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Is it a flare up?

Posted , 8 users are following.

mirella60121
mirella60121

As I have previously mentioned my story. I am in my late 40s have had suspected PMR since March 2016. Started on 30mg prednisone and have been taking methotrexate for 4 months 25mg. I am now down to 6mg prednisone. My rheummy has suggested 1 mg per month to taper down. He is eveutually going to place me on some bio drugs as the methotrexate isnt doing anything. My recent bloods showing my esr at 25 and cpk at 40. Recently i have been experiencing a lot of pain to the point where i feel i have been battered and bruised. Mainly my arms and leg muscles plus the stiffness My rheummy wont commit to PMR given my age. I have undergone every test under the sun to rule out anything else and he is still scratching his head.

He is one of the best here in Sydney Australia apparently. My question is could this be a flare up or could it possibly be withdrawl as i dont know the difference. Also yesterday I woke up with a sharp pain on the right side just near the ribs. I haven't been able to see my gp yet to see what this could be I am concerned as my liver test showed fatty liver and enzymes are raised although they assure me its not at a dangerous level.

I am feeling so down as I feel the past year have had little success getting to the proper diagnosis and also relief. I did have relief when on a higher dose of steroids but the doc is determined to get me off them.

Could you please.offer me some advise please.

1 like, 9 replies

9 Replies

  • 3party
    3party mirella60121

    Posted

    The only comment I have is that your rheumy sounds excellent.  Insisting on tapering is good, but apaprt from that I really cannot hekp you.  Sorry.
  • EileenH
    EileenH mirella60121

    Posted

    I'm not surprised the methotrexate isn't doing anything - except what is he on about? He's forced you down to 6mg using it - or are you also telling me you still have pain? Did the ESR and CRP go down when you were at higher doses of pred? Did the pain go then? At what dose did that change? That is the dose you would need for your PMR.

    PMR USUALLY appears in over 50s - that does NOT mean it never happens in under 50s and every guideline says that when you read them carefully - and as long as they refuse to consider it, it won't be diagnosed so it will never exist. There is one set of criteria that says "over 65", all the rest (about 5 or 6) say over 50. They have gone down to 50 - maybe it is time to say 45, it is ridiculous to say that a 50-year old can have something that a 48 year old can't. There are several patients who say they had something very similar much sooner - and even their doctors say in retrospect it was most likely PMR. If he had a patient like you, with the same signs and symptoms, but 51, what would he say then?

    You have been on pred long enough for adrenal function to have been suppressed - and now at 6mg your adrenals have to start to work again. Some of what you describe could be attributed to lack of corticosteroid - and on that basis alone he needs to be careful telling you to continue reducing as much as 1mg per month. 

    He may be one of the best - but even they can get it wrong!

    • mirella60121
      mirella60121 EileenH

      Posted

      So the pain has appeared since i have reduced to 6mg whilst i still suffer the stiffness . My rsr and cpk have not gone done much really whilst on high dose but i thought whilst taking steroids the inflammation would reduce significantly. So what woyld u suggest should i up the dose as i cant bare the pain and stiffness last week or so.
    • EileenH
      EileenH mirella60121

      Posted

      Some people never have total relief of the stiffness - or, if it comes to that, the pain. A 70% improvement overall is considered acceptable as being PMR. 

      You were OK at 7mg? Then go back - and stand your ground to the doctor. If he still wants you to reduce from what is a low dose in most doctor's views then do it far more slowly - 1/2mg at a time and sticking at any given dose for a month or more. One top PMR/GCA rheumy in the UK likes to keep his patients at 5mg when they get there for as much as 9 months, just to let their body catch up. The rest of the reduction usually goes pretty smoothly then but even so it needs to be reasonably slow - every time you change the dose you upset the endocrine set up that produces cortisol naturally and it swings about before it settles down. While it is swinging about you feel rubbish - and there really is no need for it.

      The ESR/CRP - in some people they just stay high. There are experts who think that a persistently elevated inflammatory marker suggests other autoimmune disorders. I assume he has looked for ankylosing spondylitis (AS), possibly with add-ons? They are rare, but I have one friend who was told PMR but was sure it wasn't - many specialists later she got a dx of ankylosing spondylitis (often presents looking like PMR) with a Behcet's crossover. And another who started with GCA but it didn't behave "normally" as she couldn't reduce pred, then she mentioned night time pain - and her new rheumy had a lightbulb moment: AS was confirmed with imaging. Then other RA drugs do work better than pred. 

      I know it is hard at the moment - but if your rheumy is intending switching you to a biologic eventually why doesn't he try tocilizumab (TCZ) now? You've "failed" methotrexate which I gather is a requirement in Australia and TCZ has been shown to induce remission in GCA. PMR is closely related and there have been some small scale pilot studies in PMR patients that have claimed good results too. It has been used together with pred but the pred can be reduced far faster than normal.

      There is another "mystery" patient on here, Flipdover, who is in Aus and if I remember rightly is under a rheumy in Sydney now, she's from Canberra. She's doing very well on TCZ and says she feels better now than for the last 2 years.

    • mirella60121
      mirella60121 EileenH

      Posted

      Thank you so much eileen your knowledge is impeccable. It makes so much sense now how u explained it. I will go back to 7mg fir a while. I was concerned that i would need to start all over again. I will mention the other rare disorder AS when I see him next however i suspect he will confirm all the tests and scanning to date hopefully has seem all if the above.

      Regards

    • EileenH
      EileenH mirella60121

      Posted

      Not necessarily - you just need to go back to a level you are comfortable at and lower is better than higher for all sorts of reasons, not least prodding your adrenal glands to wake up.

      He should have done - but the rheumy I saw who wanted mine to be AS just did an x-ray and according to the GCA-lady that may not be enough, she had a special form of MRI I think (I honestly can't remember now). 

      My low back pain which is typical of AS was all due to muscular spasm - with targeted techniques it is pretty well non-existent now.

    • FlipDover_Aust
      FlipDover_Aust mirella60121

      Posted

      Hi Mirella,

      Happy to answer any questions you might have about Actemra (tocilizumab). Send me a PM if you like!

      F.

    • mirella60121
      mirella60121 FlipDover_Aust

      Posted

      Hi

      Well i was prescribed the tocilizumab but my rheummy said not to take it

      He just wanted to allow access to the new drug so it is obtainable on the pbs. What exactly are you being treated for and is your doctor jn Sydney as I believe you live in Canberra.

    • FlipDover_Aust
      FlipDover_Aust mirella60121

      Posted

      The rhuemy prescribed it and then said not to take it?

      I have PMR. Diagnosed Dec 14. Been on plaqenil (now ceased), currently on pred, MXT and Actemra (tocilizumab). Started on Actemra just over 3 months ago, and it's been an almost miraculous result.

      My rhumey is based in Sydney, but commutes to Canberra once a month for two days consulting.

       

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