I just wanted to let you know that after 8 years, I have decided to stop being an Administrator on the forum. We started off with about 12 people. By our second year we had 330 members, and thought we were doing well. Now, there are over 2000 active members every month. A brilliant success for HU and PMRGCAuk, and a really important source of information and support. I never had a face to face support group, and I know how much this means to people, to find friendship and understanding here.
In recent months, following the deaths in quick succession of both my parents, I have had to step back. Now I realise, I've said just about everything that I have to say, and there are more energetic and able people than I to pick up the baton. I've now been recovered (touch wood) for longer than I had PMR, and I'm beginning to forget what it's really like to be brought down by this awful illness. So I have told the trustees that, although I will continue to support the charity that is so close to my heart, and will keep in touch with the forum, I am not going to continue as an Admin.
Many many thanks to all who have helped me personally, challenged me and taught me. Please be kind to one another, take care of yourselves, and enjoy the fellowship on this forum.
With love
Kate x
Written by
Polywotsit
PMRGCAuk team member
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Thank you Kate for all you have done in the past - from being one of the group who met on patient.info and got things underway for a charity at all to having been around here until now.
I'm just trying to get my head around the thought of losing parents at our ages. I was 17 when dad died and my mother died 17 years ago.
Kate, as one of those who has no face to face support group I cannot begin to tell you how much this forum has meant to me over the past few years. Thank you for your part in helping this happen! 🌷
So sorry to hear about your parents, and yes you certainly need time to come to terms with the loss of both so close together, and maybe have a little more time for yourself. You deserve that, having put so much of your time and energy into this forum, and the charity in general.
From a personal point of view, you helped me greatly in the early days when everything was so frightening and my mind in turmoil.
Thank you, and enjoy your extra time - you deserve it. 💐
You have contributed so much to this forum and also to the establishment of PMRGCAuk and all of those with these two conditions owe a great deal to the things you have contributed - not least the Roadshows. Three years on I still refer back to your book!
Thank you Kate for the information in your book and for starting this forum that has been so beneficial to so many. You and all the people on this site have been a God send to me and have made this part of my life easier to deal with. I hope you find the peace you need now after losing your parents and know there are so many people grateful to you and all your contributions. Take care and again, Thank You. Kitty
Thank you for creating this space for us to question, inform, commiserate, discuss, collaborate and most of all - support one another in our PMR/GCA journey. It's meant a great deal to all of us, and your wisdom and kindness shine through every page on this forum.
My deepest sympathies on the recent loss of your parents. I can only advise you to keep telling the old stories and the old inside jokes, and keep re-enacting their most cherished traditions. They live on through our memories, and those we pass around among our families and friends.
I do hope you'll come visit us once in a while, if only to say "Hi" and let us now what's new with you.
As a new member who doesn't know all that which you did,a big thank you for the fruits of the labour. The forum is such a great testimony to all founding members and volunteers. It is heartening that so many choose to be so supportive and helpful to those when needed most
Thank you so much for your help over the last four years Kate. This forum and your book have been invaluable to me-like many of us, I hadn’t heard of Polymyalgia rheumatica before diagnosis and it was a steep learning curve. I would have felt very alone without Healthunlocked.
Every good wish for health and happiness in the future.
Thank you! Irene x
Good'n you are Kate. Thanks for all you have done with PMRGCA. ATB
I’m grateful for your contributions before my time on this site, but nonetheless benefit from all those dedicated folks like you who establish a place for us to connect.
Time for you now, to continue healing, not from an auto immune disease, but rather the loss of your parents. Take good care.
I hope that whatever you do in the future is successful
It was a pleasure to meet you at the road show in Southampton last year .
Please accept my condolences on your loose .
Good health and happiness to you
I’m truly sorry to hear of your loss.
Your book was my first port of call after diagnosis. I’d never heard of PMR and you helped my understanding of this appalling disease. Thank you. And I wish you well as you pick up and rebuild the threads of your life.
Hello Kate, I just became member yesterday, and very happy to be part of the community.Today I ordered your book and thank you for a lot of work and help you provided. Thank you.
