starting in her right eye. Currently her eye pressure bounces around 12 - 18 in both eyes and is considered normal per her local specialist.
Our daughter always has her eye pressure go immediately way up when doing eye steroid drops. When we discussed Retisert with Dr. Nguyen, he said that he would put in an tube shunt to relieve the eye pressure at the same time as the implant surgery is done so not having to go back for another surgery with her history. I don't know much about the recovery time with Retisert either. He only said 1 eye at a time first.
When she takes any meds, she most always falls into the small not happens section of side affects.
My feeling is that the Remicade caused the kidney inflammation. We are being told it was no, as the kidney biopsy was inconclusive.
If you were to look at my daughter, you could not tell that anything is wrong with her. Her MTX handles her arthritis great.
We live in PA.
I have been in www.iritis.org where I was told to go here by Mike and Renee.
Any help or suggestions will greatly be appreciated.
Christina
Edited by Webmaster
