PMR without steroids

Hi all,

I was diagnosed a couple of weeks ago, at only 'just above average' readings. I was getting some relief from Ibuprofen, which I take first thing to help during the day and then before bed to help with the 4am pains. I deteriorate into the evening and am stiff and in pain by the evening but it's certainly nothing like what some of you experience. My GP has agreed to me self-medicating for a month then I go back. Has anyone experience at this lower level of PMR. Might it burn itself out and go away (she asked hopefully) or am I just delaying the 'inevitable' steroids unnecessarily? Thank you. I find this forum so very helpful.

13 Replies

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  • Hi Debbie,

    If it is PMR for sure, then even though it seems mild, unfortunately it is unlikely to burn itself out shortly. Minimum is around 2 years, but for most it lasts about 4 years.

    It may be in early stages at the moment, and if that's the case then it obviously could get worse at time goes by if left untreated. That's what usually happens, because many people take a long time to get diagnosed - for various reasons.

    The GP is obviously not sure it is PMR, so would suggest you continue as he suggests, but keep,some notes on any symptoms that may help him make a positive (or hopefully negative) diagnosis on your next visit.

    Sure you'll be back to let us know!

  • If you haven't had any blood work done, I'd suggest having it checked. Otherwise - I was undiagnosed for 6 months and just managing with naproxen (Aleve). The doctor had a fit at how long I had been taking it and insisted I come off to protect my stomach. Once I stopped nothing could get the inflauunder control again except the prednisone and left me with a sensitive stomach for quite awhile. Good luck!

  • That's how my PMR started and it "grew" over the following year and then remained at a similar sort of level for the next 4 years. Then I had a major flare and was almost unable to get out of bed. Since my blood markers were in single figures the entire time, my ESR has never been above 7, the GP claimed to be mystified. Ibuprofen did me no good at all except to take a slight edge off the pain and possibly did help the bursitis in my hips marginally but that progressed until, in combination with the flare and having moved house where I had to do stairs far more as there was only one toilet, upstairs. I was pretty much housebound for a few months. I realised I had got to the stage where I could only go somewhere if I could drive. It was about 400 yards, if that, to the shops, I could barely manage that and if I did, i was in bed for the rest of the day. 15mg pred got me back to nearly normal in under 6 hours - which is just as well, because after 13 years, PMR is still with me. It does happen, 2 years is the case for maybe a quarter of patient, about half take 4-5 years and some of us even longer. There is no way of knowing which you are at the outset - it obviously isn't having low blood markers as at least 2 of us with longterm PMR had/have low normal levels.

    Don't be misled though - it isn't a case of pred is bad, no pred is good. There is unmanaged inflammation coursing through your body and doing damage to blood vessels which increases the risk of peripheral vascular and cardiovascular disease and even increases the risk of some cancers. And NSAIDs are not innocent sweeties either despite being available OTC - they are not good for heart and kidneys, not to mention irritating the stomach.

  • I hate to say this, but I think you should bite the bullet and go with the steroids. I had no idea I had PMR for well over a year, and used to find some relief when I'd take aspirin for headache, but was not medicating for the chronic pain, which I assumed was osteoarthritis. It got worse and worse over the months. It's possible that had I known what was going on I might have been able to employ some other strategies to reduce inflammation, but I have a theory that once PMR has taken hold there are, at present, no strategies to deal with the inflammation other than steroids, and all I would have been able to do would be to delay the inevitable. Now I look to the future. If my PMR goes into remission I'm hopeful I'll be able to prevent a recurrence by employing those other strategies (mostly to do with diet and stress avoidance). Meanwhile I take my pred every morning and am pretty comfortable, especially now at a low dose.

    I would, however, caution you that if you take steroids and get rapid and mostly complete relief, do not be tempted to think that because you have so far had a relatively mild case you will be cured, and able to stop the steroids quickly. You should still taper very slowly, and perhaps be content to stay with a small dose, as I am, for as long as it takes for the PMR to enter natural remission. Steroids are indeed a miracle drug, but they need to be used the right way, carefully, and tapered extremely slowly.

