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PMR It's back!

Posted , 9 users are following.

Blockhead
Blockhead

After 2 years I slowly reduced prednisone, was off of it for a year and felt great. Now what is odd, is it came back at the same time of year I originally got this, May. The ongoing fatigue feeling, upper arms, and hips are being effected. Not as bad as when I first got this. It absolutely levelled me where I couldn't even walk. Once on prednisone I was immediately feeling better. For a year I was on 20 mg a day. 10 in the morning and 10 at night before bed.

Now the question I have is do I get back on the pred with this Corona V. around? Knowingly that the pred. lowers my immune system.

I also would like to hear from others.

I'm generally healthy and fit age 59

I first developed symptoms of PMR at age 57

I'm wondering if prior vaccines for the flu or maybe some prior medical procedures could have to do with this PMR

Having some prior shoulder orthoscopic surgery to remove bone spurs with a (Nerve block agent used) years after I developed a small syst. on my spinal nerve which caused bad sciatica, which was taken care of by an injection shot blasted directly at the syst. which worked.

I really believe that some of these medical procedures could have to do with PMR.

Is there a survey for PMR Patients that tracks Prior medical procedures for people who have PMR?

I think it would be very helpful in nailing down the cause and maybe finding a cure all.

Open for thoughts from others on all this.

0 likes, 4 replies

4 Replies

  • EileenH
    EileenH Blockhead

    Edited

    You didn't manage your PMR in the usual manner - it is very unusual for a patient to remain at 20mg for a year and doesn't achieve anything except a higher accumulated dose. You START at 15 or 20mg and then within weeks start to taper the dose gradually to find the lowest dose that manages the symptoms as well as the starting dose did. It is a process called titration - normally done the other way round, starting low and moving higher to find the lowest effective dose but that doesn't work well with steroids. This results in most patients getting well below 10mg for the longer term - and they generally are able to keep reducing for a considerable time and some get all the way to zero without any flaring of the symptoms. It can take anything from 1 year to far longer, the average is 6 years. About 1 in 5 get off pred in a year - with no need to remain at 20 the entire time, a third are off pred by 2 years - the rest of us take a lot longer obviously.

    The general consensus is that a lifetime of insults to the immune system eventual cumulates in it going haywire and turning on the body to attack it as it doesn't recognise body tissues as self. You wont find any two people with the same history - I'd never had a flu shot, others have never had surgery, some blame a bereavement, others a house move, loss of job, a wide range of presumed causes. I believe there is a study of what patients blame for their PMR. No-one knows what causes autoimmune disorders - and until the cause is identified, there won't be a cure except by accident.

    You may think you will manage your PMR without pred - but unmanaged PMR is much more likely to progress to its big brother: giant cell arteritis. And if that happens you have a stark choice: very high dose (60mg and even more) pred or risk irreversible loss of vision. Which could have been prevented by judicious use of lower doses.

  • Boone
    Boone Blockhead

    Posted

    I'm wondering if prior vaccines for the flu or maybe some prior medical procedures could have to do with this PMR

    Are you on any statin cholesterol medication? Just curious.

  • AllyCD
    AllyCD Blockhead

    Edited

    View my PMR as a wake up call - trying to do too much for 97 year old mother and autistic son who live with me. All is my responsibility and I worried too much. Just ended year3 and am now on 5mg having started on 15. Not quite the simple journey I'd hoped for but progress nonetheless.

  • maureen49480
    maureen49480 Blockhead

    Posted

    I am convinced that mine started after having the vaccination against shingles.

    I was hit very badly last September with Polymyalgia when I could do absolutely nothing , not even get a cup to my lips.

    I have changed my diet, mainly cutting out carbs, eating lots of protein, nuts and berries.

    I managed to get down to 10 mlg of predisolone and then 8mlg.

    I started taking half in the morning and the rest on going to bed at night.

    I finally got so fed up with being awake, trotting to the loo almost every hour of the night and only getting about 3 hours sleep.

    Last weekend I made a decision to cut out the night medication and was terrified how I would be the next morning.

    The terrible pains in my feet and legs at night has stopped and at the moment I am not noticing any difference pain wise.

    I am not getting up nearly as often at night and I am sleeping so much netter.

    Fingers crossed that I can keep this up. If I get a flare up then I will increase short term.

    So fed up with the extra weight I have put on with the steroids, That is making me depressed.

    I hope I can reduce more in the next couple of months.

    I have gone from 25mlg since September.

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