Last summer I had a telephone call from my doctors saying that I had PMR, presumably diagnosed from a blood test. I was put on steroids and was repeatedly told that I should reduce my dosage. Trouble is when I tried (and I did try) my aches and pains came back.
A few weeks ago I paid to see a rheumatologist who seemed a bit surprised at what had happened. He explained that steroids are an effective painkiller and there could be something else at work. My bloods indicated that I didn’t have PMR (my doctor later said that I did!). The consultant wrote to my doctor and copied me in. The relevant bit of the letter said:
“I have asked your GP to consider arranging some other investigations to ensure that we are not dealing with any other major problems by arranging a check of RF, uric acid, CK levels and also x-rays in the main to rule out significant hip and knee osteoarthritis”
I understand the x-ray bit but the rest is meaningless? I’m have x-rays and tests over the next two weeks. If I don’t have PMR what is the most likely alternative (s).
Written by
InTheMoors
To view profiles and participate in discussions please or .
There are quite a few things that could give the same problems, such as vitamin D deficiency, rheumatoid arthritis, even cancer, although not very likely.
I wish I could understand this fixation that "pred is a great pain killler" - yes, if the pain is due to inflammation! And there was obviously inflammation there or the pred wouldn't have worked in the first place.
And someone (or sometwo) apparently don't understand PMR: pred CURES nothing. It combats the inflammation that causes the symptoms. Having cleared the accumulated stuff out, you taper or titrate the dose to find the LOWEST EFFECTIVE DOSE - you are not reducing the dose relentlessly to zero, you are finding a lower dose that is still just enough to relieve the symtoms. PMR is a chronic disorder - a few get off pred in a year or so but a study I read today claimed 25% still require pred at 5 years - and I'd say that could be an underestimate. And it is possible to have PMR with blood markers that are in the "normal range" - up to about 20% of patients come into that category.
Anyway: RF is rheumatoid factor, often raised in inflammatory arthritis but sometimes it isn't and healthy people can have a positive result. Uric acid will be raised if you have gout. CK, or creatine kinase, is an enzyme that is raised in myositis, a disorder that involves inflamed muscles. It is normal in PMR so that test differentiates between then since they can have similar symptoms - and both respond to pred.
Personally - PMR remains a potential answer to your symptoms but at least they are now doing what should have been done at the outset and ruling out the other possbilities. There is no specific test for PMR - so it is a diagnosis of exclusion, exclude the rest and see what is left.
Before I was diagnosed, I was checked out for everything else. The diagnosis is, I understand, one of exclusion. If it isn't anything else then it is (most probably) PMR. The X-ray was looking for cancer, the radiologist was told to look for "malignant lesions" in my painful shoulder. Prostate cancer secondaries often show up in the shoulder blade. As for the rest of the tests, I haven't a clue, but there were lots of them...good luck!
You don't say when the blood test was taken that indicated you don't have PMR. If you were on Pred at the time and it was working, then I think I am correct in saying that your bloods would probably appear'normal' because that's what the Pred does.
And someone (or sometwo) apparently don't understand PMR: pred CURES nothing. It combats the inflammation that causes the symptoms. Having cleared the accumulated stuff out, you taper or titrate the dose to find the LOWEST EFFECTIVE DOSE - you are not reducing the dose relentlessly to zero, you are finding a lower dose that is still just enough to relieve the symtoms.
The consultant just advised on reducing my dosage (10mg a day) and didn't give any target to reach. The consultant wants to check that I don't have anything else.
My doctor said that I had been on prednisolone for a long time (about nine months). I've read a lot on here about people being on prednisolone (or similar) for years.
I was on 10 mg a day which I was quite comfortable with. I have now reduced this to 9 mg. and will shortly be reducing it to 8mg. If I do get a 'flair up' of whatever I have I take a painkiller and have been prescribed Co-codamol 15/500. I don't take many of these as I believe they can become quite addictive.
