UK based people

[Lottieandlola]

Hi folks, only recently joined the group and I'm reading in a lot of the posts that people have been referred to a specialist/consultant. Is this the norm?

I was diagnosed Sept '21 but because of Covid I've not even seen a doctor! Was on pred from Sept '21 to November '22. I was ok when tapering down but once I got to 1mg (the last month) some symptoms started to gradually return. Had a telephone consultation with GP in December wouldn't put me back on prednisolone, prescribed painkillers. Pain and stiffness gradually getting worse.

I'm very anxious about going back to my GP so any help or advice would be very welcome 🤗

Thank you all

[DorsetLady PMRGCAuk volunteer]

Not everyone needs to see a Rheumy - but if you have a GP that thinks PMR only lasts for just over a year -then maybe you do as they obviously don’t know much about it!

Even though it is often quoted as only lasting 2 years, for many it’s a lot longer… and it’s not just a matter of starting the steroids and reducing until you’ve finished course..so long as your PMR is active you need medication - and as little as 1mg may be enough….

Maybe have a read of this - and is there another GP in the surgery who may be more knowledgeable and sympathetic?

healthunlocked.com/pmrgcauk...

[piglette]

Around 75% of patients stay with their GP in primary care and never go to secondary care. People tend to go to a specialist in the case of problems or that their GP is not that confident with their knowledge on PMR. If your GP is prescribing painkillers for PMR it sounds like they haven’t a clue. If you can see another GP who may know about PMR perhaps go to them. If you get referred to a rheumatologist on the NHS, you may have to wait months. I would shout very loudly or burst into tears with your current GP telling them that you are in a lot of pain since stopping steroids. Don’t let them get away with it. GPs tend to work on the principle out of sight out of mind. You need to go on at them.

[Bcol]

Morning LandL, sorry to read your story, sounds like you unfortunately have a GP that has no clue about PMR or how it is managed. To have got so low so quickly without running into problems earlier is pretty good going, but you have now gone below the dose that is needed to keep the inflammation under control. Pain killers will, as you have realised, be of little use. Suggest you need to get the surgery and if necessary become a real pain until you get to see another doctor who is prepared to help. Probably worth taking some crib notes with you and some of the information that DL has provided. Good luck and hope you manage to get some help.

****Edit****

Forgot to add, been on the journey since June 2020 and very happy not to have a Rheumy involved.

[SouthStrand]

I was diagnosed with PMR in March 2022 and have never seen a Rheumatologist. My Doctor and myself is managing the journey. We are doing great together. She organises blood tests and my body tells me how much to taper. I am a retired nurse so I feel I can take the reins. Love reading this groups experience because it’s so helpful. ❣️

[Koalajane]

I found it hard to believe you were diagnosed over the phone. I saw my GP for a couple of months while she did blood tests, MRI and X-ray plus urine tests to rule out other things. She was great and after 6 months she let me cope with my dose myself. I can have blood tests whenever I want but have realised now that I can go by my symptoms. I have an annual review and my meds are on repeat prescription.

Good luck to you. I hope you can find a GP who is knowledgeable

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

Not disagreeing with you about diagnosis over phone -but post covid things are very different from what went on before-and in some places GPs seem to be an endangered species…🤦🏻‍♀️

[Stills in reply to Koalajane]

the locum at my surgery told me over the phone I may have cancers of the pancreas or ovaries without even considering my chronic AI condition of Stills which has organ involvement. I’ve lost 21 pounds in 8 weeks without vomiting or diarrhoea and a f2f appointment is still denied. I’m to report back in 6 weeks but if weight loss continues at the same rate I’ll be too weak to lift the phone by then as I’ll be down to less than 7 stone! Mind you I’m only 5 foot 1 so it’s not dangerously low but it can’t be good for my osteoporotic bones!

[PMRpro Ambassador in reply to Stills]

That is utterly appalling - at every level! I wonder how they would feel if told something similar on the phone without any proof.

[gallagher1951]

My husband was on Pred for three and a bit years. He was diagnosed with PMR by a consultant at the Hallamshire in Sheffield. He was referred there by our GP practice who did not diagnose him at first. One doctor said if he was sore,he should rub Ralgex everywhere 🙄. He had a battery of tests of every sort and had great treatment once diagnosed. The first time he tried to taper, his symptoms came back with a vengeance. He was put back on Pred and over time,he managed to taper effectively to nothing. He has been off Pred for over a year now. Painkillers had very little effect on his condition, he tried them. He absolutely had to take Pred to control the pain and discomfort.

[Lottieandlola]

Thanks for your replies guys, think I need to see a GP now! Doesn't help that I've changed surgeries since diagnosis - my old surgery did seem a bit more clued up. Will try a different GP at the new surgery.