Remission or not

[Singr]

I'm being driven to come off the steroids by my consultant. She claims that the PMR has gone into remission and my current effects are due to Fibromyalgia. Why then am I stiffening up like the tin man and pain in my arms, legs and pelvis. Cocodamol pain killers do not make any difference. I've reduced from 50 mg (with ups and downs) down to 5mg since 2018. I'm finding it hard to concentrate on anything due to the persistent nagging pain and stiffness. Supposed to have a return appointment in December but they have yet again forgotten to contact with appointment.

Does anyone else get so exhausted by the constant pushing to be supported and listened to by health care?

[WNBTHurs]

Hi Singr. I was diagnosed with fibromyalgia last year the pain was excruciating and they gave me medication which settled it down. After it settled I still had aches like you, I waited 3 weeks on my current does of 5mg pred and it didn't improve so I increased to 10mg for a week and the muscle soreness and stiffness went. I have now reduced to 7.5 for a few days then will go back to 5mg. I think the pain and stress from the fibro brought on a flare which I didn't recognise at first. My doctor did listen to me and agreed on the meds so helpful and I saw a rhumy in December who just said keep doing what you are doing. They only reason I know a bit about what I am doing is from this site and the wonderful people on here who give sound advice and I am so grateful for this.

Others will be along soon I imagine to help with advice, I hope you improve soon.

[PMRpro Ambassador]

I'm lucky because I have doctors who do understand the nature of PMR - and your rheumy obviously doesn't. But I do end up spitting feathers when I read of patients faced with such intransigence. I assume if you are on enough pred, then you don't have these symptoms? Fibro does not respond to pred. End of ...

What are her grounds for claiming your PMR is "in remission"? It IS in remission - medication-induced remission as you are on a good enough dose of pred, but if it is on the basis of time, that is a myth that top rheumies are working to dispel and she needs to come into the 21st century. If the markers are in normal range that it=s solely because of the effect of the pred.

[Longtimer in reply to PMRpro]

Unbelievable how many people like myself have been told it's now Fibromyalgia!.......it needs to be proven that it dosen't respond to steroids. Medication for Fibro is awful, not many can tolerate them.....seeing my GP tomorrow, was told steroids are poison many years ago, you can guess my battle with her!....

[Brooklyn747]

Yep, totally agree with all comments. I too was treated for fibromyalgia for months, kept telling the G.P. that the medication she prescribed wasn't working....so she would prescribe a different brand of noncortial steroid.

Ho -Hum when much later my C.R.P. was elevated did I finally get prednisone which of course helped enormously.

The only advice I adhere to now is on this forum....and big thanks to volunteers/Ambassadors without you we would be lost in the wilderness!!

[Singr]

I'm going to phone The Rheumatology helpline tomorrow and give my thoughts. Hopefully in a calm and rational way. Totally different to the way I actually feel.