How do we know when PMR has gone?

I've had PMR for nearly 2 years now - although only diagnosed for 18 months. I have been reducing my prednisolone gradually from 20 mg to 7.5mg.

I missed a dose recently and the consequences were pretty mild - compared with previous occasions when I missed a dose and was in severe pain.

This has led me to wonder how I will know when the PMR has faded away...Do I have to still slowly reduce from 7.5mg to zero ?

11 Replies

  • Yes, you do have to reduce even more slowly once you get to 7.5mg. I know that's not what you wanted to hear, but you are now at the point where you are asking your adrenals to wake up and do some work and it is the last thing they want to do. Very lazy they are. Try to speed it up and you will get symptoms increasing as they can't/won't take the strain. You could very well find that the symptoms become more and more unmanageable and consequently you have to go back to a greater dose to contain them. Nobody wants that.

    Bear up though - at 7.5mg and under you should not have any Pred side effects to deal with.

  • I am on 5.5mg and I still seem to have side effects which is annoying, purpura, bad bruising, fluid retention, insomnia, curly, dry hair, gritty eyes, cramps, hot sweats ... The sweats and the purpura have improved a bit thank goodness and some side effects have gone away.

  • I found the serious side effects I was aware of (eye pressure, blood sugar) were gone by 5 mg. But as I get lower I've had a lot of non-PMRlike pain in my legs, and I seem to have wasted away even more. I'm assuming this is a pred side effect, caused by the long-term nature of the treatment, over eighteen months now. But it's on my list of things to try to rush through in my 10 minute appointment with GP tomorrow. Sigh.

  • Hi HeronNS. You say you are 'wasting away'. Is this whilst taking steroids? I saw losing weight is a symptom of PMR but I am also aware losing weight is difficult whilst on steroids.

  • Hi Granny-b. I lost a lot of weight before diagnosis. In fact I have no idea when things really got rather dire but it was what seemed to be a rather catastrophic weight loss which, with the continuing pain and growing inability to perform even simple actions, eventually got me to a doctor who diagnosed me. I did regain a little weight but have lost it again, it was only about 4 lb or so, and it's probably the exercise I do which has kept any pred pounds from packing on. But I think my muscle mass has dwindled and I suppose that must be a pred side effect. I've a naturally round face so it's not obvious when people see me but along with age-related shrinking I'm no longer a sturdy type, but rather a wisp of a thing. Which I find disturbing because I don't think my personality matches this new body at all. I don't like the assumptions strangers (like store clerks) make when they see this "little old lady" and yet I know that in younger days not so long ago I also didn't really see the real person inside that "little old" body. At heart I think I'm three with all the world and time ahead of me.

  • Good advice from polkadotcom- even after your PMR has gone (hopefully) you still have to reduce the Pred slowly - your body has got used to the drug and you need to wean yourself off it carefully.

    I think my GCA had burnt out when I got down to about 3mg - can't really explain how, but I just felt different, but because I'd been on Pred for a long time, and had some pretty horrible side effects on high doses, I knew I just had to continue my slow tapering. For two reasons really, there was still a niggling thought in my mind, perhaps it hasn't gone, and I no longer had any side effects so it didn't matter taking the Pred.

    I got to zero 3 months ago, but I'm still very aware of every unusual pain, and that my body is not back to normal yet- and yes I know it could come back, but I hope it won't.

    Just carry on as you are, and you'll get there - don't be in a rush and put yourself at risk. You've worked hard to get where you are - a little longer is neither here nor there.

    Good luck.

  • You know PMR has gone when you have reduced slowly to zero and the symptoms don't come back. That is the only way. As long as you are taking pred, there should be no symptoms and the blood markers should be "normal" - so you can't tell from them though some doctors seem to think you can!

    And yes, sorry, you do have to reduce slowly because at this stage your body now has to start to make its own corticosteroid, cortisol, which is essential to life. Above about 7.5mg the body registers there is plenty of steroid present - it doesn't care if it is natural or synthetic - and doesn't make any more. Now that set-up has to get back to normal and it is a very complex feedback system which has to settle down again. If you try to reduce too fast it will keep having to adjust and never get to settle down at all and it swings around all over the place. One top PMR specialist likes to keep his patients at 5mg for several months to let the body catch up - it does seem to work!

    If your adrenal function is not up to scratch you will find the fatigue you remember from PMR coming back - and it can be far worse. It is a sign to slow the reduction down a bit more. Even when you are off pred altogether it can take another year or so for adrenal function to get fully back to normal.

    But as pdc says - you are at a low dose of pred now, the side effects are not too bad.

  • Thank you, Ladies.

    Excellent advice - albeit not quite what I wanted to hear 😊

    DSNS for me for the coming year then.

    Onwards and upwards!

  • Yep!

    It seems whatever you do with PMR, GCA or Pred you need to do it SLOWLY.

  • It has been suggested that the Serum Interleukin IL-6 test will show whether there is any inflammation still ongoing and can predict the risk of flares. It is supposed to be more specific for PMR than either ESR or CRP. Unfortunately, most GPs and Consultants don't seem to do this test. Maybe this will change in the near future?

  • It isn't the cheapest of tests! So I doubt it somehow as a monitoring test at least. I had it done by the rheumy I saw - no idea what the result was but it isn't specific for PMR. it can be raised in a whole range of inflammatory diseases including RA, PsA, lupus and even diabetes. But there isn't always a correlation:

    " In RA there is a correlation between IL-6 levels in synovial fluid and markers of inflammation. In systemic juvenile idiopathic arthritis there is a correlation between disease activity and IL-6 levels. In lupus IL-6 levels are elevated, but in this setting there is no relation to levels of C-reactive protein. IL-6 levels in ankylosing spondylitis, psoriasis and Crohn's disease are also elevated and correlate with markers of disease activity. "

    and that might also be the case with PMR when they look at it more closely. I know the study you are talking about.

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