Unpredictable stages of recovery: This is good new... - PMRGCAuk

PMRGCAuk

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Unpredictable stages of recovery

Kaaswinkel profile image
6 Replies

This is good new story. We need those as well.

PMR from May 2018, with severe tired ness. About a month ago, when I was on 1 mg prednisone the tiredness went away, mostly, as if the PMR is working it’s way out. Had tried to diminish from 1 mg, prednisone, gradually, to 0.5 mg with little success so far. ( had been on 1. G from about jan 2019). I tried again this week, and have been able to diminish to 0.5mg for four days in a row, without too much hassle. The main pain I have is an arthritic neck. Not the PMR. The prednisone helped that so now at about four pm. I make a strong coffee with cardamom grounded, 500 mg paracetamol and one nurofen (nsaid) which makes I manage it. My blood pressure had been up with the prednisone and is now coming down also because I can do a lot more exercise now. all very time consuming but, I feel it helps the whole condition. I do realise that many of us cannot go for walks, which is awfull.

Just to say, don t get impatient with the pmr, it certainly does its own thing, but challenge it every now and then to see if and how you can diminish your meds. Or not.

You might use the slow slow slow method, but in my case I could do it differently, I think it depends on the person and the time and stage of the illness. And I know ....it is only been 4 days. I just feel better, different.

Many good wishes for all of us. Never give up hope. alida.

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Kaaswinkel profile image
Kaaswinkel
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6 Replies
SheffieldJane profile image
SheffieldJane

Thanks Alida! We certainly do need good news stories. Thank you.🌸

powerwalk profile image
powerwalk

Thanks. Hope you stay good.

scats profile image
scats

That's lovely to hear, especially as my brother said more or less the same thing. Within days he felt different, then he remembered it was how he felt before pred.

There's hope for us all.

Kaaswinkel profile image
Kaaswinkel in reply to scats

That is interesting how your brother described that....I am not quite at that stage yet, because of a sore neck, but that is a different issue. And I know that even with a bad X-ray as mine is, the symptoms usually come and go, so I just stick it out. I don t expect to be on 0.5 pred. all the time and will take a bit more or a bit less as my body dictates. It is just sooo strange that for six months I could not diminish the dose without giving myself a lot of pain.

bunnymom profile image
bunnymom

Hope it continues for you. Light at the end of the tunnel 🌞

Kaaswinkel profile image
Kaaswinkel in reply to bunnymom

Thanks that is lovely.

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