Back with an update and more questions

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jdc
Posts: 9
Joined: Tue Feb 08, 2011 8:15 am

Back with an update and more questions

Post by jdc »

Hello,
I posted my iritis ordeal on this board last year. I have been away from the board, but not the disease, unfortunately. I will try to provide a brief summary of my continuing ordeal. Hopefully it will help someone and maybe someone can provide me with some suggestions also.
I have a family history of auto immune disease, iritis, and arthitic conditions. Yeah for me! My grandfather had 2 bouts with iritis, about 30-40 years apart. He had severe arthritis which caused his upper spine to curve. Very painful for him, but he never complained. My father is HLAB27 positive and has reiters syndrome and rheumatoid arthritis. He has had 2 bouts of iritis, 35 years apart. He is currently on Rhemacaide(not sure of the spelling) IV treatments every 6 weeks.
As for me, I am HLAB27 positive and have chronic iritis. I have had a myriad of blood work tests for auto-immune disease with no other diagnosis as of yet. I had my first iritis flare up in February 2010. I was given pred forte drops, but they did not work. I was able to get it under control with Durezol drops and high doses of oral prednisone. I started at 60mg for 3-4 days, then 40mg for 3-4 days, then 20, 10, 5, etc. Within 2 weeks I was off all meds. My eyes remained quite for 6 weeks. Then, another flare up. I used the same treatment, and had the same result. This pattern has continued to repeat itself until about 4-5 months ago. I was on my 9th flare up when I finally got in to see the rheumatologist. He started me on methotrexate-12.5mg per week. After 2 weeks, I had my 10th flare up, so he increased my methotrexate to 20 mg. I was able to make it 8 weeks before I had another flare up(no. 11). This was the longest my eyes had been quite. This one didn't go quietly. I treated it the same, but after trying to taper off the oral prednisone, it flare up again to where it was originally. I started over at the 2 week mark with 60mg oral prednisone, and did my usual treatment again and it finally went away. It was basically like 2 flare ups in one. I was beginning to wonder if my body was building up a tolerance to the treatment.
That brings me to my current situation. I am now 2 and 1/2 weeks in to flare up number 12. It is the worst one I have have ever had. It is not responding very well to the Durezol and oral preds. I started at 60mg for 6 days, then 40 for 7 days, the 20 for 2 days and had to go back to 60 due to the fact it was flaring up as bad as it did on day 1. I usually dont have much pain associated with mine, but thats not the case this time. I take my oral preds at 8AM everyday. I am already hurting by then. I get relief in the evening when the meds get to work, but it's like starting over ever morning. I am not seeing progress this time at all. It looks just as bad while on the oral pred and durezol drops as it did before taking them. I am really worried my body is not responding anymore to them. Couple that with the fact I have been on methotrexate for 6 months, which is supposed to retrain my immune system and keep it from attacking my eyes, and I am pretty concerned at this point.
My rheumatologist has talked about starting me on Rhemacaide treatments since the methatrexate seems to not be working. I really don't want to go that route yet. I am only 37. There are some alternatives, but with higher side effects and risks. I was wondering if anyone has had any luck with other meds that didn't respond to methatrexate. I know methatrexate usually works, but I really don't have any confidence in it right now. I appreciate any info anyone can offer. I live in eastern KY, so any doctors in the area anyone can recommend would be great. Thanks for reading.
Jason
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Back with an update and more questions

Post by Mike Bartolatz »

I suggest you either see Dr Kaplan there in Kentucky or go to see DR Dino Klisovic in Columbus, Ohio.
what your rheumatologist has suggested is often needed but the dose of MTX is usually switched to Injectible form or another drug like Cellcept is tried alone or in combination with Remicade (best results very expensive and infused)or humira (cheaper and inectible at home).
you keep talking about pain, where is it? are you on a dilating drup to help with the pain in your eyes from the iris trying to adhere to the lens? are you getting frequent pressure checks while on Durezol or any steroid as they can increase pressure inside your eyes (especially durezol which should only be used short term as in 2 weeks at a time).

has the ophthalmologist suggested injection of corticosteoid to tissue surrounding your eyes to stop the inflammatory response? (not into the eye itself)

if you are having joint pain it could be the start of forms of arthritis such as ankylosing spondylitis, reactive arthritis, irritable bowel disease, psoriasis/psoriatic arthritis and ulcerative colititis. all linked to HLA B27 and uveitis.

contact information for the above doctors can be found at http://www.uveitis.org in the PATIENT information section of the site on the USA specialist list. if Possible I suggest Dino Klisovic in Columbus Ohio.

wish you the very best,
Mike
Mike Bartolatz
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