New diagnosis: Just diagnosed with PMR and started... - PMRGCAuk

PMRGCAuk

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New diagnosis

Jac-lin profile image
13 Replies

Just diagnosed with PMR and started on Pred. Wont know for certain until the pain goes. If it doesnt then back to the drawing board.

I was very reluctant to take Pred but felt i had no alternative. Very unhappy at moment but have to learn to live with it. Im only 64 and feel this may take up a lot of my time, instead i should be enjoying myself.

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Jac-lin profile image
Jac-lin
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13 Replies
SheffieldJane profile image
SheffieldJane

Honestly you can still enjoy yourself once you adapt to PMR. If it is PMR. You will know soon enough, expect at the very least, a 70% reduction in the pain and stiffness. Let us know.

Jac-lin profile image
Jac-lin in reply toSheffieldJane

Thanks for that. Im on day 3 of 15 pred. Not noticeabley better yet.

SheffieldJane profile image
SheffieldJane in reply toJac-lin

I wasn’t exactly doing a cartwheel on day three but moving in that direction. Have they any other theories?

HeronNS profile image
HeronNS in reply toJac-lin

It can take several days - only a few of us experience the six hour miracle! I think it was the third day I was free of pain although I did feel slightly better before that. And some people simply need a little more to begin with, like 20 mg.

Jac-lin profile image
Jac-lin in reply toHeronNS

I definitely have arthritis. Hips, knees, toes, thumbs. I thought that was the problem but the more i read about pmr the more i think the GP is right.

HeronNS profile image
HeronNS in reply toJac-lin

I thought I had worsening osteoarthritis, and my new young doctor made the same assumption for over a year. It was a more experienced doctor who eventually diagnosed me. Now that I'm at a very low dose I do have quite a bit of arthritic discomfort, but none of the disability PMR caused. It would be nice to be painfree as I was in my early days on pred, but at least I can function these days. Pre-diagnosis I thought I was heading to a life of total disability!

PMRpro profile image
PMRproAmbassador

I was 51 when mine started - and with pred it doesn't stop me doing anything I want to.

I'd suspect that 15mg isn't quite enough - the latest recommendations say the lowest effective dose in the range 12.5-25mg/day.

rheumatology.org/Portals/0/...

piglette profile image
piglette

I am sorry you may have PMR. If you accept that it is life changing and go with the flow you will find that there is a new world out there. Also pamper yourself which is very pleasant.

Grants148 profile image
Grants148

Welcome Jac-lin,as Sheffieldjane has said,if you have PMR the steroids will reduce your pain quite considerably,l was much better within 48 hours and my energy levels ‘hit the roof’ .Good Luck !

teesher profile image
teesher

Hi Jac-Lin, you will find lots of friends and good advice on here. We have all been where you are. Those early days are scary but once the pred gets onto an even keel, you can start to live again. I've had PMR for over three years and manage to hold down a job. In the early days, I really thought I'd have to give up but Pred literally gave me my life back. I'm down to 4mg now. Slow and steady is the mantra we all live by on here and it really really works. You will get there, promise.

Mary63 profile image
Mary63

15 mg may not be enough for you, so if you don’t feel at LEAST 70% pain reduction, it would be worth asking for 20mg, just to be sure.

If 25mg does not help you I think is likely you don’t have PMR.

I was diagnosed when I was 63. And being told I was just getting old for 3months prior to that. Now 65. I need to pace myself....cannnot live the life I used to, but I’m ok. I do nearly everything I want to, just cannot live life to the full all day every day. This forum is a great help in enabling understanding of the disease, and how to handle it best. Stick around!

Mary

Jeannie29 profile image
Jeannie29

I felt better day1 and day 2, but by day 3

I really did feel that a miracle had happened. I could get out of bed, dress myself, and get into the bath, all things that I couldn’t do before. ( had visions of. being in a wheelchair very soon)

Side effects of Pred are not good but mostly you can get used to them.

Don’t let PMR take over your life

I wish you well x

Jac-lin profile image
Jac-lin

Thankyou all, i just have to come to terms with it and hope i feel better soon.

Off to see the doctor Monday which will be a week on Pred.

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