CONGRATULATIONS DORSET LADY AND PMR PRO!!!
YOU are the winners!!! No surprise there. Bravo. and a huge thank you. And thank you also to all you other PRM/GCA posters. What would we I have done without you. XOXO
Pmrpro dorset lady!!! YES YES congratulations! THankyou YOGABONNIE for pointing it out xxx
Thank YOU for having faith in my advice....PMRpro, yes absolutely, me...🤔
PMRpro/DorsetLady.Congrats and thank you for all your advise and wisdom.
Don't be daft - you have personal experience of the nastier side of this disease. I just have PMR, it's a pain in the *^$& but doesn't make you lose your sight. xxxxxxxxxxx
But you do the serious medical ‘stuff”, I do the less serious “simple country woman grandma knows best” stuff, so I guess between us we get the message across - which it’s what it’s all about after all.
As I said - honoured to be nominated along you.
Hope you’re feeling better (in PMR pain in the &@#* terms!) all relative, of course 😏
Don't think there is MUCH 'simple' about you or your advice except in all the 'right' ways DL -
ALSO everyone just think WE on THIS forum have the OVERALL winners of ALL the forums HOW LUCKY ARE WE TO HAVE 'THESE TWO' !!!??
I am sure most of us would be in a much 'worse place' without you both PMRpro and DL so many many thanks again !!
That's what's so great about you both. We get the benefit of both your approaches, and you never try to compete with or "outdo" each other with your help and advice. You complement each other, which means we get the best of both worlds! Thank you.
I agree! Thanks ladies.👏👏👏
Both very well deserved honors! Congratulations fine ladies! Thank you for making our paths easier!
Thank you both so much. Informed, considered, thoughtful and kind...mostly!... advice.
Congratulations to you two dedicated souls! Thank you for all the time, energy, kindness and wisdom you share every day. I’m so grateful to you and to everyone who shares their experiences on the forum. ❤️
Congratulations PMRpro and Dorset Lady. I couldn't imagine this forum without the both of you.
Fantastic DL & PMRpro WELL DESERVED - you are both much appreciated !!!
All the best
I think you two should be on the honours list for all the money you have saved the NHS!
In my earlier days with PMR, Celtic was also a tremendous help.
As were a couple of other original Musketeers who have withdrawn into the shadows a bit. I miss Polkadotcom and her very wry sense of humour.
Yes I agree...for me too, along with PMRpro...who just keeps rolling along.
You hit the nail on the head There Paddy! I missed this notification until Yogabonnie brought it to our attention but I was idly thinking the other day - I wish I knew how the UK honours system worked! These two ladies are way more inspiring than any company CEO that I’ve ever come across - congratulations to both!
Thankyou for putting up with me Calling a spade an agricultural implement was never my style I fear...
I once had similar words to that on my annual appraisal🤷🏻♀️can’t think why!
A very brave man, indeed!
Thanks for bringing this here. I feel eternally grateful to DorsetLady and PMRPro. They deserve every accolade. Wouldn’t know how I would have managed this far in my PMR journey without them.
What PMR Pro and Lady Dorset have accomplished with this forum is remarkable. Not only is it informative and authoritative, but it's a place for so many of us to go when we're lonely and frightened in the dark of the night, a place where we can find friends or experience that helps us get through those tough times.
Thank you, aunties, and thanks to all those who reach out to one another just to let someone know they're not alone.
I agree with you entirely GOOD GRIEF,and Congratulations to PMRpro and Dorset Lady on your well deserved Honor.You have Both helped me get through one of my worst winters with my Chronic Refractory PMR leading to more issues.l have bern very tearful and frightened and more so since my other half has been ill ,and my eyes are being effected.I am up early this morning and have an appointment with Dr Hughes Mid morning
And good luck this morning. Please let us know how your appointment goes.
