Raisin Bran

[RaisinBran]

I have been on Prednisone for the past 4 years and have successfully tapered down to zero twice, while being in so much pain, only to have to restart again. I am currently on 3 1/2 mg and have been tapering down to that level every three weeks dropping only 1/4mg at a time. I began this very slow taper while on 8mg.

I am very sore in my neck and both shoulders daily, something I have never experienced before. Has anyone ever experienced the inability to taper to zero successfully without pain. Are there some that have to stay on 3-4 mg for the rest of their life?

Thanks

[SnazzyD]

Oh dear. Your first sentence reads as though you successfully got to zero in that you got to zero but that you were in pain throughout. Is that what you meant?

[RaisinBran in reply to SnazzyD]

Yes, I continue to think that you must try and tough it out. Obviously not realizing that the goal is to manage the pain with prednisone, not be in a race to get to zero. It has taken me awhile, but I do understand now,

[PMRpro Ambassador]

Four years is not that long in the great scheme of things, especially when you have already forced your way to zero before the autoimmune disorder underlying the inflammation has burned out. Doing that and allowing in a flare, often makes subsequent tapering more difficult.

You are NEVER heading relentlessly to zero - you are looking for the lowest effective dose, the lowest dose that gives the same symptom control as the starting dose did. The pred cured nothing, it is a management strategy to keep the inflammation under control until the underlying cause has burned out and gone into remission. Then, and only then, will you be able to get off pred altogether without symptoms returning. It doesn't matter how slowly you taper, you won't get lower than that dose.

Your rheumy seems to have a desire to get people to low doses - that will happen when the PMR is ready and not before. We know that Prof Dasgupta has kept patients on 2-3mg long term as he discovered it reduced the risk of relapses. We've said it for years but very few need a low dose very longterm, for life. People still get off pred after 6 or 7 years and occasionally even longer. But it has to be said - the older you are, the less likely it becomes that your adrenal function returns fully and then you may need a bit of pred for that.

And please - can you put a title indicating your question/comment rather than your user name as that triggers Related Posts for you to have a look at and your name comes up automatically.

[Suedeshayes in reply to PMRpro]

Hi PMR, Does staying on a low dose still make us run the risk of osteoporosis and osteoarthritis?

Sue.

[PMRpro Ambassador in reply to Suedeshayes]

I'm far from convinced about the OA claims but I'd best not argue as I have no proof - other than I have no sign of a major poblem with OA despite 16 years on pred, never below 5mg and an accumulated dose that must be IRO 40g if not above, A sample of 1 is a bit meaningless. It was thought that once you were below 5mg the osteoporosis problem was also minimal until some physios wrote a paper saying they had found evidence of bone density loss at 3mg. There is accumulating evidence that the low doses still have other adverse effects but you do have to look at it in the round don't you? If you NEED pred for a good quality of life and to be mobile and pain-free, doesn't that balance out some of the bad? Without pred I'd probably be housebound and in constant pain - like I was pre-pred. I couldn't have lived independently and was quite depressed. Maybe I'd live longer without pred - but would it be worth it? Though I appear to have next to no adrenal function - 7mg is fine, 6mg is a very wobbly existence when the digital admin stuff comes up, like HMRC and other such entities!

[Suedeshayes in reply to PMRpro]

Thank you PMRpro, your philosophy on life with polymyalgia is something I share with you. Quality of life, as I get older, becomes more important than ever, and taking responsibility for our health in finding what supports us, is crucial. Thanks. Sue.

[MiniSpec in reply to Suedeshayes]

Suedeshayes, my GP told me several years ago that once you get below about 7mgs of Pred per day, then osteoporosis becomes less of a worry. This was at a time when I was taking Alendronic Acid on a weekly basis. I think he was trying to get me off the AA, but at the time I noticed that whenever I stopped taking them, my fingernails became very weak and brittle. So I kept on taking them for a couple more years.

However, I am now on 4mgs per day, and haven't taken AA for around 5 years, and my fingernails are as thick and strong as they were before I got PMR. So I would say that if you're worried about osteoporosis then ask for some kind of test every 6 months or so to check your bone density.

Other than that, I personally haven't found staying on a low dose of Pred to be a problem, and in fact only a couple of months ago I increased my dosage from 3mgs to 4mgs because I was getting PMR symptoms returning. Now I'm at 4mgs they've faded away again, so I'm staying at 4mgs and am happy to do so for the rest of my days if necessary. For me, 'Quality Of Life' is worth more than worrying about trying to please doctors by endlessly reducing Pred.

[PMRpro Ambassador in reply to MiniSpec]

There are no tests you could have 6 monthly to check bone density - dexascans are the nearest to telling you that and you only get them every 2 years at best, though even they are far from 100% certain as tangocharlie and I can attest. We have both had good dexa results but spinal compression fractures found, she has several, I have one.

[Sandmason]

I stayed at 3.5 several months, then 3.25 for a couple of weeks. Now on 3mg and finally not feeling much of the neck and shoulder pain and stiffness after 2 weeks. I plan to stay on 3 until February, unless all symptoms disappear, then try 2.75. I have flared so often the last 22 months that I don't feel remission is happening yet.

[Zebedee44 in reply to Sandmason]

By now you will know that PMR does not respect your chosen timeframe and that contrary to medical myth the condition does not go into remission in approximately two years. As PMRPro repeatedly tells every optimistic sufferer the management of pain/inflammation is by the correct dose of pred and this cannot be rushed by our self imposed schedule. The PMR will kick about in your system for as long as it likes. In my case I have tapered with no significant flares over eight years and am only now at 3mg. I am still aware that PMR has not left the building, despite my best intentions, lifestyle changes and playing the long game.

[Biscuitdarling]

I have had the same problem with tapering got down to zero but in so much pain I’ve had to go back to 3mg ! My GP insists on me tapering but I don’t see why he can’t just leave me alone! Why does he want me to be miserable & in pain ??

It’s cruel 😢

[Italybound62]

I had the same issue with my 3rd taper attempt. New types of pains in my arms emerged and I wondered if prednisone is causing other body damage.

My Rheumy put me on one of those monthly bone density drugs to prevent further damage as I have osteopenia.

I also use a weighted vest when taking walks to help build up bone density

I am now at 4mg again this time along with Plaquenil seeing if I can keep reducing but I agree with all the posts not to rush it.