confused - is it really pmr?

Hello Beev and welcome to the forum. Yes, your symptoms do sound classic of PMR. As for your mention of difficult turning over in bed, that was one of my symptoms and I still have problems in that area even after 3 years on steroids and now down to 2.5 from 40mgs (a high starting dose because I was also diagnosed with GCA). As for you wondering about seeing a rheumatologist, if you are succesfully reducing the steroids, your ESR and CRP blood test inflammatory markers are normal and you are heppy with your GP, then maybe you don't need to see a rheumatologist, unless, of course, you feel the need for more reassurance re your condition . However, keep coming back to this site as you will find a wealth of information here from people who understand exactly what you are going through.

MrsO

Thanks Mrs O. My ESR went down to 13 but now has gone up to 21 and my GP won't let me reduce Pred because of it - he says he might increase dose next time if it has gone up again - but I have NO symptoms. Do you have any advice on this? Does you ESR stay low even when you have the difficulties you describe?

Also' I'm concerned it might not be PMR because I don't seem to have had the aching other people seem to have - and lethargy etc???

Hello there We do all seem to have slightly different symptoms I have had PMR twice and my first bout I had the classics of pelvis and shoulders but this time it was shoulders and ribcage and back of knees more I dont feel pain when I am stationery only when I move turnover in bed try to bend etc when not on sufficient steroids Also the tiredness comes and goes it is there if I overdo it and then it hits me a bit like a wall and is real exhaustion but I wouldnt say I felt lethargic only bored when I have to rest too much !! Both my ESR and CRP have to be under 10 for me to feel OK but I know lots of others cope with much higher markers ( My Dr really likes them to be about 5&7 before she will let me reduce I only initially saw a Rheumatologist when first diagnosed in 2002 and was moniterred by my Dr for the 2 years it took to disappear and I have with this bout (almost 18mths so far only seen my Dr although she did say when I had a flare up she was happy to refer me but I feel I am so well looked after I shall stay with her unless I keep having flare ups If you arent happy with how it is all going ask for a referral and also read up as much as you can as we all feel we learn a lot from this forum

Hi again Beev. In my experience, it isn't so much aching that PMR causes but more of a stiffness in the legs and arms and pain on movement. In answer to your query as to whether my ESR stays low even with some degree of discomfort, yes it can do and the symptoms can also be aggravated by the steroids, especially when tapering. As for the inflammatory markers, some medics say that the ESR should be a figure representing half your age whilst others say it should be below 20. Therefore, a better guide is the CRP blood test which I have always been given alongside the ESR. My blood has been particularly sensitive to both PMR and GCA as the inflammatory markers went sky high (way over 100 in the case of ESR) whereas there are a few sufferers who don't have any raised markers at all and this obviously makes diagnoses and treatment more complicated. So you can see that just as everyone has a variation in their symptoms, they also have differing reactions to the steroids and the course of the disease, hence I would just consider yourself very lucky not to have feelings of lethargy.

I do hope this helps to reassure you but if you still have feelings of uncertainty that it is actually PMR, perhaps you could ask your GP for referral to a rheumatologist for confirmation. Also, perhaps you could ask for that CRP blood test if you haven't already had one.

Very best wishes.

MrsO

Hi beev!

You sound just like I was most of the time - it's so long ago that it started that I can't remember if it came bit by bit as you describe but certainly I had all those signs. Aching only ever happened when I tried to exercise - the first time I really decided there was something wrong was when I went to use the cross-trainer at the gym to get ready for my skiing holiday a couple of months later and I had to stop after a few minutes because my quad muscles felt as if they were going into spasm. The same thing happened once I actually started skiing and I was having to stop every few hundred yards on the slopes! I spent several weeks here in Italy every winter and took a long time each season to get to be able to ski down even a short and easy run in one go, though I did get there eventually. The final straw came when I was not allowed to drive and moved house at the same time so I was up and down stairs because there was only one loo upstairs, no dishwasher and I was having to walk everywhere I went. THEN I had more aching and far worse joint pain than ever before.

And to confuse matters my ESR and CRP have never been found to be high (ESR is 4, I'm 57, and the CRP is absolutely in normal limits - so no-one can use them to guide steroid tapering. I do that myself on the basis of signs and symptoms with the Dr's blessing. I used to be tired but in my case the lethagy bit was much more an aspect of the depressive mood that accompanied the trapped feeling that came with not being able to do anything as usual - wasn't a problem as long as I could get out by using the car to get to the gym and do aqua aerobics!

best of luck, Eileen

Hi Eileen H, Mrs O and Mrs G

Many thanks for your replies. It really helps to talk about these things.

I am now panicking because my neck suddenly feels swollen at the base in the front in the middle!! Have any of you had this? Is it the beginning of the dreaded Cushing's from the steroids??!! I think I'm going to have to eat some chocolate or drink some more red wine .....!

I have not had that CRP test - only ESR.

Mrs O, Have you still got side-effects on 2.5 mgs and did you before and after how long on pred did they kick in??

Mrs G and Eileen, what dose are you on now and how are you for side-effects?

When did you start PMR Eileen? I'm 58 now and thought that was a bit too young for it.

I keep changing my mind about asking to see Rheumatologist - don't want to spoil doc/ patient relationship etc..

