Just be diagnosed with PMR
Posted , 4 users are following.
I am a 53 year old female with osteoarthritis in my knees for about 6 years. I have regular steroid injections to keep the pain at bay, but usually my appointments are delayed so Im in agony for a lot of the time. When I started feeling unwell in my joints and muscles a few months ago, and couldnt sleep for the additional pain - painkillers and tramadol have unfortunately not even touched the sides - I was sad to find that I now also have PMR on top of waiting for my knee replacements. I have read all sorts of stories about the side effects of steroids, and wondered, before my GP has organised things for me, does anyone have any innovative ideas on how I might manage my pain without resorting to steroids.
1 like, 8 replies
Nefret mandy40337
Posted
I entirely agree that painkillers don't touch the sides of the PMR pain and sadly I have never found anything other than steroids to relieve it. However, for various reasons (not all PMR) I have now been taking steroids for almost 14 years and I haven't crumbled yet. Not only that, I have a fairly good quality of life which is limited by the osteoarthritis, not the steroids.
The scare stories about any medications are always the ones which hit the headlines, but if you read any leaflet in any drug pack - even OTC ones - the list of side effects is always worrying. Paracetamol is not without it's side effects and is often far from the innocent medication they claim it to be, or ibruprofen or even aspirin.
However, no-one is going to get all the side effects listed and some don't get any - as with any other drug in the world. Neither PMR or steroid taking is one-size-fits-all, on the contrary it will be as individual as you are.
Have a look at the pinned threads at the top of this forum page. There are other sites to visit and learn from and there are a couple more forums where you will get support whatever you decide to do.
mary68968 Nefret
Posted
Just a few thoughts. I had hip replacement about a year and had a surgeon who did the anterior vs. posterior surgery. Please google them & see the differnce. It is a thousand times easier surgery & my recovery was very fast. Also I have had cortisone knee injections, but just after hip surgery I had synvest injections (it's a filler) & have had had to go no further. My aches & pains have gotten better with predisone. I know of no other drug than predisone if you have PMR, but some of your other pains may not be as painful afterwards. That has been true for me. My knees have been fine & did not require surgery. Good luck.
Nefret mary68968
Posted
Thank you for the information, I'll have a google!
erika59785 mandy40337
Posted
Unfortunately, only steroids take the awful pain away. I tried alternative resources, but they have not helped. I do take calcium, magnesium, vitamin D, also vitamin C daily to offset the problems wich Prednisone will cause on a body and joints. Magnesium Citrate (capsules) helps for sleep and relaxes body and muscles.
You are VERY young to have to endure this! I am 74 years old, and my PMR did not start until just recently. I had ----and still have to deal with RA----which is not quite so debiliating than PMR!!!!! I hate it.
I hope your GP can guide you through this!
All the best,
Erika
Nefret mandy40337
Posted
Even the medics agree that the onset is apparently earlier these days. I say apparently, but I know that until very recently PMR was considered to be an 'old person's' disease and I suspect that the 'rheumatics' complained about by my grandmother's generation was PMR and its other friends in autoimmune conditions. It's only now that the generations have caught up and are able to express themselves and are sceptical enough to not believe that the Doctor knows everything. Certainly my grandmother thought the doctor was God and what he said went!
We are finding that we still need to educate the medics on occasion but we are beginning to win and there is more research being done in the background than ever before. Not one of us likes, or wants to take, steroids but they are still the only effective medication and we are trying to solve that problem. Just haven't quite got there yet!
erika59785 Nefret
Posted
Thank you for your input, Nefret.
Erika
mandy40337
Posted
EileenH mandy40337
Posted
If you follow this link you will find the first post in the thread gives you further links to useful sites and another forum. The final link is to a paper aimed at GPs when managing PMR. Further on in the thread (posts 4 and 5) is the reduction schme I and many others have followed successfully to get their pred dose dose far lower than with any other type of reduction.
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316