PMR and Prednisolone

[Maggiechris]

Hello everyone

I'm new to this site and was diagnosed with PMR last year since when I've been on a gradually reducing dose of Prednisolone. I've suffered with dizziness throughout which, I believe, can be a side effect of Prenisolone. However, when I get down to 3mg per day (twice now) I also get extreme fatigue and muscle weakness after minimum physical activity and can feel really poorly. I've then had to up my dose somewhat and start reducing again.

My doctor thinks the symptoms are down to long term use of the steroids and that I need to persevere and come off them, albeit gradually. I'm not sure. Withdrawal symptoms from Prednisolone are very similar. Or is it part of the PMR and should I be on a higher dose for longer, even though blood tests show inflammation is at a low level?

Anybody else experienced anything similar? Comments welcome!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome ,

you may think you’ve been reducing slowly, but it doesn’t sound like it to most on here.

As the issues seem to be a same level -3mg-then either that too low a dose for your PMR, or adrenals struggling-or probably both.

See this on adrenals - healthunlocked.com/pmrgcauk...

This gives difference between flare and steroid withdrawal -it is sometimes difficult to know what is what.

healthunlocked.com/pmrgcauk...

Don’t think GP fully understand PMR-unfortunately for you…

What dose are you on a moment?

You need to get yourself stable again -or as stable as you can and then reduce much more slowly-0.5ng s step and using a slower taper -will help your illness and your adrenals -see here for various plans -

healthunlocked.com/pmrgcauk...

[Maggiechris in reply to DorsetLady]

Thanks so much for that. The article on adrenals is very interesting. I'm not able to speak to my doctor until later this week, so am upping my dose from 3mg to 10mg in the meantime in the hope of some improvement. Will also ask him if it would be beneficial to speak again to the consultant who diagnosed me last year. My doctor is great and very caring but he can't possibly know as much about PMR as a specialist.

[DorsetLady PMRGCAuk volunteer in reply to Maggiechris]

Last sentence -maybe, maybe not..but probably easier to contact -and a good GP outweighs an indifferent Rheumy any day!

If 10mg works then you should be able to drop back down to 5mg after a week or so, then much slower. Just see how it goes…

Let’s us know how you get on please….

[piglette]

Sounds very much like your adrenals are complaining about being woken up. Minimum physical effort in my case is blinking. The deathly fatigue really took over! Personally I would hang on at the dose you are on until the situation improves a bit.

[PMRpro Ambassador]

If the speed you reduced at didn't result in a return of PMR symptoms that is OK. But now you are below 5mg, the next problem arrives - the adrenal function that was suppressed by the higher doses of pred must be given a chance to return. And that takes time.

If you are OK at 5mg there is absolutely no need to go back to the beginning. You need to get the symptoms under control and then from 5mg go much more slowly to allow everything its own time. You are already doing what I'd suggest - if 10mg sorts you out in a week to 10 days, you can drop straight back to 5mg and start again from there. It is low enough a dose to encourage adrenal function already and then creep down from there. If you get stuck at 3 again, don't try to force it, a top rheumy in the field in the UK , Prof Dasgupta, told us he often keeps patients at 2 to 3mg for longer as it reduces the risk of relapse.

[Hidden]

Sounds like a similar scenario to my own experiences of recent weeks, albeit with different symptoms manifesting. One thing you will learn very quickly on here is that a speedy reduction in pred is neither advisable or even possible in most cases, and sometimes if doc doesn't have the full picture we have to take the law into our own hands a little bit with regard to our dosage and reduction management. I've been back up at 10mg for four days - my decision not the docs - and feel fine again after flaring badly over the last few weeks so I'm planning to drop back down to 7mg the day after tomorrow and start a VERY slow reduction from there. I'm sorely tempted to try it from 6mg but the thought of another flare terrifies me, so best advice I think is to always err on the side of caution and go slowly. I would say I can't believe your doc thinks "long term" means from last year till now! It doesn't, not by a long way, but then I hear the same thing from my own doc so it's not really surprising.

[PMRpro Ambassador in reply to Hidden]

It is long term compared with most use of steroids which are rarely more than weeks. That is probably the biggest fight we have - their lack of awareness that PMR and GCA are different. No, years of pred isn't ideal, no-one ever claimed it was, but unfortunately, that is the mainstay of management for our particular autoimmune disease. There is an option for GCA if it relapses but even it is limited. There is no alternative for PMR. By refusing to use pred properly for PMR they are condemning patients to long term illness and disability which then becomes an even longer term problem as they lose condition because of the disability and pain.

[Keemo]

Ive been on prednisolone for fourteen months im like you every time I taper to about three or two im in pain in shoulders arms and back so have to go back up again back on five think im going to stay on these for a while see how I go ,

[PMRpro Ambassador in reply to Keemo]

That is absolutely to be expected - you were tapering to find he lowest effective dose and you appear to have found it at 3mg, maybe 4mg