Just saying Hi

[jaybee58]

I am new here just joined yesterday.

My story so far. I started with hip pain probably 5 years ago also knee pain, both diagnosed as arthritis.

About 2 years ago I started with the most awful pain in the back of my right thigh, was told this was Gluteal tendinopathy and was referred for physio. Pain increased in my front thigh muscles and also had tendinitis diagnosed in my left wrist. Carried on with physio but was basically told they had done everything they could and to just carry on with the stretches.

In October last year I was in the most awful pain again, always in my legs and wrist, I have the odd catch in my right shoulder but I think that's the result of a dislocated shoulder several years ago. Surgery did bloods but nothing else happened other than being told my thyroid was a bit low, I already take levothyroxine and my vitamin d was low and to start taking a supplement.

Over the last few weeks I have been suffering back pain, wrist pain, hip pain at night so bad I couldn't sleep. As soon as one pain seemed to improve another started up within hours and I didn't know how I was going to return to work after lockdown because everything hurt so much. I eventually managed to get a triage appointment with the paramedic at my practice who said my ERS levels were raised in October but my CRP levels were OK but could I go in that afternoon for a blood test and he would ring me with results on Friday. Come Wednesday he was on the phone saying both levels were raised and he thought his hunch of PMR when he first spoke to me was right. He prescribed 20mg of Pred to start on Thursday, Friday was my first pain free day for months and so far so good, a few little aches in my thighs but I think that's down to the fact that I am doing more because the pains gone.

The practice pharmacist has phoned today and gone through the program for reducing over the next few months and also offered some acid medication for my bones which I have, at the moment, decided not to have. I have asked for a bone scan as soon as I can have one and a follow up in a few months to see if there is anything to worry about.

Sorry if I haven't used the correct terminology for any of this I had never even heard of PMR a week ago so this is a learning curve for me and sorry it is so long.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Don’t worry about using the right or wrong terms.

Have a read of this - it might help you understand your illness a bit better.

Please ask any questions, any time -

healthunlocked.com/pmrgcauk...

[jaybee58 in reply to DorsetLady]

Thank you

[DogAgilityObsessed]

Hi. It looks like we are at a similar stage. This group looks great and I expect you are spending a lot of time reading up about PMR.

[jaybee58 in reply to DogAgilityObsessed]

Yes, too much time, just so pleased to be pain free for a few days.

[MrsNails]

Hi & Welcome 🌸

You’ll find lots of help & a Warm Welcome here, just a tip for the first few days (if not longer) let the Prednisolone do its work & don’t run around catching up on things just because you feel you can.

Everyone will explain the PMR is still running along in the background, the Pred doesn’t cure the PMR it just reduces the inflammation.

Ask any questions you like, there’s always someone around who can advise you.

Update your Profile with more or less what you’ve written in your Post, where you’re from ie UK or elsewhere & if you’re Male/Female as it helps enormously.

Kind Regards

MrsN

[jaybee58 in reply to MrsNails]

OK will do, thank you

[PMRpro Ambassador]

Hi and welcome - just to add to MrsN's request to put your into into your profile page - it is so much easier to check your history and give a more relevant response to your questions.

Don't be in a hurry to get back to "normal" - the actual disorder is still attacking your body and leaving your muscles intolerant of acute exercise - you aren't cured!

Your paramedic sound on the ball - what did the pharmacist say about reducing? This is a long process so I hope he didn't say it would all be over in a few months!

[jaybee58 in reply to PMRpro]

No they said it would be a slow process and to report back any symtom changes while reducing.

[SnazzyD]

The pharmacist has decided your reduction regime, not seen that before, or were they just relaying someone else’s PMR plan? What protocol are they using?

Good call on the scan because it is always worth having a baseline and if it does turn out you’re a it on the low side it won’t be blamed on the Pred. I was found to have a bit of osteopaenia which was ok to be treated with calcium and vit D.

Watch the urge to do lots due to Pred go juice effect and the joy of being painless.

[jaybee58 in reply to SnazzyD]

It seems the paramedic and pharmacist are deciding on the reduction, of course the dr may be somewhere in the background i guess

[Koalajane]

Hi and welcome to this very informative group. I must say you are sensible to not take the Alendronic Acid until having a bone density scan. My doctor prescribed it for me. Three weeks later she rang and told me to not take any more until I had been to a dentist. I did some research and didn’t take any more ever. A year later I saw a different doctor at my surgery who suggested I had the scan which came back as very mild osteopenia and a recommendation to keep taking the vitamin d3 and calcium and to have another one in a years time. This last one was normal.

If you do have any questions there are some people on here who do know what they are talking about. I hope your PMR journey goes smoothly

[jaybee58 in reply to Koalajane]

Thank you. I have loose teeth and some dental problems with a phobia about dentists so any chance of problems with my jaw or teeth was a non starter, of course I'd need to reconsider if there is a problem with my bones but hopefully there wont be.

[Grammy80]

Welcome,

I'm so happy you found the forum, or it found you! You will find a collection of the kindest and most helpful folks in the world here. They will always walk the walk with you...no judgement...just support ~! I see some of the pillars of this forum have reached out already~!

So glad you are here!

[Daffodilia]

So sorry to hear of your experience in getting diagnosed

I was sent to NHS physio at first (by old surgery) who told me I had lower back pain and gave me stretches

Thankfully private physio and new GP diagnosed PMR a few weeks later

Pace your activities now

Good Luck

[Meggsy]

Hello and welcome. I can recommend the book Polymyalgia and Giant Cell Arteritis: A Survival Guide by Kate Gilbert. 🌻