Thank you Dorset Lady, l will let you know .l,m very apprehensive but Always have faith in Dr Hughes.x
To Dorset Lady and GOOD GRIEF..Just to say that my appointment with Dr Hughes went very well , as Always kind and understanding discussing All my issues realising that my Pred Reduction is not going very well due to reoccurring Cellulitus in Both legs when l get below 15/14.05 pred,so it's back on the 100mg Doxycycline A/biotics for a week and then hopefully a meeting with my GP after that.l had a Depomedrone injection in my Butt to hopefully relieve the uncomfortable inflammation from left Buttock, left thigh and leg..also to possibly to help my lower Spine as well and to get me a bit more mobile. We did discuss the Actemara but we will look at that again in the Near Future when l am infection free from the Cellulitus. My Daughter in Law thought it was good that he explained why l couldn't have the Actemara straight away. I have to add soluble vit c and Zinc to my list of Goodies, and Also that at this present moment he feels the PMR is picking up on the stress of my Other Half being poorly and an even slower steroid reduction is advisable .l will see him again in the Summer and hopefully be feeling a bit better and be able to look into the Cataract situation. Best wishes trish 29
Good, sure things will be better in the summer when hopefully your stress is reduced, and then things can be done!
If only I could see him Trish! I saw him once when my mother paid for the private appointment, but the next appointment, which had to be NHS, was moved by the hospital and when I eventually had the appointment, I saw the registrar, who didn't agree with Dr Hughes's provisional diagnosis. Sadly I can't afford to continue seeing him privately. He had agreed that he would continue seeing me on the NHS, as he wanted to help me, but I'll probably never see him again. 19 months on, I still don't know if I have atypical PMR, RA or Lupus or a combination of them all... I had asked my GP to refer me to him as my original rheumatologist was struggling.
ClaireJG why don’t you have this conversation with his secretary? Explain how low you’re feeling, and that essentially you’re still undiagnosed coming up 2 years. It’s possible that she can add a note to your file stating you need to see the main man rather than his registrar.
“If you don’t ask, you don’t get”
It's horrible not knowing what's going on, especially as I've just started back at work (in the NHS!) and have completed a phased return over four weeks. It was either that or retire, as I've used up all my sick leave allowance. I was so disappointed not to see Dr Hughes himself, especially as he had put me on a trial of Hydroxychloroquine (for suspected Lupus) and he had planned more blood tests and a DEXA scan, which didn't happen. I don't really mind what I have now. I just want to know what it is. I thought I had PMR for over a year, then this "combo", followed by atypical PMR.
Thank you for your suggestions and encouragement.
If Doc Hughes had a plan, and the reg didn’t follow it, I’d definitely be wanting to see RH again.
And we know that a PMR diagnosis can be changed over time, but you really need to know where you stand for your own sanity. Plus if it’s not PMR, then different treatments may be more appropriate. If it is PMR then it’s steroids all the way, and at least you know which battles you have to fight.
You have my sympathy, being in ‘not knowing land’ is not a nice place to be. Fingers crossed for you....go make that phone call!
Hi again Good Grief ,l will continue as l clipped the send button too quickly with Blurred vision and my arthritic hands .As l said l have an appointment with a very popular Rheumatologist today and as l haven't seen him since October l have a lot of issues to share with him and l am being taken by a Daughter in law who is medically minded and can listen in. I am more housebound now and constantly in pain and a lot of the people around me can't understand why I don't improve after nearly 14 years of Chronic Refractory PMR..so l wonder what will come of today's Appointment. I had the privilege of meeting PMRpro a few years ago at a Support Meeting and thought from the first moment what a Wonderful Lady she was to talk to. I do often feel out on my own and want to give in and stop the Steroids etc but know l can't. My other Hero is Celtic for her support.Best wishes to All who post on this Forum and we would be nowhere without All the people who reply. I am tempted to ask if l would be able to give Actemara(Tocilizumab) a try but it appears that it works in a simalar way to Methotrexate which l have had in the past in 2 different forms but it effected my Liver with Other Steroid Sparing Agents . I hope Dr Hughes has a Magic Wand with him .Just feeling so low and so Blue .Best wishes trish 29
I do hope Dr Hughes can help you find some relief.
Have faith. Keep us posted.