Just to say thankyou...it takes courage, I think, to get involved ,"proper",in something like this ..There are givers and takers and in my almost a year using this site I have definitely been a taker , it has helped me so much to understand this illness ( my doc says I probably know more than she does about PMR but to be honest I don't find much comfort in that) but thank goodness for you and the others who we can rely on for information and support... so again Thankyou and don't forget to be kind to yourself at a sad time in your life...Di
I'm a relative newbie here but just wanted to say how thankful I am that someone pointed me in the direction of your book and this forum when I was diagnosed last summer. I no longer feel like a rudderless ship, completely alone and out of control; instead I feel supported, better informed and more positive about my future.
Your book was my introduction to PMR. It directed me to this forum which has been a life saver in so many ways. Thankyou for your contribution to both. Enjoy your 'retirement'
I am quite new and this forum has been my lifeline, I think of it as my PMR family, thank you for all you have done, you have helped so many, I too have your book. Wishing you all the best for the future 😘
Hi Kate
Sorry to read about the loss of your parents in such quick succession, it must have been a lot to deal with for you.
Thank You for all your help & we have our Interview to look back on, that seems such a long while ago now.
Dear Kate, Thank you for your long service and the lasting gift of your book. These will redound to relative newcomers such as myself. Also, sincerest condolences and very best wishes. JoAnne
This forum has had a profoundly positive effect on my experience of this debilitating illness. You should be very proud of yourself for planting the first acorn.
Sending you love and comfort following the death of your parents.🌸
Thank you Kate for all the help you have given us ,it Is much appreciated .l am very sorry to hear that you have recently lost your parents .This forum has helped me so much and helped me understand PMR/GCA ,l would have felt very confused without it.All the best Kate and take care xx.
November 2007 when five of us who had met on patient.info got together for a weekend and decided to do something.
When you posted, 'is anyone out there who wants to do something' and 4 responded and we met face to face for a weekend in November 2007. A e:mail account called 'pmrgcafighters5' set up and bingo............
The five of us never dreamt that we would do what we have done - meeting in London on the 14th March 2008 with 20 others and deciding to set up a charity. I don't think Bhaskar knew what had hit him.
On 13 and 14th March 2008 you, Wendy, Pam, and Jayne pushed me around London in my wheelchair and all of you with very active PMR. Jayne followed a different path after 3 years. This year 2019, Kate, Pam and Mavis have all retired.. Wendy is still going strong.
Jinasc was and is the oldest and now into her 81st year, the one with GCA.
May your PMR stay in remission forever and there is always an open door.
Thank you Kate for all you have done. Your book was my main source of information when I was first diagnosed with PMR just over a year ago. It has given me so much support and knowledge along with all the amazing advice and support I have received from this forum. You have made a great contribution to the health and wellbeing of so many PMR/GCA sufferers as well as education of healthcare professionals, carers, partners and families.
Condolences on the loss of your parents and I can fully understand and commend your decision to take time out to look after yourself at this time.
Kind thoughts, hugs and best wishes to you and your nearest & dearest.
Thank you so much Kate for your excellent work & support to all who have sought it over the past years. So sorry to hear about your losses. I hope that your health remains good and all best wishes for the future.
Hello Kate. I am very sorry to hear of your loss and will always be grateful for the help you gave me 9 years ago when so little was known about GCA and PMR and I lost my sight in left eye. Good luck for the future in whatever you plan to do.
Thanking you from the United States for being part of this group and for your helpful book. Blessings on your home life and sympathy on the loss of your parents. I don't know how I could have managed these last 3 years without this group. May life hold new adventures for you ❤️
Firstly, I am so very sorry to hear about your parents.... I've been there and know how difficult that is. I am happy to hear that you no longer suffer from the symptoms of PMR, and may you be free from it FOREVER!!! And finally thank you, "THANK YOU," for all all you have done... and I'm sure I don't know the half of it! Your book helped me when I needed it most and I know that being an Administrator for such a large forum must be challenging at best! I wish you the very best of luck in your future endeavours and will keep an eye out for your future successes! All the best, Melissa
Thank you so much Kate for all you have done, sharing your knowledge and experience to make things easier for us. Wishing you all the best for the future.
