My dr thinks it's been too long for me to still have PMR. We are trying to find something else it might be. I do think it could be fibromyalgia, but why does it hurt so much when I try to reduce the prednisone? I still take 20 mg and I know it is terrible for me. Already had 2 back fractures and one eye is developing a cataract. I'll take the dead slow method to her to see if we can try that; I should have tried to keep at it long ago, I guess. I am very unwell, using a walker, and hardly keeping up with my life.
Hi Debbie! I can’t remember how long you have been on pred, but 20mg is quite a lot.
I’ve been on pred for 5 1/2 years (down to (4 mg), Eileen has been on it much longer. Drs seem to think PMR will clear within 2 years (if not sooner) - it does for a very few lucky ones, but they really are the exception.
The drs who really know what they are talking about agree that it usually takes between 3 and 6 years.
I often wonder about fibromyalgia, it seems similar to PMR in many ways, pain all over, excessive tiredness, etc. I often feel my illnesses are playing football in my body.😏 On those days I just “give up” and become an invalid till things improve. I’m too ill and tired to fight. Better days always follow.
Constance
Yes, it fluctuates. One day I’m active and okay, the next it’s all an effort, fatigue cuts in and simple tasks become a battle. But you’re right it does change back!
Like Constance, I can't remember how long you have had it. I have had PMR for 14 years and no-one here argues it isn't (except it is probably GCA/LVV presenting as mainly PMR.
Ask your doctor if they have seen this recent article:
The spectrum of giant cell arteritis and polymyalgia rheumatica: revisiting the concept of the disease Christian Dejaco Christina Duftner Frank Buttgereit Eric L. Matteson Bhaskar Dasgupta
Rheumatology, Volume 56, Issue 4, 1 April 2017, Pages 506–515,
and ask where they think you might be on the spectrum - if it is PMR/LVV/GCA.
Five per cent of patients have PMR for life - described as refractory PMR. Only about a quarter are able to get off pred in 2 years or less, half need 4 to 6 years. An Italian study found a third of patients still need pred after 6 years. Patients who have PMR symptoms as a result of unidentified large vessel vasculitis (LVV) are likely to need more pred.
If pred relieves the symptoms - it is highly unlikely to be fibro. That's a lazy get-out. There are forms of inflammatory arthritis that can mimic PMR - and they tend to respond to higher doses of steroid and then the symptoms return if you try to reduce it. Then trying DMARDs as steroid-sparers may help so they are worth trying. If you have had spinal fractures they presumably have ruled out ankylosing spondylitis which is one that can mimic PMR.
Has your doctor tried different corticosteroids? I've just told my steroid story elsewhere: I was fine on under 10mg prednisolone, both ordinary and enteric coated, until I got a new batch of 5mg enteric coated pills which presumably had different ingredients - I didn't absorb them and had a flare every time I tried using them. I was switched to Medrol as the only option here and even 20mg did nothing except cause severe side efects including steroid myopathy. Switching to Lodotra/Rayos, a form of prednisone, resulted on the first day in the same miraculous reduction in symptoms I'd had originally and I was able to reduce to under 5mg before a flare sent me back to 15mg, now I'm back to 7mg. So oral Medrol didn't work for me (an infusion given for something else DID so it does appear to be an absorption problem), prednisone and prednisolone do work.
You are in the USA - so Actemra may be an option.
It isn't just a case of "is it something else?" although that has to be a question. It is also "am I on the right medication for ME?"
Darn, I wrote a long reply, but it disappeared. I'll come back in a little while--
My GP is certain I don't have PMR and he took me of prednisolone at the end of November after only a year on it. I'm in agony, getting thinner by the day, can hardly move and have had to press him to refer me back to the Rheumatologist. 've pressed him to refer me to just about any consultant who I think may be able to help and have the first appointment - with a gastroenterologist - this week. I've had the cataracts as well seems the steroid brings them on. Could PMR change to Fibromyalgia or do you think it was a mistaken diagnosis? My daughter has fibromyalgia but she doesn't get as tired as me, nor is she anywhere near as weak. I'm in constant pain and very, very weak.
can't believe it posted a reply but its disappeared so I'll try again. My GP doesn't believe I've still got it and took me off prednisolone at the end of November, less than a year after I was diagnosed and I've had to press him to refer me back to the rheumatologist. In fact I've pressed him to refer me to just about any consultant who I think might help me. I've the first appointment this week with a gastroenterologist because I' so thin and weak, can hardly eat or move. Can PMR change to Fibromyalgia or do you think it was a mistaken diagnosis. My daughter has Fibromyalgia and she's not weak and has a good appetite, she does find it difficult to move about and is on strong painkillers all the time but can still work and enjoy life.
Did the pred help your pain? Were you given time to come off pred slowly so at least you minimized problems with adrenal function?
Did pred relieve your symptoms when you were on enough? If so - it wasn't fibro.
