Please.....re profiles: I know some people like to... - PMRGCAuk

PMRGCAuk

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Please.....re profiles

Soraya_PMR profile image
42 Replies

I know some people like to maintain anonymity on the forum, but would it be possible for everyone to fill in at least some details on their profiles?

Such as age, diagnosis, date of diagnosis, start dose. COUNTRY. Current dose and plain or enteric pills. Your gender.

Often when questions are posed I pop to profile pages for clarity, and all I see is “Hi! I’m xxxx”

Photo just for fun, my staffie Bonnie.

Written by
Soraya_PMR profile image
Soraya_PMR
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42 Replies
PMRpro profile image
PMRproAmbassador

Personally I'd like to see country of residence being compulsory - it makes such a difference sometimes in all sorts of ways. If you don't want it on the profile then I think you have to be prepared to write a bit more in any question asked. Context is very important - diagnosis (GCA, PMR, both), country, current dose really is the minimum to make a sensible reply and how you have reduced is often also essential. If you don't want to say then you can't really expect a useful response - and even worse people may tell you things that are just plain wrong.

Kate did ask some months ago for Profiles to be a bit more detailed but only a few people obliged at the time and new people simply don't seem to bother.

Soraya_PMR profile image
Soraya_PMR in reply to PMRpro

Yes I’ve seen this request more than once before, but no harm in asking again.

One other thing: type of pill, plain or GR. Makes such a difference to suggested timings as well.

I’ll add country to my OP and keep fingers crossed.

in reply to Soraya_PMR

I’m half way through mine & promise to get it finished ASAP

Soraya_PMR profile image
Soraya_PMR in reply to

Thank you kind lady 🙃

Soraya_PMR profile image
Soraya_PMR in reply to

Have just updated mine, was quite behind the times.

PMRpro profile image
PMRproAmbassador in reply to Soraya_PMR

GR only applies for the UK - don't get it anywhere else!

Soraya_PMR profile image
Soraya_PMR in reply to PMRpro

Indeed. But still leaves that alternative for UK residents.

PMRpro profile image
PMRproAmbassador in reply to Soraya_PMR

9 times out of 10 you can tell by language ...

alvertta profile image
alvertta in reply to PMRpro

Yes brits use “whilst”

PMRpro profile image
PMRproAmbassador in reply to alvertta

Not all of them ;)

alvertta profile image
alvertta in reply to PMRpro

Ok. In Canada, my British friend say it. 🍀🍀

PMRpro profile image
PMRproAmbassador in reply to alvertta

I and my husband both do - and it is part of various regional dialects too used a bit differently.

PMRCanada profile image
PMRCanada in reply to alvertta

They also use terms such as “you/us lot”, “nappy”, and “cuppa” 😉

PMRpro profile image
PMRproAmbassador in reply to PMRCanada

Er, some use the terms "you/us lot". Most of us don't ...

PMRCanada profile image
PMRCanada in reply to PMRpro

Oh....just what I’ve noted on here.

Longtimer profile image
Longtimer

He`s lovely!

Soraya_PMR profile image
Soraya_PMR in reply to Longtimer

(She)

Longtimer profile image
Longtimer in reply to Soraya_PMR

Sorry........

Soraya_PMR profile image
Soraya_PMR in reply to Longtimer

No worries, she doesn’t mind a jot.

Nuff1 profile image
Nuff1

Liking the Staffie.

I post re OH - so profile will be his not mine IYSWIM

Soraya_PMR profile image
Soraya_PMR in reply to Nuff1

I do.

Nuff1 profile image
Nuff1 in reply to Soraya_PMR

Think I've updated it suitably

yogabonnie profile image
yogabonnie

I love that your dog is named Bonnie. this is my third Bonnie dog I've met...and I am ever honored!

Bonnie

Soraya_PMR profile image
Soraya_PMR in reply to yogabonnie

She was awarded the name Bonnie because she was anything but! All skin and bones and no fur and multiple wounds. But it suits her well now 😋 she’s tried skinny and didn’t like it, she’s tried tubby and prefers that. So Bonnie it is 😊

Grants148 profile image
Grants148

Lovely dog x

Baileyw06 profile image
Baileyw06

I just updated mine but it says 50%, how do you finish it .There are no more questions.

Soraya_PMR profile image
Soraya_PMR in reply to Baileyw06

Not sure! Mine has always stuck at 90%, but I’ve never added an avatar nor background.

Baileyw06 profile image
Baileyw06 in reply to Soraya_PMR

Maybe you have more questions,I am in the United States

Telian profile image
Telian in reply to Baileyw06

Me too - must be as Soraya says!

Telian profile image
Telian

I'd like to know if I'm speaking to male or female!

Soraya_PMR profile image
Soraya_PMR in reply to Telian

Yup! Would be helpful. Thought I’d requested gender in my OP, but I forgot it 🙄 will add it now.

Oxford8 profile image
Oxford8

Sorry - hadn't realised. Updated now. X

Soraya_PMR profile image
Soraya_PMR in reply to Oxford8

Hmm, can’t see anything? Maybe it takes a while to catch up?

Soraya_PMR profile image
Soraya_PMR in reply to Oxford8

Still nothing there Oxford, 4 hours later.

bunnymom profile image
bunnymom

Taking a look to see what I can update.

clieder profile image
clieder

Just never occurred to me and I must have missed all of the reminders! I typically avoid them in apps as it is not important to the users, but more to the advertisers. It certainly makes sense here and I will do so right away. Also a good tip to look at profiles for context when reading a thread. I can usually tell by drug names whether someone is UK or US, but, short of that, it is hard to know. I noticed that some are doing a signature line with diagnosis, date diagnosed and current dosage - I find that helpful and had thought about doing so. Thanks for the reminder and for the headline that grabbed my attention.

And, thanks to you all for the unending source of information and comfort you provide.

PMR/possible GCA 3/15 7 mg

bunnymom profile image
bunnymom

How do I get an Avatar? I clicked on one of my pictures but it doesn't link.

Soraya_PMR profile image
Soraya_PMR in reply to bunnymom

Just tried from iPhone and it was just a question of picking a photo.

bunnymom profile image
bunnymom

Hmm. i picked one but didn't post. will try again.

Soraya_PMR profile image
Soraya_PMR

Thanks

Soraya_PMR profile image
Soraya_PMR in reply to Soraya_PMR

Interesting reading, complex too.

Dewdrop456 profile image
Dewdrop456

Sorry will try to get it done.

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