TRURO Meet-Up Group

[Pollyanna16]

Just a reminder that we have Dr Andy Pothecary, Specialist Rheumatology Pharmacist talking to us on Monday at 2pm, Truro Golf Club. He will be talking about common (& some not so common treatments) & possible future treatments for PMRGCA. Look forward to seeing you there.

[jinasc]

Would be interested in what he has to say 'on possible' treatments in the future. Will you be able to post what he has to say please?

[Pollyanna16 in reply to jinasc]

I’ll do my best !

[PMRpro Ambassador in reply to Pollyanna16]

Ask him if he has a summary sheet or a presentation he could send to one of us maybe.

[Pollyanna16 in reply to PMRpro]

Will do

[PMRpro Ambassador]

My husband doesn't believe him!!! I wish I could come - just to meet him

[Pollyanna16 in reply to PMRpro]

He’s real ... honest 😉😉

[PMRpro Ambassador in reply to Pollyanna16]

I want to see his birth certificate

[HeronNS in reply to PMRpro]

I wondered whether it was his real name. Did his parents plan this?

[PMRpro Ambassador in reply to HeronNS]

It is his real name - now at least! He's on Linked-in.

I once saw a birth announcement:

"To Fred and Mabel Conquest: a son, Norman"

How could they?

[Pollyanna16 in reply to PMRpro]

Yes he is real! I know, he has treated me. When I first got the appointment letter I had to look him up as I thought it might be an error.

[Pollyanna16 in reply to HeronNS]

🤣🤣🤣🤣🤣

[jinasc in reply to Pollyanna16]

Pollyanna16, I looked at your profile and have no idea whether you have PMR, GCA or both. It would be nice if you could add more details please.

[Pollyanna16 in reply to jinasc]

Oops will do ! PMR since 2011, adrenal insufficiency prob forever 😬

[Pollyanna16 in reply to jinasc]

I hadn’t realised the conditions were “hidden from view” have corrected & filled in some detail. Thanks

[jinasc in reply to Pollyanna16]

Don't feel bad about it, loads of people do not realise that. So I thought I would just do a reminder.

[Rugger in reply to PMRpro]

My husband doesn't, either! He's gone off muttering "...nominative determinism"!

Truro's a bit too far from Yorkshire or Italy!

[PMRpro Ambassador in reply to Rugger]

The first time I saw it I said "Nom derm gone mad ..."

[YuliK]

Do you think that the chronic tiredness could be connected to the Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME)...

So many folks who have had pmr ,and are still coping with low doses of prednisone are suffering this dreadful tiredness.

Just a thought ?

[PMRpro Ambassador in reply to YuliK]

Don't think so really - not in my case. They are different. Autoimmune disorders are connected by the fatigue. And after long term pred- so are low doses of pred.

[YuliK]

Just thought that possibly pmr could be a trigger to CFS.

I wonder if the pmr researchers have looked into this possibility ?

Thanks PMRpro for your answer. 👇

[PMRpro Ambassador in reply to YuliK]

Mine would have been the other way round - ME came first. And I know there are a few others on the forums with the same sort of history.

[YuliK]

This link below is a quite interesting read. I know you have a medical mind, so it should be 👍 for your perusal..

mayoclinic.org/diseases-con...

Seems the symptoms are very similar to pmr. Just the treatment is different.

Curious to read what you think ?

[PMRpro Ambassador in reply to YuliK]

My ME was quite different to PMR - no pain for a start. Just mind numbing fatigue and nausea. And weight loss - never lost weight with PMR more's the pity! Gained because of inactivity. With ME I went down to about 8st in 6 months and kept if off until I was pregnant - and gained a ton because of pre-eclampsia.

[YuliK in reply to PMRpro]

I didn’t know that you unfortunately had first hand experience with ME. No wonder you are a walking encyclopedia. 🤗

[PMRpro Ambassador in reply to YuliK]

I was lucky - and it wasn't diagnosed as such that long ago, yuppy flu was a very new "thing". But it was typical: a viral-type episode with raised liver enzymes and extreme fatigue that lasted about 6 months as an acute thing. Then a slow improvement over the following few years.

[tina-shelley]

Looking forward to meeting you all.

[Galloping]

I wish we had a group in Warwick/Leamington area. Would be good to meet

up in person.

[Pollyanna16 in reply to Galloping]

Maybe HQ could help with that. I guess there is a regional contact.

[PMRpro Ambassador in reply to Galloping]

Nothing comes from nothing ...

A group starts from small beginnings - ask Rugger. All you need is to find a couple of others to meet for coffee informally and talk about how to go from there. Her group started with a few - and grew to 39 members.

[pokeynokes]

I'd like to attend - can I just turn up there tomorrow?

[Pollyanna16 in reply to pokeynokes]

Absolutely yes do come along any 2nd Monday is fine. No need to book! Do you know where the golf club is?

[pokeynokes]

Yes I do thanks. See you there!