PMR SUCKS!!

[Shesfromboston]

August 2020 at 51, I was diagnosed with PMR (a condition I had never heard of before)

I had all the classic symptoms. I was practically bedridden!

Thankfully, I was only a couple of months before my Rheumatologist put me on 30 mgs of Prednisone for about 3 months, after that tapering down by 5mgs every two weeks down to 15 but that wasn't cutting it so back to 20, where I stayed for quite some time.

I had every adverse reaction to pred, including hypertension, (now on high blood pressure meds) weight gain (almost 40 lbs) and of course, I worry about long term affects.

After some discussion with my Dr and four months of fighting with health insurance to cover a new medication, I am now on Actemra injections.

GAME CHANGER!!

I am, in 6 weeks time, down from 10 mgs of Prednisone to 2.5 for two weeks then I'm done with it!! (7 more days, but who's counting??) I have NO pain!!

I will be on Actemra for a while, but I am having no side effects!

Just thought I'd share because I was originally told Prednisone was the ONLY "approved" treatment for PMR.

I hope my post can help someone else who's suffering with this!

[PMRCanada]

Too bad it’s not an option for PMR patients in Canada. 😔

Glad to hear it’s working for you!

[PMRpro Ambassador]

It IS the only approved medication for PMR. Actemra/tocilizumab has never been through a clinical trial and so is not officially approved for use in PMR. Any doctor using it is using it off-label and that means individual funding approval anywhere.

[Shesfromboston in reply to PMRpro]

Correct, the FDA has not yet approved it for PMR, however insurance is paying due to adverse affects and inadequate response to prednisone. It is being studied, I'm told, but not yet approved as first treatment option.

[DorsetLady PMRGCAuk volunteer]

TCZ is not an option for PMR patients in UK…..and only for a few with GCA.

Hope it continues to work for you.

[SheffieldJane]

A very positive story!