  • Hi

    Thank you very much for that. Have you had any side-effects from the steroids?

  • Debbie, I am mostly side effect free now, and apart from recovering from adrenal fatigue have been so for a year or so. But I had some pretty serious effects at the beginning - increased ocular pressure, not quite glaucoma, high blood sugar - not quite diabetic and controlled once I knew by virtually eliminating certain foods, pred also probably contributed to bone thinning - dealt with through diet and exercise, and, less important, some of those red bruises some people get, but at least my skin didn't break as I think happens to some. I didn't gain any weight, but I lost muscle mass and am not as strong as I was before, which as I have never been particularly strong is rather unfortunate.

    Having said all that, I was in a condition where I had no choice but to take prednisone, and the positive effect of pain reduction more than outweighs the negatives. I was able to reduce to about 4 mg from 15 within a year, and in the subsequent nine months have got down to 2 mg.

  • If your GP will prescribe you steroids say for a week and you can see if they work. If they do great it is probably PMR, if they do not it may not be PMR. You can stop the steroids immediately if you have only been taking them for a week or so.

  • I agree with the more knowledgeable people here. I managed without Pred for my first encounter with pmr but the amount of painkillers I was taking would have knocked out a horse! It lasted for about 2 years before it seemed to go into remission. Then it came back with a vengeance and this time, much worse. My GP advised a short course of Pred and within 48 hours I was 75% better. She also told me that even though I thought the PMR had gone into remission my blood tests had told her otherwise. In other words she thought I should have had the Pred earlier. Its not an easy journey this and I still have bad days and still not able to work (I do have other conditions too) but I am better with the Pred than I was without. Everyone is different but I no longer see Pred as the enemy :)

  • I am in the same situation as you are. I have been managing what we think is PMR for for years now and it continues to get worse and worse. Unfortunately I have very bad side effects with prednisone and I guess I'll have to get to the point where the PMR is so bad that it's worse than the side effects from the prednisone before I can take it. but mine has been mild and getting worse. I was hoping if I could hold off it might burn itself out before I had to resort to long-term prednisone use. But I will say pain meds do help but I keep having to take more and more to get the same relief. It's definitely a roulette game, but I don't have any hi levels of inflammation in my blood. If you can take the prednisone without bad side effects and it helps I think that's the way to go.

  • jwb43 Do you think you have PMR if pain meds work? PMR tends to only be helped by steroids other pain killers do not work. You may be one of the twenty per cent of people who do not have raised blood markers. On the other hand your blood markers may not be raised because you do not have PMR.

    When you took pred did it help the pain? What was your pred dosage?

  • Perd lowered my pain 70% and stiffness 90% at 15mg but could only stand 2 days of it. Really bad side effects. Pain meds help but as it gets worse not so much anymore. Spread all through my muscles and docs can't agree. Benzodipanes like Lorazapam help the most and releave the pain appx 80% for 24 hours but only works if I take then 3 days apart. And still cannot walk much never mind trying to exercise.

  • I am amazed you had side effects so quickly from the pred at that dose. You must have had an allergy to it. What sort of problems did you get? It does sound as if you have something other than PMR as well though if benzodiazepines help. As they act on the central nervous system. I wonder if you have fibromyalgia?

  • I had muscle weakness, heart palpitations, and nervousness, nausea, shortness of breath, insomnia -- in general lousy all over like I was coming down with a cold. And after I stopped, all my joints hurt for weeks. And they don't usually hurt; usually just the muscles hurt. If it is fibromyalgia, I don't have any of the other symptoms like brain fog or fatigue. I have tons of energy but i can;t do anything to use it up. Also exercise is said to help fibromyalgia and any small use of my muscles makes them hurt extremely for long periods of time, sometimes weeks.

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