PMR treatment without steroids

BettyE pansy57 · 2019-03-27T14:28+00:00

Pansy, if you have PMR then only steroids will give you relief from the pain and it's a shame that the downsides of steroids are at the front of your mind.

Nobody escapes all the side effects but, equally, nobody gets them all. You cannot be forced to take steroids but living with the pain of PMR won't do anything for your well being, physical or mental either.

You will be prescribed protection for your bones and I know from personal experience that osteoporosis is not inevitable. Weight gain is not inevitable either but it's a good idea to think carefully about your diet.

I hope you have a GP who is sympathetic and whom you trust. Speak to him/her about your fears.

It's good that you have found this site; there are some very knowledgeable people on here all of whom will share their experiences and give you encouragement on the down days and congratulations on the good ones. Keep coming back.

EileenH pansy57 · 2019-03-27T15:35+00:00

I do appreciate your fear - but this is something you need to discuss with your doctor. There is no good alternative to pred for PMR - unless you can access the biologic tocilizumab/Actemra but the potential side effects of that do seem to me to be out of proportion when PMR and the lowish doses of pred are concerned.

If you are concerned about pred side effects - I suggest you look at the potential side effects of NSAIDs. I have a friend who ended up in A&E after 3 doses of ibuprofen prescribed by her GP for PMR pain. And I can tell you from personal experience - they rarely even take the edge off the pain of PMR and do nothing for the stiffness. Their long term side effects can potentially affect the cardiovascular system and kidneys and the risk of gastric bleeding is quite high.

Neither weight gain nor osteoporosis are inevitable with steroids - at my last dexascan I had been on pred for over 7 years and my bone density had barely changed from what it was 2 months after starting pred. I gained weight originally with undiagnosed PMR, 5 years of it, as I couldn't . When I was finally given pred I did not gain any more weight but it redistributed to the usual places when I started pred. However, at a later date I moved to another country where prednisolone is not available and was switched to methyl prednisolone - then I gained quite a bit of weight and it didn't control the PMR symptoms for some reason. My GP switched me to the only form of prednisone available here - and I cut carbs drastically. I lost 35 lbs over the following year or so with the fat deposits around my face and midriff simply melting away. I could do with losing a bit more weight but I'd have to cut carbs more and at present I am maintaining my weight fine.

Please don't imagine that injections are a magic answer. They can be used for management of PMR very successfully and are included in the 2015 Recommendations for the management of PMR. But they also have side effects. What I can tell you is that different people react differently to the various forms of steroid - I have had no obvious side effects due to prednisolone (in the UK) and prednisone (here). Nothing at all. Most side effects of steroids can be managed and minimised when you know how. Bone density should be monitored - it should never get to the stage of causing serious problems and definitely not kill you.

But as I say - this is something to discuss in detail with your GP. And possibly request referral to a rheumatologist if pred scares you so much. PMR can be lived with - I did for 5 years but it was very hard and very painful. That alone does nothing for your mental health - I can tell you that - nor weight management. I became isolated and PMR itself is associated with depressive mood which got worse. But the worst is that untreated PMR is 7 times more likely to progress to GCA. And if that were to happen then you have a very stark choice: take pred, at a much higher dose than is required for PMR, or run the risk of losing your sight, So choosing to ignore PMR and not take pred is not a simple choice.

brian75018 pansy57 · 2019-03-27T15:41+00:00

Hi - I tried lots of alternatives before succumbing to steroids which made things 80% better immediately. However I was keen to get off them and tapered down as quickly as possible. Within approx 18 months I was able to do without them and this has been the case for over 6 months I think. Hopefully it won't come back (although it has never gone away 100% but nearly at times)

peggy_56092 pansy57 · 2019-03-27T15:56+00:00

I was prescribed Naproxen for undiagnosed ailments which I took for only a few days, and then Ibuprofen, which I took for a year before PMR diagnosis. 15 mgs prednisone gave me such relief. Unbeknownst to me, the NSAIDS gave me an ulcer which erupted during knee replacement surgery. The following year when I abruptly stopped taking a PPI for the ulcer I ended up in the ICU for two days. Stomach problems are life threatening.

