Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Sorry - another rheumy update

Sorry to all those who are fed up of hearing more of my ramblings!

Today I saw the third rheumy, and am now left in total confusion! Some of you may remember that in August last year, I was given the opportunity to see a rheumy on a private basis (paid for by a charity). This rheumy thought AS, or something like AS was the most like cause of my problems. I then had to get an NHS referral to another rheumy in order to get the MRI done. MRI showed nothing, and rheumy thought it was common backache.

Today, I had the opportunity to go back to London to see another rheumy (once again with the same charity). Perhaps with too high an expectation, I went hoping to get an answer. Sadly, this wasn't to be. He listened thoroughly to all I had to say, but said that he didn't think AS was really a consideration - nothing had shown up in blood tests or on the MRI, and I hadn't had any significant swelling. Despite this, he agreed that all my symptoms couldn't be explained as simple backache. He suspects some form of widespread chronic pain - whilst he wouldn't commit to this exactly, I think this is fibromyalgia. He has agreed to write to my GP suggesting I get prescribed Ibuprofen SR 800mg which I can take morning and evening in the hope of relieving the pain/stiffness, and re-establishing a decent sleep pattern. He also wants my vitamin D checked (anyone know why?).

So, I feel a bit confused - three different rheumys: three differing opinions. I shall go along with what he's suggested for the moment, and see whether these pills make a difference (always assuming I can get the GP to agree to prescribe them!)

David

So sorry you didn't get the firm diagnosis you wanted. I don't think your GP will have any problem at all prescribing the SR ibuprofen. This would be good anyway if your problem does turn out to be spondy. I'm in a fairly similar place to you at the moment, with a working diagnosis of fibromyalgia (though I have only had one rheumy). I am also one who has ESR and other inflammatory markers in the normal range no matter how badly I am flaring. I keep seeing written that one of the things that identifies the difference between spondy (an inflammatory disorder)and fibromyalgia (which is not meant to be inflammatory) is spondy's response to NSAIDs. I thought that might be a clincher with my GP, but no - she believes that even though I get a good response from NSAIDs that they would be having a significant analgesic effect and give a good response to fibromyalgia as well.

Try the ibuprofen. If you don't get along with it (one of the worst for gut symptoms), try another NSAID, and another if necessary. What I started doing a couple of years ago was doing all the self help stuff as if it was a confirmed AS diagnosis - the stretches and exercise, taking NSAIDs at full therapeutic dose longterm and going low starch. At some point down the track I think I am going to get a diagnosis that isn't fibromyalgia, but until that happens at least I am doing something. If you do end up with worsening pain in any one area of your spine (or SI) at some point then definitely insist on getting it xrayed and looked at again.

When you take the Ibuprofen, take it with food. East some of your breakfast or dinner, take the pill and then finish you meal. That might help you avoid any GI problems. I will be hoping that it helps your pain.

David, I'm so sorry you're experiencing such a very long ride on the diagnosis merry-go-round. I found this about fibro and NSAIDS at the John's Hopkins Arthritis Centre page:

The diagnosis of fibromyalgia (FM) is considered when patients complain of diffuse muscle and soft tissue pain with tender points. Pure or primary FM (not assoicated with any other inflammatory disease) is non-inflammatory beasue of it poor response to anti-inflammatories and the lack of inflamamtory findings on blood work and exam. However patients with inflammatory diseases such as RA can have diffuse musuloskeletal pain that feels like FM but responds to anti-inflammatories and thus likely casued by inflammation.

I hope the ibuprofen helps. Just remember to always always always take it with a full glass of water and some food. That will help protect your stomach.

Hugs,

(taken from the Vitamin D Council website)

It's estimated that a high percentage of the UK Population is deficient in vit D - in other countries such as the US, milk etc contains vit D supplementation - but here we don't have that (nor enough sunlight!) Just this week my GP doubled my prescription of vitamin D as my current reading is 37, with the reference values being 75 - 200... I definitely think it's a test worth doing, and do think I've felt better since starting supplementing last year.

I hope the ibuprofen helps you!

