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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

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  • diana21296
    diana21296 Joydeck

    Posted

    First year of PMR I had some pain but as I dropped the pain disappeared and I am now pain free.  But I do feel ill in myself and very tired for 5 days after the drop even though I only drop half mg a month. My body hates a drop. 

    My friend with PMR has never felt ill like I do, but when she drops she gets pain back in her neck and shoulders which is where it started for her.  Shows how different each case is.  Good luck.

    • Joydeck
      Joydeck diana21296

      Posted

      I guess my questions relate more to PMR sufferers still on the higher doses.  I am currently on 23 mg prednisolone (split 16/7).
  • EileenH
    EileenH Joydeck

    Posted

    Oh I think there are a few people who have no or almost no pain - mine is minimal PROVIDED I take enough pred. Although I have myofascial pain syndrome - and that will flare without the PMR flaring, just by wrenching my back for example.

    After over 8 years of experience on forums and hundreds of patients, I really think the GP who says there should be NO pain is wrong (but then, she won't have had PMR herself!), especially at the start because some of the things take a while to calm down, especially bursitis. But I know there are doctors who believe that ALL will be well on pred and you will be back to normal immediately you take your first dose. Oh that it were so!!

    After 5 years of untreated PMR I started with 15mg of pred and in 6 hours I could move normally. But the foot and hand pain I had took about 3 or 4 months to go entirely - that was due to synovitis and tendonitis. The hip bursitis took more like 6 months.to go entirely. And occasionally they return - mostly if I've overdone the specific activities that don't do bursitis any good - but it is also an early (but not the first) sign of a flare for me.

    I'd suspect the outer shoulder pain is residual bursitis and that, providing you don't overdo things with those joints, it will fade with time. The blood supply to the bursae is poor and that slows things down. Steroid injections often achieve a far faster result but don't always work or you can't find a doctor who will do them.

    As for how much sport - you have to train from a very low level really. Build it up to find YOUR personal limits because no two people are the same nor affected the same. Generally someone who was highly trained pre-PMR will be able to do far more simply because they are starting from a much higher baseline. But the training aspect is important - your muscles are intolerant of acute exercise and they have to get used to it SLOWLY. But that is relative - your slowly and my slowly will be different too. 

    • Elizamc
      Elizamc EileenH

      Posted

      Hi Eileen, when I was taking 40mg of Prednisone for my asthma I had no PMR pain or stiffness (it was the day after taking my first dose, it was like a switch had been turned on and I felt fantastic) but the pain and stiffness returned pretty quickly when the week's course ended. Since being diagnosed and put on Prednisone 15mg for PMR I have had varying but generally low levels of pain and stiffness. 

      As you quite rightly say - we are all different but I feel it makes sense to take the dose of Prednisone needed to control the symptoms caused by the inflammation, but at the same time to remember that the inflammation is there but being masked. 

    • Joydeck
      Joydeck EileenH

      Posted

      Bursitis could well describe my present symptoms that seem worse in one shoulder or other.  Although I am right-handed, playing 12 hours of tennis or badminton a week, my left shoulder usually aches more. 

      As for building up strength again, I have taken the past month to regain fitness although I have lost 3 kg weight I can ill-afford.

    • Reeceregan
      Reeceregan Joydeck

      Posted

      Me again. 🤪 sorry to gatecrash this conversation but I also had the severe frozen shoulders both sides but my right is much worse than the left, and lingering on. Eileen suggested it may be either bursitis, rotator cuff impingement or myofacial pain syndrome and she was spot on as usual. X-rays and scans showed rotator cuff.  Have been under a massage therapist but I keep undoing his good work ( sprained my ankle this week, now on crutches 😩wink  so again I took Eileen’s advice and have had one session of Bowen Therapy. So far very good, already less pain in shoulders and upper arms, also less pain in upper leg

      muscles. 

      Looking forward to my next one in 10 days.  I’m off now, I’ll leave you alone before you get sick of me. 

    • Reeceregan
      Reeceregan

      Posted

      I lied. Forgot something. I was 49kls and lost 9 kls which like you, I could not afford. Back up nearly 5 kls over 6 months since pred, but it’s in al the areas I don’t need it! (Chipmunk cheeks, buffalo hump and midriff muffin). Why couldn’t it go back from where I originally lost it!!??? Boobs, butt arms and legs!! (Sniff). 
    • EileenH
      EileenH Elizamc

      Posted

      The 15mg probably isn't quite enough for you to clear things out - some people need up to 25mg to start and having been on pred before seems to exaccerbate that.

      There was a kneejerk reaction to discovering patients did respond to 15mg and the commonly used 30mg starting dose previously was knocked back. Now they have realised they went too far and some people need more - the guidlelines now say "the lowest effective dose in the range 12.5 to 25mg, exceptionally 30mg". 

    • Elizamc
      Elizamc EileenH

      Posted

      Thank you Eileen, do you have the link where I can read more about this please?
    • Elizamc
      Elizamc EileenH

      Posted

      Thanks Eileen, I have an appointment booked eith my GP next week and will discuss and clarify a way forward with her.
  • Michdonn
    Michdonn Joydeck

    Posted

    Hi Joydeck, I skied last winter PMR pain free, after ski season I had a very bad flare, need 30 mg for about 6 weeks to get PMR pain free and have been except for a couple of minor flares. Currently on 11 mg tapering to 10, I am active and looking forward to another great ski season. Thinking positive and smiling. 🙂

    • Joydeck
      Joydeck Michdonn

      Posted

      Maybe I should try 30 mg. 

      As for skiing, I skied eight hours a day for three days -  at Mt Buller late in September - despite burgeoning PMR symptoms.  Great skiing and looking forward to next year.

    • Michdonn
      Michdonn Joydeck

      Posted

      Joydeck, last year I skied 5-7 days a week for the season. I was PMR pain free, about a couple weeks after the end of our season is when my bad flare occurred. Good luck next season, waiting for snow now. The mountain was suppose to open this coming Friday, but we have no snow. Thinking positive for snow with a smile on my face. 🙂

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