Problem with sleeping PMR and costochondritis.

[Doubtfulsound]

Any advice please. Tapering pred and now at 3 1/2 which I take at 8am. Last few months have had real difficulty with sleeping -painful every time I move across chest (costichondritis) Should I take pred at night to help. I’m positive costo is linked to PMR as it’s only come on as pred dose has come down. Fine during day so very reluctant to up dose again and rheumie insistent I keep lowering dose.

[DorsetLady PMRGCAuk volunteer]

This was posted within last month so might help- healthunlocked.com/pmrgcauk...

If you're at 3.5mg why is Rheumy twitching?

[Doubtfulsound in reply to DorsetLady]

Thanks. That is useful and helpful to know others have found the same link with costo and PMR. This forum is great as it’s so difficult to find detailed info about PMR. There seems so little research although I have just read Kate Gilbert’s book. My Rheumy was adamant I should reduce down from 5mg ASAP but I’ve been very careful as I had flare up last year around 3mg. I think I’ll hold fire for a bit before reducing any further.

[PMRpro Ambassador]

Tell him a worldleader in the field (Prof Dasgupta) even leaves patients at 2-3mg indefinitely as he finds it prevents relapses and a return to much higher doses, saying it is a low dose that does little or no harm. And another particularly good rheumy in the UK keeps patients at 5mg for up to 9 months and finds it also avoids problems later.

However - if it were me I would try taking it at night - if it doesn't work you can always go back to morning dosing.

[Doubtfulsound in reply to PMRpro]

Thank you for your advice. I’m really struggling with the whole being on meds long term thing. I’ve been so lucky up to 18months ago when diagnosed with PMR. After reading this I’m definitely going to stay put for a while-I’m just not well enough to go down any further.

[PMRpro Ambassador in reply to Doubtfulsound]

"I’m just not well enough to go down any further."

And THAT should be a very big factor in reducing. Most good doctors, rheumies or other skills, stop worrying once the patient is below 8mg. At 5mg the really good ones relax and just accept that not everyone will get much lower than that. You should probably try - but it isn't the end of the world if you don't.

[Hidden]

What is that complaint Doubtfulsound ?

[Smokygirl]

Just a thought. I recently got those sharp pains between my boobs and chest (sternum) when lying on my sides ( left side worse) and found a microfibre neck pillow stuffed between my boobs eased the pain. Worth a try! Xxx

[PMRnewbie2017]

I also find using a feather pillow helps to stop my chest collapsing. I'm a side sleeper and have a tendency for my uppermost shoulder to round down towards the mattress without support.

[Doubtfulsound in reply to PMRnewbie2017]

Thanks. I’ll try the pillow or neck pillow and see if it helps.

[marigolds in reply to Doubtfulsound]

You could try splitting your dose!