Trying to survive without Pred

[Fifegran]

Have been on prednisalone for 6yrs, tapering slowly down to half a mg, believing PMR in remission. Had to see a GP on 3rd December about an X-ray to my shoulder ( after a fall in September). I had never seen this GP before, he noticed on the screen that I was still taking Pred and when I told him it was a very small amount, he became very annoyed, informing me ‘ that is not how you take prednisalone’ , ‘you either take it, or you don’t’! ‘When you reach 1mg you stop it altogether’. He said, ‘stop taking it, you don’t need it, and proceeded to tell me how harmful it is. I told him my legs had started to pain me recently and he informed me it would be arthritis as I am 77. I have found the thought of stopping the pred quite scary, 6 years is a long time, but stopped the next day and felt fine. However, that was 26 days ago and my legs are so much worse, so stiff and sore, I have great difficulty dressing & undressing, putting on socks a nightmare, pain in both arms, difficulty putting arms above head, sore neck. Have had to ask husband to put the toilet extension on the loo, this has been in the garage since first diagnosis in 2018! I have to wait until January 16th to have bloods taken then appointment to see my own doctor on 24th January. The pain is in the muscles, not the joints. When I think about it, it was a silly time to stop, Christmas is stressful enough without anything else. I am wondering whether to take some prednisalone ( I have a stash for emergencies) or should I tough it out until 16th January. Thank you for reading.

[PMRpro Ambassador]

Well that is a doctor to avoid if you have PMR because he doesn't understand it at all does he? I wonder if seeing him with your symptoms might convince him - except he'd probably try to say it was all in your head, after all, we all want to need the toilet raiser, be in constant discomfort, have someone dress us. As for someone who thinks 1mg pred is a major risk - I really don't want to have to see them! No doubt he'd offer you Naproxen instead - does nothing for PMR and far riskier than a low dose of pred.

Will your own GP be on your side without proof? If so - take some pred and at least be comfortable.

[Fifegran in reply to PMRpro]

Thank you for your prompt reply, have heard this particular doctor misdiagnosed one of my neighbours recently- don’t think he’s very popular! Will take some Pred, couldn’t go on like this.

[PMRpro Ambassador in reply to Fifegran]

Complain to the practice manager and make sure you don't need to see him again.

[Fifegran in reply to PMRpro]

Good idea, definitely don’t want him again!

[piglette]

OMG another doctor who does not know about PMR or long term steroids. Go back to your doctor and tell him the PMR pain has come back tenfold! Make a big fuss. DON’T TOUGH IT OUT. Out of interest what age was the doctor if you don’t mind me asking?

[Fifegran in reply to piglette]

Maybe mid to late 40’s. Not good with ages! New to our Surgery, will avoid in future.

[piglette in reply to Fifegran]

I was just wondering if they were young or old. I do find some of the younger ones are much more understanding than the older ones nowadays.

[SheffieldJane]

what a shocking and ignorant response from that doctor with predictable results. I sincerely hope your own doctor can be depended upon for reliable advice. I think I would return to at least 5 for some relief and let it settle before you taper again. You seem to be doing well. I am stuck at 4.5 after 8 years, what would he make of me?

[Fifegran in reply to SheffieldJane]

Yes, his manner left a lot to be desired, I feel I’ve been set back quite a bit, although I should have known better myself. I think I’ve gone below what my body needs, thinking the pain which had reappeared was due to the fall I had in September, really thought the PMR had gone! Makes me think of the ‘dripping bucket’ scenario. Thank you for your help!

[PMRpro Ambassador in reply to Fifegran]

A fall can be more than enough to trigger a flare - someone even did a research paper about it!!

[Fifegran in reply to PMRpro]

That’s interesting, I had no idea! It was my first-ever fall, on to concrete pavers, now ultra careful !

[Suffererc]

I have also been taking Pred for just over 6 years when I stopped. Within 6 months I was back on it. I thought taking .5 was pointless but it has its place. My GP not my normal one put me back on 15 mg but I found it too much and reduced very quickly to 10 (also PMR advice) I am now on 2mg ( 3 months later). Have just returned holiday after long haul flight. Am aching a bit and may go back to 2.5 for a week.

Good luck. There is a point to .5 so don’t rush 😊Happy New Year

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

Sounds sensible to up to 2.5mg temporarily-and many will testify that 0.5mg does a lot!

[Fifegran in reply to Suffererc]

Thankyou, that’s encouraging, such a pity it came back but sounds you’re doing well. Happy New Year!

[Hopeful424]

I would definitely go back to 1mg and hope that controls the flair. Don't let the disease progress as you had it under good control it would appear.