Hi Trish, oh yes wouldn't it be wonderful if Dr Hughes had a "magic wand". I bet he often wishes he had one too with us lot! Even without a wand, hopefully he has been able to come up with something positive for you at this morning's appointment. You do have such a bad time with PMR and for so many years as well - my heart goes out to you. I doubt Actemra will be on the cards for you as the NICE agreement was for those with GCA - but never say never! Do let us know you get on.
Hi Celtic, my meeting with Dr Hughes went very well and l have put a reply to Good GRIEF and Dorset Lady earlier explaining how l got on.He gave me Hope once again and my Daughter in law liked the way he explained my issues with me .lts back to slowly slowly steroid reduction again when l can. Of course the PMR is picking up on stress at home with Pete being ill. Hopefully Spring and Summer are around the corner. Hope things are going ok with you and Mike .love trish xx
Trish, there is a very good chance that by the time you see Dr Hughes again in the summer, Pete will be better, thereby reducing your stress, ( not good bedfellow with PMR as you know). On top of that, Summer is ahead (after this weekend’s dip back into winter - brrr!) and at least that will help to lift your spirits. It sounds as though you have a caring daughter-in-law so that is a blessing for you whilst Pete is not well. Chin up, Trish - hope to see you next month.xx
I'd love to know how you get to see the "man himself". I'm starting to give up on my "condition" and am feeling very despondent. I hope I have better luck at my next appointment on 13th April.
Oh, Claire, I’m sorry if you’re feeling so bad that you feel like giving up on your “condition”. It sounds as though you are in need of better management by whoever is treating you. If you would like to see Dr Rod Hughes, he is at St Peter’s Hospital in Chertsey, Surrey. He sees both private and NHS patients, the former at The Runnymede Hospital alongside. Perhaps you can ask for referral for a second opinion although I believe it can take a couple of months via the NHS. I have known some patients to have an iinitial private appointment and then seeing him on the NHS. Let me know if you do decide to see him and I will give contact details for both his private and NHS secretaries. Meanwhile, hang in there, things will improve even if it doesn’t feel like it at this moment.
This was my reply to Trish last night:
This was my reply to Soraya_PMR this morning:
Celtic, at my private appointment on 16th October last year, Dr Hughes told me he wanted to continue seeing me, as he was curious about my blood tests, and my signs and symptoms, but then I was sitting opposite the registrar at my next appointment in January, and he disregarded everything Dr Hughes had said. I think if I knew what I was fighting, I would feel more positive. I just feel lonely and scared.
Claire, what an unfortunate state of affairs, and meanwhile you're still back where you started, and suffering! I'm so not surprised that you feel "lonely and scared". Although it isn't any fun having PMR, GCA or being on steroids, it's a million times better than remaining undiagnosed, therefore untreated. Been there for a year, and would never ever want to return there.
If the registrar "disregarded everything Dr Hughes said", did he give you his opinion as to what it was? And was a follow-up appointment arranged? If so, when?
I will see what I can do but I will need some personal details such as your full name, date of birth etc. Please ensure you send these via a personal message by clicking on my name.
Dr Hughes' registrar? Or in another hospital?
Dr Hughes' registrar at St Peter's Hospital in Chertsey. There didn't appear to be any sign of Dr Hughes at the clinic that day, although I couldn't be sure as no one said anything. I think if I'd known for definite, I would have asked to have changed my appointment.
Not sure I'd appreciate a mere registrar disagreeing with RH!
That’s what I thought! I was rather surprised to say the least. Although I just thought “here we go again...”
Also.. I think this was the health Unlocked site OVER ALL> not just PMR PRO. they won from the ENTIRE SITE! whoo wheeee I feel proud of them as If I were one of their sisters!!
Is this announced somewhere on some page of HealthUnlocked that I have never seen?
This is so strange I have gotten other messages that people cannot see it. When I open POSTS.. i.e. my own post... right below sandwiched between my comment and the replies is this. a GREEN letter H and then the following:
Member & Admin Award Winners Announced
Recognising the people who make a difference to you
See who they are
Featured by HealthUnlocked
I have the H but I've just ignore it because all it says is Get more from Health Unlocked and suggests I update my profile, which I didn't think needed updating. I will now go click on the H and see what happens. 😲
let me know! because i have messages from people asking how to get it!
