My PMR Journey so far

[Cricket47]

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.

[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]

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 PMRGCAuk 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]

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 Ambassador]

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]

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]

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]

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