Dear all.
Hi. I'm 36 & have just been diagnosed with PMR. I'm a teacher in a primary school so am getting up and down all day. I've just had to have 2 days off sick as I just couldn't cope anymore. I'm now on just 10mg pred a day which, after about 3weeks, appears to be doing nothing! Has anyone got any other ways of dealing with the pain/tiredness??
Hallo Pandemonium. We all of us on here know just how you will be feeling. Staywith us because you wil get more useful information from fellow sufferers than anywhere else. However good your GP s/he will be pushed for time and may not have met many or any other PMR patients.
Take time to read through as any of the threads here as you can. They will not all be relevant to you but you will reassure you that you are not alone.
There is a newly formed PMR GCA Charity who have made a video on the subject. There is one lady who posts on here who, I am sure will be along to give you the link. I would give it but am not sure if I would, as she is, be allowed to do so and then my post will be delayed at best or completely lost.
10 mgs does seem a very low starting level. 15 and sometimes 20 is more usual unless you have GCA and then it would be higher. I only have PMR so am not sure aboutGCA except that you shopuld have been warned about the symptoms and act IMMEDIATELY if they occurr. Also, make sure you carry a blue steroid card. Yuor surgery or Boots will supply.
I am a long ago retired nursery and infants teacher and I especially feel for you. Young children are fun but not with PMR. Good luck. BettyE
Hi Pandemonium!
Sorry to have to welcome you to our club! And heavens - I'd hate to be a teacher with this!
Anyhow - if you have been diagnosed with PMR and started on 10mg pred you need to go the northeast pmr-gcauk support site (google that lot to get a link, if I put it in this post it will disappear for ages while they moderate it and still probably won't leave it in!). There, on the right side of the screen, you will find a heading something like \"useful information\" which will lead you to the British Association of Rheumatologists Guidelines for diagnosis and treatment of PMR. Download it and take it to your doctor. There is also an article about steroids - what they do and how to take them and another about living with PMR. The info all comes either from rheumatologists experienced in dealing with and researching in PMR or from patients who have been living with it for a while. It can be trusted.
The reason I say this is because there is no way 10mg is enough at the start for PMR - you start on 15mg and may need to go up a bit if the response isn't good enough. The PMR symptoms should respond dramatically to that dose - they may not disappear altogether but should improve by 50-70% within a few days. If they don't then the diagnosis of PMR needs to be questioned.
Once the inflammation has been controlled with that dose - which is usually allowed a few weeks or so at least, maybe longer - you can start to drop the dose. I found a reference last week where they said that any single drop should never be more than 10% of the current dose. Normally you would look at dropping from one dose to the next and staying on that for at least a few weeks before trying to drop again. The aim is to get to the lowest dose that controls the inflammation and - as a result - the symptoms which make life so difficult. So to get from 15 to 10 should take a couple of months at least - and if the symptoms return, then you should go back to the last dose at which you were comfortable, wait a bit and try again. If you are in pain/stiff etc - you are at too low a dose.
Let me emphasise - you may know this already of you have read a lot of this forum - steroids DO NOT CURE PMR. There is no cure as yet, nor one on the horizon. It is a question of controlling the disease to allow a decent quality of life. There is no point at all of taking steroids at too low a dose to do that. Many doctors, especially GPs, seem scared of steroids and will try to get you off them asasp. In that case - why start them in the first place? I won't deny the fact that steroids are not sweeties - they are powerful drugs and need to be treated with respect. However - they are no way as bad as they are painted by many people and if the alternative is to have to sit at home, in pain and depressed, unable to work or even have a decent retirement - what's the point of saying that steroids are dangerous? You MIGHT develop osteoporosis, you might become diabetic, you might put on weight, you might suffer other side-effects - you might not. Until you take them you don't know which side-effects will appear.
I have been on steroids for about 16 months - I put on weight before diagnosis because of 5 years of restricted activity because it wasn't recognised followed by 6 months of really bad symptoms until someone agreed with me PMR was a possibility. I haven't put much more on and at present I think the abdominal fat is going slowly. My BP is fine, I show no signs of diabetes, my skin is fine. I can live a nearly normal life - before steroids I couldn't walk far, I couldn't even do my ironing for more than 15 mins at a time and I was in constant pain. There were loads of things that were impossible. I'll take the risks of steroids.
