PMR - For the new people

Bones, joints and muscles
1

Over the past three years, many people have joined this site and going back over past posts can be difficult.

No 1 - There is currently No known Cause or Cure. PMT comes when it wants and goes when it wants.

No 2 - This website is contains an International Survey on PMR and GCA

http://www.quantisurve.com/cgi-bin/pmr.asp it takes about 10 minutes to fill it in. The results are also available and it does enlighten you on some aspects.

No 3 - There is a National Charity called PMR-GCA UK and it will shortly be launched. In the meantime, this site contains the numbers of some support groups and also this website www.pmr-gca-northeast.org.uk. This has loads of current medical information on it and also the latest guidelines for the treatment of PMR (British Society of Rheumatologists) these guidelines are also on their own website and the NHS website.

There are also other articles, re exercise, steroids, Ragnar's drop down regime and people's stories - oh and a list of support groups.

No 4 - Steroids - these alleviate the pain and enable you to at the least maintain some quality of life. They do come with side effects, but not everybody gets them all. So far I have not come across anybody that has had all 82 of them.

No 5 - Learning to go with the flow and listen to your body is essential. This is one of the hardest things to learn as you have been active, busy and all of a sudden a ten ton truck, which you cannot see, has hit you.

It is hard to deal with these two illnesses - PMR and GCA.

This site is the best I have found so far, to ask the daft question, to ask if somebody else has tried this, to ask does someone know about this?

I hope the forgoing is of some help in pulling past strands together.

Good Luck and may your PMR take a short walk of a long pier soon.

In the meantime Knowledge is Power.

:huh:

2

Thank you so much Mrs K for taking the time to help all of us who are new to PMR.

Just before Christmas, I had never heard of Polymyalgia but thanks to this site I am much better informed and instead of feeling marooned with this knowledge, I feel part of an extended family with the freedom to ask questions.

I had all the symptoms but my ESR blood test was at 3 when others are reporting levels between 40 and 60.

I wasn't at all sure when my GP prescribed 20 mg Prednisolone but I took it because I was in so much pain. Within days, I felt so much better and ten days later I think I have the answer despite the low ESR rate.

I presume that because I have had such a dramatic improvement, the diagnosis will be confirmed, I will be prescribed more Prednisolone and referred to a consultant - at least that is what I am expecting!

I shall let you all know.

Tilly

3

Thank you Mrs K that is great clear concise advise for everyone I have joined the PMR fighters North East now and they have a fountain of knowledge on their website This forum is a lifeline for us all when we are feeling low I went on Medicine net last week and read peoples stories which was very useful for me as I found other people who had had it for a 2nd and sometimes 3rd time so I didnt feel such a freak !! I hope everyone who is having trouble with diagnosis gets sorted soon and as Tilly says it is people like her and me ( the first time ) who have low ESR levels who have to struggle for the diagnosis Also some Drs seem to try and bring people down of steroids very quickly so knowing the guidlines yourself helps ( for those who have to educate their Drs !! ) So far (fingers crossed ) I have been fine with steroids except for a bit of a weight gain ( I am going to get to grips with that as I know it doesent help ) but it must be very difficult to cope without them

4

Good one Mrs K smile Lots of people will find that really useful. And Tilly, do press for referral to a Rheumatology Consultant. They really do specialize and I think that's so important with an awkward thing like PMR. My friend is a GP and he's learning from me :!: Especially in regard to steroid treatment both at the start and when reducing. He's changed his approach having seen what my Consultant is doing. I'm reducing my steroids now but being brought down very, very slowly by my Consultant. By the way my ESR has never been up but my symptoms were so classic in every other regard that the Consultant put me on Prednisolone straight away to help with her diagnoses. Good luck, so pleased to hear that the steroids have brought such swift and dramatic relief.

Lizzie Ellen

5

A great precis Mrs K and I'm sure all the newly diagnosed sufferers will find it so helpful as they start out on this baffling journey. As you say, there is now so much on the site to look at but you have made it very concise - perhaps it could just be copied and repeated every so often to help new posters. Thank you.

MrsO

6

Thanks Lizzie Ellen.

I certainly intend to press for a consultant's appointment. In many ways I consider myself lucky to have been prescribed Prednisolone with an ESR of 3! I know others have hit a brick wall with much higher rates and are still suffering. (Bob I am thinking of you.)

What is exercising my mind is why all GPs are not giving a two week trial of steroids. Nobody actually wants to take them but this course of action would save so many people a lot of pain.

