Advice please?

[Joannarosa]

Hi friends - thank you all for being here and being so generous with your advice and support. I'm not expert enough to give any information or suggestions to others, and right now I am badly in need of some guidance from people with more knowledge and experience than me. I'm feeling close to the end of my tether.

In short: PMR for 4 years, cant get the prednisone below 13mg, 4 DMARDS tried with no result. Horrible flare 3 weeks ago, roving inflammation and pain all over, rheumatologist is wondering about the PMR diagnosis, said to up the prednisone to where it controls the symptoms, and then start on my choice of 2 biologics, adalimumab or etanercept.

I increased to 20 mg - no improvement after 5 days, so up to 25 for a week. Some improvement...but not huge. And the effects of a bigger dose - sweating, shaky hands, weak legs. Down to 20mg yesterday and feel terrible - weak, exhausted, dizzy. I can hardly function and I dont know what to do. Should I reduce slowly from the 25? Increase to 30? Is that why I'm even worse today? I dont know what to do and I feel absolutely trapped and powerless.

I'm hoping someone has some words of advice...

[Capprice]

Can't offer support or guidance Joanna but sending a tight hug ❤

[Joannarosa in reply to Capprice]

Thank you! That really does help 😊

[PMRpro Ambassador]

There is increasing backing for the concept of a form of PMR just as you describe and once you start messing about with a dose of pred that works you end up with problems.

"roving inflammation and pain all over" - what do you mean by that? Hot and painful joints? Or what?

And why have they decided to start on anti-TNF biologics without totally refuting the PMR diagnosis?

By the way - EVERYONE who has PMR symptoms has something to add to the discussion, even if it is "just" how they deal with something.

[Joannarosa in reply to PMRpro]

Thank you !

As far as the drugs go he seemed to be saying that this class of drugs is justthe next medication option, since the other DMARDS havent worked and I cant get below 13mg Prednisone. He mentioned seronegative RA as a possibility, but I do not have joint pain or swelling anywhere, so this makes no sense to me. I'd be interested to know about the other sort of PMR you mention?

The roving inflammation of soft tissue - I think tendons - went on for several weeks and it took a while to realise they weren't isolated individual episodes. It started with each elbow in turn, then one groin and the other, then the top of one foot, then the Achilles and the ankle of the other...no trauma involved with any of this. It has pretty much subsided with 25mg Prednisone.

In the meantime I've increased the Prednisone back.up to 25mg, and began to feel better even after 4 or 5 hours.

I really appreciate your comments - and Is be interested in your observations. And I will contribute where I can...😊

[PMRpro Ambassador in reply to Joannarosa]

Mmm - but in the 2015 Recommendations the TNF inhibitors are specifically warned against for use in PMR. So they are not likely to help for PMR - and the warning is because they have obviously evidence they caused problems. I'd want to know they had grounds for thinking it was something else.

It is a real problem - there are a lot of us on pred who really struggle to get below 10mg - I'd love to get to 10mg, I would be satisfied with that!! The story so far has been "PMR lasts 2 years", then "some people have it longer" and now, at last, "some people have it for a really long time". But the majority will lag a long time behind...

[Joannarosa in reply to PMRpro]

Hmmm...thanks...and I'd really appreciate that 2015 reference?

[PMRpro Ambassador in reply to Joannarosa]

ard.bmj.com/content/74/10/1799

TNF inhibitors are in Recommendation 8

[Joannarosa in reply to PMRpro]

Thank you. I haven read any warnings about side effects or long term risk, apart from infection...I'll try to research a bit more.

[CarolF1312]

I'm so sorry I can't offer you any advice as not experienced enough but I am sending you a virtual hug. I'm sure others will be along soon with some constructive advice.

[Joannarosa in reply to CarolF1312]

I thought I'd replied - thank you for the hug!

[Joannarosa]

Thank you - that's really interesting! Can I ask you how you are now - are your symptoms under control? What meds are you on?

[Joannarosa]

That is so helpful! Thanks so much for this information. I had no idea that there were so many variants of inflammatory disease and honestly felt as if I was either inventing it, overreacting, or losing the plot completely. I'm so glad you're doing ok, and off the prednisone. You've given me hope!

[Joannarosa]

Thank you so much for this! I hope you continue to be well.

[Luciejc]

I have GCA not PMR and had no relief from Prednisone. Switching to Methylprednisolone (Medrol) made a big difference for me.

[Joannarosa in reply to Luciejc]

Glad it worked for you!