15 yrs PMR and still going up&down

[Avadip12]

OMG so sick of this, been doing fantastic on 3 mgs thinking for the 9 th time I have cracked this at last , but NO ! . After 2 weeks of extreme fatigue and the emergence of painful neck, shoulders ,hips ,finger and Achilles and night sweats , I feel I am in yet another flair up. This week end I am due to host my daughter and family after a covid year apart . They are travelling 9 hrs to be with me. And I am struggling to sling a sentence together due to brain fog. Let along being able to cater, go walk and enjoy our reunion. So this morning I went from 3 mgs to 5.5 mgs with the intention of feeling better by Friday and then going back to 3 mgs when they leave. Can anyone ADVISE if going straight back to 3 mg will work out .

[PMRpro Ambassador]

Is the 5.5mg enough? We'd usually suggest adding 5mg to the dose where it happened, so 8mg so it works quickly, Up to 7-10 days there should be no problem dropping back to a lower dose, but I really wouldn't go to 3mg, as it is almost certainly just a tiny bit too low and is allowing inflammation to build up, albeit very slowly. 3.5mg at least, and preferably 4mg. These are low safe doses, Prof Dasgupta says he leaves patients on 2-3mg indefinitely as it prevents relapses. It looks as if you need just a smidgeon more - but in the long run, you do better. You don't end up yoyoing the dose which can lead to it becoming harder to reduce again. I have also had PMR for 15+ years - and need 15mg to function. I'd be ecstatic on 5mg

And the catering? Let them take the strain or have something delivered. It isn't the standard of the food that counts - it is everyone being relaxed and together that is important. Then sit back and enjoy ...

[Avadip12 in reply to PMRpro]

Thank you so much for your advice, it’s been a wonderful enlightenment to see this forum. I never new it existed, and even though I am 15 yrs on , it has been invaluable. So tomorrow I will up the prednisone further, I defo need some energy back .

[123-go]

I was going to say exactly the same as PMRpro... the stress of catering for your family and worrying about how you're going to manage things won't do you any good. I understand that you would want to do do this yourself but on this occasion I definitely would advise her option. I hope you have a lovely weekend and do have a rest while the family has a walk if you don't feel able to accompany them. There will be other times in the future when you can do all the things you can't do now.

[Avadip12 in reply to 123-go]

Thank you for your support