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flare ups

Posted , 7 users are following.

beatrice74480
beatrice74480

Hi fellow sufferers any advice please. I finished taking Pred a week ago as my Esr was 10 and all pain and stiffness under control after two years. now I have groin stiffness affecting walking just as I had in beginning. Am not sleeping writing this at 5am. Severe hand pain with Arthritis waiting to see hand consultant. Joints in knee stiff, is this a flare up.Any advice welcome.really feel like going back on Preds as I felt great on them.Must take into consideration I am an active 75yr old I suppose. Blood tests today .

3 likes, 12 replies

12 Replies

  • pam41628
    pam41628 beatrice74480

    Posted

    Ouch! I have just started pred and am already scared about the side effects and tapering!! (I started at 15mg and noticed relief within 6 hours what a miracle drug. And i resisted going on it for 4 months - tried acupuncture, fishoil, tumeric, green drinks no alcohol or coffee)

    Did you do the slow taper as reccommended? Pam

  • tina-uk_cwall
    tina-uk_cwall beatrice74480

    Posted

    Oh Beatrice, I have a bad feeling about this! Of course your ESR was normal and your pain and stiffness under control - you were on preds and it was the preds that put you there. Now the preds have been removed and surprise surprise the PMR symptoms have returned because the PMR hadn't gone away it was being masked by the preds. 

    When I read that you were all done and dusted with PMR within 2 years I immediately thought how lucky you are. But I think I've read that the quicker one "recovers" from PMR the higher the likelihood of it returning. I wonder what the bloods will reveal, I suspect a slight rise in your ESR levels.

    if this is the return of PMR then obviously you'll need to go back on the preds without delay, hopefully that way you may not need to go on a high dose but on to a relatively low dose that will keep the remaining fizzling PMR under control. What a shame and I do feel for you. You must have been so relieved to have been told that you were now free from this wretched condition.

    i wish you all the best, christina 

    • beatrice74480
      beatrice74480 tina-uk_cwall

      Posted

      I had only been on 1 preds a day so was feeling confidant when Rheumy said no more.Bloods today and will wait and see.No hesitation to take again if required.Don't really want to but a miracle drug.Problem is I feel quite well otherwise than stiffness which eases as the day goes on. Thank you all replies welcome
  • MrsO-UK_Surrey
    MrsO-UK_Surrey beatrice74480

    Posted

    Beatrice, if it had been just the knees and hands, I would have suggested it could just be left-overs from the side effects of the steroid treatment to your muscles and joints - certainly my leg stiffness continued long after reaching zero Pred.  However, with the pain in the groin area as well, it does suggest a relapse.  

    Your blood tests may obviously provide an answer if they were raised at the outset of your PMR, although from reading other people's experience with returning PMR, their blood tests didn't always correspond the second time around. 

    You mention being an "active 75yr old" - therein could lie the answer to any relapse.  It is recommended that we still take special care not to overdo things for up to a year post-steroids as it can take that time for our bodies to totally recover.

    If this is returning PMR, then the most important thing you can do is to get back on steroids asap - a 10mg starting dose this time around will probably control the inflammation provided it's got at quickly.  Lots of good luck wishes and do come back and let us know. 

  • Oregonjohn-UK
    Oregonjohn-UK beatrice74480

    Posted

    Could be just withdraw symptoms?  Take it easy for a couple of days and see if it goes or eases.  If not Mrs O's advice is the answer - start at a lowish dose and see if it works and then a week later start reducing again - slowly!!.
    • beatrice74480
      beatrice74480 Oregonjohn-UK

      Posted

      Thank you everyone I have had blood tests today and should have mentioned was on 1preds a day for 2months Rheumy sa
    • beatrice74480
      beatrice74480

      Posted

      I still keep losing my reply sorry. Rheumy says it's a comfort dose and does nothing at all. A lady I know stayed on it for 4 years and is really good now. A lot less stiff today will wait for bloods results and decide.I was ok on 2daily. Trial and error don't really want to dose again. But it

      I.is a wonder drug

    • MrsO-UK_Surrey
      MrsO-UK_Surrey beatrice74480

      Posted

      Beatrice, your rheumy isn't the first one to say that 1mg is a comfort dose and does nothing at all.  Even removing half a mg can produce an unwanted reaction.  Our bodies become dependent on our current dose, and the lower we get on the steroids, the higher the percentage drop.  Far less shock for the body to remove that last 1mg in a half mg step.
    • EileenH
      EileenH beatrice74480

      Posted

      Well he might think so - on the other hand, if it works 1mg is such a low dose it can't do any harm and if it keeps you pain-free why worry?

      Time for a long discussion with your GP...

  • EileenH
    EileenH beatrice74480

    Posted

    You won't be the first person to have been told it has gone, stopped pred and it came back. I assume you mean 1mg/day for 2 months? It may be a small dose but it does seem to have an effect for some people - but of course, I hardly expect a rheumy to believe that! 

    If the blood test is up - the sooner you hit back the better. 

    • beatrice74480
      beatrice74480 EileenH

      Posted

      I totally agree with you Eileen yes 1mg for more than 2months.Apart from the leg stiffness and a minor shoulder one today hasn't been to bad.I have had a very busy shopping two days so will chill all day tomorrow.On verge of taking 1mg again should know results before end of week .I do physically feel good and my Bowling season has started and going ok so far.They said don't upgrade just take painkillers.Perhaps if they had a flare up they would understand better.They so keen to stop preds.
    • EileenH
      EileenH beatrice74480

      Posted

      Then even 1/2mg for 2 months would have been a 50% reduction and would have made more sense. Or dropping the 1mg one day a week at first, then 2 days and so on. 

      Yes - I'm beginning to feel that they shouldn't be able to dictate whether we have pain or not. The contrast with my GP is so strange - I saw her a couple of days ago to get the suitcase full of prescriptions and mentioned I'd been stiffer and had a bit of pain recently - had taken 10mg instead of 4mg the night before and did feel a LOT better. Fine she said, handed me a prescription for the 5mg tablets so I could try 5mg regularly and if it helped. 1mg is neither here nor there. She has worked in rehab (our rheumatology) so sees the pain and disability in PMR - but then, here you often get physio and regular assessments where needed.

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