anyone else with A.S ??

i firstly was diaginosed with RA , then onto PsA ,,currently now its A.S .. hmmm .. what next ???

this is the 3rd switch in the last few years ,, im a great believer , that things come round in circles ,, i think my this time next year ,, i could be back with RA once more ..

i started MTX early this year ,, but taken off it not to long ago ,, when the diagonised changed from PsA to A.S .. the reason i believe ,, is that MTX doesnt work very well for A.S ...

but !!! wow did i notice the difference once i stopped taking the MTX ,, ive got worse very quickly ..

so with several calls and a visit to the gp s , and a visit to the rheumy nurse , and a few more calls and a few bloods taken ,, the powers that be , have decided i should go back onto MTX .. along with the folic acid ," of course " ...

so im back with alot of you in the MTX junkie club :) ...

but my question is not just anybody else here with AS ,, did MTX work for you ?

am i right ,, that MTX isnt seen as a treatment for A.S ?? and the only treatment is the anti tnf ,, oh and lots of exercise :( ..

andy

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  • Sorry - being really dumb - A.S. and PsA???

    I have rheumatoid arthritis but not come across the other acrinimes for the other things, maybe brain just not engaging - very tired today and not functioning very well..

    thanks Andy

  • hi nuttynana

    ( A.S ) = Ankylosing spondylitis ( PsA ) =Psoriatic arthritis , all Inflammatory arthritis , very similar in lots of ways .. RA been the leader in the pack ..

    with over 100 different types of arthritis , i often wonder how many people out there ,, have got the correct diagnosis... i know its said ,, all the treatments are generally the same so it dont matter ...

    but does it ?? ..

    soz nutty nana ,, im not used to writing such big words :)

    i noticed you didnt ask what MTX was ?? you know that one alright ..

    andy .

  • I have heard that AS is the one of the family that does best with exercise. That said I exercise daily and feel sometimes that I could perhaps do without all the meds if I just remain vigilant about doing my daily work out to keep muscles strong and continue to stretch and get myself more supple. I wouldn't just drop my meds in order to find out though because I do really feel pretty sure that the MTX has helped me a lot too. Are you able to exercise much Andy? Hope so and also really hope that getting back on the MTX helps you a lot. TT x

  • yea i exercise tilda ,, i joined a exercise group in town ,, its run by physio "s ,, i go as often as i can ,, but i work a mix of shifts , so when im doing the night shift i after give it a miss ,, i got one of them swiss balls,, "exercise ball " from the car boot the other day , for exercise at home .. haha .. was only a £ 1 .. only problem its bright pink :( ..

    if youve got a blue can we swap ??

    the feet and knees ave stopped me abit just lately with the group ,, so hoping the MTX ,, will get me going again .. xx

  • I use my son's Nintendo Wii Fit Andy. I love it because I can watch tv when doing the aerobics and pick and choose the muscle and balance exercises according to what I'm up to and all in the privacy of my home. I've noticed that if I stop for a while the RA comes back so I'm very supersticious about it now! I do go to an exercise class too but struggle a little with some of the moves- anything that means supporting myself with my hands is a no no for example as my wrists don't go back enough. Also I find the hard floor on my heels is like being tortured so I need to take my own mat for extra length. I do tai chi too but I think I'm going to have to stop that because it takes up too much time when I need to be working. I haven't got a blue ball but I hate pink so if I did I'd hold onto it sorry! TTx

  • Hi Andy,

    I've finally been diagnosed with PsA (well, near as dammit, the private Rheumy I saw seemed excellent & was pretty sure, he said I'd need another outbreak of Psoriasis to confirm it, but is treating my condition as PsA).

    I've been aware for some time from my fairly random but extensive (!) internet research that there are doubts about how effective MTX is for PsA. Some authorities say that it is effective at controlling symptoms, but doesn't 'modify' the disease. In other words it doesn't slow down or prevent damage, but it makes PsA sufferers feel better. Of course, other sources think MTX is just the job for PsA.

    AS & PsA are related as I think you know. So there may well be the same doubts about how effective MTX is at really tackling AS, too. I haven't actually read anything about AS & MTX. But if it does help symptoms that would explain why you felt worse after coming off it.

    I have been on MTX now for 16 weeks and it doesn't seem to have helped me much at all. My aches & pains and mobility are quite a lot worse than when I started. However, the 'half-dead' feeling I had in the early stages of the disease has gone & I often feel quite perky although I suppose I still tire easily.

