? Increased disease activity - how to deal with it

[Tiggy70]

Does increased disease activity always need a higher Pred dose to get back on track?

I attempted a reduction from 8.5 mg to 8mg in June and I’m still suffering the consequences. I flared after 3 weeks and I’ve been yo-yoing up and down since trying to find the dose where I’m pain free. I settled on 10mg, was ok for about 10 days but now have the aching back and after 4 years with PMR feel I’m almost back at square one. It does feel a bit different though as the aching seems to come on in waves throughout the day then dissipates.

Can increased disease activity take you back to square one and if so will I have to take 15 mg (my starting dose) and taper slowly back down again or can I up the dose to 15mg for say 10 days then drop back to 10mg. I’m so fed up and depressed at the moment and feel I’ve totally lost any control of my PMR.

Thank you, Tiggy.

[PMRpro Ambassador]

"Does increased disease activity always need a higher Pred dose to get back on track?"

If the dose you are on isn't enough to manage all the inflammation, then you will need more pred.

However - are you SURE this is the PMR? Could it be something mechanical - tight muscles or a disc problem?

And PMR is sometimes a presentation that progresses to LVV or GCA (large vessel vasculitis or giant cell arteritis), disorders that are on a spectrum of severity, so if the symptoms are no long being well managed at a dose at which you were previously comfortable, you really do have to consider that.

[Nightingales]

I am sorry Tiggy. It is discouraging when we don’t seem like we are making progress. I think PMR pro has a wise point. You may have already had imaging on your back or hips, wherever the pain is but if not I highly recommend it. It may be a problem that can be addressed by local steroid injections. The rheumatology nurse hotline would ask if the rheumatologist would order an MRI but I have had more luck through the GP.

[Tiggy70 in reply to Nightingales]

Thanks. I’m currently waiting to see if I can get an MRI on my shoulder (I had two surgeries on it in 2022) but it all takes so long. I think we are both in Northampton and everything is so slow.

[Nightingales in reply to Tiggy70]

Yes. I am having spinal injections tomorrow privately because it was a years waiting list. We are at the same rheumatologists too and aren’t they a joy! Sorry I haven’t written to you lately, Life you know. X

[Grammy80]

All I can offer is that over my journey with prednisone, I'm in the States, it has been a roller coaster. Anytime I had increased disease activity, my rheumatologist always took me up to a point of comfort and we started the trip down the ladder again. I have never been in a rush to zero, I want some quality of life and appreciate this approach.💞

[Tiggy70]

Thanks Grammy. I’m not in a rush to get to zero either.. I just want a decent quality of life and to be able to do stuff. My NHS Rheumy is pressurizing me to go lower despite my better judgements.