My story: I’m new to this site although I was... - PMRGCAuk

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My story


I’m new to this site although I was diagnosed 10 years ago. The rheumatologist, after 3years, suggested that I keep on 3mg for eternity. Each time I try lower the dose I get a resurgence, I find 5mgs makes life bearable but my prescription is for 3mg. Strangely when I had pneumonia 4years ago and all medication was halted for intravenous antibiotics I didn’t seem to suffer, perhaps because I was so ill I didn’t notice ! Tiredness is a problem but that is exacerbated by atrial fibrillation.

Except when the pain is so severe, I feel very lucky. I am in my 90th decade,live independently and am able to get out and about, on my own and with kind friends and family who are prepared to drive 80+ miles to take me to hospital appointments and on holidays.

7 Replies


Will your doctor not let you stick at 5mg if you feel so much better there? I'd be lobbying for that! I know what you mean about the a/f - do you find it is better at a higher dose of pred?

I'm with PMR pro. lobby for 5mg. why not!! If you feel better. And I love your attitude! and your friends! Bravo.

Hello and welcome Mipsie. I just wanted to say what a glass half full girl you are.

As others have said think 5mg is for you and what lovely family and friends you have. Best wishes Mipsie.


Welcome Mipsie 💐

Well done on how very well you are doing, maybe negotiate a small rise to 4mg & see how that goes.

So pleased you have good family & friends.

Look forward to hear from you again.

Mrs N 💅🏼

Hello Mipsie,you sound an amazing lady and l am pleased you have kind friends and family who are so caring. I also think that if you feel better on a higher dose of Pred,l,would take the extra.Best wishes,please let us know how you get on.

Gosh, 10 years ago, you were truly in the wilderness with this disorder. How did you find support and information? So glad to see you here.💜

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