I'm curious to know why I'm experiencing some rather unusual symptoms 22 months in with p.m.r.Recently I have tapered very slowly down to 1mg of prednisone, and for the last two weeks have difficulty falling asleep at night, waves of nausea during the day as well as episodes of dizziness several times a day.
Perhaps it's adrenal involvement or something else.
It's all a bit vague, except I don't feel well.
Could anyone throw some light on this mystery 🤔
I'd be most grateful for any advice.
Thank you all.
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Brooklyn747
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I would say not adrenal involvement but NON-involvement with them not keeping up with the reduction in pred dose. Both high and low cortisol levels can lead to poor sleep but many doctors aren't aware of that. Nausea and dizziness are fairly usual effects.
Thanks PMRpro, your advice is much appreciated. I started on a low dose of 10mgs and was encouraged to taper quite quickly from the medics, and when I faulted I came to this forum for truly insightful advice and info. Thank goodness!!!I have weaned from 5mgs every 6 weeks by 0.5 mg with the odd hiccup. I thought that would be manageable but hit some bumps in the road which I feel are related to pmr/pred...it's difficult.
10mgs is skirting on the realms of simply not enough as a starting dose and using it means most people have already done most of the tapering to find the lowest effective dose. The doctors are so afraid of pred that they simply don't use it well.
That was reasonably slow but at the really low doses the adrenal production of cortisol doesn't shift gear instantly - look at SnazzyD 's stories of far longer for each 1/2mg and what she couldn't do.
I’ve suffered from PMR for more than 4 years and now and through a very very slow process of tapering I managed to eventually achieve zero prednisone about two months ago. So far I’ve ceased having PMR symptoms, thankfully.
In my case (and we’re all different I believe). When I reached 2mg it took some time to taper to 1mg - at least 6 months. Then on 1mg for a further 3 months. Fortunately I didn’t suffer any of the symptoms you unfortunately have. But I encourage you to persist. As another member mentioned your symptoms might well be caused by something else.
Thanks very much Paddy, I think your advice is sound. This disease is so difficult to deal with and I often get stuck. I will heed your words of wisdom.
So sorry you have experienced these symptoms. I am currently at 3.5 mgs, but have some hip pain at that level. At 4mgs, I am fine. So, the fine line is there. My doctor does not always talk about tapering. I am the one concerned about it.
Now that I have afib, I am concerned about everything! All these meds have side effects, but we must take them apparently. Could PMR have caused the afib? Some research has shown that to be possible. However, the doctor does not think so. It tells me we need to keep PMR at bay so other issues do not arise.
Hope this helps in some way. I would go back up a little also.
My PMR caused my a.fib - or at least, the autoimmune part of it damaged the sinus node in the heart that governs heart rate. And I definitely find that the a.fib is worse if the PMR is flaring, it is linked to the inflammation. The cardiologists agreed on both counts. I should have had an ablation today - but the doctors are on strike so it is delayed until January.
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Not sure if its really PMR
What's my next step?
PMR GONE.
GCA early signs , not sure
Has my PMR Gone?