One other warning (for want of a better term) - the steroids won't necessarily do much about the fatigue. That is part of an autoimmune disease and, although it should improve, it will be there in the background and if yo
Hi there, 1 year ago I was diagnosed ( I am 53 years old ). I was so bad in the mornings that I could not get out of bed without help, the pain is quite undescribable. Having been dianosed I was put on 15 mg pred.per day. This made me feel 80% better overnight. One week on from that I still only felt 80% better. The doctor put me up to 30 mg/day. This indeed worked for me. I started doing exercises to restrengthen my muscles. I am a year on from the onset and have managed to be 14 weeks off the steroids ( you must come off in a controlled manner , be sure to be advised how). I find my shoulders are stiff in the mornings however taking ibubrofen at bed time( 2 200mg tablets ) means the pain is vastly reduced. I also do shoulder and arm exercises in the morning, this really helps a lot. I now consider myself 99% better and believe I was bad!
I don't think mine is going to come back but you have to work at your physical strenght. Good luck, hope this helps-Robert
Oh dear Pandemonium (love the name by the way!!) That's so unfair at your age, you're younger than both my daughters. I agree with everything Eileen and Betty have said. The help, support and advice from this site is second to none, so do use it. Even when you just want a good moan :!: We're all very different. My weight went down instead of up when I started on the Prednisolone and the steroids also helped my wreck of a knee to support me for another year, so it doesn't have to be all bad news on that front. I agree with both Eileen and Betty regarding the dose, 10mg wouldn't have done it for me at the start. Take care. Lizzie Ellen 
PS: Robert, that was pretty fast going reducing the Prednisolone. I started on 15mgs a year ago and I'm now down to 6mgs, hoping to be off them by next June. Keep well.
Thanks Lizzie, I just didn't like the shakes etc. that I was getting whilst reducing- maybe I have been a bit fast but fingers crossed I am ok at the moment.
Robert
Hi all!
Robert - I've just posted a new thread which addresses the course and duration of reduction in different people which you might find interesting. Whilst I'm delighted to hear from someone who has recovered quite quickly from their intial brush with PMR, something I would like to add, though, is that your emphasis on \"physical strength\" is something to be very careful about. No-one should feel they need to push themself to go to the gym or whatever in the hope of recovering quicker - it is quite likely to have the opposite effect in someone who is very fatigued with the autoimmune disease or with certain aspects of it. I'll try to explain why:
Generally there is a differentiation made between PMR and GCA (giant cell arteritis) with GCA being seen as far more dangerous. This is because it usually manifests as TA (temporal arteritis) and you are likely to go blind without speedy and robust treatment. However, some research groups have noted that there seem to be 3 versions of PMR/GCA. It may appear as TA with headache and visual symptoms or as pure PMR with musculo-skeletal problems and absolutely no suggestion of TA either at diagnosis or at any point later on. However, some patients with TA may demonstrate PMR symptoms later and some with PMR may go on to develop TA and it is important to remember that if you have PMR you should watch for the symptoms of TA. This is because the mechanism in all the forms is an inflammation of certain cells in the walls of the blood vessels. This leads to the blood vessels not stretching to allow more blood through when the muscles demand it in response to exercise - and that is the cause of the aches in the thigh and arm muscles that are so typical of PMR. It is called claudication and diabetics (and others) suffer it too when they develop peripheral vascular disease (their leg blood vessels get bunged up or don't dilate for some reason).
It is possible to improve your physical state but you need to be very cautious in doing so - for example, at the beginning of the ski season I can only ski short distances at a time before the burning thighs stop me but as the season goes on I can ski further and further. It was the burning thighs after 2 mins on the cross-trainer that was the first sign of the PMR - I used the gym regularly so it wasn't a lack of fitness on my part. Some people are just not able to to do it - even on steroids they are severely restricted in what they can do. The steroids don't always have an effect on the fatigue and it is all too easy to end up back at square one if you ignore your body telling you to moderate what you do and pace yourself. Apart from anything else, if you go and do too much exercise and then spend the next 3 or 4 days in bed recovering 1) you've achieved nothing overall and 2) you have probably put yourself off doing anything at all for the next month or so.
