Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Does this sound like AS?

Hello to everybody.

I'd like opinions on whether this sounds like AS - from some people who actually experience it - as I'm deciding whether to go and ask my doctor to investigate.

I'm male, 53, have had lower back pain intermittently since my 20s. I always get fatigue with it and when it is worst I usually get pain in my ankles too. I'm worst in the morning and slowly improve through the day, but if I sit watching TV for long in the evening I can hardly get up due to stiffness. The periods of greatest health in my lifetime have been when I've been eating a low-carb diet, done lots of exercise. Hot baths make me feel better for a while too.

Two other things make me suspicious - I have a very high level of Klebsiella in my gut (stool test) and although I don't know my HLA-B27 status, my ancestors were Finns. I've just remembered a couple of other things - I was diagnosed with IBS about 15 year ago and my mother has had Rheumatoid Arthritis for 30 years +.

Any thoughts? (I'm not looking for diagnosis, just whether this sounds familiar to you)

Yes, sounds familiar. Definitely worth asking to see a rheumatologist.

I am assuming you are in the UK from your sign-in name. If so, check out the www.nass.org.uk website (the UK national association), and in particular the "S-factor" campaign - this lists features of inflammatory back pain and says if you have them, then you could have inflammatory arthritis. If you print off the poster and take it to your GP, then you might find you get taken more seriously about it, as otherwise, at age 53 they will be likely to just immediately say its mechanical pain.

When you do see the GP first, I wouldn't bother mentioning the kleb (for most medics its still an insufficiently proven theory), but definitely mention: morning stiffness, and the fact that it relieves when you move; the family history; the fact that it started very young. HLA B27 status is something the rheumatologist may check out, but I'd avoid getting the GP to test for it initially, on the basis that if it is negative they could easily totally reject the possibility of AS (not realising that you can be negative and still have it), and because it isn't part of the diagnostic criteria anyway. If you want the GP to get started on testing, then ESR and CRP (inflammatory markers in the blood) can be useful if they are high (but again, not always high and not part of diagnostic criteria), and if you do have significant pain in your SI area, you could also ask the GP to order a plain film SI xray in advance of seeing the rheumatologist.

Sounds like you are one of the ones (like my Dad) who has managed to get by without too many problems, but its still worth getting diagnosed I think - that way even if it doesn't help you, it may help explain chronic back pain in other younger relatives and help them get a diagnosis earlier. Also, you don't know when things might flare up big time and you really do need some active treatment. Diet and exercise are great self help things though, and you sound like you have got that nailed.

Thanks for a very comprehensive and useful reply. Yes I'm in the UK.

I suspect that my GP - who very much sticks to the book - would look at CRP and ESR first and probably refuse to do anything else if they came back within range. My CRP was within normal range on previous bloodwork. Do you know how difficult is it generally to get a GP to give you a plain film SI X-ray?

Persistence was key for me when it came to everything AS. I really hope you get any diagnosis soon, I'm sure it'd be a weight off.

I was close to switching surgeries when my GP refused to believe that I had Iritis. Reluctantly sat there saying I just strained it, didn't even think I had AS even though I had been diagnosed.

Again, that's really helpful - thanks a lot.

My experience of my GP's practice and the NHS is that you have to fight for everything. I don't like to get into a fight I can't win, so despite the good reasons to get diagnosed, I'm still debating this.

How about getting HLA-B27 tested privately? The only provider I can find (medichecks) charges about the same as it would cost me to fly to the USA and get it done.

Hello, DJ_UK:

Fortunately, You have a rather mild presentation of AS at this time, but nearly everything You have described is rather typical of AS. The frequency of the HLA B27 antigen in Nordic peoples is closer to 12%, so You are more likely in the club!

WELCOME to KickAS and I hope You will take advantage of the knowledge here to help regain Your
HEALTH,
John

It does seem as though you have some things going on that would indicate a look further. Do you have a referral for a rheumatologist who can do some testing? Meantime, make yourself at home here and very nice to meet you!

does sound similar to others on this site.

i have undiff spondy so there are differences for me.

some things the same though.

my CRP and ESR are normally borderline; read that the spondyloarthritises attack the entheses which are avascular, so the inflammation doesn't get into the blood.

I would mention the GI problems; wouldn't necessarily call it IBS because then its downplayed, but I'd discuss the symptoms.

for me, the joint issues have been horrendous, but ironically its the gastritis and inflammation in the ileum seen in a colonoscopy and the small amount of psoriasis i get that got me to a dx finally. If even one of the several rheumies I saw had asked me about my skin and/or my GI tract, had known to ask, i could have been dx'ed years before I did. i didn't know at the time to mention those things; a rheumatologist should have known better, but they usually don't, in my limited experience. So, bring the GI stuff up yourself; its important info for the spondys.

My GP was fine about doing the SI xray, but you do need to make sure they understand that this is a longstanding chronic problem - "the lower back pain" pathways in the UK really do focus very strongly on mechanical pain, and a very conservative approach (with recommendations NOT to do xrays or MRIs), which is something that NASS I think has been questioning, as there is too little suspicion of inflammatory back pain. Thats why that S-factor poster is quite useful - it very clearly indicates "inflammatory back pain" criteria, so if you meet all those, then you can very easily argue for your GP to refer you to rheumatology. Thats the first main hurdle really - getting that referral for "possible inflammatory arthritis". I don't know how to deal with GPs who only go by ESR and CRP - mine are always normal too, and its been incredibly difficult to get my GP to understand that doesn't rule out IBP.

If you did get the HLA B27 test done privately and it was positive, it might be a little help, but I still think that is best left for a rheumatologist to order if other testing is borderline and they need one more positive to swing a diagnosis. Also you wouldn't necessarily know how reliable the particular test the private lab does is, and there may be difficulties in getting the blood specimen to the lab in the right condition and time frame as it is a fairly sensitive test. If you are considering anything privately, it could possibly be useful to consider seeing a private rheumatologist for a one-off appointment, especially if your GP isn't keen on referring you to an NHS one. They are sometimes more likely to refer privately if you are going to pay. The only thing to watch there is to make sure you do your research and find someone who is a spondyloarthritis specialist. If you select a private rheumatologist who also works in your local NHS hospital, then it could make bridging from private back to NHS much easier. The benefits of a private appointment first off are that you get far more time than an NHS appointment usually is, so are more likely to get all the puzzle pieces fitted together - especially as you aren't in the usual age range for first presentation.

But, first step is to consult the GP with that S-factor back pain poster in your hand and ask for a rheumatology referral.

Many thanks to everybody.

I don't yet have a referral to a rheumy - that's quite hard to get in the UK, which is why I want my act together before trying. I'm much better equipped now.