Prednisone prevents PMR from developing into Giant Cell Arteritis (GCA) which can cause blindness. I am 80 years old, diagnosed when 76. My weight is lower than when diagnosed and can be controlled with diet. My experience is that hair loss will cease with lower doses. I am currently on 6 1/2 mgs after a few flares, reducing slowly. A 2017 Mayo survey found that PMR/Pred users were no more prone to side effects than those who did not have PMR with the exception of cataracts. It was guessed that PMR patients had more eye exams because of the GCA possibility. I had cataracts removed before ever having PMR. This study also found that the average duration of PMR was almost 6 years. Perhaps Eileen can give you the web site of this study and a more detailed explanation.

Harrie4 pansy57 · 2019-03-27T16:56+00:00

If you are diagnosed with PMR. and if they start you on 15 mg you shld feel immediate (24 hours max) relief. That will be good news for you. At least in my experience -- and I was dxed 3.5 years ago -- prednisone starting at 15 mg/da had 0 side effects. It is best to maintain an exercise regime -- maybe 40 minutes walking spread over the day, briskly -- and eliminate refined carbs. But you can still have a thin slice of homemade carrot cake or a piece of chocolate once or twice a week. There is a wealth of good info here to support you in your journey. Some of the healthy lifestyle choices will benefit your other chronic conditions too. You might even consider a diet geared to auto-immune disorders. Depression is often part of the A-I profile. Pls do stay in touch. You are among friends here.

Wishing you well!

patricia43291 pansy57 · 2019-03-27T17:39+00:00

Pansy,

I've been on pred for a year, and have not gained an once, although my face looks rounder, but that's good for the old wrinkles. I already had osteoporosis, before the pred. They gave me alendronate acid, for that, but stopped taking it after nine months, because of what I read about it. I have been faithfully taking raw calcium supplements, and a plate full of others for the old bones. Hopefully, I can get another dexa scan this year, to see if it has improved or not. Like Eileen has said, not everyone gets all the side effects. Good luck.

Silver49 pansy57 · 2019-03-27T21:58+00:00

Like you I was reluctant to start steroids because of the side effects. Yes, I gained weight, my hair thinned, my face had the Cushingoid look, the neck hump etc. . but it has all improved and my hair has grown thicker again. Today I had a routine eye test and in the almost 4 years I have been taking Pred there has been no damage to my eyes. That was such a relief to hear today so it's not all bad and we don't all get the side effects. A friend actually lost weight on Pred. I hope you are able to come to the right decision for you. As Eileen has mentioned it is best to discuss it all with your GP who will know your medical history

Healingjan pansy57 · 2019-03-28T21:30+00:00

My sympathies go out to you! About 8 years ago I was in the same position. I researched patient forums (not many) on PMR and found most people were not asking how to treat PMR, but how to wean off steroids. My research was alarming; with daily steroids for up to 4 years, which is what I was told was likely, I had a 2/3 chance to get a major permanent disease like osteo, or diabetes. I decided to avoid those and go to alternative medicine. I used homeopathy, acupuncture, wonderful trigger point massage from a massage therapist trained in that who could ease the trigger points without causing more pain, and many more modalities but I think those three helped the most. I also read in a French medical journal about a study that said if NSAIDs are enough, then they are a good choice for PMR. Later I discovered functional medicine and it has been a godsend, really boosting my health. I discovered that I had leaky gut syndrome which was causing all kinds of inflammation. I have been free of PMR for four years as measured by blood testing. Better yet, instead of having an immune system compromised by steroids (I read that they shut down your adrenals after only 2 weeks), my immune system rocks.

Best of luck to you,

Jan

Healingjan pansy57 · 2019-03-28T21:33+00:00

Also check the book by Audrey Pearson, My Four Year PMR and Prednisone Challenge.

PMR treatment without steroids

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Thanks for your help!