Anyone with PMR

[Richmond162]

Hi been diagnosed with PMR, thought it as RA. Anyone else with PMR? I find if I take my steroids in the night it helps with movement in the morning. Am I right in doing this? Also I started on 15mg a day dropping down etc but 10mg is too low. I still take Solphadine as painful neck. Anyone else have “extra” problems with PMR. Many thanks.

[Happyrosie]

When I took steroids for another reason I was told never to take after 4 p.m. because I wouldn’t be able to sleep - but mine was a very high dosage.Your pharmacist would be the one to ask about this I think.

[Richmond162 in reply to Happyrosie]

Thank you so much.

[Maisie1958]

Hello Richmond162 - I was initially diagnosed with PMR in 2015 and had the magical relief after low dose prednisolone tablets but unable to stop them without problems recurring- now diagnosed with seronegative inflammatory arthritis. If you haven’t looked on the HU PMR/GCA forum it’s well worth doing as lots of advice on tapering steroids amongst other things. It’s an active and supportive site with a great knowledge base. All good wishes.

[Richmond162 in reply to Maisie1958]

Thank you so much.

[oldtimer]

When my PMR was bad (I've sero-negative Rheumatoid Arthritis as well) I used to split the doses and take one 5mg at 3am when I woke to go to the toilet. That way I could manage to have a shower in the morning when I got up. I think you do what is necessary to manage the condition and although your aim should be to come off steroids when you can, don't try and force it but do it slowly.

[Richmond162 in reply to oldtimer]

Thanks. Yes I seem to wake at about 3.30 i do sometimes take steroids that way I can move better in the mornings. I reduced to 10mg but definitely too low so am contacting doctor to ask if I can increase, I don’t want to but find it hard to take being so slow after being active. Oh dear, never thought this would happen to me🤔