Apparently my profile was 80% complete. I had still to fill in my ethnicity (or tick that I didn't want to share) and choose topics I was interested in (or tick that I was not interested in any of the topics). Then save the changes. Now the profile is 100% complete
but you didn't get the winner's announcement from the H?
I just opened the page again. Still nothing. But then I decided to click on the X which you'd think would close the H line, but that brought up the announcement! Ah the marvels of modern technology. So intuitive. Not.
Thank you for posting, Yogabonnie, I'd never have known otherwise.
I only have smartphone so had to Google several variations. I found it but no idea how I got there. No post seems complete until you have their input. And thanks to ALL at pmrgcauk.
Apparently it’s a promoted post raised by HU. When I was advised by HU they said it would be announced on their blog - something I didn’t know existed . Not sure how you access from our site normally.
Well it's a good thing I shared the link, because I went back to the H and clicked on the X again, wondering what other goodies there might be, but this time it DID get rid of the H line so now I don't have the blog any more. Hahahaha.
Yes they sent this as a draft before the announcement and to see if we would accept the awards.
Apparently a promoted post only stays on the system for a certain time - in this case a week.
Thanks HeronNS. I am clueless with computers. That link has enabled me to see the post.
Ah now all is becoming clear………I’d not seen any previous reference to this and I do read the forum everyday. Thanks for the link HeronNS or I’d still be in the dark!!
The H is the gateway to the blog. Who knew? Besides our resident techie, Yogabonnie!
I LOVE being resident techie. I LOVE computers !!! ask me anything! (especially on a Mac) but am now getting the hang of a chrome book and I love hooking up computer to TV etc etc etc. and working remotes!!
Well then, how do I get my H back? I did use the link to go back to the announcement and there are a bunch of posts in the blog.
Yogabonnie! I might just hold you to that! xx
i see I just reiterated what you have already said here yogabonnie about having the OVERALL winners - so I agree heartily !!
My thanks also, I may not post very often but it is good to know you two are always there for the times when we desperately need piece of mind which I have in the past. Thank you for giving up your precious time, congratulations and long may you reign!
Thank you ladies for all your time and effort .I don’t post much,but you have got me through some dark times.👏👏👏 🍾🍾🍾
Congratulations, kudos and accolades, well done!
The Aunties and the Forum are indeed the 'Best'. This forum has been my lifeline and friend contending with my GCA/PMR. Thank you.
Thanks girls, you’re both very dedicated and deserved winners. I have benefitted from your wisdom and support and it’s greatly appreciated. Long may you both continue to enlighten and sustain us.
Pmrpro dorset lady, Thank you for all of your help! I knew you were winners! Congratulations.
I'm not aware of any competition but if pmrPro and Dorset lady have won then I say CONGRATULATIONS to both of you! Extremely informative and supportive ladies!
There was a small announcement a few months back - which I ignored entirely. So it seems quite ironical I became a winner!!!!!
This site really ISN'T user friendly...
Perhaps we should contrive to meet up just to prove we are two different people! Scary!!
I think that would be a very good idea! Not coming to the south this UK trip - an 80th birthday to go to oop north. But the next one we will be in deepest Dorset...
Very good idea -I’ll put out the warning notices nearer the time 👷♂️!
You're right it's not, I couldn't find anything about an award,..... richly deserved. Good job we are all PMR friendly (andGCA) . What I appreciate is your direct honest answer to any of my queries.....so I can deal with things.......😇
It's unfortunate that so many of us have to refer to this forum because we can't get answers from the "medics".
Thank you.....and Dorset Lady...
I endorse everything said here. I did not have a clue about this condition and have learnt so much from the forum. My 1st hour of the day is spent reading with medication on board and a cup of tea and some nibbles. Thanks for all the support - Jan
Congratulations both and it is well deserved
Dorset Lady and PMRpro - the super-glue holding all of us together in this extraordinary forum. Thank you both, your different styles and knowledge so swiftly to the rescue for those panicky moments, steady voices in the storm! Thanks to you both xx
I don't know what we would do without them,take advice from our inexperienced in pmr Gp? Well done ladies,thank you both for all your help xx
Thank you ladies for all the information and moral support.
