PMR New case. What can I expect?

Hi there! Unfortunately you are asking 'how long is a piece of string' questions which no one can answer for you. PMR is such a subjective condition that your form of it belongs to you alone. No one else will get it in quite the same form or run the same course as yours will. There are common grounds to meet on all the way through the journey and a good many of us will have experienced similar problems, but we can't know what yours will be (and don't even know where our own journey will take us).

It does seem to me that you have added to your problems by trying to do too much to begin with. PMR doesn't like that and goes into overkill mode leaving you with the original problems intensified, which then takes longer to clear.

Can't help out on the horses question, I barely know the front end from the back but there may be someone along later to help there.

Rest? I can tell you that I needed none today, but yesterday an hour long nap after lunch was required, but at the beginning all I did was rest - I knew I was improving when I began to get bored!

I'd suggest that you read the 'Pinned' threads at the top of this forum. They will take you to reliable informative websites plus another forum strictly for PMR and GCA sufferers. General searches on the web can call up some questionable sites and the more credible information you have the better you can deal with this problem. Don't get downhearted, there is help out there!

Catie

Hello tidy paquet

Sadly "this is a kind of normal tale".

As to how long it will be before you can "work and ride again", that is difficult to answer because we are all different in both our degree of inflammation and in our response to the steroids.

One thing you have already discovered is that following the advice of your Dr to rest, you have seen an improvement in your pain levels. For most of us that is the hardest lesson we have had to learn. We have to give our bodies sufficient rest to enable the steroids to do their job of reducing the inflammation - there is no cure for PMR and the steroids are simply controlling the inflammation to allow us to lead as normal a life as possible until PMR decides to burn itself out, and that can take anything from 2 years upwards. A few lucky people find that their illness goes into remission in 12-18 months but we tend not to hear from them on the forums, probably because their journeys are straightforward and sometimes even pain-free down through the steroid doses.

Those of us in retirement during the onset of this illness are very much in awe of anyone who has to continue to work, and from what you say, your work is very demanding. Someone over on the other forum used to work with Riding for the Disabled and had to give it up when PMR took over.

As for how much we have to rest, many of us have found that if we overdo things on a 'good' day, PMR comes back to bite us on the next. So it is very important to learn how to pace ourselves - not easy but very important.

With regard to your feeling of "shaking inside", that is a side effect of the steroids and something with which I can empathise. It will improve as you reduce down through the doses.

At least, it's good to hear that you appear to have a caring Dr who is continuing to monitor you via repeated blood tests and who has increased the intitial starting dose to get a grip on the inflammation.

I do hope some of this helps.

Yes, you have both helped tremendously and yes, my doctor is being wonderful and taking it very seriously that I am self employed . He has already referred me to a Rheumatologist and am going to go for physio. I am assuming that gentle stretches probably help.

Thankyou so so so much.

There's a lot to learn!!!

xx

Be very careful with the physio - the usual techniques are contra indicated in PMR. Only gentle massage and heat treatment is advised, the muscles will not take kindly to any manipultion, particuarly at this early stage of the illness when the muscles are so inflamed. I learned that to my cost before diagnosis when a physio did manual stretching of my legs to try and ease the pain which at first was thought to be caused by my spinal problem - I ended up undiagnosed and in bed for 4 months!

Oh poor you! In bed for 4 months must have been terrible.

I will take heed of your advise - I have found already that very gentle massage can help.

Thank you very much.

Hi and welcome from me too!

Something that concerns me is that you haven't gained more relief from the 30mg dose although if you have tried to continue much as normal that isn't surprising. The pred won't cure PMR, all it can do is allow you to manage your illness and lead a relatively normal life - but that doesn't include doing a heavy manual job I'm afraid.

The other thing that concerns me is the statement "PMR diagnosed by a ESR of 44 ". There is no test that diagnoses PMR, it is a "diagnosis of exclusion" - you exclude all the other possibilities first and then choose PMR as a possible answer on the basis then of the clinical picture, i.e. your history and symptoms and possibly a quite dramatic response of those symptoms to a dose of 15 to 20 mg/day of prednisolone. You should see about a 70% improvement within a couple of weeks. Why that dose and not higher? Because PMR is the only thing that will respond that fast to that dose but other things will improve if you use high enough a dose.

