I was rushed into hospital the autumn of 2016 when I seized up and couldn't move. Reactive arthritis was diagnosed and I was put on a short course of steroids. Them a few weeks later I started again and saw the rheumatologist as an outpatient. He was sure it was reactive arthritis again and said he'd inform my GP however he then wrote to me saying that after consultation with my GP he'd decided it was polymyalgia and that he was passing me back to the GP to manage my treatment. So just before Xmas last year I was
Started on a dose of 25mg of prednisolone. This was then reduced slowly at first with the GP taking blood tests for inflammation before each reduction however the reduction soon speeded up so that at the end of November I finished taking it,even though I have been in constant pain since about May and even though I have kept informing the GP.All he keeps saying is that l show no sign of inflammation. Now he only sees me at 2 monthly intervals.Eventually after much pressure I gave in and was put on a anti-depression tablets and, again after pressure gave in and let him refer me to a psychiatrist. It's no wonder I am depressed- I have lost over 3 stone in weight within a very short time,am in constant pain and can hardly eat. It has taken a great deal of pressing by myself,my husband,my daughter- a highly qualified ICU nurse, and my son for him to refer me for any sort of test. Now I've had an endoscopy which showed little, am booked in for an X-ray of my spine, have an appointment with the psychiatrist, and awaiting a clinic appointment with a consultant regarding the endoscopy. I believe the problem still to be that l taken off the prednisolone far too quickly. The GP admitted that reading the results of inflammation tests is - Innis words 'an inexact science'. Now I'm hoping that when I get to see the consultant concerned with digestive problems that he'll refer me across to the rheumatologist - as I live in Scotland this can be done. What more can I do? I've seen 2 other partners in the practice, but1 is his wife and he's convinced the newer younger partner I'm neurotic, I live in a very small village and there's only 1 other practice who, from what I've heard are no better. I really want to hear other thoughts on this as I've been reduced from a highly qualified professional to a complete wreck now unable to do anything at all.
Hello Porgi
I sympathise and empathise with your predicament totally! I have suffered from PMR since 2013. I have not been impressed at all with my treatment also. GP's all have differing attitudes to it. I hope that comparing what happened to me solves your problem - I suffered severe muscle weakness in my thighs and legs -sheer agony. The GP took me of the Pred (17.5mgm) by reducing 1mg A WEEK! Consequently, I did not feel well at all. It was too much of shock for the Adrenal Glands to adjust to. I lost a stone in weight and did not have an appetite The ESR reading then was 55 - so I had to go back on the Pred atarting at 15mg and am now SLOWLY reducing 1mg every 4 weeks. I am still suffering weakness and trying to exercise to keep the muscles strong. I feel that I have been let down by the Doc. I am to see a Rheumatologist in January as I do not feel confident with the doctors who seem to have a cavalier attitude to this chronic disease. One actually advised me to take paracetamol for the pain What a joke.
In your particular case when you show no sign of inflammation I wouid have thought trying Pred again on a low dose would help with your pain - could you not ask the Rheumatologist? There has to be a cause of the pain.
Unfortunately there is no other treatment but steroids for PMR.
Good luck and I am sure you are not neurotic - there are many of us out there suffering from this dreadful - although not life threatening - disease.
Gill
There’s info in this site, somewhere , for doctors, advising the proper management if PMR., I think it is a joint publication between the US and UK.
Print it out and bring to the dummy doctors.
Karenjaninaz is referring to this page:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
There are several papers, the Bristol paper, and EULAR guidelines (the international paper) and more.
Thanks Gillian. Re the paracetamol: I kept telling the doctor I was having to take paracetamol every day and it was having no effect on the pain. All he said was that's not a good thing.Eventually after months and with me crying and begging he prescribed codeine. When I said that I wouldn't take it as it made me very constipated and I was already having trouble, he prescribed senna tablets, when I believe the constipation is just another sign of the muscle weakness which he doesn't seem to connect with the polymyalgia. Now thanks to Eileen who answered my first post re another discussion my husband and I are writing to him to say that we want me to be referred to the rheumatologist who I saw when I had reactive arthritis. Unfortunately I was never advised to take regular exercise and the work I did was sedentary, although we live at the top of a steep ill in a small hamlet, I did regularly walk the dogs down and round the area going up and down the hills, which I quickly found I was unable to do.However had he advised a gym or regular swimming, which would have meant a round trip of 30 miles , I would have done that in order to prevent muscle wastage. He just doesn't connect my state with the effects of polymyalgia. Anyhow thank you, it helps to know I'm not alone.
Thanks, will do, thougI doubt he'll take much notice.
