tapered off but what if....

[daworm]

I've tapered off of prednisone now after a little over 3 1/2 years, my start was 20mg...I went very slow especially when I got under 10mg...my question is, several times now I have felt I was having a flair up, so far it seems there has been no big flair up of the PMR, just other issues like OA and maybe adrenals not working so great, the question is: what would a proper dose of prednisone be if I felt the need to go back on for a short time to short circuit a flair up?? Prednisone works so well for inflammations that I wish It could be used "as needed' but no Dr seems to think thats a wise idea...?? I know you knowledgeable people can't give absolute health advise but I always like your ideas based on experience....

[DorsetLady PMRGCAuk volunteer]

You won’t really know until you try - but IF it is still PMR lingering as little as 1mg might do.

The problem is sometimes you aren’t 100% whether it is PMR or something else - and Pred shouldn’t be used as a general purpose painkiller. Try using another normal painkiller, if that helps it’s probably not PMR.

[PMRpro Ambassador]

Short term use of pred is unlikely to short circuit a flare. What sometimes happens is that the disease activity is so low that 1mg, even 1/2mg, ongoing is enough to keep things under control. Once you stop the pred that tiny bit of inflammation builds up - you know the dripping tap analogy - until it is enough to be felt. That can be in weeks - or months depending on how active the disease process is.

IF it happens - then a week of 5mg followed by trying 1 or 2mg may well be enough - if you went really slowly at the end of the pred taper then you can be fairly sure that a really low dose is enough.

[Bailybiscuit]

I have got down to 2.5mg pred but started to flare so went back up to 3mg for a week then tried again. 3 times I have flared and the last time quite badly. My Dr told me to go up to ,4 mg and 5mg if that didn't work. I don't know yet if it is but my rheumatologist sent me to have my adrenal glands checked and they are supposed to be ok. I am not supposed to go higher than 5mg now and have been on them nearly 8 years. I am on Imraldi and Methotrexate as well. I would have thought you weren't on too long that you couldn't go higher but I suppose you should ask your Dr if a small dose doesn't work.

[PMRpro Ambassador in reply to Bailybiscuit]

When you flare repeatedly at a similar dose that is a clear message you have got to your destination - the lowest dose that gives the same result as the starting dose. If you allow flares to develop and get into a yoyo situation with the dose, it often becomes increasingly difficult to get things under control and reduce again. A few of us have said this for some years - and finally a few top rheumatologists are agreeing with us. We don't know why it happens - but it does.

[Bailybiscuit in reply to PMRpro]

Yes. I was told I have A typical one by my GP years ago so she sent me to rheumatologist. I have been diagnosed with one type of arthritis after the other but my GP still thinks PMR. I haven't had the shoulder pains as bad for a while as it soon went before. I also think stress can cause it but GP says no. Recently my two sons have been ill a d in the last few days one taken to hospital and might have to have a colostomy. Imt sure the worry has made me flare worse.

[PMRpro Ambassador in reply to Bailybiscuit]

Of COURSE stress makes PMR worse and shoulder/neck muscles tight and painful. I sometimes wonder what world they live in!!! I've been in a permanent flare since OH was ill last year - and was daft enough to agree to reduce pred to have a PET-CT. I've really struggled since then.

[Thelmarina in reply to PMRpro]

What a pain - literally! You have experienced so much, and with OH ill no wonder it’s a struggle sometimes (all of the time?) Bloomin’ PMR, bloomin’ Pred, bloomin’ GPS, bloomin’ Christmas. To be fair, over here the departure of Dominic Cummings has meant Christmas has come early 😂🎄🤶 - a more pleasant stress. ❤️

[PMRpro Ambassador in reply to Thelmarina]

I loved the image of him leaving by the front door with the box! Was Santa coming in the back door ...

[Bailybiscuit]

I'd never get one. I have wanted an mri of my knee for 3 years but rheumatologist told me each time it was swelling because of OA. Suddenly he asked if I would like a new knee in January. I said that I wanted a scan to see what was wrong. He sent me to orthapedics and as an xray showed hardly any damage the Dr there said I could have an mri after I had completed physio. I was so upset I rang the rheumatologist nurse and she said "WEll you have got polymyalgia22 I'm not sure what that had to do with anything. Anyway I wanted my knee draining but she said not till after I had had the scan. Then she said to call the scan dept. I did and got the long lecture about back logs, then as I lived locally and could any time he offered one a week later. I got the results yesterday. There's no OA and as expected for someone with Rheumatoid arthritis. I am supposed to had Inflammatory arthritis. I had all this go on with my knees then since August trouble with very dry eyes. My Dr wanted to put me on anti depressants but I told her I'm not depressed, just want people to do their jobs properly.

[PMRpro Ambassador in reply to Bailybiscuit]

"I told her I'm not depressed, just want people to do their jobs properly." - quite. And does it ever occur to them just how depressing it is being in constant pain, even at a low level? And depressed mood is also part of almost all autoimmune disease ...

[Bailybiscuit in reply to PMRpro]

I know. I don't expect my GP or rheumatologist would put up with my knees for the years I have. They would have had something done privately. I realise I have probably had some sort of arthritis for most of my life but any blood tests have shown nothing and have always been dismissed. I only got taken seriously when I could hardly move with PMR and my now gp is very kind and really tries to help.

[PMRpro Ambassador in reply to Bailybiscuit]

Which at least is something - mine tried to tell me it was my age (starting at 51!) and depression ...

[Bailybiscuit in reply to PMRpro]

I think depression is used too much. They should deal with the problem not the depression it causes.

[PMRpro Ambassador in reply to Bailybiscuit]

I agree - but it's an easy cop-out isn't it?

[daworm in reply to PMRpro]

My Dr always is digging around to see if I’m depressed...he thinks many older retired people are depressed..true I suppose, I mean I have bad, glum crappy days but sure not bad enough to go on another horrible drug...not even close...he always says “well let me know”.....

[Bailybiscuit in reply to PMRpro]

Yes it is but I want to be fully aware what I am doing and not half drugged up so I don't care.

[PMRpro Ambassador in reply to Bailybiscuit]

On the part of the doctor I meant ...

[Bailybiscuit in reply to PMRpro]

Oh yes. I think with my rheumatologist it is with many things. My GP will say she will phone in 2 weeks to say how I am as she thinks I am depressed. I only said I was fed up with the way I have been treated by rheumatology.

[daworm]

I don't like being on pills but sometimes its necessary, the only pills I take now is the daily thyroid pill and OTC stuff when needed...but prednisone sure works great...I am going to try to find the article I saw b y a DR who said lower dose prednisone is safer long term than any of the OTC NSAids by a long shot...nsaids long term are pretty bad on the gut for one thing....it was a big long complicated scientific explanation about liver and gut processing nsaids vs prednisone, its related to OA and RA chronic conditions...

[daworm]

Low dose pred shouldn’t affect the adrenals though...

[daworm]

My advise to you would be stick with your nsaids, watch out for the hole in your gut, me, I’ll take the pred when needed, which I hope is never again☺️