Newly diagnosed

[Birdsong69]

Hi, I have been recently diagnosed with PMR . I am female, aged 68 and have been fit and healthy till last November. Reliant on GP for monitoring which includes blood tests. Have just decreased steroids from 15 my to 12.5. However not a good time to be diagnosed as due to lockdown not sure when I will be seeing a rhumatologist. If anyone out there lives in Norwich who has seen a consultant in this area please let me know. Great there is this site to support people with this condition.

[PMRpro Ambassador]

Although top rheumies in the PMR feel that we should see a specialist at least once and preferably as a fast-track service before steroids are started at all, the vast majority of patients with PMR are managed by their GP. Providing there is no question about the diagnosis - i.e. anything atypical such as age, response to 15-20mg pred or unaccountable symptoms that don't really fit with PMR - there is no desperation to see one. And my experience with the first 2 I saw wasn't stellar!

[Birdsong69 in reply to PMRpro]

Appreciate your prompt reply. Many thanks.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

This might give you a bit more info about PMR and what’s ahead for you - healthunlocked.com/pmrgcauk...

[Birdsong69 in reply to DorsetLady]

Many thanks for your prompt reply. I appreciate the link you sent.

[123-go]

Hi. It's unsettling when we can't currently see our rheumatologist but you can ring your consultant's Secretary if you have any questions or need advice. You should be able to find the contact number on your clinic's website. Good luck!

[Birdsong69 in reply to 123-go]

Many thanks for your advice. However I've recently moved to Norwich and diagnosed in lockdown so reliant on my GP who are monitoring my condition. Value this website for support which was given to me by my GP. I will find out if they will be referring me to a consultant rheumatologist.

[Koalajane]

I have had PMR for over 3 years and have not seen a rheumatologist. My gp manages mine, or I should really say I manage mine. If I am concerned I ask for a blood test and I have an annual review with one of the practice nurses, who is also my diabetic nurse. If my bloods do come back high I will be contacted by my doctor.

[Birdsong69 in reply to Koalajane]

Many thanks for your information. Does sound like the route I'll be taking especially during this lockdown.

[Susanrid]

Dr Merry at the NandN is very good. I saw him privately at the Spire and his fee was very reasonable

[Daffodilia]

My GP is great - what would a rhuematologist add?

[PMRpro Ambassador in reply to Daffodilia]

A good GP beats a poor rheumy ...

[Constance13 in reply to PMRpro]

Every time!🍀

[Hidden]

I know that I’m late to this post but I’m also recently diagnosed and also Norwich-based. I was wondering whether anyone knew of a PMR support group in Norwich?

[PMRpro Ambassador in reply to Hidden]

They won't be active at present - but look on the PMRGCAuk website

pmrgca.org.uk/get-support/g...

Or probably more use currently, start a thread asking if anyone on the forum lives close enough for that walk in the park!

[Hidden in reply to PMRpro]

Thanks PMRPro. There doesn't seem to be a local group so you're probably right about a forum post.

[Constance13]

Longtimer lives in Norfolk so she may be able to help.

My sister and husband lived in Norwich for many many years and they were both extremely well looked after by doctors and specialists.

[Hidden in reply to Constance13]

Thanks. I’m being really well looked after medically but am being ‘firmly encouraged’ by well meaning friends to find a local support group. Given lockdown restrictions, I’d value an opportunity to have a walk in the park and an opportunity to compare notes.