Thank Anhaga it saves me searching am relatively new to forums like this
Approach tactfully, "Doctor, I found this, I think it's really interesting, what do you think of it?" Not, "Doctor this is how I need to be treated". Or variations.
There is also a lot of info on the NE of England website - all approved by the patrons who are top rheumatologists in the field.
If I were you I'd contact the Scottish charity - their website is on the resources post too. Their helpline is listed and they may be able to help with suggestions.
Hello again
I thought that I would write again to you as I did not qualify my reply re the muscle weakness with the fact that I bought myself an exercise bike to help strengthen the hip and leg muscles. This was on the advice of a relative who is a physio. I bought mine from Tesco for £80. There are many different types out there but this is quite adequate. I was originally referred by the GP for physio - could not wait for this appointment ( which incidentally did not arrive until 4 and a half months had passed!).
I would have been helpful if I had known from the outset that steroids caused muscle weakness and then I could have done something about earlier like yourself. The pain of muscle weakness is very much worse than the polymialgia in my opinion.
Good luck again
Gill
Did the physio help and what type was it . I had hydrotherapy for a while but it didn't do much- too many patient with different conditions being helped by just one phsyotherapist
Forgot to say I've been referred for physio again and due to have a telephone appointment with therapist next wed-the27th to discuss my needs so any advice re the best sort would help. I'm thinking 1-1 and not in pool.
I didn't get any physio (or medication either if it comes to that) for the first 5 years of PMR. I got a gym membership at a gym with a pool when I realised I was really struggling at one without. They had aquafit classes every day - mine was an off-peak membership so Mon-Fri I went to aquafit. The earlier in the day the class, the better the day. Sat/Sun were noticeably worse. After the aqua class, done at MY level, not anyone else's, I was also able to manage Pilates and Iyengha yoga, both adapted for me.
If you can get access to a hydrotherapy pool - use it. One member of the PMRGCA charity team was a firefighter and training for marathons when PMR struck and put him in a wheelchair. He got hydrotherapy through the Fire Service and within 18 months was back running and climbing mountains. Men do experience PMR differently - but we are sure he benefitted greatly from the hydrotherapy at a stage when he could do very little.
Our hydro pool is very small and very restricted re use of patients. The Health Authority won't pay for it so a great deal of the time its let out to anyone - with or without a need - so there's no such thing as aquarobics etc. I've used t under the supervision of a therapist but there were too many patients with differing needs for her to actually give much advice re the type of exercise to do plus the majority of patients are there for exercise re osteoarthritis, and when I tred it when it was open for public use there was no supervision by a physio, just a life-guard and I found people with no need for it were usingit as a place to meet friends and chat; some had been going for over 10 years without any check as to whether they needed to use it.
That is appalling. At one point ArthritisUK funded a hydrotherapy pool in one region but were too precious aboutwho could use it. PMR, they said, didn't qualify as it wasn't an arthritis...
The gym I went to had a very warm pool - so it was ideal. I can't use a pool that isn't warm - so most pools are useless to me. OTOH - others who wanted to swim must have expired of heat stroke!
Is there any guidance on how much too exercise too maintain muscle strength?
What YOU can manage without leaving you sore and unwell the next day. The underlying autoimmune cause of PMR symptoms is still active, the pred only relieves the symptoms. In the background the disorder is still attacking your muscles and makes them intolerant of acute exercise. You can exercise - but you must start small and build up your "training" slowly - whatever level of fitness you had before - or you run the risk of suffering delayed onset muscle soreness for several days, if you have done too much it may last some time. Which is hardly the idea.
For some people it may just be a walk - which is enough for leg muscles for most people. But whatever it is - it has to be within your limits but you can build up to as much as you did before if you are lucky. Many who have done it say probably 70% of what you did before, after training.
Just dug out the steroid record cards from my handbag and found the following. I was started last year,two weeks before Xmas on 20mg prednisolone,a week later dropped to15 mg, then on the 28th December dropping to10mg, then dropping by 1mg every month apart from 1month when I had to stay on the dose longer,so then I finished taking it on the 30th of November. So obviously a too rapid drop even in the first month of starting. I have printed off the Bristol paper and am going to write to my GP including it. It was done in conjunction with Edinburgh researchers so maybe with the Scottish connection he'll take notice.
Don't know there were Edinburgh people in the group (never looked to be honest) but it was presented at the rcpe meeting. It has to be said that UK medics are very averse to anything that doesn't speak English - you'd hope Scotland was a bit more broad-minded...
Did I ask where you are? I lived in the Dundee area for many years and the nurse daughter is in Rosyth.