PMR or NOT

Welcome to the site and our community of friends - whether you have PMR or not we will try to point you in the right direction.

If you have been told you do not have PMR but you still have those high blood results and pain then you need thorough investigation - and it sounds as if that wasn't done at the beginning.

PMR is something called a "diagnosis of exclusion" - you have a patient with a set of clinical signs and symptoms and they look like PMR but they could also be several other things. When you have ruled out the others, then you can say, well OK, it is quite likely to be PMR. Then, the next step is to try the patient on a dose of about 15 to 20mg per day of prednisolone. If there is a big and speedy improvement of those symptoms - about 70% within a couple of weeks but it is sometimes in hours - then it is very likely to be PMR. If you weren't considerably improved at 30mg then it is likely it was not PMR - or at least, not typical PMR. Some doctors will try the pred approach earlier on - they were taught by rheumatologists that dramatic improvement = probably PMR. It is now beginning to be thought that isn't always so but it is a reasonable rule of thumb - if you are able to function and have a lot less pain that alone is a good start to allow a search for other causes if necessary. And there are patients who do not respond to prednisolone.

You say you have been told it isn't. Who diagnosed you in the first place and who has said it isn't PMR? Have you been referred to a rheumatologist? Were you better on the pred than you are now? Being on pred doesn't always mean 100% freedom from pain - some GPs appear to think so. Did you manage to reduce the dose at all? If so, what sort of size steps were the reductions? We know that some patients are unable to reduce by more than 1mg at a time - even from the 25mg level. One lady reduced from 20mg in larger steps as instructed by her GP and was very soon worse than at the start. When she came here and it was suggested she reduce much more slowly, 1mg at a time, she managed to get down to 6mg quite successfully. And a cheeky question - do you mind me asking how old you are? Because that is relevant too.

There are other rheumatic diseases that look very like PMR - if you have one of those, then you need to be seen by a rheumatology expert. They may decide it is PMR after all but not the usual sort of presentation - but they may find something else to account for the problems. Whatever the situation, you need to see the right consultant.

If you answer my questions in a bit more detail we may be able between us to give you a few pointers as to what to try next. Because there is something wrong and it needs sorting out.

all the best,

Eileen

Thankyou for responding. I was put on 20mg to start with but this didn't make very much improvement then went up to 30mg a little better for the first few days but then it was as if my body got used to it, I was referred to a specialist who last October said it was PMR told me to do as he said and stay on 15mg and he would see me again in Feb this year he assured me I would be like a new person when I saw him in Feb I was worse I also told him just before christmas I has cystitus and was prescribed Nitrofurition after four days my pain in my muscles was 90% better I carried on improving until four days after antibiotics finished I then returned to the pain. I tried the Nitrofurition again in Jan worked a little but not as well as the first time. Rhumatoidologist said is was not PMR and maybe bacterial but nobody can help. I am 55 years old. I am now down to 5mg every other day of prednisolone only four more tabs to take and I am definately worse, I have had a CT scan all clear apart from fatty deposists at tail end of pancreas my GP said this may be caused by the steroids, I have had blood tests for Lyme disease but each time they come back negative. I have also been told that Steroids can cause muscle pain.

Thankyou for responding. I was put on 20mg to start with but this didn't make very much improvement then went up to 30mg a little better for the first few days but then it was as if my body got used to it, I was referred to a specialist who last October said it was PMR told me to do as he said and stay on 15mg and he would see me again in Feb this year he assured me I would be like a new person when I saw him in Feb I was worse I also told him just before christmas I has cystitus and was prescribed Nitrofurition after four days my pain in my muscles was 90% better I carried on improving until four days after antibiotics finished I then returned to the pain. I tried the Nitrofurition again in Jan worked a little but not as well as the first time. Rhumatoidologist said is was not PMR and maybe bacterial but nobody can help. I am 55 years old. I am now down to 5mg every other day of prednisolone only four more tabs to take and I am definately worse, I have had a CT scan all clear apart from fatty deposists at tail end of pancreas my GP said this may be caused by the steroids, I have had blood tests for Lyme disease but each time they come back negative. I have also been told that Steroids can cause muscle pain.

The only thing I can tell you is that a colleague of my husband's told me the following story:

A few years ago his wife demonstrated exactly the same sort of thing as you have described. In her early 50s, she developed symptoms which were very typical of PMR and was treated with steroids. She also needed a very high dose to keep the symptoms under any sort of control and after a few months developed Cushing's syndrome - all the worst side-effects of pred. - and became very ill. They had to stop the pred as a result and she was bed-bound. He is a doctor and he got together with colleagues in endocrinolgy and rheumatology and they searched for clues inthe medical literature. Eventually they decided to try antibiotics as there are a few reports in the medical literature of this having a good effect. I'm afraid I don't know which antibiotics they tried - but they found one which worked and after several months of treatment all the symptoms had gone. They have not returned as far as I know and when I last saw her she looked as I have always known her and well.