Take care of yourself and thanks for all the hard work you have done ,This forum is a god send . Pop in now and again and let us know how you are .Sorry for the loss of your parents ,thats a hard one and in quick succession even harder . Good luck in the future .
Thank you Kate. This forum has been a port in a storm for me. Your book is something I return to again and again.
So sad to hear of your bereavements . Take care and please pop in now and again. It's so good to know that you have been free of PMR longer than you had it. THANKYOU 💐💐🌻🌻🌹🌹🌷🌷👍👍😃😃
Thank you, Kate, for your dedication and care, your wish to help others by sharing your experience and the very hard work it took to bring this wonderful forum to life. I have gained so much insight into the vagaries of this invisible, confusing condition through the coming together of fellow sufferers - what a gift you've given us.
How utterly sad you must feel at the loss of your parents, I hope you will at least begin to find some peace when you have more time to take care of yourself. We will miss you.
Sorry to hear about you recent loss, you certainly deserve a break and perhaps a new perspective. My thanks to you for writing your book, which I bought and read 6 months after being diagnosed. It helped me to understand and has been a great reference guide.
I'm sure you wont be far away and it's time you handed the admin on. All the best and for a new start to bring fresh light into your world.
Sorry to hear your world has been rocked by the loss of your parents, I still find myself chatting to mum in my dreams and it's really comforting feeling she's still around somewhere. As for your permanent shore leave from the Good Ship PMR, may it truly be permanent and may the memories of the bad times fade completely. Thanks for being an inspiration to me and many others, you have made a profound difference in our lives. Lots of love Angie from NZ. Haere ra, Kia ora (goodbye and keep well/be happy) Ngā manaakitanga (with best wishes)
Thank you for all you have done and thank you for your book. This was my lifesaver. So sorry for the loss of your parents. Take some time for yourself.
Many thanks,Kate ,for your wonderful contribution and of course the continued support through your book which I still pick up and consult from time to time. My PMR journey is almost 4 years long now and this forum has been invaluable. So sorry to hear about your parents. All the best for the future xx
Thank you Kate for the guidance and wisdom you have shared so generously for those of us who struggle to navigate our way forward with this challenging disorder. Obtaining your book in the early days of my diagnosis was so incredibly informative and helpful when I was feeling totally lost and overwhelmed. What a legacy you have left. Wishing you well at this sad time and also with the next chapters of your life.
I am so grateful for your wonderful book - I have GCA and I think I learnt more from you than any of the medics.
I lost my mum two months ago at the wonderful age of 104, still living at home on her own and with the brain of a 20 year old! But whatever the age it doesn't make it any easier, so many sympathies and I join all the other members of our so supportive forum on in wishing you well.
My GP started me on 40 mg Pred a day. Brilliant ! All symptoms disappeared ! After 4 days, he dropped my dose to 30 mg. Two days later he reduced it further to 20 mg... Oops ! Waaay too fast ! Big flare...
Thankfully your book - which I ordered from Amazon the day I was diagnosed with PMR - arrived at this point. I quoted bits of it to my GP who said, well, you seem to know more about PMR than I do: go ahead and manage your PMR yourself !
Which I did following the advice in your excellent book. So, many thanks for all your help and inspiration to us !
It was your book that lead me to thus forum, both of which taught me about what was happening to my body and how to advocate for my health. Know that you have impacted many people in very positive ways. Something your belated parents could be very proud of. As a certain uncle on this forum might say...”job’s a good’un”. Forever grateful from Janet in Maine USA!
I'm so sorry that you've lost both your parents so closely together - it must be a very difficult time for you . Thank you from the bottom of my heart for the invaluable help you have given us in understanding this wretched disease and the tools with which to manage it . I wouldn't have had the confidence to stand up to my rheumatologist and his tapering methods without your book and the caring, informative advice of the aunties on this amazing forum . It's been an absolute god send . Have a happy PMR free life !
What can I add except my greatful thanks. Take care. X
A huge "Thank you" to you Kate for all you have given to support all of us. Your book especially has been so useful as teaching our families as well as helping us in dealing with this difficult illness. Enjoy your time in future with our blessings. Gillian
I’ll never forget the day my GP told me I had GCA. I was very fortunate to find this site almost immediately and for a long time I read every post...just learning from others and the advice given. I also read your book which was a huge source of information and comfort. Thank you!
