Good News

[AnnaColuthon]

I was put on prednisolone in February and have had no follow-up from my surgery until today. Out of the blue, I had a call from a lady who has been appointed to look after the PMR patients. She was most sympathetic and put no pressure on me to reduce my dose. Rather, she told me to stay on current dose until after Christmas and then try a slow taper (I had a shaky drop from 7.5 to 7 so am back on 7.5 currently). She will call me again in January. I told her about this group, which she did not know, and she is going to look at it. I'm feeling cared for at last.

[PMRpro Ambassador]

Good heavens - have they got that many PMR patients? But you would think someone allocated to PMR patients might be aware of the national charity!!! DId you tell about the charity too - the forum is separate really.

[DorsetLady PMRGCAuk volunteer]

Well that’s a turn up for the books….and as PMRpro has said she should be aware of charity - in fact she could become a member if she’s going to be involved with our illnesses. See this - and maybe forward to her via surgery

pmrgca.org.uk/professionals...

[PMRpro Ambassador in reply to DorsetLady]

Yes - I forgot to mention that!!

[AnnaColuthon in reply to DorsetLady]

Thank you to both of you. I will pass the link on. I'm just pleased that the surgery is finally taking some interest even if not perfect.

[reefswimmer]

In my experience, only reduce your steroid dose, IF you can do it without pain returning. I reduced my dose rapidly from 7mgs to 3mgs years ago when I first had PMR. Suddenly, I felt dreadful and had to go back up to 7mgs and start the tapering process all over again and this time very, very slowly. Some of us will be on low doses for years, but if that's what it takes to lead a full, mostly pain free life, then that's what it takes. Good luck!

[Eggfarmerpete]

Hi there, were you prescribed 7.5mg as a starting dose? Seems to be a small amount. I have been very lucky with my doctor who is determined to help and get the farmer back to work effectively . He has diarised to contact me in the new year for a progress report and he will discuss a plan for reduction then.

Does your medication work and does it last for 24 hours?

If so reduce by 1/2mg for a month and then try another 1/2 and so on.

Good luck.

[AnnaColuthon in reply to Eggfarmerpete]

I started on 15 mg and reduced by 1 mg a month until I got to 8. I had total relief of symptoms. I then began to reduce by 1/2 mg but when I got to 7 I had mild aches and tingling in my right shoulder so I have gone back to 7.5 and will stay there for a bit. Shoulder is getting better every day. The medication does work and it does last 24 hours. I have been pain free and quite active with just a few low energy days. I have been very fortunate compared with some.

[Blacksley]

My experience is as others have said, that you are lucky to have a health professional to look after your condition. Many of us are often, for long periods, left to our own devices. I have had PMR for more than 6 years and for more than 5 years succumbed to poor advice from medics to get off prednisolone much too fast resulting in repeated flare ups. When I started to look up on the Internet for information on my condition I found this forum and listened to the advice on tapering. I am now on a long slow taper and now down top 3.5 mg a day and cross fingers no problems. My rule of thumb, accepting that we are all different, increasingly lengthen time period between each reduction as your dosage reduces, to give your body time to cope.