Its been a while

[OrwellMan7]

sis that ast posted the rheumy informed that pmr has gone inactive, but I have a mild case of fibro myalgia, which I can deal with. So the pred is decreasing, currently at 1mg daily for 3 months then alternate days for 3 weeks. What I want to say is there are , or were,3 of us men aged 60 to 70 living within 100 yards of each other with pmr. Sadly on of us , my friend who lived opposite, took his own life recently. He was 72 and was told by a retired Dr it would burn out within 2 years, and 3 years later it was getting worse , he could no onger walk on the fells after a lifetime of doijng just that.He was a lifelong bachelor who had worked on farms and although very sociable was quite a private person. We compared notes and although we went to the same surgery his treatment seemed to depend much more on blood tests more regularly than my Doctor. The main difference though was he was not referred to a rheumy; if I had not seen the rheumy I would not have known that pmr had gone , but that fibro myalgia had come. With the decreasing pred I have taken Pro advice a now have a carbohydrate free diet, in 3 months I have lost the 2 stone I put on over 2 years and feel so much better, thank you all and especially Pro and others who help so much. God bless you and look to the future.Regards OrwellMan7

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to about your friend.

Unfortunately PMR affects all of us differently, but would agree that maybe he was given an unrealistic timeframe from his own doctor. That's not unusual, 2 years seems to be the figure bandied about by many doctors, whether GPs or Rheumies.

Not all PMR patients are referred to Rheumies, if the GP feels competent to treat the problem he may not consider a referral necessary.

Many have regular blood tests, but of course symptoms are the key throughout the journey.

Good luck for the future.

[JulieR2]

I was so sad to read your post about the poor man that took his life. For me it reinforces the importance of is all supporting on another and sharing our news good and bad and sad. Was happy to hear you were getting better

[PMRpro Ambassador]

So sorry to hear about your friend.

You are still on 1mg/day? So no-one can say the PMR is inactive or gone. There are plenty of people on the forums for whom 1mg was enough to keep it at bay. And PMR does not morph into fibromyalgia - they are totally different things.

[OrwellMan7 in reply to PMRpro]

Thank you, I thought they were different conditions because FM is not an auto immune condition is it? I am quite scared it will return of course. When I have done my time on 1mg and the alternate days for 3 weeks, can I assume at that time that it is inactive? The exercise regime I now do and the improved lifestyle with the weightloss makes me think I am better, so I hope the light at the end of the tunnel is not a train coming the other way. How are you doing?

OrwellMan7

[PMRpro Ambassador in reply to OrwellMan7]

I think there are people who think it MAY be autoimmune. I'm not committing myself on anything!!! If you get off the pred all well and good - and I really hope you do. What I mean is - the rheumy cannot know.

Not to be a downer - but I do know people who stopped their pred - and 3 months later they had niggle! So if that does happen - don't ignore it, catch it quickly.

Me? I'm fine on 6mg at present. But that is really just on the tipping point I suspect. Not enthusiastic about trying for 5mg at present!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Hi,

No definitely not at the moment - too much going on! Take your own advice, oh wise one.

Good luck when you do try though.

[DorsetLady PMRGCAuk volunteer in reply to OrwellMan7]

Hi again,

Afraid you can't assume that PMR is gone just because you get to zero. It's not time or dose reliant. It goes when it goes, and you only know that when you're off Pred and no symptoms.

Hope Rheumy is right!

[podo in reply to DorsetLady]

After my first bout of PMR, I was off Pred for 19months before it returned with a vengance! Second time I was off it for 5 months, next time 4 months and then three. Latest flare started in mid-2013 and Dr Hughes has diagnosed "Refractory" PMR which affects about 5% of the PMR community. Now in year 15, I am at 4.5mg and doing "double-slow" DSNS which may get me to 4mg by the end of the year. I will stay at that over winter if possible and then try to get to 3mg by end 2018 when I turn 80 if all goes well. After that who knows, whether to stay at that or try further... Having missed the worst side effects of Pred apart from Gastric Ulcer, Glaucoma and cataracts I am now fighting back! Have joined a gym and doing light exercises to build up my depleted muscles and enjoying a regular swim. Hopefully you will not experience all of this OrwellMan7 but at least the future is not bleak even for extended PMR.