SuttonSea

[Suttonsea]

First, a big thank you to all of you who give your time and personal knowledge to help PMR persons like me.

I’m now 4 months into my PMR journey, tapering for the last 6 weeks on 9mg Pred. Had my first meeting with NHS Rheumatologist 3 weeks ago. Nice lady,confined it was PMR, said, carry on with GP’s taper programe and here is a pamphlet by Versus Arthritis,which I already had!

No follow up,discharged back to GP

Given that my GP has also had a letter summerising my situation,no monitoring plan for the future has been forthcoming?

Is there a recommended program of blood tests to check for diabetes,Vit D levels, calcium uptake, PMR and anything else associated with this disease of ours?

At 84, having already been blessed with Cervical and Lumbar stenosis for 4 years or more, perhaps the NHS have decided they have helped me enough?

I’m interested to know if anyone has been given a monitoring program.

Mustn’t Grumble

[piglette]

I think a lot of us once we have had PMR for a few months learn the ropes and can carry on without quite so much support from our doctors. In fact 75% never even see a rheumatologist. How often have you have blood tests so far? Your GP should tell you how often they would like to do any tests.

[Suttonsea in reply to piglette]

Initially,after being telephone triaged by GP. Then again,3 months later before seeing the rheumatologist because of positive rheumatoid factor.For information,CRP reduced from 40 to 3.

[piglette in reply to Suttonsea]

I feel every three months is about right for CRP. Others you can probably leave longer. I always go for the maximum number of tests I can get from my GP which is not many!

[Suttonsea in reply to piglette]

Thanks. Will do.

[Rugger]

I have blood tests every 3 months or so to check the inflammatory markers (CRP & ESR), although they are not elevated for everyone with PMR. (I also have GCA and am fortunate that my markers do rise when the conditions flare.) The GP also does a Full Blood Count, liver and kidney function etc which are fairly standard blood tests. I have vitamin D level and HbA1c (for blood sugar) every 6 months.

Discuss with your GP how often and what they intend to monitor now that you are under their sole care. Sometimes we have to be proactive and ask to be monitored!

[Suttonsea in reply to Rugger]

Got it! Thanks

[Rugger in reply to Suttonsea]

I forgot to say that my late Dad's byword, when asked how he was, was "Mustn't grumble" - the added comment being "...it doesn't help if we do"! 🌻

[Suttonsea in reply to Rugger]

I would agree with that, a like minded person.

[PMRpro Ambassador]

I doubt many have been given a monitoring programme - will very much depend on the GP I think. Three monthly bloods, weight, BP etc would be ideal but 6 monthly is probably fine. And the trend appears to be check your own BP these days! The so-called markers for PMR aren't really that much help as often they lag behind symptoms and can rise in response to all sorts of things not just PMR.

[Suttonsea in reply to PMRpro]

Thanks for that,appreciate and value your comments.

[Preposterous in reply to PMRpro]

This is very helpful- I’ve been expecting a GP review about now (last blood tests were in June) but it looks like I need to proactively book an appointment. The GP I saw had told me he’d be moving on and another GP would be dealing with me but looking at my notes on the NHS app I was surprised to see the words “Status; Past”’ under my PMR condition record!

[PMRpro Ambassador in reply to Preposterous]

What????? Challenge that!!!!

[Preposterous in reply to PMRpro]

Yes I will!! Very odd!

[PMRpro Ambassador in reply to Preposterous]

My mother was once told she was dead ... Another patient, same name, same DOB, had died and they sent mum's notes back. They failed to check the address - very rookie error that.

[Preposterous in reply to PMRpro]

I've heard of that happening before, crazy and must've been very distressing!

[PMRpro Ambassador in reply to Preposterous]

She was a robust lady and argued her case - but the receptionist did try to answer back I believe! But if it had been a frail or confused patient it might have been different!!