Hi, Hopefully I won't bore you too much with my situation but here goes. I have a prolapsed disc in my Cervical spine and another in my Lumber Spine. I had 2 laminectomy's on my lumber a long time ago. 6 months ago I was diagnosed with Ostepophites and Arthritis throughout the spin. Shortly after that I was diagnosed with Polymyalgia Rheumatica. I have been on Prednisolone 30mg daily for 6 months and absolutely hate the side effects. The worst for me is the weight gain and the sweats. I have put on nearly 3 stone in a very short time and am really struggling to deal with it. Hopefully I can start reducing the Preds soon and shed some of this weight as its just adding to my spine problems. The pain and mobility difference since starting the steroids has been nothing short of a miracle but I still hate the side effects. Thank you for letting me join the group I now know I am not suffering alone.
The story so far: Hi, Hopefully I won't bore you... - PMRGCAuk
The story so far
Welcome I hope we can give all the support you need, you do seem to have more than your fair share of problems.
You're in good company as none of us here like the side effects of pred. I've been lucky and not had the night sweats but weight gain I can relate to. The increase is gradually going as I reduce the pred but not fast enough for me. Cutting out carbs has helped a lot but most days it's just reducing carbs as I do like toast for breakfast!
Hi Scats, Thank you for your reply. I wish I new the reason I eat more it seems ridiculous. Even while I am doing it I know its wrong but still don't stop. I need to develop more self control somehow.
I actually ate less on pred but still put on pounds, I think it's fluid retention but I'm no expert. I think it's more usual to have an increased appetite.
Welcome to the 'club' sounds like you are having a rough time. The weight gain is bad enough but with your spine problems, it must be so much worse. The experts will be along soon I'm sure with good advice, but can I just say that to be on 30mg for 6 months seems a long time at that dose. Is that because you've had trouble tapering? All the stuff I've read on here, myself included, usually after 6-8 weeks you start to taper.
I think I've been on this dose for so long is that they are not sure if we have completely sorted the PMR yet. I'm still getting problems with muscles in the upper back and the GP thinks this is still the PMR Its hard to decide due to the other spine problems. I'm having a blood test tomorrow to check for the inflammation levels which should help the GP to decide.
Hopefully at your appointment tomorrow you can show your doctor the information our experts have shown you today. Good luck 🌹
Thank you It can't come soon enough for me.
Hi,
And welcome.
As Hollyseden says to be on your starting dose for so long is very unusual. Normally 4-6 weeks to get a grip of the built up inflammation (30mg is also at the high end for PMR) and then a slow taper. Is there any particular reason why you’ve been kept at 30mg?
Have a look at this, it may help you understand your illness a little better -
healthunlocked.com/pmrgcauk...
Thank you Dorset Lady.
That is a very interesting read. As I said in my reply to Hollyseden They are still not sure if the PMR has been controlled properly yet but the blood test tomorrow shold provide more information. Than you both for your replies. It is much appreciated.
Actually the PMR is not controlled - it’s only the inflammation caused by the PMR that is controlled. That’s what the blood tests check, and on 30mg it certainly should be. But you still have the underlying PMR, nothing stops that- only time! You just have to find the lowest dose of steroids that controls the inflammation/pain until such time as the PMR goes into remission.
Why on earth have you been left on 30mg pred (which is a high starting dose of PMR anyway) for 6 months? You should have been told to start reducing the dose after a month or so. If 30mg for that long isn't sorting the "PMR" or if you can't reduce from that level then it must be considered that it isn't PMR at all and you need to see a rheumatologist specially since I'd say whoever you are seeing (your GP?) hasn't a clue. It isn't difficult to find details of how to go about managing PMR - except I suppose they do have to admit they may not know...
This is an article written by an expert to help GPs manage PMR:
rcpe.ac.uk/sites/default/fi...
