Confused

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alisonbatchelor
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Confused

Post by alisonbatchelor » Thu Mar 11, 2010 1:07 pm

After suffering repeated bouts of iritis for 10 years, I finally had the blood test for HLA-B27 done in December. Given a family history of ulcerative colitis it was expected to be positive. However, it was negative.

Today however, I have been diagnosed with ankylosing spondylitis after x rays and blood tests. I have recently gone 40 but had back problems since my late teens. 10 years ago when I first got iritis I was screened for several stuff, including AS. Despite the x -ray showing some 'wear and tear' (which in fact an earler x-ray some years previously had also shown) I was given the all clear. The rheumatologist I am currently seeing says it is clear from the x-rays that I have had the condition for a long time.

A couple of questions. Do you think the negative HLA-B27 test is a mistake, as I have read AS is very rarely present if this marker isn't present.
Also, am I right to be extremely annoyed that this has not been picked up much sooner. I have been in agony at times, completely unable to move. I keep thinking if I had known this sooner I could have prevented it getting so bad.
alison batchelor

Mike Bartolatz
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Re: Confused

Post by Mike Bartolatz » Mon Mar 15, 2010 8:35 am

There are more genes involved with ankylosing spondylitis than just the HLA B27 gene.
the IL23RN and IL1R and IL1B genes can also be connected without having the HLA B27 gene present.
they are linked to AS, Psoriasis, Breast cancer and autoimmune thyroid disease all seen along with Uveitis in some individuals. the ARTS1 gene is also seen in Ankylosing spondylitis. there are other less commone genes too.
the main thing is that you now have an underlying condition which requires systemic treatment to quiet down so that your eyes can too quiet down. Methotrexate or cellcept might work for both conditions.

wishing you quiet eyes.
Mike

PS: I've been out of town, just returning late last night so I appologize for not responding sooner. msb
Mike Bartolatz
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alisonbatchelor
Posts: 17
Joined: Mon Mar 15, 2004 4:25 am

Re: Confused

Post by alisonbatchelor » Mon Mar 15, 2010 12:54 pm

Thanks Mike. Still can't believe I've finally been diagnosed with AS after all this time (I even remember being told a few years ago that I wouldn't have AS since it would have showed up before I was 30 and was mainly found in men). it was prof Ayliffe who recommended I see a rheumatologist so it's thanks to him that I;ve been diagnosed.
alison batchelor

Mike Bartolatz
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Re: Confused

Post by Mike Bartolatz » Mon Mar 15, 2010 1:23 pm

Hi Alison!
You are so very lucky to have Professor Ayliffe guiding you through this and that you have finally found a specialist rheumatologist who has now diagnosed your underlying disease. the numbers of men VS women really don't mean crap when YOU are the one that goes against the grain so to speak. just about ANYTHING is possible for anyone with the genetic profile required to come down with things. Not everyone with Ankylosing spondylitis (about 30%) has the HLA B27 gene.
not everyone with uveitis and AS has the HLA B27 gene (about 30%). within the last 3 or so years more genes have been implicated and it may well be that your former doctors haven't kept up with the research.
Hopefully Professor Ayliffe in conjunction with the new rheumatologist with find a way to stop your uveitis and stop the AS from progessing. are you on Methotrexate or Cellcept, I can't recall as it has been some time since your last post here.

wish you the best,
mike
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alisonbatchelor
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Joined: Mon Mar 15, 2004 4:25 am

Re: Confused

Post by alisonbatchelor » Mon Mar 15, 2010 4:04 pm

Hi Mike

The only medication I'm on at present is diclofenac. Due to cost I can only have the anti TNF drugs if I'm really bad. I've been given info on methotrexate but no decision made yet. Really worried about the side effects. How commomn / rare are side effects with this drug? Currently my eyes are not in a flare but have felt on the verge for weeks. I've also got considerable pain and stiffness in my hands and wrists and I'm really tired all the time.

Take care everyone
alison batchelor

Mike Bartolatz
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Re: Confused

Post by Mike Bartolatz » Tue Mar 16, 2010 12:45 pm

with your increased pain and stiffness, the inflammation will cause fatigue to increase. if you are experiencing increased muscle pain as AS is considered to be a connective tissue disease too. if your index fingers are swollen, it might indicate that psoriatic arthritis is also present. look at your finger and toe nails to see if you also have some discoloration sometimes mistaken for a fungal infection. often this occurs in the great toe for example with some swelling there as well.
methotrexat can have side effects such as nausea and fatigue. many patients have no symptoms. if they become a problem, there is absolutely no reason to continue, switching to something such as cellcept can resolve this.
talk to Professor Ayliffe about this. the TNF A drugs don't seem to stop progression of arthritis from what I've read. you can do a google search on them and the articles should come up. the DMARD drugs such as MTX and cellcept will help with your eyes as well as with the arthritis.

wish you the best,
Mike
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alisonbatchelor
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Joined: Mon Mar 15, 2004 4:25 am

Re: Confused

Post by alisonbatchelor » Tue Mar 16, 2010 1:30 pm

Not actually under Prof Ayliffe as such. Went to see him privately in November (I live 200 miles away). But he did say I could go back when ever I felt like it. Seems now might be a good time.

I don't have any discoloured nails thankfully. I have read that a low / no starch diet can help. What is your opinion on this?

