PMR. On large dose of Prednisdone. Trying to lower dose.

Across the pond in Florida.

I was started on a high dose at 60mg. Now realized that should have been much lower. I had immediate relief until the 20th hour. Then my symptoms started to return. If I or my doctor had known what he should have known, he should have started me much lower.

All that is water under the bridge. Now I am trying to lower the dose. I think I started to have problems when I went from 48 to 40 mg. light headed, extreme fatigue. I couldn't do anything. Those symptoms went away when I went back to 48 mg. I plan to drop to 44 mg. Not to sure when to do that. Dr wants me to drop by 8 mg every 4 days. I don't think my body can do that.

I forgot to mention I am now splitting my dose. Half a.m.; half p.m.

The problem is at that sort of dose it could be something other than PMR that also works with pred. Starting at 15mg-20mg pred seems to work miraculously after a day or two if not quicker for PMR and not for other things. It does sound like you may be getting steroid withdrawal symptoms. How long have you been taking pred / methylpred? As as rule of thumb you should not drop more than ten per cent at any one time. 

Or paid for it????????????????

My GP had a full blood work for all inflammatory diseases,including RH factor. Everything was in the normal range except: Sed Rate (58); RDW (16.6) (range 11.0-15.0); platelet count (407) (range 100-400).

After the test results, he put me on 60mg prednisone 1 wk,; 40mg. 2nd wk and 20mg. 3rd week.  That told me he didn't know what he was treating and I felt like I was "blowing in the wind" with no guidance.

It was several weeks before I found this website.

I am quite certain this is PMR because of the flares I was having. I told the doctor my symptoms and he pressed along the top of my arms and shoulder and kept saying "trigger points; trigger points" while I was screaming.

As to the flares. They would start at my shoulders, I felt like someone had put a 200 lb. weight across my shoulders. the pain would start there and go down the rest of my body, incapacitating me and put me to bed. There I would have chills and felt like I was running a fever, but seldom did. At first it would be gone by morning, after several flares they lasted into the second day. The flare would not be gone until they ache in my arms and shoulder ceased. At times I felt light-headed and felt I could faint at any time, but didn't.

Inaddition, I always had pain along my shoulders and hips and thighs, but attributed to other things.

If this is not PMR, then I don't know what it is.  It sounded to me like classic symptoms when I found the website for PMR.

Looking forward to hearing from you.

 

Judy, did anyone consider fybromyalgia? It can have similar symptoms. PMR tends to be continual pain before diagnosis, not off and on which you seem to be saying is happening, flares can happen with PMR if you reduce pred too quickly, but again the pain is pretty continual until you get it under control with pred.  Flares before diagnosis do not seem quite right for PMR. Pred does not work for Fybromyalgia. An orthopaedic surgeon friend of mine did not know the difference between polymyalgia and fibromyalgia!! 

I have had fibromyalgia for more than 20 years. At first that's what I thought my flares were, but I had never experienced anything like it before. As it continued to worsen, I had to look elsewhere for a diagnosis.

Being negative for rheumatoid factor doesn't mean you don't have rheumatoid arthritis - I wish I knew where GPs got this idea. It is just another fragment of a jigsaw.

The trigger points of fibromyalgia are multiple and a few almost coincide with the trigger points for myofascial pain syndrome - but there are something like 18 specific ones in fibro of which you have to have 11 (I think) to make a dx of fibro. In myofascial pain syndrome there are 6 and they aren't quite the same. In fibro the trigger points are quite small in area, about an inch across. In PMR the tenderness can be all over a muscle group - your whole bicep can be tender for example. The other important difference is that PMR responds very obviously to a moderate dose of pred (15-20mg) within a few days - fibro does not. 

Patients with PMR symptoms who do not respond to this moderate dose of pred may have another inflammatory arthritis or something else altogether so it does need investigating properly. Your description of pain that comes and goes is also typical of palindromic rheumatism - but I think that usually involves joints too though that can happen in PMR as well.

You really do need to find a good rheumy who will listen to you and in whom you have confidence - having confidence in your doctor is absolutely crucial. In the UK a GP would also manage PMR but this doesn't seem an option in the US - do they have unions or something? 

