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PMR Flares

Posted , 5 users are following.

amkoffee
amkoffee

How do you know if you're having a temporary flare or if your pain is because your dosage is too low?

I was really hurting when I got down to 10 mg so I asked my Dr if I could go back up to where i wasn't hurting

And go back down slower. So I'm now add 12mg which I wasn't hurting before and now I'm hurting horribly.

I went in today to have thyroid checked since I was due anyway. That way I can rule that out. And I'll the results tomorrow.

But I think this is all PMR.

0 likes, 20 replies

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  • cheryl74384
    cheryl74384 amkoffee

    Posted

    yes, well i don,t know the answer either, but oct 12 started 40 mg,then decrease by 5 every u3 days, until got down to 20 mg for last 11 days, up to last few days, i was managing not much pain, just very tired no sleep, but last couple days, especially today, very sore shoulders, hurting, only thing i can think is that i did do a lot of running around yesterday,shopping etc, which i havent done in last few weeks, so maybe that caused what i will call a flare, hard to know though,
    • amkoffee
      amkoffee cheryl74384

      Posted

      I think you tapered way to fast. That's the problem with doctors. They always want you to taper to fast.

  • EileenH
    EileenH amkoffee

    Posted

    You can't even know if it is a temporary flare - I had a flare in February while at 5mg, an increase in the activity of the disease not a dose reduction that failed. I went back to 15mg under the instructions of my rheumy trained GP. And I needed that - I was great at 15, by 4 days at 12mg it was back. I'm fine at 10mg now, I've tried for 9mg, and at 9.5mg the PMR pain reappeared. Not sure if you count 8 months as temporary!

    The combo of thyroid and PMR isn't good! Are you sure you haven't got anything else going on?

    • amkoffee
      amkoffee EileenH

      Posted

      No with my luck i probably do. But in reality I do suffer from a bad back. Have had it

      For 10 years and take opiates for it. So pain is breaking through that even. And my back is

      At an all time worse too but rheumy doesn't believe it has anything to do with PMR. (Eye roll,)

    • EileenH
      EileenH amkoffee

      Posted

      I have myofascial pain syndrome problems - and it really does get mixed up and when one is bad, so is the other. I'd had it long before PMR added in its joys so I do have a fair idea which is which but they feed off each other. That's why I often suggest trying Bowen therapy or, if you can face apparently having short-lived flares as a result - looking for a good sport massage therapist who I find are the best to dig out the trigger points and do a bit of manual mobilisation.

      Here in Germanic mainland Europe they do a needling technique (called quaddeln here) which I have just discovered is also known as intramuscular stimulation. My GP did a session for me about 12 days ago - and the relief is amazing. She also referred me for massage - I have to see a doctor first and the first available appointment is the end of February! Then it could be another 6 months until I get massage, if the doctor approves it! So I'm hoping the GP will give me another session - which was free... She is rheumy trained and they are very broad-minded about what can happen so I don't get anyone poo-pooing the connections thankfully.

       

  • EileenH
    EileenH amkoffee

    Posted

    You can't really know whether it is temporary or not - my flare back in February was due to an increase in disease activity not reducing too far - I'd been stable at or around 5mg for over a year. It needed 15mg to get under control, not just a small increase, and I still am at 10mg, any less and the PMR symptoms come back.

    Are you sure there's nothing else going on? Besides thyroid if that turns out OK?

    • cheryl74384
      cheryl74384 EileenH

      Posted

      i just don,t know, haven,t had thryroid checked, but what is odd to me is, if this little flare up is due to reduction to 20 mg, now bout 12 days or so , why wouldn,t this flare have happened when i reduced from the 25 to 20 after say a day or two, why would it take like 10 days on 20 for this flare up to happen, i,m going to see if gp will do bloodwork now while i have this, see if inflammation markers show, 
    • cheryl74384
      cheryl74384

      Posted

      and why would disease increase in activity when controlled by prednisone for so long, it,s just so hard to understand this , unless , just because you have a day where you overdo activities, or unless another stress factor comes into your life, 
    • EileenH
      EileenH cheryl74384

      Posted

      Pred does NOT control the disease activity. It only manages the symptoms to allow a better quality of life until the actual underlying disease process, an autoimmune disorder that makes your immune system attack the body tissues by mistake, burns out and goes into remission. The pred does nothing to that at all.

