Q. about under 10 mg and can PMR burn itself out? - PMRGCAuk

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Q. about under 10 mg and can PMR burn itself out?

Mayadill profile image
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Last summer, I was way down, with no problems, 9, 8, 7, 6, 5, 4 mg. It’s only with hindsight reading this site I realize it could be usual to have had adrenal probs. Joy yet to come?

What’s going on now is October onwards numerous miseries following the Moderna jab culminating in hideous flare Feb/March, all the symptoms of at diagnosis, almost as bad were it not for the Pred. Started reducing with extreme caution, but 14 fine, 13, fine, down to 9, sure I’m fine, apart from a bit tired, and my feeling is this has totally zero to do with any clever tapering and everything to do with the PMR receding. My impression is very much that the PMR is dwindling down to the low level it was at before the vaccine, that 'it's given up', basically. Can it do that, have a last hoorah, then go away?

Lastly, although I was fine symptomatically I did at around 13 mg experience The Great Inertia. Oh, is there a tissue on the floor. So? Do things? I do not understand your word ‘do’. Is it remotely possible that at 13 mg that could have been the adrenal stuff?

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Mayadill profile image
Mayadill
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PMRpro profile image
PMRproAmbassador

It is possible but very unlikely - even 2 or 3 mg is considered by experts to be enough to cover adrenal requirements and it is rare to suffer until below 10mg.

The same applies to PMR - the underlying autoimmune problem that causes the inflammation and so the symptoms does vary over time, ramping up to cause a flare at times as you have experienced. Most flares are due to overshooting the dose while tapering but when something pokes at the immune system - can be another illness, a vaccine or anything affecting the immune system - then it will calm down again and you will be able to reduce the dose again. But you can only tell the PMR has burned out and gone into remission when you manage to get to zero pred and stay there without a return of symptoms for 6 months or so. If the underlying autoimmune disorder is at a very low level of activity, as little as 1mg, even 1/2mg, can be enough to keep the inflammation under control and you symptom-free.

SheffieldJane profile image
SheffieldJane

It is unlikely that your inertia has anything to do with your Adrenal System. At 9 mgs your body is swamped with useable cortisol. However, I can so relate to your wonderful description of the huge general malaise that can possess you at any stage of the disease. I am experiencing it currently on 4.5 mgs, following a perfectly normal Synacthen result ( Adrenals). I also trust the feeling that the disease is receding. I think we need to be patient, use DorsetLady’s tapering plan and go down in half mg drops every 4 weeks. These are significant, systemic diseases that really take their toll. The vaccine was a further assault on your immune system. I have mine in a few days. I hope it doesn’t trigger a flare. Good luck!

PMRnewbie2017 profile image
PMRnewbie2017

I caught Covid in June 2022. I was taking 4mg at the time. For several months afterwards i felt that my PMR had miraculously disappeared. I upped my Pred to 9mg and took Paxlovid following sick day rules. I felt terrible with Covid symptoms but relieved to have no PMR aches . Nearly 12 months on, i realise the PMR had not gone. It was the increase in Pred which made me feel better. After over 5years I have learned that anything can spark a deterioration which may or may not result in a full flare. Differentiating between a relapse and secondary Adrenal insufficiency AI is often very difficult but personally speaking, because Prednisolone is more potent than natural cortisol i very much doubt your inertia at 13mg was due to insufficient cortisol/ pred in your body. I was down to 1.5mg but now back to 2mg. I still gain significant benefit from 2am dosing which tells me that I'm still producing enough IL6 at 4am ish to give me aches which are not only due to AI.

Any auto immune illness can spontaneously go into remission in theory but even if it does, because PMR patients are longtime users of Pred, we still have to deal with the AI issues and reactivation of our HPA axis, and all that that involves.

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