I hope many of you were able to listen to him. This was my introduction to a man who was just a treasure trove of information regarding PMR and GCA. What an incredible service he has rendered to all of you in the UK along with this charity and forum. He spoke in such a comprehensive way medically and yet was so sensitive to our little daily needs and the mental impact of dealing with these diseases.
The UK is light years ahead of the states in dealing with these challenges...as well as rapid and accurate diagnosis.
My thanks to PMRGCAuk for the opportunity this morning. It may not be able to accomplish much but I am determined to do whatever I can to bring this to the attention of whatever organizations may be helpful in the US~!
At present, I am involved in a program through autoimmuneregistry.org in which they are collecting Diagnostic Journeys to be published in medical journals in hopes of increasing early diagnosis by GPs. Professor Dasgupta was absolutely inspiring as to what can be....and fortunately for you folks....is~!
xo, Marilyn
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Grammy80
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Yes what a lovely Doctor and human being! It was fascinating to know all the work being done on GCA. One of the key things I noted was that he keeps all his PMR patients on a low dose of steroids eg 2-3 rather than getting them off Pred completely. Also interesting questions on how steroids being used to treat Covid.
That was important to me too....because I'm having trouble tapering and want to preserve the sight I have (which will serve me well). Personally, I'm fine with staying on a low dose. In my situation, if I am not able to care for myself it means a nursing home. I'm so accustomed to my surroundings and I have an extra room where I can paint....I have two hours help a week cleaning...can afford transportation when necessary...so I am really so, so fortunate.
But, I've just got to keep that right eye!! Dr. Dasgupta was just amazing...
Now, if someone could just get rid of winter...I would have perfection. xo
Absolutely! Are you in the UK? Just think of all the information you are armed with. I'm so anxious to share the webinar with my rheumy in the states and ask him where he thinks I can start writing to hopefully see the US start to catch up to some degree.
👬👩🏽🤝🧑🏿👩🏽🤝🧑🏾👩🏽🤝🧑🏿👩🏽🤝👩🏼👨🏽🤝👨🏽👨🏿🤝👨🏽👨🏽🤝👨🏼👩🏿🤝🧑🏽👩🏿🤝👩🏿🤝👨🏻🤝👩🏿🤝👩🏽🤝👨🏻🤝👨🏼🤝👨🏿🤝👨🏼🤝👩🏾🤝👨🏼🤝👨🏼🤝👨🏻 Thankful for the forum. xo💖
Don't get your hopes up - there are a lot of rheumies in the UK who are as bad as yours. And while he was going on about us sharing responsibility for our care and management, many GPs and rheumies are scared of the expert patient. There is a scheme here to train patients as expert patients for their own illness, the idea being to keep them out of hospital, but their meds are taken away from them in hospital and healthcare professionals ignore them. I've discussed it with Prof Mackie too - but there are downsides.
I know in the state many of those decisions are guided by a simple question...."Can I get sued." Not sure if liability and lawsuits are as prevalent in the UK. I always hated my meds being taken away in the hospital...but that is a given....because I'd been taking them for years on a given schedule...not governed by the nurse's shifts. I don't see that ever changing.
From all the posts you definitely have more control over steroid tablet dosage than in the US. Here the GP will not write scripts for steroids when you are seeing a rheumatologist. They insist it is up to the rheumy to regulate the steroids but now he only sees me every three to four months. I saw him frequently, sometimes twice a week in the beginning, until the tocilizumab and prednisolone quieted things down. Without the forum I'd be on autopilot, I guess. I talked with him on the phone in March and have just emailed back and forth since~~the forum has been my guide.
The doctor seems much more inclined to listen to symptoms, thankfully. xo
I've been thinking more about how different it is in each of our countries. I'm thinking that each of our countries is motivated by the different health systems we have. Do you think because you have a National Health System that your country puts more money into research and educating the GPs? 🤔🤔
Probably not! Every doctor working in the NHS has to do CPD, Continuing Professional Development, but it is very generalised and they choose what they look at. So they choose the field they are interested in - unlikely to be PMR/GCA one feels ...