Steroids can cause muscle pain - but not usually like you have suffered but anything is possible! There are a number of autoimmune based illnesses which cause a variety of symptoms which resemble what you describe but don't necessarily respond to steroids and it is well known that they are difficult to identify and even more difficult to treat, many patients trek from doctor to doctor before someone has a brainwave.

Are you on any other drugs? There are some where muscle pain is an unusual side-effect and this is even more common if you are on a few medications where there can be unusual interactions.

I'm so sorry I can't offer any real help - is noone prepared to try antibiotics over an extended period to see if they can find something that replicates the effect you had the first time with the cystitis? I have heard of others with PMR who say they have felt better after a course of antibiotics but most people probably consider it to be coincidence. I do hope that someone can come up with an answer of some sort for you. Taking pred for years is bad enough - but it does at least allow some sort of relatively normal life.

wishing you all the best - and if they find an answer do please come and tell us here

Eileen

It occurs to me - do your doctors actually realise that false negatives are common in Lyme disease? Is it the same in the UK as in the US where it is a double test and the second bit is only done if the first bit is positive? I understand Lyme disease should be a clinical diagnosis because of the risk of false negatives in anything up to 30% of cases. REally would seem to be an option worth considering.

Eileen

And as soon as I switched off the computer and went to bed last night I realised another option that may not have been looked at is vitamin D deficiency. If you have very low levels of vitamin it can cause symptoms almost identical to PMR and steroids do not help. I will grant you that it should also not be accomanied by very high CRP and gamma GT - but it could be more than one thing in combination.

MrsK who also posts on this forum developed severe muscle pain and it was at first thought she had PMR in addition to the original diagnosis of GCA. However, after a lot of literature research she approached her GP who checked her vit D level which was found to be low. Her consultant approved the prescription of very high dose Dekristol, which has to be sourced from Germany, and within a short time the pain improved. And when I say very high dose - she was on 20,000 units twice a day for a few weeks, far far more than the calcium/vit D supplements we get routinely when taking steroids. The pain returned after the course was stopped and it has now been decided she needs a booster every several months. Her local health authority has recently increased the vit D level that it accepts as being adequate to a much higher level than it was, from somewhere around 20ng/ml being acceptable to around 80 ng/ml or even more (if I remember rightly). Different health authorities have different criteria - but low levels can cause excruciating muscular pain.

Whatever any doctor tries to tell you, we do not get enough from sun exposure when we live north of Turin in Italy and use sun screens and our diet has very little vit D - unless you eat at least half a pound of certain oily fish every day, 17 eggs or a couple of kilos of mushrooms which have been exposed to the sun. I know some doctors dismiss the current obsession with vit D as a fashion but there is sound backing to my suggestion. It is worth a try - it is possible to boost your levels with OTC vit D, it takes months to achieve good levels though. But getting the test would provide one answer.

Eileen

hi i cant add any more to eileens cotribution ,except to say keep coming back to us with any more results etc and dont let it carry re pain control ,pain is pain what ever the cause so demand attention good luck its very unsettling when consultants shift the goal posts carolk

Thankyou very much Eileen and Carol for your time in responding. I have taken a vit D supplememnt for the last couple of years as I kept getting regular colds since taking 25iug a day I have not had a cold in the two years. I have seen another doctor this morning who prescribed an anti-inflammatory which I took at 10.30am and by 1pm needed my inhaler as made my chest very tight and wheezy she thought I may noy be able to take as I am asthmatic and allergic to asprin. I have been given stronger pain relief and now being referred to Dr Mark Wansborough-Jones at St Georges as he specialises in infectious diseases. I really do appreciate your time and when I see my GP next week I will mention the Vit D Thank you Elaine

Ooh - have I read this right - get your name changed! Far too many Eileens and Elaines with one of these bizarre diseases!! Must be a link ;-) Or were you just thanking me? Pred brain hits again.

Do please let us know how you get on with this latest referral because I'm really interested now - I love gory details. What did your doc prescribe? Not brufen I hope - honestly, NSAIDs plus asthma = not good. I'm a bit sensitive about such things at the moment as I've been on crutches for the last 5 weeks: I was given an antibiotic which can cause inflammation of the tendons, particularly the achilles. In combination with pred it is even more likely. It happened. If struggling around with PMR wasn't bad enough - this on top!

How long might you have to wait to get to St G's?

Eileen

good luck when you see consultant ,make sure they flag up your reaction to the pain killer important everyone knows you had an allergic reaction to i presume a nsaid .come back to us when you know more but do not put up with bad pain carolk