1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Too increase or not to increase, that is the question...

Posted , 6 users are following.

Mrs_Hobbles
Mrs_Hobbles

Hello, I'm looking for some advice please.  I was diagnosed with PMR in April 2016 and put on 10 mg prednisone which worked fine then was  disgnosed with GCA in August 2016 and increased to 60mg, this also worked fine. Rhumy then reduced me from 60 to 30, which I have to say nearly did me in, then down to 20. I've since reduced to 10mg, where I've been for about 2 months. I had been doing fine till about a month or six weeks ago when I started having increased pain and stiffness and more of the 'turning over in bed' pain plus temple pain, increased headaches and jaw pain. The head pain would very much come and go and still does.  Two weeks ago I had a scheduled appointment with my rhumy who said he felt it was more fibromylgia pain (which I've had for about 15 years) and that I was no longer in danger (obviously referring to GCA). He wants me to decrease to 7 1/2mgs for a couple of months and then to 5 but sent me for a blood test and said not to decrease till he rang me with the results. I rang my doctor who also gets the results and she told me my CRP had gone up to 8, previous visit was 5. I rang rhumys secretary to remind him to call me, to find there's a recorded message saying that they are on annual leave till March 20th!!! Since it will be at least then before I hear from him I'm looking for advice as to what I should do. Should I increase, put up with the pain and headaches etc and stay the same or chance decreasing? Sorry so long winded! Thanks in advance 😊

0 likes, 14 replies

14 Replies

  • EileenH
    EileenH Mrs_Hobbles

    Posted

    For me, the fact you have a return of symptoms AND your CRP is creeping up is a sign that a trial of a bit more pred is called for. If it iS fibromyalgia then that pain won't respond to more pred. Anyway, let's face it, you've had fibro for 15 years so YOU must know the difference between your PMR and fibro! Whereas I have yet to meet a treating doctor who has had either, never mind both!

    What did your GP say? Anything? I'm very wary of a doctor who claims someone is no longer at risk of GCA - the propensity for both it and PMR to flare remains for life according to most experts. You are rarely cured of autoimmune disease, it merely burns out and goes into remission. For life one hopes. But that isn't guaranteed.

    • Mrs_Hobbles
      Mrs_Hobbles EileenH

      Posted

      Thanks Eileen, appreicate you advice. Yes fibro pain is different and tried telling him that but you know these rhumys (and doctors) they know everything and the patient know a nothing, it's so frustrating trying to get your point across😡 Doctor won't make a call, will leave it to rhumy. I was very surprised that he basically diamissed that GCA can flare tho depressing to think it has the ability to flare for life 😔 What dose would you suggest Eileen and do you think a quick increase and then back down would work rather than parking at a higher dose again? Thank you ?

    • EileenH
      EileenH Mrs_Hobbles

      Posted

      I suppose there's no chance of another rheumy? Anyone who disputes the patient's knowledge of their own pain is arrogant - and arrogance equates to risky behaviour in my book.

      A quick blast might work - it might be worth trying as you can go back to where you are if it is less than a week or so. I don't know what to say - we aren't doctors and not really allowed to provide what amounts to medical advice when it is as specific as that. Of course if you can bear to leave it another week that leaves you just about at them being back and on the end of the phone. Then you can see if it gets worse - and could have time to try a higher dose to see if it improves it. Will your doctor do a CRP for you? How long does it take to get the result? You'd get it same day here, quicker if it was an emergency.

    • Mrs_Hobbles
      Mrs_Hobbles EileenH

      Posted

      Thanks Eileen😇, I dubbed in head first and took 40mg this morning! I'll stay on that for 5 days, then come back down to 10mg. Hopefully the quick blast will work but also not be on it long enough to make it difficult to come back down. Two friends were prescribed 40mg for chest infections and had no bother when they finished after the 5 dsys, so that's giving me solace! I'll go to my doctor on Thursday and get my blood done for CRP, should have the results back by Mon or Tues, so will know where I stand by the time rhum is back. I don't think it'd have been a good idea to wait for him to get back and see what he'd say, as things could have excalated by then. Sincerely hope this works, it will give me ammunition to have a go at him about not paying attention to what I said about MY pain. He can't really have an argument as he didn't get back to me before he went on hols, I had to take some action. If it doesn't work and it is fibro and random headaches, then I don't have to tell him anything😁

  • robby6859
    robby6859 Mrs_Hobbles

    Posted

    Just my opinion of course!  Going from 10 to 7 1/2 is a big drop.  Seems like when going below 10 is where many people seem to start having some bigger issues after being on Pred for more than 6 months.   To ask you to reduce further when GCA symptoms seem to be creeping back in is unacceptable.   You know your own body, why do we take this nasty drug if we don't take enough to control the symptoms?  It sure isn't a cure.

    • Mrs_Hobbles
      Mrs_Hobbles robby6859

      Posted

      Thanks Robbie, I hadn't started to reduce below 10mg and if I did would be doing it very slowly. Rhumy is all for the big drops!! I agree with you about dropping while symptoms of GCA there, was very surprised he said that I was out if danger implying that thats it, no more GCA, if only!!

  • mary_49929
    mary_49929 Mrs_Hobbles

    Posted

    I feel your drops in steroids have been big. I m down to twelve and a half now, but over eigjt months from 60 eight months ago.. it does sound like a flare up..I m very new at all this, and learning all the time, but suggest you change your dr, and ask if you can up steroids to see if systems ease..good luck, and do hope you feel better soon.. having this can be a lonely path to travel as people find it hard to understand how horrible it can be at times....x
    • Mrs_Hobbles
      Mrs_Hobbles mary_49929

      Posted

      It is a lonely path Mary, so hard fkr leopke who dknt have it ti understand it. Also difficult to constantly be windering about pain levels and dosages! You've been great reducing as you have been, definitely doing it the right way. Hope things continue to go well for you x

    • mary_49929
      mary_49929 Mrs_Hobbles

      Posted

      It's been difficult I must admit as GCA came on very quickly, then told I had this too, and also lost a lot of sight.. but you have to keep going, even thro taking steroids has been awful, and am on Methotrexate too, have been for six weeks, so still got a few weeks before it kicks in...been a very strange difficult few months, but getting there xx

    • Mrs_Hobbles
      Mrs_Hobbles mary_49929

      Posted

      Sorry to hear that you've lost alot if your sight, it very scary. I've lost some sight too. I've been told that it could be from the steroids also and MAY improve as I get lower. Hopefully that will happen and will be the same for you. It is a very difficult time until things settle down. Mind yourself xx PS apologies for my typing errors in my original message!

  • track
    track Mrs_Hobbles

    Posted

    Hello Mrs Hobbles,

    I am not a Doctor, but I was told Prednisone had to be increased if GCA returned,

    please check with your Doctor re this, very important.

    best wishes, 

    • Mrs_Hobbles
      Mrs_Hobbles track

      Posted

      ThanksTrack, i increased to 40mg and it definitely has looked after the pain also confirming that it was PMR as my rhumy said it was more fibromylgia pain! It also seems to have looked after the temporal pain which was very much coming and going, not staying. I'll stay at 40mg for another 3 days and hopefully it will have looked after everything, then will return to 10mg, where i was originally at. Thanks for your message. xx

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.