Rheumatology

[Linbin1]

Having read several times on here, it would seem that most people have had regular blood tests and rheumatology appointment. I have been on high dose steroids for PMR, for around 2 years. I am gradually cutting this right down to 3mg. I have never seen a rheumatologist, my doctor doesn't think it is necessary. I have no idea whether my adrenal glands have kicked in, or indeed do I really have PMR. Any suggestions please.

[DorsetLady PMRGCAuk volunteer]

If PMR is straightforward many never see a Rheumy, so don't feel deprived... and blood tests for inflammation are a bit hit and miss, especially since Covid. Lots of doctors don't think they are necessary unless you are having a return of symptoms. But you should be having an annual blood review when all the usual things are monitored, BP, Cholesterol, Liver, Kidneys etc...

You would know if your adrenals aren't working at all, you'd be feeling pretty rubbish - but what you don't know is how well they are - and not likely to until you've been off the Pred from anything from 6 months to a year.

Have a look at this -

healthunlocked.com/pmrgcauk...

Why after 2 years are you querying that you have PMR?

[piglette]

The majority of people with PMR never see a rheumatologist. It tends to be people with specific problems and those whose GPs are not very knowledgable about PMR! If your adrenal glands have not kicked in at 3mg I think you would know it!!

[PMRpro Ambassador]

I agree with the others - a good GP is fine for patients with a relatively uncomplicated journey and if you have got from whatever you started at to 3mg in 2 years you probably do come under that umbrella. And as they also say - you would know if your adrenal function was having a major sulk. They should give you a bit of an MOT now and again but it is also something many of us tend to have to remind them about since Covid and the resulting problems in the medical world. The squeaky wheel in the one that gets the oil!

[Merryfield]

Never seen a rheumy. Luckily, my internist has had several patients with PMR, diagnosed it in a matter of three weeks and goes along with what I do re cutting down steroids. I have aches and pains in almost all joints. Going to get blood draw to see if I am in flare or just wearing out my body. Am at 6 mgs methylpred. Will cut more after Xmas if my aches are not a flare. Oy vay.

[Andos16]

I went to a rheumatologist but he was so narrow minded, black and white, wouldn’t listen to 4.30am Pred or 0.5 every two weeks rather than 1mg a month. I am continuing tapering with my gp and will only see one again if I have problems. Needless to say will be a different one!

[DogAgilityObsessed]

I didn’t see a rheumy until I’d been on pred for over two years and unable to reduce. I kept going back up to 15mg. Rheumy got me to do a rapid reduction (to about 6mg I think) to identify what was going on. Nothing happened. I think timing coincided with PMR going and I was able to continue slow tapers to 2mg and discharged from rheumy albeit with exercise therapist referral.

Then I thought adrenals not working as so incredibly tired. But it’s turned out to be GCA but that’s another story!

[whitefishbay]

I saw mine twice - a year apart. First apt he told me to take less and less pred until down to zero and the second meeting was to release me. I knew what was going on due to this forum.

[Hours]

same here only seen a doctor once, this website as seen me through it. Down to 1mg aday, Started June 2020.

[Linbin1]

Thank you everyone, really helpful