My PMR Journey so far: The condition started with a... - PMRGCAuk

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My PMR Journey so far

Cricket47 profile image
8 Replies

The condition started with a stiff neck and in early February I experienced a lot of pain in my upper arms, a great deal of stiffness and loss of energy and strength. It took a few weeks to get to see a GP and initially he only prescribed painkillers. I eventually got Prednisone prescribed after a second visit to the GP and started taking a 20mg dose daily on March 30th. Within a couple of days I started to experience some relief from the pain and stiffness. Feeling much more optimistic about things now.

I am now seeing a Rheumatologist privately due to at least a six month wait on the NHS.

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Cricket47
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8 Replies
Koalajane profile image
Koalajane

Hi and welcome.

My GP has always looked after me with my PMR and I was never referred to a rheumatologist. She now lets me taper or increase as she feels I know my body best.

Good luck to you and I hope your rheumatologist is a good one as they seem a mixed bunch

Bcol profile image
Bcol

Hi there, glad to read you have been diagnosed and thing are/have improved. Wondering why you've decided to go to a Rheumy. Generally PMR is monitored by the GP. I've had excellent service from my surgery throughout my PMR experience.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi and welcome,

Whilst you’re waiting for Rheumy have a look through this -

healthunlocked.com/pmrgcauk...

… and a wander through the FAQs - in your own time, don’t try and cram in too much too fast.

piglette profile image
piglette

If things are going well you may find you do not need a theumatologist. Around 75% of people with PMR just rely on their GP and never bother with secondary care.

PMRpro profile image
PMRproAmbassador

Have you asked for a f2f appointment with the GP to find out how much he knows about managing PMR? The majority of patients with PMR are managed by a GP and often very successfully. A good GP is preferable to a poor rheumy and even going private doesn't guarantee you get a good one who is up-to-date on PMR.

Have you already made an appointment privately? If not, ask for recommendations near where you are or are willing to travel.

alangg profile image
alangg

If your GP is willing to let you manage the dosage of pred as according to your symptoms and accepts a slow, tapering plan to reduce the dose, I would probably stick with him/her.

I was referred to a Rheumy by my GP (before I found this forum) but the Rheumy replied: 'textbook case, treatment working, don't need to see him'. So I looked on the web, found this forum and drafted a DSNS plan to reduce the Pred and the GP was absolutely fine with that and asked for a copy of the plan herself as she hadn't seen one before.

But obviously, if the symptoms get worse or you have GCA worries etc, then a Rheumy is probably a good call.

WaltzG profile image
WaltzG

I went private since GPS help was scarce during covid and then very contradictory. Eventually saw a consultant who also heads the areas NHS arthritis clinic. He was wonderful and now sees me thru the NHS. Happy to recommend if anyone needs.

Karendeena profile image
Karendeena

Welcome, you will find a Great deal of support here. We are all friends and on this journey together.Pleased you are experiencing relief a classic response to confirm PMR. I started May 2021 on 15mg down to 2mg but it's taken me 2 years, a couple of flares and I am not out of the woods yet. Like you I paid to see a rheumatologist

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