    The private Rheumy I saw did not seem to have a great deal of faith in using DMARDs to treat PsA (well, not mine, anyway). But either he did genuinely think that they should at least be tried first or perhaps he was just hidebound by the NICE guidelines that say they have to be the first line of attack. In any case, he advocated using them quite aggressively to treat severe disease. Therefore his treatment plan is for me to go up to 25mg of MTX as quickly as possible, then add in Sulfasalazine then on to Leflunomide if that does not work and then onto Biologics if the Leflunomide has not worked either. He emphasised that all this should happen as quickly as possible although obviously each drug needs time to show what it can or can't do. He did say something to the effect that he was quite sure I'd need Biologics to actually sort me out.

    Rheumatologists obviously differ so much in their views about drugs and everything else. But I think that I have PsA and it does seem that MTX (and therefore, possibly, other DMARDs) doesn't do much for me. I think I'd have tended to trust the Rheumatologist I saw even if his ideas had been different from mine, but the fact that he also seemed to doubt MTX has obviously strengthened my doubts about it.

    Hopefully the MTX will at least control some of your symptoms. And maybe it will go further than that and actually protect your joints etc. However, I think you should prepare for your next appointment with the Rheumatologist as if it were a military campaign. Keep a diary of your symptoms so that you will have an overview of whether there has been any improvement / deterioration. Don't just rely on memory. If you can be really sure what the most consistent symptoms are that might help with firming up the diagnosis, too. You seem such a positive person but if your disease is seriously disrupting your life, lay it on the line. Exercise is good for everything if you can do it, but you need your Rheumatology team to get their act together. There are drugs that can & do give people back their lives and if your life has been diminished by the disease then your Rheumy should be going all out to put things right.

    Good luck,

    Christina

  • hi Christina

    thats good news youve finally been diagnosed .. it does look like your rheumatologist ,, is now looking forward with a plan of treatment ,, i suppose been finally diagnosed , even though its not nice ,, but could be a weight finally removed from your shoudlers ,,

    PsA and A.S do seem similar in lots of ways other then the back .. even more so if questions are asked about , if MTX is the right treatment .. but with alot of this you after try it ,, then prove its not working before moving to the next treatmeat .. "Biologics",,

    ive now also got my next appointment , to see my rheumatologist .. so already writing things down ,, so the military campaign is already in process .. i know ive always got ,,lieutenant christina and Sergeant tilda to fall back on for advice .. :)

    private andy .. xx

  • Sorry if I overdid it! I'm going through a stage of taking my illness incredibly seriously & I probably need to do that for a while but shouldn't subject others to the same treatment!

  • Hey how come Christina makes it to Lieutenant whereas I only get to Sergeant? That makes her my superior and me just the bossy bully! Blimey Andy you're taking your life in your hands here (but great news that you've got a rheumy apt to work towards) TTX

  • haha .. i hope you noticed i only made myself a private ..

    still i should know better .. i will address the situation , forthwith,,,lieutenant . :)

  • I don't know, you work your backside off to make your way up the ranks & then some upstart gets instant promotion!

    Oh well, see you in the officer's mess for drinkie poos. (In this virtual reality I can drink as much as I like & still shoot straight.)

  • Yes, I'm in that camp too. Not AS (not enough obvious damage yet) but pretty certainly spondyloarthritis with widespread enthesopathy. I'm not surprised about your diagnosis changes - AS can't actually be diagnosed until there is obvious damage showing on xray or MRI in very specific places, so having the PsA diagnosis first (which doesn't require sacroiliitis on xray or mri) isn't surprising.

    The rheumatologist is right in that MTX doesn't help the predominant axial symptoms of AS (thats the spinal stuff from neck through to sacroiliac joints) but it has been shown to be really helpful in a lot of folk who have peripheral symptoms (any joints other than the spine), and many folk with AS end up taking MTX as well as other drugs, though not usually other DMARDs. NSAIDS regularly at full strength are the first line treatment, then onto anti-tnfs if they don't do enough and you have tried several of them.

    If you want to get involved in a really supportive forum specifically for spondyloarthritis, then either kickas.org or the spondylitis association of america have really active message boards - the best ones I've found for info and support that is specifically for AS and spondy. google "ankylosing spondylitis forum" for the SAA one, and select the link that comes up that starts with forums.spondylitis.org . They are both american based, but have a lot of folk from the UK and other countries. NASS is the UK organisation which is great for information leaflets and does have some regional support groups I think, but doesn't have the same kind of active message board.

