Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group apologies and HLA negative

Hi. Firstly, can i apologise for putting two similar posts up (and cheers to you folks who replied twice!). I put the first one up and when I came to have a look it didn't seem to have registered, so i put another one in. Only this evening was I looking at the back-dated posts and found my original stuck about 5 pages back (I'd have thought posts automatically went to the front page. Obviously this isn't the case?). Whoops.

A couple of thoughts generated from your generous replies:

* Is it worth HLA negatives attempting anti-biotics?

* Can someone have a go at explaining how an HLA neg gets this disease (I know bilko had a go but I don't think I really understood it. Bit thick).

* I'm THINK I've got AS but never feel any stiffer in the mornings than other times of the day. This seems highly unusual. Does anybody else experience MORE pain/stiffness as the day goes on?

* If I can't convince my rheumy that I may still have AS despite the neg test, he'll probably withold treatment other than NSAIDs and then I'll degenerate quicker I suppose. This is my great fear: having to fuse before Doc's take me seriously. Any advice especially from fellow Brits who know our system.

Best

Leo

Hi - my chance to return the compliment and reply.

From what I know about HLA, and it's not much admittedly, they have absolutely no idea how it works, or why it acts in the way it does. It was identified through research into transplants, or so I've read, because it can trigger the immune system in such a way that it will fight an implanted organ.
While it's true to say around 90 per cent of AS sufferers have it, some won't. Equally, you can have the gene marker and have absolutely no problems at all.
For some reason, in susceptible people, it can be "switched on", by an infection or virus, or whatever, causing the immune system to act in the way we know so well.
I guess you could describe it as another door for inflammatory disease to get in. But obviously, it's not the only one because there are dozens of inflammatory diseases and HLA is not an issue with most of them.

Where are you in the UK? If you don't get any joy with your GP or at the hospital, go to another. I know it's easier said than done, hell I've been there, but don't let them wear you down. There are some pretty good doctors around - check on the Arthritis Research Campaign website for some info on UK research. I think there's some stuff about HLA on there too.

Sxx

Oh, and I don't feel worse in the mornings. If I'm stiff and achey, I'm stiff and achey all day and night. Mine started out in my feet and eyes (!) with just a general feeling of stiffness in my back that I put down to not doing as much exercise as I used to. And it's still worse in my peripheral joints than my back.
Each person is different - I have things my mum who's had AS/inflammatory arthritis for 20 yrs, has never had (I won't go into it now - it's a bit odd) ( but imagine you've gone down a fireman's pole really clumsily - yeh, that's painful) but similarly when it started it followed exactly the same pattern - feet, arms, back, neck, jaw . . .

Don't get fobbed off - trust your own instincts. It took me over a year and about a dozen bottles of steroid drops before my eye consultant admitted my iritis wasn't just "stubborn". It does get you down - I've lost count of the times I've cried in front of my GP, but dammit, I was right wasn't I.

Sod em - keep looking for the info, keep asking the questions and if you get down, go online cos' we're listening!

Sxx

Hi all,

I remember reading that rheumy's were excited when they found the HLA genes - certain that soon a cure would follow. But ... obviously, it's such a complicated process that I think too much of a focus on B27 - or + kind of obscures the key issue of what's happening to our bodies. And truly, as Sxx points out, she ended up being right as to what was happening to her.

This is a great place to come for support - just wanted to second you on that, Sxx - while you continue on the often frustrating quest for an accurate diagnosis. Is it any wonder that we feel so thrilled when we finally get diagnosed with AS ?

Cat

Hi, Leo:

Since the NSD seems to help non-B27 ASers, antibiotics would then also help very much.


The direct participation by the Osp (HLA-B27, B7 CREG, & other genotypes) is well explained by molecular mimicry. The reason that non-B27s get AS is that B27 is not a gene nor even close to the entire genetic story; it is an artifice of convenience in determining MHC types for transplant. (Osp=Outer surface protein).

The structure of B27 has been well-studied, and those sequences that react with our own immunoglobulin have been identified by Professor Ebringer and many other researchers. In the B27 molecule there are two places where two different IgA dimers attach. The B7 CREG (crossreactive epitope grouping) shares the same sequences in roughly the same locations, but a B60 may share only one of the AS-initiating sites; all of these types can produce AS and there are certainly others.


In the early stages of AS, morning stiffness is a hallmark of the disease, but not having this will not exclude a diagnosis.


I'm not a fellow Brit, but doctors in the US cause as many problems as they fix; you have a legitimate fear--legitimate enough to self-treat using at least something as radical and revolutionary as diet. Carol's book is available in UK and she just had a good promotional tour in her birthplace, New Zealand.

Good luck to You,
John

"Unfortunately, the soul’s need for learning often brings about the full-blown disease. And it must be cared for creatively, or allowed to take its course."
William A. McGarey, M.D., Director of Medical Research, A.R.E Clinic.

Hi,

On Negs and antibiotic I reckon yes both Flagyl and Cipro have helped me before.

On the B27 -ve apsects of AS and the SpA.s here's a recent extract
==========================================================
Genetic susceptibility to ankylosing spondylitis.

Sims AM, Wordsworth BP, Brown MA.

Wellcome Trust Centre For Human Genetics, Roosevelt Drive, Headington, Oxford, OX3 7BN, UK. mbrown@well.ox.ac.uk

Ankylosing spondylitis is a highly heritable, common rheumatic condition, primarily affecting the axial skeleton. The association with HLA-B27 has been demonstrated worldwide, and evidence for a role of HLA-B27 in disease comes from linkage and association studies in humans, and transgenic animal models. However, twin studies indicate that HLA-B27 contributes only 16% of the total genetic risk for disease. Furthermore, there is compelling evidence that non-B27 genes, both within and outwith the major histocompatability complex, are involved in disease aetiology. In this post-genomic era we have the tools to help elicit the genetic basis of disease. This review describes methods for genetic investigation of ankylosing spondylitis, and summarises the status of current research in this exciting area.
==========================================================

The authors seem to have examined quite a bit of DNA over the years and hopefully are now on the right trial. More of their work can be found at:

http://www.well.ox.ac.uk/brown/asintro.shtml

Another author to read is MA Khan, he is a Dr with AS and speaks writes researches the disease. I think his stance is Negatives do n't get the erosions in the joints but certainly fuse.

Some of his most useful work is found at:

http://www.rheuma21st.com/archive_index.html

As for pain stiffness, when I'm flaring bad nighttime and mornings but often when it's milder as the day progresses usually 3pm or after it appears....

Check out the New York criteria for AS and the ESSG criteria for SpndyloArthropathy.

Good Luck with your Rheummy.......


David

Hi Leo, I'm B27+, so I can't help with that aspect of your question. However, I do feel worse as the day progresses. Sometimes, by the time I go to bed at night (dependant upon how active I've been through late afternoon and evening) I'm in terrible discomfort. Waking up in the morning is much easier than retiring for the night on days like this.

Hugs,

Kat


"I haven't failed. I've just found 10,000 ways that don't work."- Thomas Edison

my mother has fybromyalgia and I may have it as well just havent been able to get to doc to discuss it... but it does effect other areas more than the back and some syptoms are real close to AS just an FYI for ya I aint no doc or a specialist but so far in my reasearches this is what I have found see your rhuemmy and talk to him/her and dont let them to an in and out visit make them sit down and answer your questions right them down dont let them blow ya off .....oak

I am older then I look and I feel older than I am

They work for me and I am Neg- In connection with the LDS diet I have gone med free for 5 or more months at a time. Then I get careless and don't stick to the diet and pain returns.