Thank you Kate ..and All best wishes for your time to help with your Grief. Thank you for your support on the Forum and for your Wonderful Book that l take everywhere with me and have it on my Kindle.Best wishes trish 29 xx
I am so sorry for the loss of your parents. Thank you for everything you have done to make a difference to so many people suffering from this difficult illness through this site and your book. I cannot think how I could have manage without it and continue to refer to it. Enjoy your you time now richly deserved. Val x
My natural inclination when faced with a new situation is to read up about it. So when I found I had PMR I bought your book. It was such a great help, very down to earth and full of information. Medical appointments are too short, PMR appears out of the blue and there is no general awareness of the situation that could inform us. Society is in the dark about PMR.
Thank you for writing your book. I hope if it is updated, that you will be consulted
Kate, I empathise with you, having lost both my parents within 3 months of each other. I found the forum through your excellent book. May you have much 'me time' and best wishes for the future. Be blessed, Kate. xx
Condolences for your loss Kate. A very very big thank you for your book which helped me and others so much, I will continue to recommend it. Best wishes for the future. xxx
Thank you seems so little for all your wisdom,kind words and support to all of us.You are a truly amazing lady,now it is your time to have to yourself,and to grieve the loss of your Beloved Parents.Look after you,and hope you drop by now and then.Will miss you.xxx🌻
So sorry about your parents. I remember our first conversation when I joined the group back in 2014. I had just gotten over PMR and developed GCA. This was the only place to turn to get proper information. It has help me through the years We in the US need this forum greatly. Thank you for your efforts on our behalf and your books. Wish you well in your future endeavors. Marilyn. Florida USA
First let me say how sorry I was to hear of the passing of both your parents, Losing mine was the most heartbreaking time of my life and I miss them dreadfully.
Thanks a million Kate for all your good work. Your books were a tremendous help to me as I had never heard of PMR when it struck me down. I thought it was the end of my world as I knew it but after reading your books I knew without doubt there was life after PMR and that patience was a virtue. Pmr stayed with me for 5 years, a long time but I managed it somehow, with much help from this forum I must add.
All the best Kate in whatever your future holds, you will not be forgotten.
Sad that someone I regarded as a friend won't be available anymore.
I don't make many friends something in the "other" condition mucks up my relationships hence I've only ever had one girlfriend a lovely lady who became my wife for forty-four years, so those rare lady's who consent to talk to me are a really rare breed. I know that I sound pathetic but K.S. is a really foul condition and once you've got it your stuck with it.
So Kate I'm going to miss you and thank you for your lovely photographs.
Thank you for all you have done in setting up this charity - so many of us are indebted to you. Loosing parents is not easy and there is a lot to do. You need some "me time"
Thank you Kate for all your help an input when I needed it most. You have been an enormous help to me and my understanding of PMR and GCA. Thank you and good luck.
I am sorry to hear of your loss, my prayers go with you.
Kate I take my hat off to you for the great task of monitoring this terrific forum...it will not be the same without you. Thank you for all you have done here.
It's been a very difficult time for you Dear, and I can only imagine how awful it must have been for you losing both your parents in succession..
May you still be comforted by the outpouring of love surrounding you. You can see by the posts which keep appearing here , after you announced that you are retiring as administrator..😢 you have many admirers and grateful people here.
You will be sadly missed, but I completely understand that it is time for you to move on..
You know that news that startles you and your system responds with a fast breath intake? That was my reaction when I read your post. However, I’m pushing down the ‘oh, no’ and with much gratitude for your book, your hand in establishing this forum, your participation in establishing best practices in treatment through research, and for your guidance in navigating these diseases a huge THANK YOU! May you continue to live GCA /PMR free.
I’m just now reading your post and want you to know you were the first person to understand and address my concerns when I was diagnosed with PMR/GCA in 2016. Your knowledge and willingness to share it have helped make me and all other followers enlightened in this journey . Thank you!
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Just signed up and fed up with PMR
Prednisone initial dosage and tapering off
”roaring” tinnitus and “echoing” ears, signs of a flare?