    Neither of those groups stop me from wanting to keep on with healthunlocked as well, but they both have a heap more info, and a whole lot more folk who have exactly the same problems (which means more likely to get good answers to your questions). I've had far more support from them than anything else in the UK.

    It is possible to have both RA and AS, but once you have the AS diagnosis, if it was based on xray or mri findings I'm afraid its not going to go away.

  • thanks earthwitch

    the lastest change of diagnosis ,, did come to light after the mri scan ,, luckily for me my rheumatologist is a wonderful man ,, and does appear to be really swiched on with A.S ,, even when the mri report came back ,, saying ,, no problems anywhere .. he didnt agree ,,. n took a long time ,, looking through all the images ,, abourt an hour .. untill he spotted something linked to AS .. so i can see how AS ,, is so difficult to diagnose ,, and until then your treated as if its RA or PsA .. this isnt down to errors or mistakes its just the way it is AS ..

    ive seen the kickass ,, and the nass site , ive joined a nass group .. and trying to support the charity the best i can ,, i think the switch back to MTX is more to do with other joints.. therefore making physio and exercise less painful , has exercise is a big player with AS ..

    im hoping the next stage is the anti-tnfs as ive failed with all NSAIDS ..

    thanks again ..

    andy x

  • I know someone who was diagnosed with JRA and then later the diagnosis was revised to AS. He lives in Australia now and when he visited quite recently he told me he takes no DMARDs or Biologics - just basic pain relief and he keeps his AS under control through getting a lot of exercise and also doing Alexander Technique. He's a joiner/ builder so he's physically active and he certainly looked fit and well. So when you say it won't just go away - this is what we are told about all of our conditions but perhaps there is a percentage for whom it does either go into spontaneous remission or recede to very infrequent flares?

    I also know another man in my tai chi class who has AS (or says he has anyway) but has never been offered any drugs at all - just physiotherapy. He does seem to be in a lot of pain sometimes and has had a few operations but he is very large and overweight and I don't think he's very fit so that probably doesn't help. I was telling my physio about both men and she looked surprised that they aren't on the drug therapies normally given to people with inflammatory arthritis. But she did comment that AS is the spondylitis that responds best of all to exercise and physiotherapy so wondered if that was the key for the chap in Australia?

    The point I wanted to query Earthwitch is about MTX and anti-tnfs. I thought that one of the reasons people are encouraged to remain on this DMARD, even when it's not doing enough on it's own, is because some of the biologic drugs only work effectively if the patient is on MTX already? Or does this only apply to RA?

  • Tilda,

    RA seems to have quite a different disease mechanism to AS. As yet there haven't been any drugs discovered that have the same disease modifying effect on AS as DMARDs have on RA. There is a school of thought that you should take MTX when on one of the anti-tnfs (remicade, I think - the one that has mouse proteins in) to avoid the possibility of developing a reaction to it, and also there is a theory that taking MTX may help prolong the effectiveness of anti-tnfs in AS, but mostly it would seem that folk are prescribed MTX if its likely it will also help peripheral arthritis. Anti-tnfs are really the only decent treatment for AS once you have exhausted the possibilities of NSAIDs, but even then its not quite as targetted a treatment as anti-tnfs are for RA or for the inflammatory bowel diseases or some other conditions. Again, its because the disease mechanism of AS still isn't totally understood, as well as it still being questioned whether spondyloarthritis is one single spectrum of disorders, or whether there are several completely different disorders within the current classifications. Genetic studies going on now to identify specific genes involved may help with that. Spondyloarthritis has been the poor cousin of the rheumatic disorders until recently, with RA getting an incredible amount more research being done, and far more money going into RA drug trials. AS is only just starting to catch up but there is still a long way to go to fully understand it or discover real DMARDs or other drugs that predictably work for spondyloarthritis.

  • Re your example with the person not currently under medical treatment - its a difficult one. There are an awful lot of folk who do have extended periods of apparent remission or at the least periods without active disease. The difficulty is that you can't know if there is still disease progression going on (i.e ankylosis, or progression towards fusion of spine or other joints), and it isn't unknown for folk to suddenly flare after a long period of being fine, only to discover that they have quite advanced disease. Thats why a lot of rheumatologists are now promoting quite aggressive early treatment to knock back the inflammatory process that leads to ankylosis. Exercise definitely does help a lot though and the slogan is "move it or fuse it". The example of the man in pain and not receiving treatment is unfortunately very common - especially in people who have been diagnosed by a GP or not followed up regularly by a rheumatologist. I know of someone with PsA who is in a very bad way now because her GP didn't see the need to refer her back to the rheumatologist years ago because they thought there was nothing more that could be done - wrong - very wrong. Tell your man to insist that his GP refers him to a different rheumatologist for a review.

