does anyone know...

Post here with questions about other autoimmune diseases or conditions.

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Debbie
Posts: 3
Joined: Fri Apr 23, 2010 2:23 pm

does anyone know...

Post by Debbie »

as it has not really been explained to me, or so that i understood anyway :lol:
I have RA, but i am also HLA B27+
My rheumy said there was a chance i could go on to develop AS
I have had a spinal and pelvic xray, and MRI scan, but nothing could be seen yet to suggest
i was getting AS, other than lower back pain and stiffness.
I also have cervical spondylosis quite bad.
Anyway, is the Iritis due to the RA or to the HLA B27!?
cheers :mrgreen:
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: does anyone know...

Post by Mike Bartolatz »

most likely all of your problems are related to the HLA B27 gene related to uveitis as well as to ankylosing spondylitis, reactive arthritis, psoriatic arthritis, Crohn's disease and ulcerative colitis.
often cervical arthritis is present along with bamboo spine and changes in the pelvis. if psoriatic arthritis is present (no rash required) then discolored toe nails and finger nails and swelling of the index finger and big toe's occurs. there can be overlap where symptoms of all of the above things can appear together,
other geens are the IL23RN, ERAP1, IL1R2 and ANXRT2 genes seen with these things as well as autoimmune thyroid disease and Breast cancer.
if you live in the UK, I highly recommend that you get Professor William Ayliffe in London involved. or Professor Murray in Bristol or Professor Forrester in ABerdeen. you mentioned that you are on Methotrexate therapy but it often has to be at a higher dose than rheumatologists are used to giving but this dose is for only two years to retrain the immune sytem to stop attacking the eyes. the goal is off all steroids without inflammaton, somtimes the biological response modifying drugs Remicade or humira are added to achieve this.

I hope this helps,
Mike
Mike Bartolatz
Moderator
Debbie
Posts: 3
Joined: Fri Apr 23, 2010 2:23 pm

Re: does anyone know...

Post by Debbie »

Thanks for that Mike..its all very complicated. Yes i am in UK.
I have been on methotrexate for 3 years now, and no one ever mentioned about only being on it for 2 years...i took 6 tablets for first 2 and half years, and the rheumy nurse let me reduce to 5 due to side effects, making me groggy and nauseous.
I have not got discolored toe nails and finger nails and swelling of the index finger and big toe's occurs.
The meds have definately had an effect on my eyes, as i havent had an attack of Iritis for 2 years now..but my RA is no different really. I am next to see my Rheumatologist in July.
I dont know how i would go about seeing the Professors you mentioned, would that have to be privately and not on NHS?
Am off to emergency eye clinic tomorrow to get my eyes checked out.
Thanks again for the info!
8)
Debbie
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: does anyone know...

Post by Mike Bartolatz »

From my understanding, you can be seen privately by Mr Ayliffe or you can get a referral to him through the NHS. most often this is accomplished by 'pushing' the issue with either an opthalmologist or by getting your primary care physician to work to get an approval. either way you MUST be seen by an ocular immunologist. I suggest that you join the support group at http://www.uosg.org where there are several members from the UK who have been able to get appointments with various doctors to include Professor Ayliffe or Professor Murray in Bristol, Forrester in Scotland etc.
these members of the support group are very good at helping others from the UK work their way through the B.S. found with gatekeepers, ego's of doctors etc.

I look forward to your introduction at the above support group and I'll greet you there as I help there too.

wishing you the very best,
Mike Bartolatz
Mike Bartolatz
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