UPDATE to is it a flare?

[Jayveedee]

This morning I finally had a first appointment with a rheumatologist after 6 months. Still in awful pain in my left hip which I’ve had all this week. However he has said he doesn’t think I do have PMR as you never get it just one side but always both sides (do you all agree with that?) He says I must come off Prednisolone before he can diagnose the problem so have to go from 15 to 10 tomorrow for two weeks, then 5 for two weeks, then 2.5 etc. I’ll be pleased to stop taking them but have read horrendous stories of side effects from coming off too quickly. What do you think, can I expect anything nasty to happen or should there be no problems if he’s right and it’s not PMR?

[DorsetLady PMRGCAuk volunteer]

He may be correct....but he may not.

But a fast reduction after being on steroids for 6 months does need careful handling....has he discussed the fact that your adrenals need to be able to recover during that period...and reducing too quickly could result in an adrenal crisis. You need to make sure you know what to do, whether that be by discussing with him, or your GP.

Maybe have a read through this post - covers all things adrenals - healthunlocked.com/pmrgcauk...

[SnazzyD]

Well, if the PMR is still there, it’ll come back but that’s the object and time will tell. You may get withdrawal symptoms where you feel anything from just feeling off to being achey, headaches, tired. If you are dropping fast, you might feel like this a lot of the time because as soon as your body has acclimatised to the new dose, you’re off reducing again. You might not, but just be ready for it and don’t make big plans. However, your Rheumy seems to have forgotten the possibility of your adrenal glands not being given a chance to learn how to work again once you get below about 7mg. They’ve been switched off above 7mg because the body has been swamped with the artificial form of cortisol (Pred) so hasn’t needed to work .they don’t always realise they need to get back to work once the Pred drops below what you would normally need on a daily basis. Have a read of this so you are ready for the signs of low adrenal function so you don’t get an adrenal crisis (sometimes called Addisonian crisis) by accident. The type of adrenal insufficiency we get after Pred is secondary not primary which is when it’s caused by other problems like a tumour. However, the result is the same.

healthline.com/health/acute...

[PMRpro Ambassador]

I don't think I'd worry down to 5mg - how long have you been on pred? But if it is PMR the chances are it will be back by then. Snazzy has covered the adrenal aspects.

I wouldn't go as far as to say ALWAYS bilateral - and you are on pred so it will be improving less inflamed bits more than worse ones. Was it bilateral originally?

If you have unilateral severe hip pain I'd be looking for bursitis - and it can be far worse on one side than the other. I would expect a hip x-ray to rule out other possible nasties.

[Jayveedee in reply to PMRpro]

I’ve been on Prednisolone since last September and no it was never bilateral. Started with pain in right shoulder and right hip. They both cleared up when took steroids and the problem this week has been my left hip with a different pain completely. As you say, it could be bursitis, rheumatologist is arranging for X-rays, but for my back, he doesn’t think it’s my hip!! Not very impressed. Thank you for you input.

[PMRpro Ambassador in reply to Jayveedee]

I shall mention my usual suspicion: myofascial pain syndrome could cause all of it. Been there, done that. Or to be more accurate - doing that! It is a component of my PMR but it originally started in its own right.

But with that info - I am not surprised he doesn't think it is PMR. Was it your GP who plumped for that?

[Jayveedee in reply to PMRpro]

Yes it was PMRpro, he said if Prednisolone stopped the pain it was PMR, and it did. It’s very confusing and I think I get more info here than from doctor or rheumatologist, but as it’s difficult seeing doctors and I’ve waited 6 months to see a rheumatologist I’m not sure what’s next. A glass of wine for me now!

[PMRpro Ambassador in reply to Jayveedee]

Ah no - would it were so simple!!! Pred stops inflammatory pain in a variety of things. Especially if a GP uses too high a dose. It is just a building brick in the wall of evidence - along with the TYPICAL symptoms and history. And one criterion is bilateral pain.

I'm getting close to the end of my dinner glass of rose ... Prosit!

[kulina in reply to Jayveedee]

I believe if Prednisone is the only one to stop the pain, then it's PMR. NSAIDs don't work on PMR but Prednisone helps with other aches and pains.

[PMRpro Ambassador in reply to kulina]

Yes, only pred helps with PMR. But that isn't the same thing - it also works for other things that ordinary pain-killers aren't as good at.

[SnazzyD]

Any chance your reply is for this post? Or am I doing a silly?healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to SnazzyD]

Funny - I just wondered that ...

[Kendrew in reply to SnazzyD]

Absolutely it was. Silly me! I feel really daft now. Sorry! How do I transfer it???

[PMRpro Ambassador in reply to Kendrew]

You can copy and paste into a reply over there - although just copying and pasting the link may not work and you will need to enter it again. Then delete it here

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Just copy and then repost where you want it…once that’s done you can delete reply here if you want -or just edit it to say what you’ve done.

[Kendrew in reply to DorsetLady]

Thankyou...think I've sorted it, fingers crossed. I'm at my sons for weekend and was being rushed to post!