Not surprised - but it is different if the consultant wants you off pred altogether so they can see your illness in all its glory. To be at 10mg after 9 months and less causes a return of symptoms is really not uncommon - PMR does NOT go away in a year except for maybe fewer than 1 in 5 who are very lucky. For the vast majority it lasts a lot longer and there is loads of evidence in the literature to show that.
"If I do get a 'flair up' of whatever I have I take a painkiller and have been prescribed Co-codamol 15/500"
And if it IS PMR you have, then neither Cocodamol nor any other painkiller will touch it! There are other causes of the symptoms and it is said that at least 30-50% of patients diagnosed by GPs have the wrong diagnosis - but equally, 30-70% DO have the right diagnosis.
I did send this in your firstpost... maybe have a re-read of the links - they might make a bit more sense a little way into you PMR-healthunlocked.com/pmrgcauk...
.. and whilst painkillers might help with steroid withdrawal, they rarely help in a flare.. another link [sorry] -and would suggest tapering by only 0.5mg a time rather than 1mg [1mg plain tablets cam be cut with a pill cutter - available at pharmacies, some larger supermarkets and online..
There are a couple of things I'd like to say about your post.
1. You wrote, "My doctor said that I had been on prednisolone for a long time (about nine months). I've read a lot on here about people being on prednisolone (or similar) for years."
I've personally been on Prednisolone since July 2010 (so nearly 15 years!), and I doubt if I'll ever be off it. I'm currently at a dose of 4mg per day, and although I did reduce to 3mg per day for over a year, I found that adrenal insufficiency slowly got the better of me. So now I'm back at 4mg per day, and staying there, as the 4mg of Pred gives me a quality of life that slowly disappeared at 3mg per day.
2. Regarding Co-codamol. I have chronic back problems that I've had ever since I was 21 (I'm currently 74) and regularly take codeine tablets that are 12.8/500 to ease the pain. However, if I don't need them I don't take them, so I would say that they aren't addictive for me.
I read a few years ago about a large scale survey that took place a while ago, to find out more about the addictiveness of Codeine, and it was discovered that people who take them for headaches did indeed become addicted, often quite quickly, whereas people who took them for back pain rarely became addicted.
I know well that we are all different. I was on pred for nearly eight years with PMR, without having a single flare in all that time.
My practise for tapering was never to drop by more than 10% of the dose I was on, and never to reduce dose if I was aware of any PMR symptoms. I frequently stayed on the same dose for eight weeks or more. Yes, it took a long time, and yes, it took a lot of patience, but I was able to enjoy a reasonable quality of life, including walking on the moors and up the fells in Cumbria.
Fortunately, I was allowed by my GP to regulate my own tapering, and basically followed the excellent advice from this forum.
Thanks for all the posts. It helps reading the advice and experiences of others.
DL, that suggestion of a pill splitter is excellent. One is coming tomorrow via Amazon along with some painkillers (aka white wine 😊). I think that I’ll go down to 8.5 mg instead of 8 mg.
The only two professionals that I’ve seen want me to reduce my dosage but don’t say what to. The doctor in particular says that I’ve been on steroids for a ‘long time’, implying that I should be off them by now.
The main problems seem to be in my hips and knees. I see a physiotherapist ever week and have done so for the last twenty years. He is concentrating on my lower back and hips to keep them free.
The Co-codamol does help with the pain so there might be something else going on as the consultant suspected. The x-rays and additional tests might throw a bit more light on the matter.
I have been diagnosed with PMR since 2016 and am now down to 1mg After a few failures. But thanks to this site and my GP letting me reduce as per this site I am hopeful of getting down lower.
I have a pill cutter and at the moment I am cutting the 1mg into 2or 4 pieces so I can go to 3/4 mg using the DSNS .its a bit fiddly but worth it.
I tend to repeat each week twice, so that my reduction is slower.
I’m having a few issues with adrenal hence the slower reduction. But nothing like I used to .x
It’s a slow waiting game but it will be worth the wait I’m sure.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Polymyalgia is it or isn't it
I could have PMR…
Methotrexate 
What should I be doing about tapering prednisolone?
Could this be PMR?
