Mipsie

[Mipsie]

It seems that there is still a lot to be found out about pmr. I have several acquaintances who have never had a relapse. I wonder if some people’s adrenal glands just give up?

Re. blood tests,mine have never since initial test been positive which gave me the feeling that I was just being hypochondriac and wasting clinical time but the pain is real.

[SheffieldJane]

I believe that a significant percentage of sufferers never show any blood abnormalities at all and are diagnosed purely on symptoms.

I have never had a true flare but have been stuck on 7 mgs for some months and that is the dose where our own Adrenal glands need to start working. I am starting a slow taper in the hope that I can get to 6 mgs and stimulate my own Adrenals into action.

[DorsetLady PMRGCAuk volunteer]

Hi

As Jane says not everybody has raised blood markers - just answered same to Tulabula - symptoms are the key -always!

My journey with GCA - no flares! But it took 18 months to diagnose, meant I lost sight in one eye and started at 80mg - tapered slowly and I mean slowly - but it can be done. That’s if your doctors don’t get in a panic about steroids which they inevitably do and try and rush you off them.

Only side effects from Pred (on for 4. 5years and took considerably more than is probably the recommended accumulated total) - slightly raised eye pressures, slightly raised blood pressure - both back to normal as doses of Pred reduced. Cataract - successfully operated 2014. Some weight gain, now lighter than I have been for years.

Some people’s Adrenal glands do stop functioning - but not many- a lot more do take time to get back to 100% working, but that just takes time!

[PMRpro Ambassador]

A few people have problems with adrenal function but the vast majority are fine if they reduce slowly enough. However - I think a few rheumies I have spoken to have been surprised how many people there are with adrenal insufficiency after long term pred treatment! They thought it was vanishingly rare - it certainly isn't.

And as I just said on another thread: some people who are still on pred just don't develop raised markers despite symptoms appearing.

[piglette]

I reckon the people who do not have relapses also have good doctors to support them.