Judy, as Eileen says, it really is worth finding a doctor who could delve deeper into what you have. You may be taking a high dose of steroids when you don't actually need them and another medication would be more appropriate. 

Eileen, having read many posts regarding absolutely useless rheumatlogists...that leave us patients floundering, in pain, and confused, struggling to come off steroids, at totally the wrong rate of tapering...why isn`t there a protocol they should ALL follow.....I know you will probably say that`s in dream world, but there are so many posts on here where we are all doing things at such different stages and still being ill, because of wrong info, from so called experts! Can`t believe their ignorance sometimes.... is there anything likely in the future to change this??  Sorry,  just a rant for all of us out there dealing with PMR and getting nowhere because of them!...

OK Linda  I know exactly how you feel, but things have changed and are changing, albeit slowly but they are changing. 8 years ago there were only two forums, this site and one in Canada.  This site has been invaluable and it was through this site that 5 people got together and decided to do something.

There are over 800  Orphan Illnesses, most of them auto-immune. The Vasculitis group has many with GCA being the biggest member of the group.   But we are lucky in some ways as other people who suffer from those other Orphan illnesses are  suffering more.

 I know it is no consolation, but PMR is not life threatening it does change your quality of life, but it can and does go into remission. Whilst GCA is a different kettle of fish, it is better understood and it also can and does go into remission.

8 years ago there were only two support groups in the UK, one in East Anglia and one in Scotland.  Now we have three registered Charities and more support groups.  Those charities are all affiliated and work  closely together.  They all have the same aims,  support, raising awareness and research into friendlier meds, cause and cure.

We now have people with PMR, GCA or both and all volunteers who are:

running support groups;

representatives on medical committees;

talking to medical students;

working closely with Researchers (more research is being undertaken now than there ever was 8 years ago)  You can find out how much research is being done by going to PMRGCAuk national website. Patients, including Eileen are working closely with lead researchers.

Ragnar, Eileen and myself devised reduction plans, current research is being undertaken on one of those plans.  Medics are listening.

The research being undertaken is worldwide if you look at EULAR (European Union League Against Rheumatism) and ARC (American Rheumatism College) you will see how many countries are collaborating in providing new guidelines for diagnosis and treatment of both PMR & GCA all now with patient imput and it is ongoing.

 

Our very small charity managed to give £8000 to help a young researcher develop his research into GCA.

We now have books and DVD's written by Patients for Patients.

We encourage our people to take part in Clinical Trials.

We are trying to educate our GPs and Consultants and ask that they work together with their patients as a  team.  It is working, albeit slowly but it is being done.

The USA used to have a National Medical Foundation for people with PMR & GCA and Chapters  (like the UK support groups) sadly it has folded.

There are no other Countries  who have Charities working hard. We do not have one paid employee. All are Volunteers and most of them are people who have had or still have PMR, GCA or both.

It has been a long hard haul, but we will get our aims, not in my lifetime but hopefully those coming along will benefit.

You are getting somewhere by educating yourself and 'Knowledge is Power'. 

You can take control of your illness and work with your Medics.

Oh Dear, I have gone on at some length so apologies in advance.

There has never been a study about the best way to use pred. There are vague recommendations - but so many believe they know best so when something is suggested to them they tend to pooh-pooh it.

There are meetings where they all get together and talk about how to best manage patients - and, believe it or not we are getting there! Not least because their world has, to some extent at least, been turned upside down. They have always been the experts, patients were lay-people, they knew nothing about science or medicine. Things are changing though and more of us have worked in the field, are computer literate and as able to read stuff as they are. And we know how to get together, even if it is only via the internet. But there is a growing awareness amongst medics that patients also have a voice and we are getting fairly good at putting ourselves forward.

Search for OMERACT and you will find their website - it's all a bit jargon-ish needless to say but it does explain what they are doing to make treatment of rheumatic disease better. A few people on the forums or involved with the support groups are involved in this process. But it is slow - finding a drug is a long drawn out process and then finding out how to use it best even longer. Clinical trials - apart from needing funding - take a long time to set up and even longer to run to their conclusion. Even then the answer may not be what we wanted. But now patients are involved and being listened to they will see a new side of these diseases. 