Oh so well done you two and well deserved. What would we do without you as you complement each other and give us such good advise.
Thanks to you both and Congratulations! Well deserved!!!
Congratulations DorsetLady and PMRpro. Invaluable advice from you both, since I found the site 18 months ago. VIVA!!
I have only just seen this. What a great result and so well deserved. You are both such a help as we all muddle along. Many congratulations!
Congratulations for the award and thank you from the bottom of my heart. I hate to think where I would be without this forum. Not just the information, but the support and encouragement. I never forget that you don't have to give up your time and effort but I am so grateful that you do.
I don’t HAVE to give my time, but I WANT to. I was helped by the forum early days, unfortunately not soon enough to save my sight, and I feel if my advice can stop someone else going through what I went through then that’s my reward.
Plus, I think I’ve got a built in “agony aunt” gene and broad shoulders (literally & metaphorically) so why not use what you’ve got!
And I also want to - being passionate about getting knowledge about a serious systemic chronic illness "out there". All based on scienific medicine and experience - no WOO!!!! My hair curls when I read some of the guff out there in interwebland...
I was heavily involved in the very first PMRGCA forum on patient.info taking off and becoming one of the most active forums (or is that fora?) on the site. Then we got the NE charity forum up and running until it experienced server/host problems.
How lucky were we that you were in the UK on 12 May 2008 and listening to Radio Newcastle. Then using blackmailing!! I only let you come becos' you made me laugh and I liked your style. You found me in wheelchair having a fag and knew who I was, without me saying anything.
Happy memories and looking forward to seeing you and your lovely hubby (bacon on menu) on 21st April.
Well deserved Marra.
PS No, I did not vote for you..............never even knew it existed.
PPS Happy days on Patient.info, without that forum, no charities, no support groups and no HU either.
PPPS. Yes, I have a fag on the go or is it (:?
Oh...so you’re the one to blame for herself! Well done you...and happy birthday wishes if that’s you!
Mea Culpa and yes three score years + 10 in overdraft time on 24th April. 21st is a Saturday and just in case I don't make the 24th. ..................................the 12 May was our Launch and on 13th March was our 'Tin' Anniversary so we are having a bash on 26th March.
Hug from Hel.
Many thanks and much gratitude should be heaped on you then, for your foresight and courage 10 years ago to start the whole thing off.
Have a great reunion and birthday party.
Not 'courage' just plain angry. My Mam had both GCA & PMR approx 21 years before I encountered GCA, and little or no progress in those 21 years. I was furious and got out of my pram. Why so, woman...........in all walks of life - they were not counted as breadwinners. Therefore an illness that affected 90% women just was not a priority, for all that most of those 90% had been breadwinners or were breadwinners and when older, carers, childminders etc.
There were also 4 others and the main instigator was Kate.............so 5 in all, and 4 are still volunteering and then we met Bhaskhar. I was the ancient Brit and the gobby one. The others are much more polite and, I might add, brainy.
The national, I think, is having their celebration in September at their AGM. I look at that little acorn, striving to become a big Oak. The main aim, was always support and then raising the profile and research. The 10 year old acorn is now a strong sapling that will not go away until cause and cure are found.
I should say, I am a Geordie and still live on my 'kent' ground after wandering down to the big smoke, once for 7 years and then later for around 9 years. Both times, I could not wait to get home, where a spade is called a 'bloody shovel'.
I also want to say, that I love the way that MB named you Aunties.........and am so pleased that both you and PMRpro are winners. Not that I needed to see a vote, both of you have been the kind of people I always hope to encounter.
Suddenly I am telling you all this and on a public forum, I now know I have lost my brain, if I ever had one. C'est la Vie
PS: Anyone else reading this, perhaps you could think of seeing if you could do a bit of volunteering.
Yes, can well understand your anger...I felt that too! But anger affects people in different ways, some just get bitter and twisted, others like you do something to right the wrong.
You (and as you say others) did have the courage to start the charity, and if you hadn’t there would be lots more worried patients in the same situation as you, me and many others were in the beginning.
