So much pain now I am down to four and a half mgs steroids

[j-e-a-n]

Hi everyone, haven't written for a while. Have been dropping half a mg every 7 weeks, it takes that long using the slow/stop method. I have been alright apart from the horrible pain I have all the time, I suppose down to the PMR, but my GCA seems to be alright at least. I don't want to go back up and anyway the pain seems to get a lot better as evening comes along. If I have to go anywhere or do anything much, I take Paracetamol, which helps, Am not going to drop to four until after Christmas as I have all the family coming over and there will be a lot of stress, even if it is nice stress, so better safe than sorry. Hope you all have a nice Christmas.xx

[PMRpro Ambassador]

"I have been alright apart from the horrible pain I have all the time, I suppose down to the PMR, but my GCA seems to be alright at least."

PMR symptoms are an integral part of some people's GCA. They are merely different points on a spectrum of symptoms. If you ignore the return of symptoms - whether they are GCA-style or PMR-style - then you are heading relentlessly towards a full-blown flare. If you are lucky it won't progress to the level of having GCA symptoms but you cannot know.

At what stage did this pain return?

[j-e-a-n in reply to PMRpro]

The pain returned several months ago when I got down to around 14 mgs, but, as I said in my first message, the pain goes away from around teatime. Maybe arthritis as it is my joints as well as muscles

[Valnvaughan in reply to j-e-a-n]

Ask GP to investigate “pain”. You should not have to live with pain. Ask re arthritis / flare/ management techniques.

Best of luck. Valerie

[PMRpro Ambassador in reply to j-e-a-n]

If the pain is that bad since 14mg it needs to be investigated and not just put down to OA or whatever. That isn't the idea of reducing. If paracetamol helps it probably isn't PMR but it is something.

[SheffieldJane]

I am sorry that you are having to contend with so much pain. It does seem to indicate that the inflammation is still active. I would be concerned about a relapse , if it gets out of hand. The level of Pred you are on is negligible for side effects. I do empathise. It took me a year to get below 7 mgs, really creeping along and then I got a nasty chest infection, followed by my first real flare. I was so reluctant to go up from my hard earned 6 mgs. PMRPro advised me to go up by 5 mgs. I have to say that I feel better on all levels, with little or no pain. This is a tough journey!

[Thomas45]

You say it takes that long using the slow stop method but it doesn't seem at all long to me. It took me much longer to drop half a milligram. My system was one day at the lower dose followed by 6 days at the old dose, e.g. Sunday at 4.5 mg, the rest of the week at 5mg. I'd keep on that dose for 2 or 3 weeks before dropping to 2 days at 4.5mg and 5 at 5mg. I split the dose as evenly as I could, so Sunday and Thursday at the lower dose. When my body was used to that I'd drop to Tuesdays, Thursdays and Sundays at the lower dose. I'd listen to my body, before dropping again so dropping half a milligram might take 2 to 4 months not 7 weeks.

I didn't have any preset idea of how fast it would be. As the doses became lower dropping became quicker. It may be that you have pain because you still have inflammation. I'm surprised that paracetamol works though.

It took me 3 years and 7 months to get off Prenisolone. I still have periods of extreme tiredness, and shoulder ache which I put down to my height (6'7"), and have periods when my head feels tired of holding up my head. but after rest they pass.