Wheening off Pred: I am getting closer to weening... - PMRGCAuk

PMRGCAuk

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Wheening off Pred

Pirnilla profile image
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I am getting closer to weening off Pred and my reumy told me about a speach on cortisone abstinence from an endochrinologist. He meantioned a period when you could experience feeling like flu coming up.

Does anyone have any science or information om how to avoid this? Slow taper I guess is important.

The second thing I have question on is the atrophy of muscle during Pred treatment. Does the muscle fibers recover after some time off Pred or do I have to live the rest of my life a bit weaker? I am 49 and hope to have some good, strong years left.

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Pirnilla
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PMRpro profile image
PMRproAmbassador

I suffered steroid myopathy during the short time I was on methyl prednisolone - its onset was rapid and dramatic. After several months I was switched to prednisone and I was able to start walking again - I was on crutches because of an achilles tendon problem due to a particular antibiotic and methyl pred being given together, My muscles recovered.

I'm afraid I would need more information what exactly you are refering to to comment on the other thing. If you have PMR you cannot know you are near to weaning off pred - you know you can when you have done it. Then and not before. From about 5mg down you are waiting for adrenal function to return - the only thing that triggers that is reduction in the dose of pred and the slower you do it, the less you will feel the effects. For some people it happens without more ado, for others it takes longer. You cannot rush the body - it will respond in its own good time. I suppose it is possible to describe adrenal insufficiency as being like flu - is that what you mean?

Pirnilla profile image
Pirnilla in reply to PMRpro

Thank you for your answer. Of course I can’t be certain that I am weaning off more than the fact that I have started my very long Journey from 0.625 to 0 last week having no symptoms yet.

My reumy just wanted me that I could get flu like symptoms as the feeling you have before the feber starts. Pain in the muscles and over all feeling sick. And she said that it could last for a longer period. I understand that it’s decieving as it could be taken for PMR and you go back to taking your Pred again to avoid this.

I am hopeful that I will get off, but also scared. What if I have a relapse or end up having cortisone abstinence for a long period.

Still so grateful for every day without pain.

Pirnilla profile image
Pirnilla in reply to Pirnilla

Though, when I read about the weaning off symptoms I guess that I may have experienced some of them already.

Last week I had a night of womiting without no clearing reason, I also sufflering from nausea which I thought was due to my really low bloodpressure. I read that low bloodpressure is one of the symptoms too.

PMRpro profile image
PMRproAmbassador in reply to Pirnilla

What would worry me far more than any "flu" feeling is whether your body IS making its own cortisol - and they can test that at this level of pred. Cortisol is essential for life and without it you are at risk of adrenal crisis. Even a very low dose of pred can be enough for your body to function - when you get to none, you have no cushion.

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