To explain: the ESR is a measure of any inflammatory activity on your body, it isn't just inflammation due to the underlying autoimmune disease that causes the PMR symptoms. It will be high in many diseases as well as a mere cold or flu, other simple infections and even pregnancy! So you see it isn't specific to PMR. Not everyone has a raised ESR - mine is stubbornly around 5 how ever bad I am and so is Nefret's. The "normal range" is from 1 to 40 and once it is seen to be above that most doctors will react. But say your normal was like ours - a level of 44 would be pretty high (some people get levels much higher mind you). But you only know that a low level is "your" normal if you've had it measured when you weren't ill.

As the others have said - physical work is very tough when you have PMR. Two ladies on the other forum worked with the RDA and had to abandon it because their legs simply wouldn't work to run. I had worked with RDA too in the early days but once my PMR got really bad I couldn't get out of bed without pain never mind hang onto a horse on a leading rein, and as for anything more than a gentle walk - in your dreams.

Your how long questions: yes, how long is a piece of string? I had had PMR for 5 years before it got a lable. During that time I managed a lot - but I couldn't have done your job however much I'd wanted to and I was only in my early 50s then. Then it hit big time (see the other thread about that). I've been on pred for over 3 years now - and still couldn't even dream of doing horsey things.

I know this sounds very depressing to you - but your how long will be answered by how you progress. You may be one of the 25% of patients who has a trouble-free journey and recovers in 2 years or less - or you may be amongst the 25% who take a very long time to get off pred. You may even be amongst the 30% of all the population who don't respond fully to pred. Noone can tell.

I would be happier to know you doctor has considered all the other possibilities and ruled them out - because 6 days of 30mg should have shown some result. Or has it but you haven't given yourself a proper chance to heal? This is a bit like real flu - ignore it and try to bet it into submission and you will be poorly for even longer.

Keep in touch now you have found us and we will answer all your questions - whether you will like the answers is another matter.

Eileen

Hello Eileen,

Thank you for the reply. All very interesting and giving me lots to think about!

My doctor has already said that he wants me thourghly checked by a specialist because of everything you mentioned - so that's all good.

And yes , I had worked on relentlessy since March through the pain when really I needed to get more help from the doctor!!

Then to make things worse I have tried to carry on doing everything ( Although I wouldn't want to even lead my horses at the moment) including teaching.

When I was at my worst I couldn't bear to lie down, the pain was making me cry out in my sleep and every part of my upper body plus some leg things! hurt like hell. Within 24 hours of taking 15 mg of the steroid the pain in my head went and I could at least sleep lying down!

Whether this is a 70% improvement I'm not sure??!!

I'm now being good! Just pottering at home today as went shopping yesterday and did some light dusting and hoovering and today have very weak legs and feel light headed.

Think I should stay here all day and have you all keep telling me to sit still!!

I'm finding it very hard to adjust mentally to all of this , but am sure that is normal.

Thanks again. x

"Think I should stay here all day and have you all keep telling me to sit still!!"

Very probably! It is that adjustment to allow your body a chance to heal that is most important. We often get men telling us they're "going to work through this..." Funny how we often don't hear from them again! Men seem to get PMR differently and also respond to the pred differently too. No Idea why though.

You mention head pain - what sort? That's often more associated with GCA and you can have PMR pain too. And the pain in your thighs can often be GCA - did it start after a bit of exercise and go away when you stopped doing whatever it was you were doing? GCA doesn't have to be just in your head - in fact, GCA probably ends up reaching your head after starting up somewhere else.

You do need to keep moving a bit as that helps with the stiffness - I just read an explanation for that keeping RA stiffness at bay as being keeping the fluid in your joints moving, I suppose a bit like stirring a jelly when it should be setting stopping it turning into a solid mass. It's the getting it more fluid again that is so hard. Once you get the hang of it you will know your limits - and learn to stop before you have overdone it - well maybe, not everyone does! Possibly had you just done the shopping yesterday and then left things you might have felt up to doing the dusting and hoovering (now that is something that KILLS me, it's the leaning forwards bit) and even managed a bit more today. Sometimes by stopping sooner you get more done overall as you don't have to spend such a long time recovering before being able to do the next thing.

