Just some advice from anyone that may know. A friend of mine was diagnosed with Fibro years ago. However, she is in so much pain and taking so many painkillers she asked me whether anyone on our Forum knows if Prednisone would help her too. I imagine her doctor will tell her no it doesn't help with Fibro. I thought I read a post the other day from a lady who suffered both PMR and Fibro, so naturally steroids were helping her. I guess there is no harm in taking maybe the starting dose of 15 mg prescribed for PMR for a month then reduce slowly to see if she does in fact get some relief.
What are your thoughts that I could pass onto her.
It’s a tricky one. No, Pred wouldn’t be prescribed because Fibro is not thought to be an inflammatory illness. If however, there might be some muscle pain and stiffness due to PMR and a trial with Pred might be a good idea. Worth asking. I’ve had Fibro on and off for years and it is totally linked to poor sleep and my body being at a low ebb. If some other condition is preventing good sleep, it may be triggering Fribro. Withdrawal from Pred after a dose reduction often triggered it. I assumed it was due to Fibro because although there could be bad pain, there was no loss of function whatsoever. It is sometimes difficult to persuade a doc that a long standing condition may have morphed into something else or be hiding it.
I suspect a lot of people are wandering around with a diagnosis of fibro who really have PMR because some of the symptoms do overlap and GP know they can get rid of patients - there is no real management for fibro so no point going back to the doctor.
Fibro is not an inflammatory disorder like PMR so the ESR and CRP will not be raised although some people have PMR with low blood markers. The only real differentiation would be to try a week of pred and see if it improves the symptoms at all. It is possible to have both at the same time and the people who do have both say they can tell the difference since they had one and then the other developed.
I'd agree with PMRPro - not just now but always come to think of it! Your friend could ask their GP to prescribe a short course of say 15-20 Pred for a week to test if it is PMR - there would be no harm done, in fact it would be a key part of the investigation because if you do respond then it probably is PMR, or at least PMR being part of the picture.
Hi, I was diagnosed with Fibromyalgia years before my Ploymyalgia diagnosis. The difference was the sudden onset of pain mainly in t(e hips and shoulders to the point I just couldn’t get out of bed. Have there been any changes in your friends condition such as more centred pain? I gues they could query this with their dodctor and ask if a blood test could be taken to check CRP etc?
I was diagnosed with Fibro 10 years ago & diagnosed with Polymyalgia December 2019. The drugs used to help FM are quite different & steroids not amongst them. I did, however, have quite a few bad chest infections 4-5 years ago & ended up on steroids, usually for 3weeks & faster tapering obviously. But they didn’t help my FM at all. The pains & symptoms are quite different in my case. When PMR started last September a host of new symptoms appeared! I’m no expert re Pred but surely the adrenal function will be taken over at 15mg & so quick tapering could be damaging? Think expert answer needed for this, plus she would have to see a doctor to get the Pred anyway? I am on very strong painkillers forFM (& also for residual issues after car crash), but they don’t help when I get a PMR flareup! If she is getting pain other than the pain hotspots than diagnose FM, then it could be something else, obviously! Hope this helps a little! Having both is lousy, one is sufficient & I really couldn’t choose which one I’d ‘like’!
You can take pred for over a month safely if it is done as my first lot was: 2 weeks each of 15, 10 and 5mg and stop. You can take 15mg for up to 10-14 days and just stop without adrenal problems. It is longer term use that brings in the adrenal function factor.
Thanks. That very interesting. I haven’t read up the adrenal function section of life as I’m still trying to taper to 10mg right now, & it’s not applicable...but aiming to slow taper from 10mg down. My GP warned me but would be much slower from now on, S x
I can understand your friend wanting to try anything to get rid of the pain. I will tell you I have fibro, had it years before the PMR, agonising pain at times trying to sit in work. When I was put on pred for the PMR I had no pain at all for a long time until the pred at lower doses. The fibro back I would say worse, or is it that I was used to it being gone for a while. I don't see a doctor giving pred for fibro, and to be honest as much as I know how your friend feels, would I even want it, no I wouldn't. The lower dose doesn't do anything for the pain so she would probably need to be on a decent dose to get any relief. That's just my experience, and I have total sympathy as a long time fibro person. I know there are other meds they use for fibro, it's a matter of finding something that works for you. I really hope she finds what works for her.
Or is it REALLY fibro? Was it actually PMR all along that responded to the higher doses of pred but now you have reduced too far? There are so many overlaps it is very difficult to say which is which since neither has a definitive test other than response to pred. When I started researching what I had I could tick boxes for both fibro and PMR - especially the so-called trigger points in fibro. They coincide with the trigger points in myofascial pain syndrome which is caused by the same inflammatory substances as PMR and is often found alongside it. I also had pain on pressure in other places which is sometimes put down to fibro - but it improved dramatically with pred. What disappears with pred is inflammatory - fibro is not.
