Competing or Complementary Forums?

[montebello]

Hi all,

About 8 years ago I experienced a bout of PMR and found a UK forum called "Patient." That group got me though the PMR, which lasted 6 years -- especially the dead-slow method of tapering.About 6 weeks ago, I started having symptoms of GCA and found THIS forum, which has helped me enormously already. I was officially diagnosed as having GCA a few days ago after a temporal artery biopsy.

Now here's what I'm wondering: which forum should I use? Are these competing or complimentary forums?

Any comments?

Thanks so much.

[DorsetLady PMRGCAuk volunteer]

Not competing…

Many of those originally on the “Patient” forum are now on this one….But some are still on both, although this one is a lot busier….and under the auspices of the national charity…whereas if I’m correct the Patient one is run by local group(s) in UK.

If that’s incorrect, I apologise.

There are also groups on Facebook…..

[PMRpro Ambassador in reply to DorsetLady]

patient.info/about-us

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Thx

[PMRpro Ambassador]

Stay here - all of us who were over on the patient.info forum are now here. They did a lot of "improvements" which made it harder and harder to use and fewer and fewer people were in the group. A couple of us continued on both for a long time but we confess to telling new people who appeared to come here where they would meet a lot of people whereas on the Patient forum there are perhaps one or two new posts in a couple of months and HeronNS (here) and I were the only people replying at all!

It is a great shame because without that forum, part of the patient,info site started by a couple of doctors in the north of England to provide reliable online information for their colleagues, this forum would not exist. Five ladies met there and came up with the idea it was time to "do" something about the lack of support and progress in management of patients with GCA and PMR. jinasc on this forum was one of them and between them they formed first the NE of England charity and later the national version which has become PMRGCAuk, under whose auspices another lady set up this forum. This is now the largest PMRGCA support forum of its type - probably in the world. This is strictly moderated - unlike the FB versions although one of the FB groups is under the auspices of PMRGCAuk as well.

[montebello in reply to PMRpro]

Is "Eileen" here?

[PMRpro Ambassador in reply to montebello]

Moi Anhaga is HeronNS.

Who were you there?

[montebello in reply to PMRpro]

I was bob16325

[PMRpro Ambassador in reply to montebello]

Welcome to the mad house - because it can get a bit wild here at times

[Blackcat1M in reply to PMRpro]

Sorry Madmags 2

[Blackcat1M in reply to PMRpro]

I thought it was you, I believe I went under Madmags2I had so much help from you and Heron🌼

[PMRpro Ambassador in reply to Blackcat1M]

Still here and banging on, both of us

[Sophiestree]

Sorry to hear you are back, but I think you have found the best place and you will clearly find 'old friends' here. It has literally saved my sanity on so many levels.

[Maisie1958]

Back in the day I read posts on Patient and HU. Both were such a help to me. Somehow ended up just here, I hadn’t realised “patient” was still going. I’ve had a comparatively easy time thanks to the contributors on both these forums ❤️

[PMRpro Ambassador in reply to Maisie1958]

To be honest Maisie - I'd not say it was "going", more "gone" ...

[Maisie1958 in reply to PMRpro]

A bit like me sadly then! 😂Actually to be sincere both of the forums made a huge improvement to my QOL when diagnosed in 2015 - an immense thank you to yourself and the others that contributed then and still today 💕 x

[Longtimer in reply to PMRpro]

I used it before going on here, but when it changed and became more difficult to use I gave up....never understand why things have to change when it's working ok.....

[PMRpro Ambassador in reply to Longtimer]

Me neither - shows we are getting old I suppose! But I don't think I have eveer experienced a "new, improved" product of any sort that really was ...

[Longtimer in reply to PMRpro]

Absolutely!.......I have an old type phone, should rep lace it really, but it does what I want except take photos, and use apps!!.......the apps thing really winds me up, assuming everyone can "just" download the app!......so do I bother or not.....they then do half the things we never use........I must stop, or could go on forever, especially about TV's!!

[PMRpro Ambassador in reply to Longtimer]

I wanted to do something the other day on the computer - sign in to Amazon for some reason, never usually need to to buy a Kindle book from the email notification - and they insisted on sending me a text with a confirmation, But I had to tap on the link. Can't do that on a burner phone. So had to abandon the purchase.

[Longtimer in reply to PMRpro]

It's the car parks that are upsetting older people here....swipe your card!....some haven't got a card!.....I feel sorry, and will always stand-up for older and disabled people who can't do these things.....they took their cash for all those years.....must stop now, I don't have any adrenalin to cope!!..😉

[PMRpro Ambassador in reply to Longtimer]

Other way round here - no card option! But they are having to introduce that by law. I can't work out how our P&D machines work, mainly as I never know how long I might need - so I park at the hospital where you can stay as long as you like/need and pay for what you used before leaving. I am very partial to swiping my card now I have a card that does it! OH's was broken, always needed a PIN.

[Longtimer in reply to PMRpro]

Yes, I swipe, when I have the energy!....

[PMRpro Ambassador in reply to Longtimer]

Saves sorting out the small change ... Though here are very good - hold out a palm full of shrapnel and they take what they want!

[Longtimer in reply to PMRpro]

Most are po und coins .....no change given....IIt did say on the news with things being so tight, people are using more cash, because to swipe they are spending too much.....too easy.......

[herdysheep in reply to PMRpro]

I rarely use car parks that cost because of the hassle. Haven't got the energy to be anything for long anyway, but I did watch a so called tech savvie person taking absolutely hours to pay with his phone in the time it took me to walk from my car, work out how much, pay in cash, walk back and sit down watching him!!

[DorsetLady PMRGCAuk volunteer in reply to herdysheep]

..probably not used that particular one before -so had to download app, then download card details, get them verified…blah,blah.blah ..,, My DIL had same issue last week when she took grandson somewhere different! Not that she’s particularly tech savvy -even she admits that….

[herdysheep in reply to DorsetLady]

Totally bonkers. No way will I be downloading apps for such purposes, if at all. Labour saving? Who's labour. Enough to bring me out in spots.

[DorsetLady PMRGCAuk volunteer in reply to herdysheep]

Keeps some spotty youth in a job!

Having said that, my son’s first job after leaving Uni last century was writing computer programmes 🤔… not sure Apps had been invented then though …

[PMRpro Ambassador in reply to herdysheep]

I don't use pay carparks if I can help it because I'm mean ...

I park at the village carpark or walk and catch the train - already paid for with my Mobicard! I wouldn't use te train if I had to mess about with buying a ticket each time. The hospital carpark is easy and I had to learn how to use it with OH, one supermarket has a barrier, same as the hospital, so I can cope with that - and you get an hour free.

[Longtimer in reply to herdysheep]

Love it!

[SheffieldJane]

This one of course! 😉

[artfingers]

Yes, I started at Patient too and the help was extremely valuable. Then I was glad to find this more active yet still very helpful forum.