Wish I'd found this forum earlier, thank you to all for helpful advice and comments. I was diagnosed in Jan 2019 with PMR and my GP def thought I had GCA leading up to that (terrible migraine like continuous headaches, sickness, light sensitivity and massive weight loss - couldn't eat anything really). Had lots of tests via RAMU (rapid access medical unit) but nothing showed cause of headaches. Neurologist said was cluster headaches). Tried acupuncture in desperation, 1st practitioner didn't really help long term, later changed to another practitioner who has been more than brilliant. Basically the headaches receded quite quickly and he gave lots of practical advice about only eating well cooked small meals, nothing raw, making sure I went out daily or at very least stood at my front door to get fresh air) etc. Have stuck with him throughout. I went on to statins on GP advice and quickly developed v bad muscles pains which can be a side effect of statins. GP did another blood test which showed raised inflammation levels and put me on to 60mgs prednisolone straight away as she feared GCA and had further investigations and referral to Rheumatology. Great response to Pred, all aches disappeared though v tired and brain fog at times. Have gradually reduced, with some hiccups since 2019. Came off beginning of Feb 2021. Just had consultation with Rheumatology consultant. Since I was on lower doses of Pred, aches returned, pelvis, top of thighs and top of arms. Sometimes quite bad even now off Pred. Rheumatologist says this can happen but my blood tests are fine so PMR has not returned. Sorry so long but my question is:
Rheumatology says some people continue with pains and it should fade out. He will take a further blood test as he says maybe my body still had high cortisone levels. If it does he will prescribe Amitryptilline which should help my sleeping at night (some nights I manage about 2 hrs sleep and funnily enough I often feel more energetic and less pain on following day, other nights can fluctuate between 4 hrs and 6 hours). I am a bit alarmed reading experiences of others on amitryptilline. Has it worked for some?
I'm pretty sure the consultant said cortisone not cortisol. I thought cortisone was the synthetic hormone in pred. Coul d it still be in my body and why would it cause the aches. I didn't manage to be quick off the mark to ask him (on phone).
Do others have these ongoing pains once off Pred? If so, how long do they last?
Unfortunately despite taking alendronic acid and Adcal to counteract osteoporosis I have developed it quite badly. Have also had rapidly deteriorating eyesight due to cataracts so on waiting list now for op.
Will be back to acupuncturist now had the covid jab so think he will help me.
Good luck to you all.