Life span of pmr

[Sheribrim]

Please advise. I have been told that one lasts for a maximum of 4 years and I am wrong in thinking that it can go on for much longer. Please would you let me know as I'm not convinced this is correct.

[piglette]

Dear Sheribrim, who told you that? I think there will be a lot of people on this board who are living proof that statement is wrong. I was told I could no longer have PMR because I had had it for two years.

[Rose54]

Hi

Yes GPs say two years they wave a magic wand and its just gone

so fairy tales do come true .

Some appear to go into remission in under a year

but truth is PMR will go when its ready could be two years or more

some are still here 6 years later .

Nothing we can do but be kind to ourselves and take the magic.

Rosepills

[PMRpro Ambassador]

I read a paper/article early in my own PMR journey (can't find it now though) which feels that about 25% of PMR cases require pred for 2 years or less but they are then at a higher risk of relapse at a later point. About half of patients require up to 4 to 6 years and the remainder take even longer or remain on pred for life. Of course, the "lifers" may also have poor adrenal function and the pred is required there. An Italian study on the use of methotrexate as a steroid sparer in PMR found that whether mtx was used or not, a third of patients still required pred after 6 years and commented that it is wrong to regard it as a benign self-limiting condition. The standard German rheumatology textbook says PMR lasts on average 5 years. There are increasing numbers of expert doctors who are supporting the concept of a long-lasting refractory form of PMR.

There are several of us on the forums who still have PMR symptoms after well over 10 years - and our doctors are satisfied it is PMR we have and not anything else.

[Sheribrim]

Thank you for your reply, sometimes one doubts information given but i do need reassurance.

[maria40]

I've had PMR for 17 years and GCA for 7. Flares make reducing prednisolone feel like Sisyphus pushing the stone up the hill from the bottom each time! Don't let this discourage you though, it's possible to have a (reasonably) normal life.

[Lafontainepam1]

I have had PMR for over 5 years now. Started on 15 mg. over the years made it all the way down to 2mg., but after relasp, after relasp, I am currently at 7mg. Not sure if it will ever end, but as long as I am feeling well at that, I'm not complaining!