Canada has a national health care system and although I haven't looked closely at the money it contributes to research and educating GP's, I suspect it's sorely limited.
Certainly there's virtually nothing being done relative to PMR/GCA. If I'm not mistaken a lot of what has been accomplished in this regard in the UK is thanks to the charity PMG/GCAuk that we are all so grateful for.
I'm thinking that you are right!! My family in Canada looked into my moving up there and have sponsored me...but when the GCA hit they really didn't feel I would get the same care that was available to me in the states. 🤔 ??
I think you might be surprised! There IS a lot going on worldwide but it is all so slow - looking at a new approach to management can take 2 or 3 years to set up, another couple of years to recruit enough patients and then the duration of the management being looked at. Above all, a primary need is for specialists to recruit patients who have not already been started on steroids. The research for Covid-19 is relatively easy - there are a LOT of patients out there and almost all can be recruited into one arm or another of a trial. When China had fewer patients they switched to Europe and now the UK has had particularly large numbers in a system that has worked well for research. The US could have been even better but ...
I agree.. I have to jump through hoops every month for my pred. Imagine the discussion I had to have after requesting a 1mg tablet to allow for smaller taper.
It's a great idea and one we need to work towards but there's a lot of work to do.
What you said reminded me of the nine days I was in hospital before my GCA diagnosis. During that time I also caught the norovirus. I had an agreement that I would be given paracetamol when I could not last any longer without it. Me being me I did not want to have any more than was absolutely essential. That worked well 'til one Sister would not play ball and made me wait. I was beside myself when I finally got it. I was on the point of getting a cab and going home. Needless to say I kept my own supply after that.
Happened to me in Italy many years ago - post orthopaedic op (ski accident) pain control was less than ideal because the charge nurse took the same attitude "you have to put up with some pain". Until the ward round - when the surgeon enquired. I split on him - and the surgeon gave him what for. When he arrived he tried to get out of it but I explained in very simple language: when I say I am ill/in pain etc I have already done my waiting. Don't send me away to do another shift ...
🤣😁😄 I'm not really laughing at you....I'm laughing because the first time I met with a group in England (I'm in Maine) I searched the time on the computer and got two different times!! Finally, I checked with a friend whose husband had been career military and got it right. Then I did get a notice siting GMT and the BST....it has broadened my horizons ...many things make me realize what a narrow sheltered world I live in...I need to stretch out.
For me, 2 PM London time is 9 AM..I have family in Nova Scotia, for them, it would be 10 AM. Not sure where you live but you will make it next time!!
Good to hear from you....you will really enjoy the recording of the Webinar!!
I am going to send it to mine and then it is his choice as to whether he watches it all...since being on the forum he has agreed to the UK way of tapering...not 2 mgs at a whack!! So, he may view it....can't hurt. My rheumy's ego can take it, some can't. xo
I decided to send my rheumy a copy of the letter to the GP - then he can decide whether I am simply keeping him informed / 'in the loop' or whether I am saying WATCH THE PRESENTATION!
I've been having such a hard time tapering from 8 mg.....that statement was absolute relief~! If it is OK with Professor Dasgupta....it is good enough for me~! xo
Someone further up the post said “It will be available on the PMRGCAuk Website for anyone who would like to listen to it” Then someone Else said it’s there now ... 👍
I’m one of the lucky ones then Grammy, he, and my vigilant GP at the time, saved my sight. I feel privileged to have been his patient for just under 7 years until we moved out of area recently.
I can’t go into it all here but after 18months with GCAPMR he suspected something wasn’t quite right with me and unrelated to my current AI. He was right and I was diagnosed with MS. To this day I still think how did he know that..
What you saw is how he is all the time. He used to come regularly to our group meetings and you never tire of listening to him.
Don’t get me wrong, in clinic, we did have ‘discussions’ along the way but he is a very wise man and his passion for the illness is second to none - going back to his early years in medicine he chose the PMRGCA path from the beginning. I have known him cancel flights to meetings to see a patient who needed urgent treatment.
...he told me a while ago I would probably never get completely off pred but was ‘happy’ if I could get to 3/2. From the GCA aspect that reassures me as I have similar symptoms in my other illness that mimic the GCA.