Take care,
-Anke

ok, for comparison, hope this helps you feel better.

initially, orthos, physiatrists, GP, etc: localized myofascial pain....... thoughtout my whole body? yeh, that doesn't really make any sense.

then physiatrists, ortho, endocrinologist: rheumatological / inflammatory arthritis.

rheumy #1: ruled out fibro, ruled out rare collagen disorder, concluded he was stumped. sent me on my way.

rheumy #2: fibro but without fatigue or sleep problems and rare collagen disorder but without hypermobility. sent me on my way.

rhuemy #3: "does not have 11 tenderpoints" (code words for no fibro), not enough information / symptoms to make a diagnosis. kept feeling my hands and feet and SI like he was looking for inflammation; thing is, my podiatrist can feel it in my feet and my physiatrists can feel it in my SI and my PTs have taught me how to feel it in my SI, occipital muscle, etc. he said there was no evidence of inflammation and i asked him "then what is tendonitis" and he said, "well yes, you are correct." sent me on my way.

rheumy #4: enthesopathy. but also said a lot of contradictory things. to this day i'm not really sure what he thinks. he did say "let's not worry about what it's called, let's just treat it" which sounded good to me, but after a few nsaids that i couldn't take, he pretty much gave up trying to do anything else, just kept talking about the dangers of drugs. was able to convince him that LDN is safe, he does prescribe that, but only after i agreed to pay for it out of pocket if insurance doesn't cover it; insurance covers it. never discussed fibro. initially wouldn't prescribe flector patches, only lidocaine patches, but when GP retired, was able to get the flector patch prescription and the KIP gel prescription transferred over.

rheumy #5: undifferentiated spondyloarthropathy with prominent enthesitis. wrote in his letter that there is no evidence of fibro, so i think that part is finally put to rest.

so five rheumy's, five different takes on things. but most of my good doctors have thought for a long time that it was inflammatory arthritis. and this last rheumy is treating me, trying more drugs, so at least we're not just sitting around not progressing.

undiff spondy will not show up in the blood, will not show up in scans the same way AS does, does not cause swelling as a general rule. but response to nsaids, response to prednisone are good indicators. plus symptoms are a good indicator. plus if you have a colonoscopy that goes up to the illeum and you haven't been on nsaids and you have inflammation / ulcers there like i do, that's another good clue that its a spondy. the clues are less obvious than with AS, but a rheumy knowledgeable in the spondys should be able to recognize it.

i'm less familiar with the subtler clues of other inflammatory arthritises. however, if antiinflammatories help the symptoms, that's supposed to be a good clue that its inflammatory in nature.

vitamin D: seems to be something that all the doctors think is really important these days. certainly low D is not good for the bones. also believed to contribute to other symptoms. my D has been as low as 30, i've been trying to raise it, had it up to 55 in the past, up to 57 now, but when i have bouts of severe pain that lead to bouts of severe "not digesting my food", it drops. honestly i haven't noticed any change in my inflammatory arthritis at its highest or lowest. but do wonder if i'm sleeping more / better now that i'm on it? i take it mostly for my bones, and figure anything else it might be doing behind the scenes is probably a good thing. but it did not help me as much outwardly as i had hoped.

ibuprofen: as others have said, try it, see how it goes. but if it doesn't go, try other nsaids, other drugs. i've been on 11 different nsaids / cox2 inhibitors, mostly because they're all different in their effectiveness, in their side effects. still looking for one that works without side effects. for me, ibuprofen, ketoprofen, vioxx, aleve, all work pretty well but give me gastritis and/or edema. and i take them on a full stomach with lots of water in the middle of the day when my stomach is fullest, and it doesn't matter. ibuprofen and ketoprofen were harshest on my stomach. vioxx and aleve gave me the worst edema. celebrex gave me brain fog. mobic and relafen (nabumetone) didn't do much. the others i forget the details. i'm now gonna try daypro.

wonder if you could talk a doctor into trying LDN. it really is helpful to me. others here too. its not enough, but it helps. and i missed a dose on friday night and my feet flared over the weekend. forgot just how bad my feet could get. but back on the LDN and feet settling quite nicely.

just keep collecting evidence and keep pressing doctors for a treatment that works. hope the ibuprofen does. but if it doesn't, lots of other drugs to try.

Thanks - I'm ready now to do battle with the GP on Tuesday morning...

wonder if this could apply to other autoimmune diseases like the spondys as well?

http://www.huffingtonpost.com/dr-david-perlmutter-md/vitamin-d-benefits_b_818912.html

i remember alohaben saying "AS is a bone sucking disease" and D is for the bones and...........

coincidence that so many of us have low D?
or is it a general population issue, but we're (those of us with chronic illness) the only ones getting testing?

I would hazard a guess that its a general population issue, but the consequences for people with autoimmune disorders hit us much harder. They are doing population studies in Orkney on vitamin D levels, and their study group contains healthy as well as ill people (its the ORCADES study - a genome study thing, and they are doing it in Orkney because so many orcadians still have four grandparents who were orcadian so fairly pure genetic lines)

hey...i just had a duh....thought

there is no 'blood test' for AS. and mri's show tissue.
the gold standard for as diagnosis has always been an xray
of si region...and for all this foostering around an xray costs about one 40th the cost of an mri.

good luck