Update after weaning off prednisone

[Joblow]

Hello all- I’m 70, had PMR at 60 following shingles live virus vaccine; it lasted for 12 months, resolved, no problems at all until nearly 10 years later when I got it again. Once started on prednisone, symptoms disappeared immediately as they did the first time. This time though I had to continue ever decreasing doses of the steroid for 17 months, finally stopping almost 1 month ago. I do have shoulder pain some mornings when I wake but get up and move and they go away. I’ve got reserves of prednisone stashed in case of a reoccurrence, but so far so good: I’m back at hauling bags of mulch, raking, and throwing frisbees for my dog. Some day more will be known about our immune systems-the present coronavirus is certain to stimulate an immense increase in research. I know I have been lucky that my bouts were relative short. I’m not bragging, just offering hope for those still in the battle.

[PMRpro Ambassador]

Everyone I know who has had 2 bouts say they were very different. Hopefully it will stay away now

[Hidden]

🤞 it stays fast asleep.

[SheffieldJane]

It is helpful to hear. I hope it has done with you now!

[Jackoh]

That’s encouraging!

[Hidden]

That is very reassuring to read your story. I was diagnosed in Dec 2019 with PMR, then unfortunately once down to 8 mg GCA rose it's ugly head. Was prescribed 40 mg, two weeks on that dose, then 30 mg same for that one. I then took 22.5 mg for two weeks, but GCA returned. On advice from PMRpro I'm staying on 20 mg for a month....one week to go next Monday, (which is my 73rd birthday) I'm really hoping to drop by 2 mg and stay on that for another four weeks. Strange how you mentioned you got PMR after the shingles vaccine. I had the vaccine too, but PMR came on a year later, wondering if could be a result too. Will post and ask if anyone else thinks the vaccine could potentially be the cause of PMR...maybe in some, but there are a lot of fifty years old's that get PMR that obviously haven't had the shingles jab as it's only offered once we're seventy.

Anne

[PMRpro Ambassador in reply to Hidden]

It has been discussed many times - ususally comes up when flu vaccines are being talked about. The same applies in general, that it may have been the straw that broke the camel's back, but there is a link with the original vaccine, the one offered on the NHS, Zostavax. PMR (and shingles) are both listed as potential adverse effects.

If you would like to read the posts then go to this post of mine:

healthunlocked.com/pmrgcauk...

and looked at the related posts where you will find a lot about shingles and the vaccine.

[tangocharlie]

Interesting about the vaccine - I know we're not supposed to have live vaccines but don't know if that's because we have PMR/auto immune condition or because we're on Pred? I'm wondering if the Covid-19 vaccine when it's invented will be a live one in which case we're b*ggered? So glad you're OK now now, inspiring to hear

[PMRpro Ambassador in reply to tangocharlie]

Very unlikely to be live - if they manage to find one at all!

[tangocharlie in reply to PMRpro]

I've no idea - watched a prog on Covid on BBC 2 with the 3 doctors, Mosley, Van Tulekan and another and in the section about developing a vaccine said they didn't know if it would be a live one or not. It seems there are many people frantically working on things in the background and some of it started way before all this kicked off, we've known a coronavirus pandemic was imminent for years

[PMRpro Ambassador in reply to tangocharlie]

It's so infectious I think they are keen for it not to be live!