That is part of the reason that I personally am adamant that what needs to be done is not to find new and very expensive drugs that will never be approved but to optimise the use of pred - and many of us believe that the very slow reductions we peddle here are helping to do that. Drug trials need the backing of the pharmaceutical company or someone else for funding. Pred is old and cheap so of no marketing interest - and that is what it comes down to in the end.

All we can offer from the forums is anecdotal evidence but there is a group in the UK that is about to look at it in more detail. Together with the use of a gentle exercise programme - because that is also important. We find doctors who tell patients to go away and do their normal exercise programme - which often makes it look as if the pred is doing nothing. There are certain things that really aren't a good idea when you have PMR because your muscles are intolerant of acute exercise and any sustained or repeated movements leave you sore and unable to do anything for days - and then there is the fatigue as a result. If you go about it properly, building up VERY slowly and taking regualr rest breaks, then you can achieve a great deal more.

Add to all this the fact that every single person is different in how they suffer, how they respond to pred and what dose for how long is needed- there is no wonder that the medics are confused. They went to medical school to learn how to cure people - now they have to learn how to look after them as best they can when there is no cure. That doesn't fit well with god-complexes! They are told at med school that PMR is an illness which can be managed well with pred. Well, it is but no two people can be managed the same way and that is what confuses them. They don't see it that often - despite it being the most common inflammatory arthritis in over 65s. Very many patients are fobbed off by their GP with "Well, what do you expect at your age?" and their belief that the average age of onset is 73 means they don't look for it in younger patients. So we get other labels - including "psychosomatic" and "depression" - and the great get-out: "fibromyalgia". Obviously looking at it from that point of view means you won't be treated properly - and the treatment fails. You go back. Again and again until you become their heart-sink patient and finally you give up - so they think you have got better. PMR is self-resolving in about 2 years. That's probably how long patients complain about it...

Now we have many younger people with it - and of an age group who still have to work. Your granny probably had PMR - think about it. But she was old (at 70) and sat in a corner and knitted and complained about her rheumaticks when she got out of her chair. Now at 70 we have far higher expectations - my neighbours still ski, climb mountains, ride their bikes until they are 85 or more. Before long we will have to work to 70. Try managing that with PMR that isn't managed well.

So it WILL change - it has already changed a lot. We have loads of doctors who have been shown our approach and they realise it is probably a very logical way to go about things and support their patient in trying it. Ten years ago there was next to nothing - now there are 3 forums in the UK with members from all over the world and three or four charities for PMR and GCA who provide support in the form of groups and websites. And who, above all, work as advocates and mediators with the medical profession. A bit more money wouldn't come amiss...

If lodger feels she went on at length and needed apoligise - mea culpa, mea maxima culpa...

You don't have to read us - we won't feel lonely...

Thank you so much for this info....and lodger!  I realise lots of things are happening, which maybe some of us aren`t always aware....I do agree the answer is medics, patients, students and everyone involved to have a voice.....having had ME/Fibro since 1989,  I know what a battle us "heartsinkers" are....My doctor told me in the first year, that no money was being spent on these conditions because we don`t die from it!!  it`s all going (at that time) to AIDS....well, fortunately, they have found a treatment for that....Yes, I`ve been told over the years..."in the mind," depression, you name it, I` ve been told it, or heard it  .... ...I have filled in forms for and been to meetings years ago about ME, but after all these years nothing has changed...it`s my heart that sinks for the patients

When I got PMR I was overjoyed to take medication for something!.....but my rheumy has not been helpful..... ...This forum has been my lifeline, but obviously we would like the medical profession to be the answer, and reading the above, I`m sure one day it will. Will look up OMERACT....

It`s wonderful to hear of your neighbours lifestyle at their age....but Eileen maybe she needs a hearing aid if phone calls are loud!

Nah - she's Italian! It's a genetic fault I think - they are all the same, even young people! She's quite young, a mere 67 I think.

Ipsa scientia potestas est......

I cheated, googled it!   (but do believe it!)

Lodger's mantra "Knowledge is power"

I know I am so thankful you are here posting information and giving everybody guidance.  Without your information, I truly wouldn't have a clue what to do.