Take care

alison
alison batchelor

Mike Bartolatz
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Re: Confused

Post by Mike Bartolatz » Tue Mar 16, 2010 1:38 pm

you can be tested for Celiac disease (coeliac in the UK) which can appear along with many autoimmune disease processes.
it isn't a bad Idea to use only whole grain foods in my LAY opinion. if you have never had a problem with gluten before, it could be that the inflammation is causing the fatigue (stress can cause it too). Steroid use can sometimes cause various side effects - usually too much energy but each of us is different so talk to your doctors about it. I thing a visit to Professor Ayliffe wouldn't harm anything and it might put your mind at ease a bit. in my experience, most local doctors don't connect things together and Professor A is one of the Best in the World with regard to Uveitis and underlying conditions.
most local doctors treat with only steroids BTW, having NO FORMAL training like that of Professor A in use of DMARD drugs or other classes of drugs to treat the immune system which is causing the mischief in the first place.

wish you the very best Alison,
Mike
Mike Bartolatz
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Mike Bartolatz
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HLA B27, ANTXR2, IL1R2, IL23R. ERAP1 (formerly ARTS1) and AS

Post by Mike Bartolatz » Tue Mar 16, 2010 2:22 pm

http://parsplanitisforum.yuku.com/topic/28

here are some newly discovered genetic links to Ankylosing spondlyitis and other autoimmune disease processes
recently the ANTXR2 and IL1R2 genes were discovered and the association with IL23R and ERAP1 (formerly ARTS!) genes were confirmed so in addition to HLA B27 the following genes are linked in anglo american and european persons:

HLA B27
ANTXR2
IL1R2
IL23R
ERAP1 (formerly ARTS1)
Mike Bartolatz
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alisonbatchelor
Posts: 17
Joined: Mon Mar 15, 2004 4:25 am

Re: Confused

Post by alisonbatchelor » Wed Mar 17, 2010 12:57 pm

Thanks Mike for all your advice and help. I've arranged to see Prof Ayliffe next month when I'm next in London. Since as yet I've not been put on any medication specifically for the AS I feel I really need some good advice at the moment.
All the best
alison
alison batchelor

Mike Bartolatz
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Re: Confused

Post by Mike Bartolatz » Wed Mar 17, 2010 1:23 pm

Alison,
please thank Professor Ayliffe for his continued good work and concern for all of us with uveitis and OID. It is a comfort to know of his availability as the BEST specialist in the UK wiilling to go the extra mile for his patients. I do not know him personally as I live in the USA but I have followed some of his patients who have been extremely happy with care they have received through him in the past.
I hope that he can help you get to remission from your uveitis and also help with meds to treat your ankylosing spondylitis and all that that can cause with body systems, joints etc.
have you developed severe dry eyes?
have you been tested for amyloidosis or antiphospholipid syndrome which can impact the vascular system and which can occur in AS?

wish you the very best,
Mike
Mike Bartolatz
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alisonbatchelor
Posts: 17
Joined: Mon Mar 15, 2004 4:25 am

Re: Confused

Post by alisonbatchelor » Sun Apr 18, 2010 9:18 am

Hi Mike

Saw Prof Ayliffe last week. Now on a steroid sparring treatment and he is going to contact my rheumatologist to treat both my AS and iritis together. Currently waiting to be approved for anti- TNF treatment.

Not too great at present. Probs with pain in my ribs, hips, wrist and fingers. Also extreme fatigue, night fevers and bowel problems (not passing blood, but pain and frequency). Going to be checked for IBD in the near future. Still only on diclofenac for time being.

Work being very difficult to the point that I have decided to look for alternative employment (but I won't go quietly). Just like a couple of years ago when someone was diagnosed with MS, pressure is being put on me and my competancy is being questioned since I received my diagnosis. The stress is making me worse and my health just isn't worth it.

Yes, I do have dry eyes caused by blepharitis which started about 3 years ago (and also interestingly a dry mouth at times and dry patches of skin) and also loss of appetite (but no resulting loss of weight).

Prof Ayliffe is very interested in my mothers HLA status as I am negative, yet behaving in a 'typical' HLA-B27 positive fashion with her having ulcerative colitis.

Best wishes
alison
alison batchelor

Mike Bartolatz
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Re: Confused

Post by Mike Bartolatz » Mon Apr 19, 2010 2:45 pm

print out the genes I have posted in a response above and give them to Professor Ayliffe as he might be unaware of them.
do you have allergy to wheat which can cause bloating and celiac disease?
have you been tested for H pylori which can trigger the enteropathic arthropathies and sero negative spondyloarthropathies and which has also been found in fluid of the anterior chamber of iritis patients?
If you can get on meds, your life will get back to normal again in about six months or so. remicade works well for Irritable bowel disease processes so does humira but often you must also be on Methotrexate or cyclosporine to get your eyes to remission.
((((((((((((((((((((((((((((((((((((((((((((((((((((BIG HUGS))))))))))))))))))))))))))))))))))))))
mike
Mike Bartolatz
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alisonbatchelor
Posts: 17
Joined: Mon Mar 15, 2004 4:25 am

Re: Confused

Post by alisonbatchelor » Mon Apr 19, 2010 3:18 pm

Thanks for the hugs Mike. I was checked for celiac disease about 6 years ago and was clear. So unless I've developed it since..... I'll check out the H pylori connection.

All the best
Alison
alison batchelor

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Confused

Post by Mike Bartolatz » Mon Apr 19, 2010 7:47 pm

good luck with getting this quieted down!

Take care,
Mike
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