What I don't know is whether I (and others) could have something else wrong which is responding positively to the steroids but is not PMR. Anyone have any ideas what else it could be?

I realise that going to see a consultant will answer that question but I wondered what other things would be considered.

7

I suppose they dont give it to everyone because what do they do at the end of 2 weeks ?? There are lots of Rheumatoid diseases Viruses can cause all sorts of strange aches and pains I know I had 17 blood tests with the Rheumatologist physical examination My complete medical history I remember being asked if I had had shingles ( I had Had anyone else ??) Some people also seem to take longer to respond to the steroids ( I like you responded very quickly ) so after 2 weeks there might still be a doubt if there wasnt a noticable improvement I really hope Bob you get something sorted quickly I think ( fingers crossed ) I am going to be OK on 15mg and not have to go back to square one at 20mg !! But it just shows what a diverse illness it is as I never had one relapse in the 2 years when I had it before and even the pain has now gone to the back of my knees as well this time I hope this new Charity being set up to do research is successful

8

Hi Mrs G,

I hadn't realised that there were many different things that the aches and pains could be. In my ignorance I thought of RA or Fibromyalgia until I heard the word Polymyalgia.

Much to think about now!

I haven't had either shingles or chicken pox and am fairly certain that my problem dates back to a severe chest infection almost a year ago. I was needed at work and can recall one day having to get out of my sickbed to get there.

I wonder if my GP will take me off steroids next week whilst I wait to see a consultant? Mmmm!! Not sure about that!

I never wanted to take them in the first place but now I feel as though they have transformed my life so coming off them will be interesting

9

I keep forgetting to identify myself but will own to all the Guest posts on this thread. Probably other posts as well.

I have registered now so this shouldn't be a problem after today.

Tilly

10

Hi Tilly I hope you are allowed to carry on with the steroids while awaiting a Rheumatologists appointment I have said on here before that the best money I ever spent was a private consultation I dont know how I would have managed if I had had to wait the 3months the NHS was offering me and taking Ibrofen doesent suit me They give steroids for so many different illnesses at the same time I was ill in 2002 my sister in law had ( and will have forever ) an illness where her immune system was attacking her muscles but making her weak no pain She had to be given 60mg a day of steroids or she would have died as muscles make you breathe digest food and your heart is a muscle also and they were worried about heart failure So at the time I felt lucky just to have PMR which sorted it self in 2 years but I didnt feel too lucky when it came back 3 years later !! I had a bad throat infection /flu ( given antibiotics ) then at least 3 more throat infections the year my PMR came back so that could have been the cause I shall be wearing a mask afterwards if I ever get rid of this 2nd bout !!

11

Hi,

Having just been diagnosed with PMR after suffering for over 2yrs, I have found this forum very helpful.

When I first started with symptoms my Dr said it was probably just athiritis starting, I was 51 at the time, blood tests didn't reveal anything, neither did an x-ray on my lower back and chest but I was prescribed Diclofenic and took them intermittently for about 12months, my symptoms worsened and so I went back to Dr who referred me to Consultant. Again I was told it was probably just my age, being peri-menopausal together with natural wear and tear of my joints. He told me that he often sees women of my age who have quite dramatic symptoms which would probably settle down in about 12 months time! 12 months further on and although the symptoms have changed slightly or my bodies reaction to it has changed? I went back to my Dr, this time my ESR levels were raised, I also had a further x-ray but of my thoraxic spine which came back normal so my Dr said she would refer me to a 2nd Consultant. I went privately and saw him almost 2wks ago at which time he diagnosed pmr. I started on 20mg Prendisolone on Tues morning at the same time cutting out altogether the 3 Diclofenic (anti inflammatory tabs) I was taking. I think they are helping because I do feel better particularly later in the day when I was at my worse before. However I have still felt quite stiff the last 2 mornings when I got up. I was told the steroids would work almost immediately, what have been other peoples experience of this?

12

Hi Sue and welcome to this forum although I'm sorry to hear how you have been suffering for the last couple of years. Yes, a lot of sufferers do still feel some pain and stiffness in spite of the steroids but nothing as bad as before. As you only started taking them on Tuesday, it may be another few days before you get some further relief. As you say your inflammatory markers were raised, I expect your GP will be checking your bloods again in a few weeks time and depending on the results and how you feel will probably reduce you down slightly from 20mgs. Do hope you get some more improvement over the next few days but keep in touch as there is always someone here who has some experience of something or other and can reassure you.

MrsO

13

I have spent the last couple of days reading this patient experience and had not intended registering and posting until I had caught up with it all so I didn't duplicate anything that had been said before. However, I felt I had to join in here asap.

