Is my pain caused by the return of PMR or can it be the medication I am taking?
Posted , 9 users are following.
I am 12 months into my diagnosis of PMR and down from 15mgs Prednisolone to 7mgs. After 3months without pain and down to 11mgs I began again to suffer the symptoms of PMR, however a blood test revealed the PMR had gone and my doctor advised me to continue reducing the Prednisolone.
Now I can hardly walk, I have suffered severe back pain for the last 10 weeks for which I am taking Ibuprofren and pain killers (which don’t do anything only allow me to sleep for perhaps a couple of hours). My right arm is back to its pre-diagnosis uselessness and my knees have started causing pain.
I know that PMR can return and for all I am told it has not, and incidentally being refused another blood test , my question is.....can prednisolone or/and Ibuprofen prolong and heighten pain in areas such as my back? If this is the case – has anyone the answer to get me back on my feet, please?
1 like, 39 replies
EileenH
Posted
And I have just noticed that you are returned to the beginning of the thread after posting - since it is helpful to check the post went in OK and the end hadn't been chopped off it would be nice to be returned to the END of a thread, to your own post. That also allows us to see if other posts have been posted in the meantime as has just happened to me, a few other people were online at the same time and there were 3 or 4 posts above mine which weren't there when I started to write my response.
Eileen
Emis_Moderator
Posted
I will post with full details later but changes are coming soon including preview box and going to the end of a thread when posting. Editing posts once posted will be a future request but I'll check above and edit any typos I see.
Alan
juanylou DaisyBee
Posted
I found your post while doing a search on PMR. I was diagnosed four years ago by a muscular neurologist after a rheumatologist did blood work and said I didn't have PMR. My MN doc said that you can't diagnose PMR with blood work, it requires a muscle biopsy which he scheduled immediately and the prednisone began right after biopsy surgery. I started at 30 mgs and my doc wanted me off inside of nine months. That didn't happen and I'm doing really well at 5 mgs and my health is so much better that my doc now is fine with me being on prednisone indefinitely. I've tried to go as low as 2.5 mgs but after a couple of weeks I can't lift a carton of milk. I just went back up to 5 mgs a couple of weeks ago but I'm having horrible back pain only at night while one bed. I came here to see if that's one of the symptoms of PMR since my prior symptoms were muscle weight and severe strength loss but no back pain. Or is it just that I am getting old (56?).
i wanted to reply to you since your current diagnosis of no PMR could be false since it's only being done with blood work.
My doc and the prednisone have saved my life.
EileenH juanylou
Posted
Has your doctor considered the possibility of another form of inflammatory arthritis? Nightime back pain is characteristic of ankylosing spondylitis and it does sometimes present with a polymyalgic onset. Nocturnal back pain should be ringing alarm bells on the part of your doctor.
While I am sure you have great faith in your doctor as he seems to have managed you well - he is the first person I have heard suggest that muscle biopsy is required for dx of PMR. It IS required to differentiate between inflammatory myopathies (where myositis is seen) and PMR - but there are also other tests that are positive in those cases. It doesn't really matter in that the treatment/management is the same: pred. It tends to be of shorter duration than PMR where at least 2 years of pred is required and some 30% of patients still require pred after 6 years. That alone suggests to me your doctor was perhaps confused if he expected you to get off pred in 9 months.
About 1 in 5 patients with PMR does not have elevated blood markers - in that case the diagnosis is made on the basis of clinical presentation and response to pred. But there are a lot of doctors who don't seem to be aware of this - or simply don't believe it.
Although the thread says "over a year ago" it is actually over 4 years old - judging by my post above! So whether anyone else will reply I don't know.
juanylou EileenH
Posted
Thank you Eileen. I just found this chat room today so my post is brand new, not several years old. You are so helpful. I didn't realize nocturnal back pain was a thing. My hubby wants us to get a new mattress but I've traveled recently and the pain was the same with three different mattresses. Once I'm up and shower it's gone. In reading some of the posts I thought I'd try taking 2.5 mgs of prednisone in the am and then 2.5 before bed to see if that helps. I just worry about the energy I get from it and worry I won't sleep. Thanks again for your note.
DaisyBee juanylou
Posted
Hello Juanylou
I wrote the request many years ago at the start of my ill health. I was given a diagnosis of Polymialgia and put on Prednisolone which was the worst mistake of my life. After approximately a year I was told I didn't have Polymialgia and I came off the drug but not before I had suffered 3 fractured vertebrae and degeneration in my hips.
After researching my symptoms on line my doctor agreed it was more than likely I had Fibromyalgia and this was confirmed in 2015. I am still trying to control my symptoms and always will be. I am 77 now. I take 2 Tramadol a day to control the pain plus Paracetomol when needed.
I am so glad I gave up Prednisolone, I hope your bones are being monitored regularly as they should be when taking this drug. Very best of luck to you.
juanylou DaisyBee
Posted
Yes I get a bone density test annually. Doing very well. I'm so sorry for all that you've gone through.
DaisyBee juanylou
Posted
Thank you for empathising with me. When it started for me no doctors, nurses or consultants knew about it and until recently the only help was on the internet but there has been a huge rise in understanding in the past 6 months.
The only thoughts so far as I know on rhe cause is that trauma may trigger it in some people, mostly women, and I'm sure that was the cause for me.. Certainly stress, anxiety and simple things like the cold make it worse and days have to be planned in order to NOT suffer badly the following day.
There is a brochure from the Arthritus Research UK specifically for Fibromyalgia that may be useful to you. I wish there had been such a thing 5 years ago for me. Best Wishes.
EileenH juanylou
Posted
I've been on pred for nearly 8 years - my bone density has hardly changed and is still within acceptable range. Only about half of patients on pred develop osteoporosis and they would probably have done so anyway - about half of the population develop it even without being on pred!
Trauma is just one thing of very many that affect the immune system - infections, emotional, mental and physical all do. Eventually something tips the immune system over the edge and it goes haywire, attacking body tissues in error.
There is one fundamental difference between fibromyalgia and polymyalgia rheumatica. PMR is due to inflammation and the syptoms of pain and stiffness will respond to prednisolone as it combats the inflammation. Fibromyalgia is partly a problem with pain perception, there is no inflammation present and so it does not respond to pred. It is possible to have both though and most people who have both can tell which pain is which. However - if pred doesn't work to improve the pain and stiffness the diagnosis should be questioned, just to be sure.