And the mental adjustment aspect is a massive part of it all. It is bad enough feeling grotty - when it then gets in the way of your life to the extent PMR does it is far worse. When we who are a long way into our journey are then unable to assure you that, unlike a cold, you'll have it for a week and then it will be only the left-overs to mop up suddenly it starts to get hard to be optimistic. It is that that often makes internet info seem very doom and gloom - but the alternative is to say, as many doctors try to tell you, it'll all be over in 2 years and you'll be back to normal. And for 3/4 of people that isn't the reality. When they are unable to reduce their dose of pred the way their doctor wants them to or it isn't all over in 2 years or they get funny episodes of something they start to worry that maybe it is something far worse.

Well managed PMR won't kill you. That is the real positive message to hold on to. It may make something of a mess of your life for a while - I live in northern Italy, we moved here in semi-retirement to walk (ha ha!) and ski. I've managed to ski until this year. This summer has been - um - interesting and I'm faced with probably NOT being able to ski this year. Still coming to terms with that :-(I have found other things to do and will find more I hope.

Above all, you have to learn to appreciate the things you CAN do and not mourn too long for what you can't at present manage. Let's be positive - I hated housework, I have a brilliant excuse not to do it :-) Dust is very patient - it will always wait. Where do you live? The other forum will give you indicators of where there are real live support groups - MrsO runs one based around Chertsey and there are quite a few others. If you are mobile you don't have to live within a certain distance - one lady from south Wales travels to Chertsey to the meetings! The other forum also seems to function well as a support group for those of us who can't get to a real one - and we laugh, lots! There are photographers, animal appreciation groups, horsey people, a few of us who spend as much time abroad as we can, there's a group of American members, a few from Australia - and a load of night owls. All that means there is possibly someone around online when you are having a deep depression at 2am - and you will rarely wait more than a few hours for an answer to a question or an acknowledgment of having listened to your despair. We also have our fair share of slightly loopy senses of humour - always helps! It's a very busy place :D

cheers for now,

Eileen

Firstly, thank you for taking so much time and effort in replying to all my woes! I can't thank you enough.

My doctor was in close touch when the pain was running up my neck (swollen) and into my jaw blah, blah and that has now all subsided.

The pain in my leg came on when I walked and then went when I rested. That has gone for the moment - just replaced today with legs of jelly and feet that feel like ton weights!! ha ha! Oh and all last night they kept saying "we're going into cramp!" but didn't quite.

Yes, I'm keeping mobile today but slowly.

I have loads to do at home, here at the computer ( running horse show from home on Sunday!) I have my own accounts and hubbies to bring up to date and Xmas shopping to do on line tee hee! And of course listen to good advise from all of you.

I live in Essex.

If I get time I will hunt for the other forum, I am normally an upbeat girl with a very silly sense of humour. Seems I may fit in!!

Thanks .x

tidy paquet

If you're interested in attending a PMR support group, you're in luck....there is group in Essex - they meet at Westcliff-on-Sea. They were lucky enough to have as their guest speaker recently a professor leading research into PMR and GCA (he is based at Southend), who is also patron of the National Organisation, PMRGCAuk - if you look at their website under resources you will find full details of the meetings.

You don't need to hunt for the other forum:

Scroll up to the top of this thread where you will find

Discussion forums -> Conditions P -> Polymyalgia rheumatica and GCA

and click on the bit that says Polymyalgia rheumatica and GCA just above the title of this thread (the bit with "what can I expect") You will then see a list of all the threads and at the very top are 2 or 3 ones with a red box saying "PINNED". One has one post, posted by a moderator, and its title is PMR-GCA and other useful sites (or words to that effect).

But I will admit - you need a bit of time to play with that one. However, you have to register and be approved by the administrators before you can post (you can read as a guest) and that will take a day or so.

And probably one of the best sets of rheumatology experts in PMR can be found at Southend...

Eileen

Oh my goodness, Westcliff is not far from me! As soon as I get time I will look into it all further.

Thank you so much ladies.

Also , I forgot to say to you Eileen what a shame you don't think you can ski this time.......... but maybe some time soon???!!!!! And how lovely to live in Italy.

xx

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