But here's hoping your PMR has taken MrsK's often wished for \"long walk off a short cliff\" :lol: and that it never comes back!
EileenH
at 36 if diagnosed with PMR, i would suspect the diagnosis needs reviewing, its a disease of >50yrs; plus PMR will always respond to steroids within 48rs...your diagnosis PMR at 36yrs of age...is wrong unless proved otherwise...see your gp urgently or seek another gp's opinion...B
Hello bashabm,
You are incorrect in your assertion that PMR is only a disease of the over-50s - there is increasing evidence that younger people can have it too and it is likely that what is happening is that many patients are missed at younger ages partly because of this erroneous belief and also because they present atypically, above all, with normal blood values.
In this lady's case the low steroid dose she has been given could also be clouding the view - it is not high enough to achieve the rapid response that is usually typical with PMR as you rightly mention. If the clinical picture is appropriate then PMR is a reasonable conclusion until proven otherwise. If she has muscle pain there is less of a chance of a missed diagnosis of RA as it is the joint pain in PMR that can be confused and muscle pain is very unusual in RA. There are other autoimmune diseases and many symptoms overlap - it is a question of finding a treatment that achieves a decent quality of life. After all, there are no cures for them. It is a question of clinical diagnostic skills - a dying breed!
EileenH
Just to say Hi to all of you fellow sufferers. I am a 56 year old woman who after a year of complete pain and agony was diagnosed 3 weeks ago with PMR and GCA. My GP just kept telling me I wasn't 25 anymore and what did I expect at my age! After seeing a third GP I eventually got some answers. I was started on 30mg a day of Prednosolone and am reducing down each week. I have to go back next week to doctors to check on the blood test. I must say the steroids have worked quick with the pain but its the GCA that worries me the most. My job in a nursing home with high needs dementia patients has been hard going and it did get to the point where I was going to check myself in A & E just to get a diagnosis as I just could not cope with the pain anymore. Why is this disease such a vague and cloudy thing to diagnose? Anyway I think your support group is brilliant here and I am learning so much. It is comforting to know that that there is some of you more experienced sufferers that can help.
I does seem to be a cross between the lap of the gods and the luck of the draw whether we get diagnosed without a fight.
My mother was diagnosed at her first visit to her GP. I was there with her ( she was in her late eighties and a little deaf ) She was asked to say what she found hard to do ( dressing, showering, washing hair, housework, gardening. ) Can you hold your arms above your head? When is the pain worst?. ESR was explained and bloods taken. Next day she was on pred. and went on with life as she always lived with just a little help from family. All this from her NHS surgery in the nest village.
When my turn came to be diagnosed I was just as lucky ( different Practice ) as have been many on here.
As for being told you are not twenty-five any more when you are only fifty-six. How old was s/he. this GP? I'd be furious at such a put down.
Well, as Eileen has said, they are only people who have to use the littlest room like the rest of us but we are entitled to expect a bit more professionalism than seems to be on offer in some Practices.
Does more have to mean worse?
Hi I'm the same..38, just diagnosed and a secondary school teacher for years....... but glad of the diagnosis.
I've just been diagnosed after 4 and half years of neck pain and eventually all over. Put it down to having a 4 year old and a 2 year and returning to work, inbetween and after both children, just generally getting older!!
Since the diagnosis I have been on 20 mgs, after 2 days I could tell the difference, have been on them for about 3 weeks and I feel a completely different person... you should mention this to your doctor mine said she will start reducing the steroids down to 15 a day if it doesn't affect me!. Apparently, i keep being told that i could get rid of it after 1-2 years but i'm not holding my breath after speaking to other people with it.
good luck
Hell Sandiem
Sorry you have PMR so young You may well be free of PMR in 2 years With my first bout of PMR ( aged 54) I went from agony on to 20mg and within a year I was on 1mg maintenance dose for another year so it isnt
impossible Unfortunately mine returned again 3 years later
I was lucky to have given up work so I could rest when needed which Im sure you dont have much time for !!
Just try and look after yourself as much as possible and remember that the PMR is still there just hidden by the steroids
Best wishes
Mrs G