Isn't it odd how you can't remember being in pain when you havent had any pain for several weeks? Or is that just me?! I feel like maybe I was imagining it and if I came off the steroids I would find it had gone.

Hope you have a good weekend

Beev

Hi Beev

I should have said I was on 2mg not 2.5mgs (senior moment) :?

No, I don't believe I have many side effects remaining as such from the steroids, for instance the moon face shape has now gone but I still have the tummy fat. The moon face appeared very quickly after commencing steroids. I only gained a few pounds but I still have to watch what I eat or the weight would still increase quite easily. Sometimes it can be difficult to tell the difference between the side effects of the steroids, the symptoms of lingering PMR and the adrenal suppression.

Your neck swelling could be related to the steroids if you started taking them quite recently, but, if not, perhaps it's worth having your thyroid checked by the GP.

Take care,

MrsO

Hi Beev!

Side-effects: I had one very positive one! For months I'd been craving carbs during the afternoon - you know the feeling, you want something but you don't know what, so you try a bit of everything! That disappeared within a day or so of starting steroids. I could eat a moderate sized meal and was perfectly satisfied until the next mealtime. Some people go off food quite badly (my daughter has no appetite at all).

I felt quite bouncy on 15mg the first time (the consultant who didn't/doesn't think it's PMR put me on a 6 week course of steroids until the follow-up appt) but that may well have been due to the fact that suddenly nothing hurt and being able to walk up and down stairs was quite an exciting experience! At the end of the 6 weeks when the symptoms returned within 48 hours of stopping, I went back to 15mg for a month or so before starting to reduce slowly and that bouncy sensation wasn't so obvious. That was the middle of last August.

A month or so ago I noticed fine hair growth on my cheeks but that has actually almost disappeared already. Whilst I had PMR symptoms my nails were in a terrible state - splitting badly - and within a couple of months of starting steroids they were much better and now are totally back to normal. Other than that there is nothing I might have suspected was steroidal side-effects. The weight gain was more beforehand from inactivity and stuffing my face every afternoon! There was a little bit of extra spare tyre for a while but I honestly couldn't say it was definitely weight gain from steroids.

As MrsO has said, some of the side-effects from steroids are similar to things some people feel with PMR so it's sometimes difficult to know which it is! But the bottom line is: everyone is different and you may well be the one who has NO side-effects. You only find out by trying.

I had definitely had the \"PMR syndrome\" for nearly 5 years before I was diagnosed - shoulder and hip girdle stiffness, muscle pain, especially in the major muscle groups (quads and biceps), joint pain, tiredness, difficulty getting out of a chair and climbing stairs (did those on all fours in the afternoon) but it was never continuously the same level of awfullness until January 2009 and I was able to manage it reasonably well by dependence on the car to get around and only doing what I wanted to do, as little housework as possible and using combinations of ibruprofen and alternative physical therapies (expensive!). I did aqua aerobics, Pilates and Iengya yoga (that's not the right spelling but it sounds OK!) which all helped a lot with the muscle stiffness.

I'm 57 now so must have been just 52 when it first started. I got the \"too young\" from the consultant but I'd already done a lot of research and had found papers from groups in Italy and Hungary which said that it does present in younger people but they are atypical in terms of the blood picture and the clinical picture (i.e. the history and signs and symptoms) is more important. The name PMR just means \"lots of painful muscles\" which is what the patients mainly complain of but there are other things including tenosynovitis (housemaids knee is an example) and MRI and CT scans have shown these effects in joints, especially the shoulders and smaller ones in the hands, for example. I'd seen another rheumatologist (much more experienced) early on but the assumption was early osteoarthritis as I had a couple of swollen finger joints (in my forefingers) and one knee was painful and a bit \"sticky\". The knee had improved a lot with a highish dose of glucosamine (recommended by the rheumy) but I have almost no problem with it at all on steroids other than the fact it is a bit bashed after a skiing accident 16 years ago which was assumed to be the reason for the arthritis developing in the first place!

I'm now down to 7mg a day and about to try reducing again. I'd been down to 5mg last November with a few niggles but

Hi Beev

I am on 12.5 mg at present Just started reducing last week This is my second time with PMR and the first time I started on 15mg also The first time I ever took them I was totally hyperactive for a while Had real trouble sleeping and seemed to go from flat out to exhaustion in an instant !!( from the lack of sleep ) This diminished with the dose I have had weight gain both times I am sure a lot of it is due to inactivity I dont think I ever got a moon face as I have a round face anyway Face did seem to havr a bit of extra hair but nothing too dramatic !! Blood pressure first time round was 120/70 which was great for a 54/56 year old !! This time it is more to higher end of normal but I am now almost 62 Never had a problem with diabetes So nothing I could really relate to steroids Before Xmas I was on 4mg and going to aerobics and fairly active but since having a flare up in early Jan in the cold spell and having to go up to 15mg I have had to give up the exercise and my muscles feel really weak Legs are fine but arms ache if I do too much Worse problem is getting really fed up with the things I cant do !!

Just a quickie

Eileen

visit www.pmr-gca-northeast.org.uk

click on Useful Information - scroll down to \"Steroids and what they do\"

A narrative written by a patient for patients.

A starter for 10 in your research perhaps?

And its about time you came back to NE and helped us out.

You might also like to contribute to the Our Stories.