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2 years since diagnosed with PMR

Posted , 13 users are following.

derek98287
derek98287

its been a while since i posted anything but as I've just reached the 2 year point on pred I thought I'd give a quick update on how things are going, Last time I posted I'd had my first PMR relapse and had to go back to 8mg pred from 5. That was January 19. I've reduced slowly over this year and am now down at 2.5mg with no pain or stiffness at all and preparing to reduce slowly to 2mg. The only symptom i do seem to get when reducing is fatigue and while i am pain free i still don't have the energy or stamina I had before this started. I'm optimistic now that an end maybe in sight, but do others find fatigue and lack of energy persist?

I had a bad cold 2 weeks ago, it lasted about 4 days with flu like symptoms including headache and mild temperature I felt quite ill fir a couple days. All better now except the headache which seems to me the usual one I get with colds/flu or if really overtired - centre forehead and behind eyes - comes and goes and paracetemol and esp. iboprufen relieve it completely. Doesn't sound like beginnings of GCA to me and i have no other symptoms but what do others think, has anyone found that colds and flu seem to last longer with PMR? Generally I've avoided infections in the last year except this one virus.

0 likes, 11 replies

11 Replies

  • judith87642
    judith87642 derek98287

    Posted

    reducing 6 towards 5....No energy...worn out all of the time..I sometimes feel like I'm on the verge of a sinus infection, but I haven't been really sick..I use Airborne, stay home, Vicks and fortunately, I haven't gotten really sick..Some minor soreness, but no horrible weakness and pain....Crossing my fingers I stay well..The fatigue is what bothers me most....

  • EileenH
    EileenH derek98287

    Posted

    This is probably the other fatigue fight - waiting for your adrenal glands to catch up. Bit what a good journey you have had really!

  • jean39702
    jean39702 derek98287

    Posted

    It sounds like you're doing really well Derek, except for that nasty cold virus. Have a wonderful Christmas and slow but steady continued PMR recovery/remission.

  • TheRaven
    TheRaven derek98287

    Posted

    Sounds like you are doing very well! After a couple major flares in my first 18 months, I've been reducing extremely slowly - 1 mg every 13 weeks and am currently at 5, moving towards 4.5 mg. Like you, I fight the "Deathly Fatigue" as many of us call it. As Eileen said, it's probably because the adrenal glands haven't gotten back to working full time. Yes, it seems like it takes longer for me to get past any kind of "bug" now days. Thankfully they've been far and few between.

    I have periods where the fatigue doesn't seem so bad but I avoid the temptation to do more than I should. Pushing harder than one should almost guarantees Deathly Fatigue, muscle pain or even worse - a flare.

    If you are at a dose of 2 mg, I definitely wouldn't push to get to zero. Being pain free or almost pain free is what matters. A dose of 2 mg per day is so minimal that I would think one could almost take that forever with virtually no risk of side effects from the prednisone. Keep it up!

  • BettyE
    BettyE derek98287

    Posted

    I thought I had sent a reply yesterday but must have forgotten to click the blue button!

    It was just to say that I estimate it took 18 months to regain something like normal energy/stamina levels. I had been taking Pred. for five years on this occasion which was my second round of PMR. First time was much more straightforward in many ways.

    • derek98287
      derek98287 BettyE

      Posted

      Thanks All. Yes I am pleased with progress esp. as so many others have a more challenging time. I should say that as well as (or due to) the fatigue I do find that i am intolerant of acute exercise sometimes and can't sit for long without stiffening up, so I have limits esp driving too far. But overall I'm generally doing well. I do wish more people had an awareness of rheumatic conditions, i frequently have to remind people of my limitations, which is frustrating. Thanks again

    • EileenH
      EileenH TheRaven

      Posted

      On the HU forum we had a thread talking about that and suggesting suitable replies. I can;t remember them all but

      "It isn't my face that's sick ..."

      "It's the drugs ..."

      and "You don't look stupid ..."

      spring to mind.

    • TheRaven
      TheRaven EileenH

      Posted

      I like the last one! I'll have to use that - I don't have a censor button..lol.

  • Michdonn
    Michdonn derek98287

    Posted

    Derek, we are all different, but every time I get a cold or virus I have a flare. Fatigue, I stay on the same level of Pred till I felt well and then started to taper, my Rheumey was not happy, but that okay it is not my job to please her! I am now pass the fatigue part stabilizing on 2.5 before starting my taper to 2. Take your time, stabilize, stay active, positive and try to smile it helps. 🙂

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