      You have admitted you did a lot the other day - your muscles remain intolerant of activity because of the autoimmune disorder and if you try to do too much you will get very achy muscles. You have to learn your limits and pace yourself - or put up with the consequences.

  • Sheilamac_Fife
    Sheilamac_Fife amkoffee

    Posted

    Maybe you havent had long enough on 12mg, but I have seen people on here who were flaring that have had to go higher than the previous dose they were comfortable at, to get to grips with the inflammation. Seems to me you need to take whatever dose controls it. Then stay there long enough to clean out the inflammation before slowly reducing again.
    • cheryl74384
      cheryl74384 Sheilamac_Fife

      Posted

      hello sheilamac, not 12mg, 20mg, and i started oct 12 on 40, dr,s tapered me every 3 days, to 20 11 days ago, and i was pretty good until last 2 days, so very strange,only other thing, is monday, i felt not bad, so was out for 4 hrs , wandeing around malls, and hadn,t been out much, doing much for last 3 wks, don,t know if that,s what brought this flare up on or not, so frustating not knowing, 
    • EileenH
      EileenH cheryl74384

      Posted

      Cheryl - I explained yesterday about looking at the top of a post to see who it is being written for.

      Sheila was responding to amkoffee so it isn't really relevant to your problem - you are at the start of your PMR/pred journey and should be adjusting to the normal starting dose, that is rather different to being on a much lower dose on your way down.

  • amkoffee
    amkoffee

    Posted

    For those that have replied to my problem, i thank you. This string seems to have taken a right turn.
    • EileenH
      EileenH amkoffee

      Posted

      Only a right turn? I was beginning to think more circles... rolleyes

      Have you had your results yet? Is the pain any better?

    • linda17563
      linda17563 EileenH

      Posted

      This may be the million dollar question, so excuse my ignorance, I have often wondered....do "they" have any idea why with some people PMR "burns itself out"  quicker than others?........

      ?Just had phone call from doc wanting to see me to discuss my raised cholesterol...7......well, I`ve had to up the pred to 11mg because of pain.....so the cholesterol goes up with it!....I`m not going on statins.....have heard they can give muscle pains too.....couldn`t put up with anymore I do know.....(Been on pred 5 years now)

      ?I`m waiting for an appointment for MRI....so hopefully will know more what`s going on......doctor is hell bent on me getting to 10mg again or lower, what is with these doctors!rolleyes

    • EileenH
      EileenH linda17563

      Posted

      No - sorry. They don't even know what causes the autoimmune cause of PMR in the first place. However, it is being thought that it isn't just one disease, that there are various forms of it. That could account for the fact that it does seem to settle into 3 formats: a short version lasting up to 2 years, a medium term version lasting 4 to 6 years and a longer term variety that just keeps on giving...

      Have you already had a cardiovascular event? If not then there is no evidence that being on a statin would make any difference. I was inviegled into taking statins once, for about 10 days. Never again - I felt so ill and couldn't walk more than about 50m without almost passing out. Up a slope was impossible. It took months to get back to where I had been the week before. I really was upset as I'd really not wanted to even try them.

    • linda17563
      linda17563 EileenH

      Posted

      Thanks again Eileen you have reinforced what I already thought about the dreaded statins....and no, I haven`t had any cardiovascular event....so definitely will refuse them if offered....I don`t drink alchohol, or smoke, I`m 11 st 4....which is about 10lbs heavier for me.....and blood pressure is ok....

      ​Suppose the doctor is obliged to follow my cholesterol reading up, when over a certain number.... 

      ​I suppose regarding what causes PMR, as they say, without the cause, we can`t find the cure.....

      Thanks again....

    • amkoffee
      amkoffee EileenH

      Posted

      Thank you Eileen. Your right it would seem that this thread is going round

      and round. As far as Linda's post I've been on statins for years and had a

      stroke while on them. They are not controlling my triglycerides but my doctor

      is afraid that raising the level would cause me pain and he knows I have enough

      of that. God knows that's the truth.

      No I'm still waiting for the results. I called and talked to the nurse and she

      Looked then up while I was on the phone as if she was going to give me the results

      but then said that the doctor has to Review the results first. That makes me

      nervous. I mean it's either High or low right? So now I'm waiting to hear from

      them again.

    • EileenH
      EileenH amkoffee

      Posted

      I don't know - it makes sense to make sure a doctor has seen them because even then, without you getting the numbers they are quite capable of getting it wrong!

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