PMR Newbie

[Classicalgeeze]

I’m a PMR newbie that’s very relieved to be starting steroids today after blood test showed CRP levels 65 mg/l and painful knees, hips shoulder, muscular pain in thighs and upper arms last couple of months. It’s come on so quickly it’s hard to get my head around it. Hoping for great things from the steroids because pain last couple of days has been off the scale. Dr wants trial of steroids for 2 weeks to see if they work. If not working then back to the drawing board. Wish me luck

[piglette]

Sounds like your doctor has it all in hand. Hope the steroids do their magic.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

In case you do have PMR, maybe have a look through this for general info so you know what to expect-

healthunlocked.com/pmrgcauk...

This seems to be a duplicate post- so have copied my reply to other one..

[RosyPollyandMe]

I hope that the steroids help you. Well done for finding this forum. I have received lots of kind caring and helpful support from the extremely knowledgeable experienced members.

My number 1 suggestion is read all the info that Dorset Lady and the others who will share links to really useful stuff! Let that digest … Then I decided I needed read it all again! I did it with paper and pen…. There’s a lot to absorb and I found it empowering and therapeutic to learn ! Fingers crossed for your journey.

[PMRpro Ambassador]

Hi and welcome to our merry band!! Good luck with the steroid trial! Always someone to answer if you get stuck - maybe less so at night in the UK but we'll be back!

As this seems to be the more subscribed of your duplicated posts, maybe delete the other one? Saves confusion for those of us who follow it all ...

[Birder21]

Hi, I am also new to PMR. I started with back ache but then my knees and elbows became really painful and I couldn't get up without rocking and rocked when I walked! I paid to see a rheumatologist rather than wait 20+ weeks. I trialled steroids for 2 weeks then had to wait another 2 weeks to see him again, my symptoms came back, which I now know is what he was hoping! straight back on the steroids and they are working a treat, I am down to 10mg for another 3 weeks then reducing by 1mg a month. Haven't heard anything from my GP about booking for a check-in with them though! Glad I found this site though its really helpful to read others experiences and know that I can question things if I feel the dose isn't working etc.

Good luck with your journey, it seems we may be on a long road!

[DorsetLady PMRGCAuk volunteer in reply to Birder21]

You might need to rethink the 1mg a month reductions once you get below 10mg… some can manage it, but some cannot.. and need to do 1mg every couple of months. So don’t plough on regardless if you start to feel a bit of a wobble.

Plus don’t reduce just before you go to SA, nor whilst you are on holiday., and give it a couple a of weeks after return. Holidays can be lovely, but you are out of your normal routine - and that can enough to upset the applecart.