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Dropping out of the group

Posted , 5 users are following.

Debkimly
Debkimly

I am now diagnosed having severe RA so I need to leave this group.

0 likes, 13 replies

13 Replies

  • murray2
    murray2 Debkimly

    Posted

    Hi, like you, I was firstly diagnosed with PMR, then the rheumatologist said I had sero negative RA. I still take 10mg of prednisone, along with methotrexate and sulphsalazine, so I stay in this group for information about prednisone. I also joined the RA group.
    • Dinah54
      Dinah54 murray2

      Posted

      Hi Murray - I too have been told that I "probably" have seronegative inflammatory arthritis rather than PMR. But I am not keen to take methotrexate until I have a definitive diagnosis. I have not, for example, had any MRI scans. Do you know what the criteria were for your diagnosis?
    • Debkimly
      Debkimly Dinah54

      Posted

      My rheumatologist based it on the bloodwork and the fact my wrists were involved.  My daughter is a pharmacist and she feels the methotrexate is better long term than predisone. No MRI yet.
  • tina-uk_cwall
    tina-uk_cwall Debkimly

    Posted

    I agree with Murray also join the RA group. But, if you are still taking preds stay and offer all your knowledge and experience of that. But even so this is an open forum, and I'm sure we don't expel or send round the PMR police to make sure you never darken our group again! Now you have a definate diagnosis I wish you all the best and hope that your new journey is a smooth ride. All the best, christina 
  • EileenH
    EileenH Debkimly

    Posted

    I'm sorry to hear your diagnosis of RA - but it is something that happens to about 1 in 6of  patients initially diagnosed with PMR. If it is severe then I'm sure they will switch you to DMARDs rather than pred - but you don't NEED to leave! There is far more available for RA patients and I would recommend a blog called rawarrior - Kelly has researched her posts very well and there is loads of information to be found there.

    Good luck.

  • murray2
    murray2 Debkimly

    Posted

    Hi Dinah, a month or so after getting the PMR symptoms I started getting pain in the hands, wrists and feet. I think that is why the rheumatologist diagnosed first inflammatory arthritis and later RA.
    • EileenH
      EileenH murray2

      Posted

      Pain in hands, wrists and feet can also be part of PMR - a study last year has come to that conclusion. One we had come to a long time ago and had told the doctors!
  • murray2
    murray2 Debkimly

    Posted

    Eileen, I am not sure of the RA diagnosis either. However, when I get flare-ups there is pain in hands, feet and wrists, not in shoulders and hips. I am currently on 10 mg of prednisone with instructions from the doctor to reduce to 7.5. In the past going lower than 10 has resulted in more pain in hands etc. It will be interesting to see what happens as I continue reducing the pred with the addition of sulphsalazine.
    • Debkimly
      Debkimly murray2

      Posted

      I know the whole process is clear as mud.  I am also wondering what will happen as my predisone goes lower.
    • EileenH
      EileenH murray2

      Posted

      How are you getting on with the sulphasalazine? The rheumy who wouldn't listen wanted me to go on that but luckily I was about to move to Italy and he wouldn't do it until I had a rheumy here - it isn't ideal for use here since you aren't supposed to be in the sun! I say luckily because it was pretty obvious it was PMR and sulphasalazine isn't one of the drugs they suggest for "difficult" PMR. How long have you been on it? Does it take some time to work like most DMARDs?
  • murray2
    murray2 Debkimly

    Posted

    Eileen, I've been taking sulphasalazine since early December last year. I had had a flare up while travelling and the doctor increased the pred dosage from 4 to 15mg a day, as well as recommending sulphasalazine. I gradually increased the dose of sulpha to 2000 mg a day. My pain in hands, wrists and feet decreased a lot. Noticeble benefits after four weeks. But was it the sulpha or the increased pred? I was better on 15mg pred than my current dose of 10mg. The only side affect of the sulpha is a little nausea sometimes. The sun sensitivity has been only minor despite the Australian summer.

     

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