  • This is of interest to me, earthwitch. Impressed as I was with the private Rheumy I saw recently, I didn't see a crystal ball on his desk. He examined my spine and was very reassuring about how flexible it was. Obviously I need good news, so that almost but not quite pushed some nagging doubts about my spine from my mind. My back has been getting very tense and achey by late afternoon for years, not every day but often enough. And I recall a GP who was also a chiropractor examining my back once and murmuring 'you do have a couple of fused vertebrae.' That was about 25 years ago. It's getting hard to exercise now with knackered knees but I used to do loads of exercise - possibly I have AS lurking but have kept it at bay so far. You've reinforced my belief that it is so important to keep thinking & learning about this condition and following up concerns that arise.

    Christina x

  • Thanks for explaining all this to me Earthwitch. The man in Australia caused me to blog some time ago after he came to dinner and we got to discussing my RA (because he could see I wasn't drinking and was struggling a bit with the cutlery at certain points) and he came on quite strong about how wrong it was that I was taking MTX. I told him at some point that my ESR was up to 62 and he knew exactly what I meant and that's what got him going. He told me that the MTX was merely masking the active disease as my ESR demonstrated and meanwhile I was shoving poison into my system that was damaging my immune system - which I need to treasure rather than suppress. He is an intelligent man and argued his point quite forcefully and convincingly. His mum has advanced RA and his gran had died from it and he has AS as does his cousin and his aunt - all from these parts. He had taken some DMARDs as a child so he knew them well and had done his research and was into the whole Mercola conspiracy theory about the pharma companies. I got quite unnerved by him and came on here to discuss it. So perhaps he has just had a prolonged period of remission and will suddenly find himself very sick with AS - I do hope not as I wouldn't wish this on him but equally it's very hard to cope with when someone has such confidence in their point of view born of their own experience.

    And I do find that I worry that whatever kind of RA I have, and my rheumy is very open minded about these diseases overlapping and doesn't seem to care for too much labeling, that it is more systemic and of the kind that you describe where I might feel very little disabling pain - just residual stiffness and ache that worsens if I'm still still for any length of time - and that I can mostly keep on top of through exercise. And so the only sign I or my doctors have that anything is wrong currently is my ESR which has never come down despite my RA symptoms having mostly vanished.

    So when I read some bloggers on this site saying that it's only RA if there is visible swelling and pain I naturally think "well why am I not described as being in remission then if that's all that counts?" - but I checked with my GP a week ago and I'm not because my ESR is still too high and I have some strange symptoms such as pins and needles and my hands and wrists still haven't got their full range of motion. So this is where I feel that things are a little more sinister than some on this site fully understand. Maybe this thing is gnawing away at some of us and we don't get any real sign until it's too late? Maybe when my rheumy said "for now we'll call this RA but keep an open mind.. things could change" he meant that it can move from RA to Lupus or PsA or some other more unusual form of inflammatory arthritis or be going for the blood or organs. That's what worries me the most I suppose.

    I believe the reason RA is the most researched is because it's the most common of the arthritis's apart from OA. Tilda x

  • Hi Andy, one year ago I was diagnosed with Ra, PsA and AS. Osteo' nine years ago and Fybromyalgia 30 years ago and I reckon that's why the others went undiagnosed for so long.

    Last December I was near crippled. when i could manage it, I used crutches for very short periods of time (too weak and in pain to to much else). The fatigue is awful.

    Final combination of meds' are MTX and Enbrel (anti-tnf injection). I KNOW that my conditions were present decades before they were diagnosed, but dismissed as fybro' and anti-inflammatory drugs given. The MTX and Enbrel are helping. They cause me to feel nauseous and to have headaches. I stopped them for a while and I was back to square one - bed/ home ridden. Took about six months for a significant improvement.

    unfortunately, the spinal and joint damage is so bad, I doubt i will function well enough to do full days or return to work, but there are now some days that i do not need to sleep during the day. Stick with the meds', be patient as they can make a positive improvement to your health...just depends on how damaged the joints already are.... hope that this helps.

    P xx

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