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

Residual PMR pain whatever the dose

Posted , 14 users are following.

Joydeck
Joydeck

In 2105 EileenH wrote, "But whatever dose, there is often some residual pain, you aren't pain-free". 

I am 5 weeks on prednisolone and back to full fitness (with sport aplenty) but I do have mild persistent pain in my outer shoulders (none in my hips).  This mild pain had been sharp during atypical arm twisting but is becoming more of a constant dull ache.   

What long-term residual pain do others experience despite the pred?  Is this residual pain unchanging over time?  Is an increase in this pain the first PMR symptom when pred tapering is a little too rapid?  Is anyone on pred entirely free of pain?

1 like, 60 replies

60 Replies

Prev
  • Reeceregan
    Reeceregan Joydeck

    Posted

    Hi Joydeck,

    I have both PMR and GCA, started on 50mg 31.5.17 with an inflammatory reading of 53, and so far successfully tapered to 12mg under the rheumatologists guidance. Due to drop to 11 mg tomorrow.

    On saying “successfully”, it has not been without flare ups and residual pain. I have never been totally pain free, but I did have a “bad dose” of all symptoms for both in the beginning.  I was very fit and active and healthy prior to PMR/GCA but it hit with a vengeance and I was almost immobile, needing my husband to dress, toilet and generally care for me until starting pred on such a high dose. Once I get to 10mg I’m going to reduce via the DSNS method, had a

    mg at a time over a month. I don’t wan to risk more severe flares or pred withdrawal symptoms compromising things. My GP and rheumatologist want me as low as possible, in fact they want me off it if possible due to my “dickie” liver.  So short answer after my long winded response... I’ve never been pain free but I can live with a minimal amount. I’f it increases as I go lower I will stay on whatever dose is necessary to avoid the pain. Good luck in your journey,  I know I have been somewhat luckier than most so far, given how bad it was. I’m sure you will get to your best point and go from there.

    Just don’t rush it if you can’t tolerate it.

    • nick67069
      nick67069 Reeceregan

      Posted

      have you considered to switch from prednisone to prednisolone if you are concern about the liver? While prednisone needs to be processed by liver onto cortisol, prednisolone is already in usable form and does not need the conversion.
    • Reeceregan
      Reeceregan nick67069

      Posted

      Hi Nick, to be honest, no, I hadn’t, only because the GP or rheumatologist haven’t mentioned it. The GP wanted me to ask the rheumatologist about going on methotrexate as  well but I wasn’t keen and have been managing ok on the tapering so far and the rheumy didn’t suggest it either. Maybe I should look into that. Thank you 👌

    • EileenH
      EileenH Reeceregan

      Posted

      I'd be looking at your GP with a degree of scepticism about his knowledge of the medications involved. If he is concerned about prednisone then methotrexate shouldn't even be in the room, never mind on the table! The primary concern with using mtx is the liver and its effects:

      "long term methotrexate therapy has been associated with frequent but mild elevations in serum liver enzymes and, more importantly, with development of chronic liver injury, progressive fibrosis, cirrhosis and portal hypertension."

      That is why patients are warned not to drink alcohol or only in small amounts and why they are monitored closely. 

      If you already have a "dickie" liver - no methotrexate. Not being nosey though - but is the liver problem a "real" one or just because you have raised alkaline phosphatase levels (a liver enzyme) - happens in between a third and a half of PMR/GCA patients.

    • Reeceregan
      Reeceregan EileenH

      Posted

      Eileen, you could never be nosey, your imput is so valuable on this forum!  My liver issue stems back 37 years but I’m told it’s I only mild. I had to have surgery way back then and when the anaesthetist did his pre-op he found my liver to be enlarged and asked me how much I drank. He suspected ciarossis. I told him I didn’t and he didn’t believe me and delayed the surgery till blood tests were done. I was given th all clear and away they went. A few years later at the age of 35 I contracted glandular fever with a touch of hepatitis. When i was about 50 I had my gall bladder out and in theatre the dr found a black spot on my liver and took a biopsy which came back benign. Non alcoholic fatty liver was diagnosed and regular LFT advised. They have always been fine, but my last couple have shown elevation. When I ask the rheumy how my bloods look he always says they’re fine, and tells me the inflammation rate etc. however I always get a copy of the results and come home and google any that are in red. The ones that are out of normal range seem to be ones that can be affected by coitosteroids e.g the pathologist notes that there is mild  thrombocytosis and neutrophelia, raised cholesterol levels and the liver tests are always out of wack as  well. My current natoropath/chiropractor who also specialises in the Mora Therapy also picked up that I have a liver issue and has me on a tincture for that. Coincidently I saw him today and without me saying anything about the blood results he mentioned that he needed to increase the “ingredients” in this liver mixture as my testing showed my liver wasn’t as good at the moment as it had been when I first went to him..which was just prior to PRM/GCA diagnosis and starting 50mg pred at the end of May.  Made me almost want to come home and have a tall glass of wine! 
  • Bethune
    Bethune Joydeck

    Posted

    I’ve been Fred of all pain while on prednisone, but never forever...  always returns ... 
Back to top
Prev

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.