Yeah the fibro was diagnosed years ago in my late thirties after ME. I think too once they have the fibro there that's all the medics see. My experience with the onset of PMR being an example. Was in shocking state before doctor bothered to get blood tests. I know what you mean, these pain syndromes are so complex. I mean definitely I did not have all the pain I have now with fibro, wrists, arms, which rheumy insists is NOT PMR pain. I disagree.
So do I disagree, what do they know !! Another friend is in agony now and has been waiting months via NHS to see rheumy. Her doc told her he thinks it's Fibro, but her symptoms point to either Rheumatoid or Polymyalgia. Her appt has come through for 15th July. Feeling so sorry for her with the pain she's in and painkillers and ibuprofen not touching it.
in reply to
In my experience, after 20plus years of fibro is that painkillers- max dose tramadol, co-codamol, ibuprofen and 20mg of amitriptyline...didn't touch PMR pain. Vice versa...pred doesn't help fibro pain. The problem arises when they flare together. That said, the only way I have found fibro pain to be controlled at all is by keeping a good maintenance dose of tramadol. The fibro and nerve pain is being helped by the addition of gabapentin in the past 6months. I am not saying any pain...PMR, fibro or neuropathy have been controlled to zero pain. The lowest I have got is a 5/10 but that's liveable. I don't know if it helps at all! They go on about tender or trigger points for fibro but my PMR pain in my right bicep is where a big veiny thing runs. The fibro is more diffuse but overlaps it.
Quite agree! I forgot to take my Tramadol at lunchtime yesterday & by 4pm I was in truly bad, awful pain, far worse than normal. But Fibro & back injury pain, not PMR shoulders & neck pain! But by 6pm I was wiped out & that happens now I’m tapering to 10mg. I think it’s a case of learning which drug helps what & trying to distinguish between a few different disease causes! Time release Tramadol is the one drug that helps me above all else! Some days I don’t think it’s working...but then I forget a dose & realise how much it does help! S x
Absolutely! When we moved I was asked to try cheaper generic one which I did take for a month but sadly not as effective as Zydol, LOL I even have a brand preference how sad is that?! S x
15 July. Its just a minefield trying to get these things properly diagnosed and treated. Its not easy! I hope that at least they can find a treatment that helps.
Personally I don’t think Steroids are the right treatment for Fibromyalgia. I’ve had FM over 25yrs and was diagnosed with PMR in 2006. Straight away I was put on 15mg Prednisolone and have struggled over the years to reduce to 5mg but always knew it was PMR not FM because my inflammatory markers were always elevated . If they weren’t elevated I knew my pain was due to FM. This helped me to read my body’s response to activity/rest and increased pain levels, which did fluctuate when reducing Prednisolone.
In time, after years of struggling to reduce from 15mg, 10mg, 8mg, 7.5mg, 6mg then 5mg. I adjusted and reached a new balance taking into account the ageing process too. About 3yrs ago I managed to reduce from 5mg prednisolone to 3mg over three months. But when my pain levels and well-being didn’t level out quickly, I stopped on the 3mg daily over a week or so and eventually my body found its new level and I was able to manage FM pain by rest/activity and pain meds, something that can’t be done with PMR. But I didn’t feel confident in reducing Prednisolone any further at that time.
January 2020 I started to reduce once again using the DSNS schedule (Dead Slow Nearly Stop schedule) which I discovered on this website. I made a schedule reducIng to 0mg over 6 months. I was being optimistic as I managed to get down to 1mg daily over 4 1/2 months but at 1mg, my FM started to kick in. I knew it was FM because being careful over a few days with rest/activity and pain meds, the pain levels reduced, which doesn’t happen with PMR. So now I’m staying on 1mg until the beginning of June. I then hope to start a new DSNS schedule over 5 months to the end of November in the hope I can be steroid free by December 2020.
Sorry this has gone on a bit but hoped my experience with PMR and Fibromyalgia might be useful to others with same health problem. Just to be clear, I do take pain medication to help manage Fibromyalgia along with rest and activity. In my experience PMR pain and FM pain must be treated separately but alongside each other which really depends on an individuals self knowledge and experience.
Thank you for that information. I told my friend to join the forum, which I think she's done. Poor girl has been waiting months for the appt. which is scheduled for 15 July to see a rheumatologist. Hope she doesn't have both Fibro and PMR, but guess only blood test will prove that
"Personally I don’t think Steroids are the right treatment for Fibromyalgia"
You are quite right - but it doesn't need to be a personal opinion! Fibro is not an inflammatory disorder like PMR, it is a problem with the perception of pain amongst other thing. Steroids are amongst the most powerful anti-inflammatory drugs there are - they will do nothing in fibro.
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