And when you reduced and stopped - how did you do it? From 7mg down, were you allowed to reduce very slowly to be sure your adrenal function was returning?
And WHY does your GP disagree with a PMR diagnosis?
Tell me about it! I saw Dr Hughes in October last year and he thought I had a possible Lupus/RA/PMR combo, then I saw his registrar last week and he thinks it's more likely to be PMR (he agrees that the hands can be involved). I'm 17 months into this "condition" and the doctors are still dancing around trying to agree on a diagnosis...
Eileen thank you for the helpful post. Also you other posters sharing your experiences. I'll show the dr that title of the article; maybe she will read it. She wanted me to have three things done, and I just can't do them - a test on the veins or something like that in my shoulders, an MRI on my neck and one on my shoulders. I just don't want to do them because I don't think they will show anything wrong.
If I reduce the pred. even 2.5 I start to ache with pain in hips, legs, back, shoulders. This is why I take 20mg. I'm just curious how I would feel if I took 30mg for a couple of days, just to see if I felt much better or not. What do you think?
I probably shouldn't, as I don't want to get caught at that high dose and then have too hard a time going done again.
My dr thinks I've had PMR too long, so that it shouldn't be Pmr anymore. My SED rate is always 40 or above, sometimes way above like 120.
Debbie, I looked back quickly at some of your earlier posts. It appears that you are a longtime fibro sufferer and about three years you got an additional diagnosis of PMR? You had elevated inflammation marker at that time? Is that right? Did you ever get proper relief of the PMR pain from prednisone?
It's possible for PMR to last quite a few years, usually not more than six although it can be longer. Most people are not better within two years, but some are, and it seems doctors focus on that lower time length. But if pred has never properly relieved your symptoms there may be something else going on, or the PMR diagnosis might have been wrong.
Another I stated on steroid just before xmas 2016 - 25mg was whizzed down in a month to15mg then apart from a couple of times when I stayed on the dosage for two months whizzed me down to by 1mg per month so I finished taking it at the end of last November. I sent the Bristol papers you told me about though and saw him last week and he now admits he might have been doing the bloods too soon after I dropped, so did them again last week to check inflammation and has done as I asked and referred me back to the rheumatologist. Also is consulting with another GP I've never seen so she has no preconceptions about my case. I've to ring tomorrow for result of tests.
Hi Eileen see my answers to Anhaga.Must say though that it's thanks to this forum and the guidance I got I think from you about the Bristol papers that has got my GP moving. I printed them out, highlighting various parts and emailed them through to him with a request to be referred back to the rheumatologist and when I saw him last week the referral was already in. Plus my son and daughter had been on to him about it also having read the paper so hopefully I won't have to wait too long for an appointment. And yes within two days of going on prednisolone the pain disappeared.
If your sed rate is that high, the pred doesn't really relieve the pain and you can't reduce - they are all signs this isn't PMR as Anhaga has said already. It coud be GCA, it could be something else.
Why "can't" you do the tests? The shoulder thing sounds as if it could be ultrasound on the arteries in that area and the joint - it's not a big deal. MRI is a bit loud but doesn't hurt or require you to anything besides lie there for a short time - I've had a few on various parts of my body, You, as a non-medically qualified person, can't say you don't think they will show anything - they might not, but that not only rules out possibilites for the cause as well as them confirming something is there when they find it. Your doctor is trying - you have to buy the lotto ticket before you can win it.
But it has taken her a long time to come round to that idea - nothing to do with the length of time which ISN'T a real justification, about half of people have PMR for more than 4 or 5 years. I think I would be seeking another opinion
" within two days of going on prednisolone the pain disappeared."
Then whatever it was/is it isn't fibro. If you have lost a lot of weight - he may be messing about with GCA causing the PMR symptoms. Show your GP this paper that I recommended to Debbie - you can google it and it is free to read:
The spectrum of giant cell arteritis and polymyalgia rheumatica: revisiting the concept of the disease by Christian Dejaco Christina Duftner Frank Buttgereit Eric L. Matteson Bhaskar Dasgupta
He needs educating about the faces of PMR/GCA - like a lot of others.
Great that you've got a supportive son and daughter!
But the prednisone DOES help me and it lowers my SED rate. I guess I didn't make that clear. I think maybe my fibromyalgia is hurting me, too, and not affected by what I take pill-wise. I've tried the fibro pills which helped for a week or so until they made me so much more depressed that I had to stop them. Your question about an additional diagnosis of pmr probably refers to the year I had pneumonia so the SED rate went up really high, and that's when I went up again to 20mg and haven't been able to get below 15 since. I went from 15 to 20 about a year ago due to the 120 SED rate. It then went down to 40something SED. Thank you for your reply.
I know you are right about taking the tests. I've just been tested so much and spent this past year being in hospital with back fractures that I am so tired of it all. I will probably get back to being responsible soon. Please read my reply to Anhaga, too. Thanks EileenH!