When my neighbour lost his sight, apparently due to untreated PMR, Professor just said ‘an opportunity missed’ - if he’d seen him earlier it could have been a totally different outcome.
I now have another good consultant, Sarah Mackie, with whom I’ve only had one telephone consultation and she seems to have a very calming nature too. She knows Prof D well, I understand.
My Rheumatologist, Dr Sarah Mackie is pretty special too. Lucky you! Two stars, in the field.
I was particularly interested in the two types of GCA. The way my GCA presented was not typically what I was expecting. I have had daily headaches since I was diagnosed with PMR in February 2016. I struggled to taper after 7 mgs. I am wondering if I had Cranial GCA all along. It would explain a number of things.
I imagine just being in Prof. Dasgupta’s company is a healing experience.
As the years roll by and I learn more and more I definitely feel lucky.
First time round I just happened to be in the right place for treatment. Secondly I requested to see SM. I’d been doing my research once I knew we were moving. Waited 6 months, because of Covid, and received a phone call recently giving me an appointment date. Just thought to check who I would be seeing and it wasn’t SM! I refused to be seen by anyone else saying it is on record my request as to who I wished to see. She checked my details, agreed and promptly changed it, after going to speak to someone else. Said she was new. You really do have to look out for yourself.
My son is currently scanning over six years worth of Rheumie Southend correspondence for SM. You’d think in this day of technology they would already be there on the system but no.
Your GCA symptoms are certainly different to anything I’ve heard of but I’m no medic. That was an eye opener. I don’t understand it fully but sounds like you’re in safe hands.
Silly question but can ‘your’ GCA affect the eyesight - it being in the armpit? Now that’s something I would be asking ‘Him’.
I have so many questions for Sarah. I am not sure about the eyesight and whether GCA and PMR have blurry boundaries. The last appointment I had, we were going to look at the fact that Large Cell Vasculitis showed up during my Ultrasound Scan. They scan your armpits as well as your temple arteries. This does not necessarily mean that the LVV is confined to that area. It could mean upper extremities for instance, or your Aorta. It is all they looked at. Nothing has really been explained. Diagnostic tests have been unavailable ( PET, US, Biopsy) I was diagnosed with GCA on the basis of significantly raised ESR and CRP, plus and new headache and systemic symptoms. No jaw claudication, sore tongue, visual symptoms. I currently have symptoms that could all be Pred side effects given that my cumulative dose is over 4 years and then 40 mgs for GCA. My diagnosis is an educated assumption on Dr Mackie’s part. You feel so much better after Pred treatment for PMR. I feel so much worse.
Does your son work for her. Or is this a favour? 🙂
Oh sorry, he’s scanning your notes duh!
How are you? I think I complain more that anyone else on here.
it is good to hear that someone else on the forum was diagnosed with GCA without jaw pain. I have only had severe temple headaches and some eye pain. My rheumatologist is now suspecting trigeminal neuralgia and has put me on 100 mg of pregabalin to see if this works and also to help pain in tapering. However as I taper from 22.5 to 20 mg I still have some rebound of the temple headaches. Going to try tapering in 1 mg rather than 2.5 mg steps and see how that goes.
I think we all have a spectrum of symptoms and autoimmune diseases are hard to put into boxes. You aren't complaining just saying how things are for you.
Let me know how it all goes. Thanks for your support. It was an odd time to be cast adrift. I feel quite needy. My Rheumatologist phoned ( Maybe she tunes in). Having a proper talk next week.
I know Jane, being in the audience felt like a lovely walk through a garden....I cannot imagine being in his presence. While being knowledgeable he was so sensitive and calming...and appreciative of nature. xox
Good for you, you have had the best from what I have seen! May you continue to be in good hands always. It has been a while since I have seen someone so 'comfortable in his own skin' as Professor Dasgupta. It was enlightening and an experience. His special gift to me was saying that he does not always try to get his patients to zero steroids!
I saw the professor at a pmr AGM meeting 2 years ago and was struck by his knowledge and empathy. I asked if I could be put under Southend hospital care but my gp said no.
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