As I’ve said before, this charity and forum got me back to being me (little did you know what you’d unleashed back then) so my being on here ad infinitum is to say thank you to those who went before me, and hopefully make the journey a little easier for those coming behind me.
I fully empathise with be being the gobby one, the one that sticks her head above the parapet, and not necessarily the brainy one - but we are what we are.
You just fail to be an Arian by a few days, but I’d say you had a great many of our tendencies, so I’ll make you an honourary one. An Arian and a Viking goddess - how can we possibly fail 😉❤️.
Congratulations ladies and a personal thank you for your dedication. My PMR journey has been life changing but manageable thanks to your advice, knowledge and continual support. I think someone mentioned the saving on the nhs that your valuable contributions have helped, and I would definitely second that. Heartfelt thanks to you Both, Jane X
The only thing I have trouble wrapping my head around.. ..by the way everyone writes and thinks...is that we are, most of us, in our 70's and 80's not in our 30's and 40's. !! What a group!
Yes we’re young at heart if nowhere else! And like a good wine we improve with age!
Is that pushing it too far! Nah! As we’ve said before we lived through the 60s and like that decade - indestructible!
Yay! Thank you to both of you great friends!!!
Wow! I have just found this thread, and I must have missed something somewhere along the line as I didn't even know such an event was on the cards. So thank you so much yogabonnie for posting this. Very deserved congratulations to both PMRpro and DL. Pity the other two PMR forums don't run the same event - PMRpro would pass with flying colours there as well for all the wonderful knowledge and advice she passes on.
Totally agree! plus my thanks to you too, at the beginning of my journey you both, with others taught me all I know, or maybe all I don't know!
Hopefully, your names will be up in lights in the next PMRGCAuk newsletter, too! Hope you celebrated with a extra glass....or two! I will toast you both - even if it is only water!
I’ve only just seen this award thanks to the link from Heron NS.
Congratulations to PMRpro and Dorset Lady and thank you for your time and knowledge that you both give to this site. PMR hasn’t been the easiest of journeys but it would have been much harder without you two by my side!! Very well deserved. 😀🙏🙏🙏
My heartfelt thanks and congratulations to you both and also to the community. As Linda says, it would have been much harder without your help. It's really appreciated.
Sorry I have only just seen this post, congratulations to you both, you have both been tremendously helpful not only to myself but everyone here, you are both a great asset to this site.
Heartiest congratulations to you both, and a huge thank you to all the contributors on this forum.
After a year of seeking a diagnosis, and a year trying to please the docs by following their advice, I flared.
Miserable and incapacitated with pain in hand and knee I trawled the internet and found you lot. It is no exageration to say that, as for many others, the information, understanding and support of this forum has utterly transformed my PMR journey. Occasionally it becomes my PMR adventure and sometimes, recently, I have even been known to see the funny side of it.
Congratulations to you both. Thank you for all the knowledge you have freely shared.
I'm so glad you both won, you deserve it. I don't post much but I do read a lot of the posts and you have both helped me understand better what I'm dealing with and Dorset ladies information for new patients has been priceless. I've shown it to my son to give him a better understanding of PMR and it really helped me understand better myself. Thank you so much x
thank you for highlighting this yogabonnie - I'd like to express my gratitude both to PMRPro and DorsetLady for all their wealth of experience and advice. Since diagnosis mid Oct 2017, without all the information and generous involvement of both (as well as other forum members), the experience would have been a much more isolating and frightening one - as it is, it's so reassuring to know that other people understand what you're going through, and the supportive and positive atmosphere on this forum (and others!) is invaluable ... thank you again
Wonderful and so well-deserved by these two lovely ladies. I don't think there can be anyone who hasn't found some sort of help or good advice from both of them. I certainly have, even though I am unable to visit the site very often, without their input I would have struggled so much more to get through this PMR stage of my life. My thanks don't seem enough, so this award says everything on behalf of us all!
and GCA.. I’d forgotten how helpful it is . If you haven’t read it yet give it a go. To have all that...
over 6 weeks. Had hip xray. Nothing found! Also thanks to this group he has put me infor a Dexa scan...
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