Ups & Down of PMR

[SpaghettiWestern99]

I was diagnosed with PMR in Aug 2023, prior to which I had severe pain and mobility issues. Having responded well to Pred I have become pain free. I’ve started a reduction and I’m currently 3 weeks into a 10mg reduction.

I’m able to be active, something which I’m really grateful for. The downsides have been nausea, dizziness, fatigue, anxiety, depression, and being off work. When people ask me what’s it’s like I often respond that I’ve been through the wringer, it’s not pleasant and you don’t know what each day is going to be like. Bit of a nightmare.

The positives are that I am getting better, but it’s a rollercoaster of a ride. Having this forum & keeping a diary has been a huge help.

Long way to go yet and really appreciate everyone on here

Male, 52 & active runner (until PMR)!

[DorsetLady PMRGCAuk volunteer]

Good to hear…. and you know where we are when you need us….

[SpaghettiWestern99 in reply to DorsetLady]

DorsetLady - thank you. I check in daily, it keeps me sane!

[DorsetLady PMRGCAuk volunteer in reply to SpaghettiWestern99]

Keeps you sane? Lucky you 😊…

[Sukydee]

It certainly is a rollercoaster in every way. Glad to hear that you are getting better. I too was an active runner, knocking out 15 miles before breakfast, training for ultra marathons. It’s hard to accept the changes that PMR forces upon us. Hoping your PMR journey goes smoothly.

[Merryfield]

Dear Spaghetti-you are a toughie to deal with all the side effects of pred and PMR. Wishing you the best.

[SheffieldJane]

A diary is a great idea. I wish I’d thought of it. A record of all the tests and symptoms, response to tapering, the impact of activities and of stress. It would be a good way of managing the disease and maintaining perspective.