The pred doesn't "cure" the PMR - it manages the inflammation that is created by the underlying autoimmune disorder that causes the symptoms we call PMR. PMR is a chronic disorder with a median duration of 5.9 years - so you are never taking a high dose of pred to knock it out and cure anything. You reduce from that starting dose to find the lowest dose that will manage that daily dollop of inflammation to allow a decent quality of life in the meantime. It's a bit like deep spring cleaning then just dusting and hoovering to maintain the order!
Cutting carbs drastically not only helps you avoid excessive weight gain, it should also remove the hunger feelings and reduce the risk of developing steroid-induced diabetes which becomes greater if you gain a lot of weight. I gained a lot with PMR and then it redistributed when I started pred - but I lost it all by cutting carbs.
It seems that this is a very misunderstood condition by a lot of GPs. In my case it is really difficult to separate the pain caused by PMR and the pain caused by degenerative disc failure. Since being on Pred the normal pain level from my known spine problems has lowered but if i try to do something a little bit too strenuous I pay a heavy price by being immobile for a few days. It really is hard to determine the cause of my latest problems. I have learned so much from this site in 1 day already and will be searching the posts for anything similar to my situation. I'm 62 and until the onset of this I was leading a failry active lifestyle, well as much as possible with the spine problems I have and its very difficult to accept that I must change but i will have to. Thanks again for your help
You are so right, in that PMR is misunderstood by many GPs, and of course not helped if you have other issues as well. I guess you are taking other painkillers for your spine problems, but the steroids will also mask those pains at the level you are on. But with time you should be able to differentiate between what is PMR induced pain and your spine.
You can still enjoy life, but maybe in the slow lane for a little while, you certainly need to learn to pace yourself - and I think for most of us that’s difficult!
Yes I'm on Tramadol for the analgesic as well as Amitriptyline for the neuropathic nerve control. I've been on both for many years but would really like to get off the Tramadol as i'm not sure if i'm taking them to feel normal or to feel high. I've forgotten what normal was like. That side of it is well controlled its just the confusion over the PMR. I will update when i've had the results.
I started on 30 mg daily for PMR eight years ago. Have you tried reducing by say 5mg. It took me 7 years to reduce to zero. I got down to 10 mg after a couple of years, hard to remember now, I had several flares reducing too rapidly. The best judge is yourself, how you react, how painful etc. Best of luck.
Regards,
Frank.
Thank you for the reply. I am having a blood test in the morning to determine if the inflammation is under control. If it is then I will ask my GP to allow me to reduce the preds. I do know that it isn't a cure but just a drug to control inflammation, and I also understand that it may or may not go away on its own. Only time will tell. To be honest the doctor was adamant that I didn't have PMR . I had done the research and the symptoms I was getting couldn't be anything else. He only sent me for the initial blood test to prove I didn't have it. After the results came back it was obvious that I did, and the Treatment started straight away. Thank you for your support.
It takes time to reduce, but most of us through careful management of the taper do manage to get the dose below 10 mg, even if it's hard for some to taper lower than that for several years. The side effects below 10 are much reduced, and below 5 barely noticeable.
Thank you I will suggest this to my GP when the results of the blood test are back.
I thought I might write an update to my story so far. I did try to reduce the pred but went much too quickly for me and by the time i got from 30mg down to 22.5 i had a really bad flare up and panicked. I went straight back to 30mg until the syptoms cleared. Since then i've managed to get to 20mg without any real problems. My GP has referred my back to a Rumy (twice actually as he sent the first referral to the wrong person.) I'm awaiting an appointment. The reason for the referral is that as I have so many musculatal problems its sometimes hard to know at what lever the MPR is at the moment. I put on a lot of weight in the early months and I am now learning to control this. I have stopped gaining and am now loosing slowly. Without any doubt my improvement is due to the help and advice from the knowledgeable people on this forum. I new nothing about PMR when I first joined but have made it my ambition to learn as much as possible in the hope that one day I may be able to help someone as I have been helped myself.
Thanks again everyone and ill let you know when I get down to a reasonable dose.
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