I had had the symptoms of PMR for nearly 5 years before I came to my flat in northern Italy last March to recover from a nasty experience with the NHS over an episode of Transient Global Amnesia - A&E were fantastic (not that I remember anything about it :-) ) but the 2 other consultants I was referred to ignored the obvious and my input and imagined something that wasn't there. This became a continuing theme over the next few months. Whilst here I had a lot of time to use the fantastic internet connection we have here to read online - and a throwaway comment by a GP in his blog led me to PMR. It was me!

On returning to the NEast I went to my GP who I'd been to over and over again in the previous years and asked \"Might it be...\". More bloods - nothing abnormal, ESR of 4, normal CRP. Just an unmistakeable clinical picture: stiff shoulders and hip girdle, couldn't lift my arms, unable to stand up from a chair without a pull, sore major muscle groups especially quads and biceps, exhaustion, low mood, joint pains, sweats - almost everything on the Guidelines plus a few more. I was referred to a consultant rheumatologist. Before I went I wrote a clinical history so I didn't forget anything and he accepted it apparently quite happily. I went through the physical examination and he was adamant he didn't think it was PMR and ordered some X-rays and some more fancy blood tests and told me to come back in 6 weeks - I had to as we were about to move here on a semi-permanent basis!

Despite not believing it was PMR he still put me onto 6 weeks of prednisolone, two weeks each of 15/10/5mg. I took the first dose at 10.15am and during the afternoon walked downstairs and thought - \"That wasn't as bad as usual!\" Within 24 hours most of the stiffness had resolved, I could walk up and downstairs (to go up in the afternoons I'd been on hands and knees) and a large proportion of the joint pain had improved markedly. Within a week almost all the symptoms had gone. Withing 48 hours of stopping I was as bad as ever, having to retire to bed in the afternoon in tears with the pain. For the first time my husband realised what I had been going through. I had a few tablets left somehow and took them with the same result as before.

At the follow-up I took a diary of that recovery with me as I knew that such dramatic resolution of the symptoms was regarded as almost diagnostic of PMR. I parked about half a mile from the hospital and walked uphill - I couldn't have done that before. I walked into the consulting room to see a new face. I went through the same process as 6 weeks before, history, examination, before he said \"I don't know, I'll have to get the boss\". The \"Boss\" came, admitted that the X-rays and bloods from 6 weeks earlier were negative but wasn't interested in how I had reacted to corticosteroids. \"No, you're too young, your bloods are OK, it's some form of inflammatory arthritis. I want to start you on sulphasalazine but you'll have to have a doctor in Italy to monitor it. You can't stay on steroids forever.\" I want some other tests.

I went home, did the research to find that meant 2-weekly blood monitoring because of liver toxicity and not being able to go into the sun (briefly and basically!). Excuse me: I'm now living in Italy most of the time! I went to the GP who happily provided the prescription for the corticosteroids he said I could have in the interim. I arranged another follow-up for several weeks later when I was to be back in GB. I was to get copies of all the clinical findings and letters to show to Drs here. None materialised in the time promised and the one the GP got bore no resemblance to the hospital appointment

14

This is very helpful indeed. I am not exactly new ( this is my second bout ) but I AM new to the forum and, as you say, it is comforting to have some where to ask the \"daft\" questions.

As for daft questions, I reported what looked a really whacky observation on a wildlife forum, only to have numerous replies confirming what I had seen and telling me so much that I did not know. The really silly people are those who won't ask.

Thanks again and here's to a pain-free body.

15

Hello there You have had a struggle !! I was 54 when I first had PMR and though my bloods were very low my Dr was convinced I had PMR but wasnt allowed to prescribe steroids without a referral to a Rheumatologist as then there was a 3mth wait on the NHS I saw one privately after all the questions n answers and examinations and 17 blood tests !! to rule out anything else he said yes PMR He was a very experienced Rheumatologist I know so perhaps I was lucky It does seem pot luck sometimes if you get the right diagnosis and steroids are used to treat so many things I have a great GP and feel I struck lucky when I saw her as I hadnt seen anyone in the practice before ( I was well once ) My sister in law lives in Italy ( husband ENT) and thinks our NHS is terrible !! What do you think ?

I read a survey saying where they live (Emilia Romagna) that PMR was very rare so perhaps I should move !! Hope you continue to improve

16

Mrs G

Yes it is very rare in Med countries, because PMR mainly occurs in people with Viking/Scandinavian ancestry. Caucasians.

17

Thanks Mrs K!