Membership of PMRGCAuk

[Mfaepink1973]

This isn’t a request for advice but I was reading jinasc’s History of PMRGCAuk and wondered how many of the people posting requests for advice on here have actually become members. If you’re reading this and are not yet a member please think about becoming one.

[DorsetLady PMRGCAuk volunteer]

Good reminder - and Fran_Benson does that in her monthly welcome post… but I’m sure there are quite a few that aren’t…. £15 a years doesn’t exactly break the bank… and although it’s a UK charity, membership and advice is a available to everybody.

[Sophiestree]

I became a member straight away as soon as I found this site, and also make a yearly donation. Absolute bargain in my book

[Bluey-1 in reply to Sophiestree]

Me too

[piglette]

I must admit I assumed pretty well everyone in UK who used this board was a member, but perhaps I am totally wrong.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Don't think its as simple as that..

Forum has 18,776 'members' according to figures above, but don't think it's possible to know how many are actual members of the charity.. all too difficult.

.. and quite a few members of the charity don't 'do' t'internet!...

[PMRpro Ambassador in reply to DorsetLady]

Plus that is a cumulative figure I think - not the actual currently active number though I think Fran knows what that figure is.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I don’t place much credence on HU figures, knowing how many ‘Hidden’ accounts there are!

Fran would know how many members the charity has, but matching that with forum numbers would be taxing methinks….

[PMRpro Ambassador in reply to DorsetLady]

No, I mean she knows how many of the HU number are actually currently active as opposed to dormant - and Hidden no longer exist ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Hidden no longer exists- since when? HU hasn’t done something sensible have they?

[PMRpro Ambassador in reply to DorsetLady]

In that they are no longer members, they have left HU altogether

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Ahh, with you, thought for a moment HU had addressed the elephant in the room..😂🤣

[PMRpro Ambassador in reply to DorsetLady]

Don't be silly!!!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

😂🤣

[piglette in reply to DorsetLady]

If that number of people are really posting, it looks like a lot are not members in that case.

[Elispeth]

I am a member too 😃! I really appreciate the help and advice that I receive from this forum. Thank you 🙏 x

[Janicecm]

I am a Trustee and I think we have approx 1600 members. Membership is vital to PMRGCAuk for our sustainability. It was a a lifeline for me when I was struggling. I would urge anybody who is not a member to support us if they can. Many thanks

[prunus]

I was a member of PMRGCA before I heard of this site.

[Judywalks]

Me too

[Heron82]

I became a member as soon as I learnt about the site. The support, advice and camaraderie is invaluable. Keep up the good work!

[KingWilf in reply to Heron82]

Me too. Thanks all 💕

[Koalajane]

I am a member and it is a fantastic charity,

I urge you all to help the charity by becoming members

[Suffererc in reply to Koalajane]

Me too. Been a member for long time. Best forum ever 😊

[Motida]

I tried to join today and filled in the form but could not get an option to pay by credit card. Just some blue circles came and disappeared. Any suggestions on how I could become a paid up member. Thanks

[DorsetLady PMRGCAuk volunteer in reply to Motida]

Suggest you send a chat message to Fran_Benson -from her profile - tap link -

healthunlocked.com/user/Fra...

[Motida in reply to DorsetLady]

Thanks DL. I have messaged Fran and hope to hear from her.

I read the other stuff on her page about CT scans and the research. Just wondered what a scan could show? Is inflammation visible as swollen cells/ tissues or fluid in certain places like the neck and hips? Never understood what it is really and why or how it starts. Why do the pains the inflammation causes not respond to pain relief like paracetamol or ibuprofen?

I know what inflammation is if you get an infected wound or skin because it is visible. But internally does it show up and if so how does it look?

Can one ask for a scan to see where said inflammation is forming? Sorry to be so ignorant but PMR and even steroids were quite new to me in October 2022 when diagnosed.

BTW I took your advice and saw the asthma nurse about breathlessness and cough which went away with antibiotics, and she said asthma was stable/mild and in check and that I should see another GP in the practice whose specialism is like I have, to check my heart and lungs. She did not think it was related to Pred. That GP is on leave but I think it is worth waiting to see him in September. I hope he does not type throughout the 10 min slot like the other one! So thank you again.

Pronoun: She/her 80 uk

[PMRpro Ambassador in reply to Motida]

Do you mean a PET-CT?

You are given an infusion of radioactive labelled glucose - any areas of inflammation take up more glucose than areas without. The CT part of the scan shows the structures, the PET part of the scan shows where the labelled glucose has gone, There are specific areas that are typical of PMR - in the shoulders and hips in particular. If you have large vessel vasculitis the large blood vessels show up on the scan,

ncbi.nlm.nih.gov/pmc/articl....

[Motida in reply to PMRpro]

Thank you very much. The link to the article is very informative and the illustrations especially. Some of the terms need looking up as time permits. I doubt this kind of scan would be offered to me but at least I know what sort of research is going on.

Thanks again

[Nightingales]

Well said. It’s a wonderful organisation and such a lifeline. I only wish I had found it earlier . More medical professionals need to inform their patients about it. There are lots of advantages to joining, such as the quarterly journal, forums with leading doctors, videos with current research. Love this organisation. Thank you to all who volunteer your time and expertise.

[AshPen9]

I became a member when I joined the forum. Well worth it.

[Thiago1396]

It could be possible to add an * next to a members HU name to indicate they are HU members.

[DorsetLady PMRGCAuk volunteer in reply to Thiago1396]

All too difficult for HU to do - if they make any change it affects all the forums - not just this one.. unless you expect members to do it themselves… but that’s not what we are about… willing to help anyone - whether a member of the charity or not.

Plus on forum you are identified by your HU name not your actual name that PMRGCA has on their records…

[PMRpro Ambassador in reply to Thiago1396]

Bit discriminatory ...

[Thiago1396 in reply to PMRpro]

I see what you mean, human nature I suppose!

[Rugger in reply to Thiago1396]

We are all 'members' of this HU forum - it's membership of the PMRGCAuk charity that's the subject of this post.

pmrgca.org.uk/how-to-help/b...

[Thiago1396 in reply to Rugger]

Obviously!

[Stills]

interesting point, personally I’m not a member but nor do I have PMR/GCA but a diagnosis of Adult Onset Stills Disease which is an AI rheumatoid condition. It’s not RA either but I also value that part of HU. It appears there are many overlaps in some unusual conditions and we all know they are under researched. Having had Stills since 1979 I’ve yet to meet a GP who has heard of it. For those of us with conditions that span or overlap with others, especially rarer conditions, the knowledge, empathy, advice and general support here is vital not to mention emotionally invaluable. So I’m not a member but try to give back to other users by supporting those I feel can and who have welcomed me here 😀

[Sophiestree in reply to Stills]

I read all of your replies and they are very informative.I'm not pushing at all, but you can be a member of a charity and not have the condition.

Must be tough when a GP does not know about your condition.

[Amkoffee]

Unfortunately or is it fortunately I've been a member for the last several years. My PMR went into remission 3 years ago I think. My inflammation markers are still high with no explanation but I have a lot of other comorbidities many of which could be the cause of the inflammation markers being high. I enjoy being on this site because I think I have something I can share with newbies as well as those who have gone into remission too.

[SheffieldJane]

A direct debit saves you having to remember to renew it. Best £15.00 you’ll ever spend.