Thank you for this. This video has a lot of gold nuggets of information on updates of treatment of GPA and other vasculitic diseases. I am in the medical field and got recently diagnosed with EGPA a few months ago, and currently on steroids and immunosuppresants. I stumbled upon your video looking for more information on EGPA. This is helpful, with regards to awareness, especially to medical practitioners who are in third world countries who cannot have immediate access to advance medicine.
Thank you for your kind words. We are so glad you found this helpful. Here are additional resources specific to EGPA which you may also find useful. VF UA-cam playlist for EGPA ua-cam.com/play/PLr6Bwau6uSmtQoeOH1Ed4xCmwv3UtnYg_.html Website Resources www.vasculitisfoundation.org/education/forms/eosinophilic-granulomatosis-with-polyangiitis-churg-strauss-syndrome/
Thankyou so much for posting this video. I'm a 59 year old from the UK and work as a beer delivery truck driver . I was thankfully 🙏 diagnosed quite quickly as having GPA with initially lung and kidney involvement. After plasma exchange, haemodialysis and Cycloposhamide infusions I was given Prednisolone and Mycophenolate Mofetil ( this caused liver problems and was quickly stopped).After having a Rituximab infusion in April 2022 I came off all medications (apart from an anti biotic blood pressure tablets) and for 2 years no problem. Then last month my bloods caused my nephrologist some concern so I was quickly sent into hospital for another Rituximab infusion. As I have a follow-up and bloods in January 2025 I found this video comforting and informative 👍 thanks again
We are so glad you found this comforting and informative. It sounds like you have a great healthcare team as well. I wanted to share some other resources and information with you that you might find helpful. I hope your follow-up in January brings great news! Playlist of all GPA webinars and videos: ua-cam.com/play/PLr6Bwau6uSmsPq7rjmg_DRszJ1Vci5n8a.html GPA page on our website: www.vasculitisfoundation.org/education/vasculitis-types/granulomatosis-with-polyangiitis/ Learn more about our virtual support groups: www.vasculitisfoundation.org/living-well/find-support/ We offer live webinars every month (which are recorded and added to our UA-cam channel on a variety of topics: events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD?search=&sortBy=date&category=&date=TODAY&keywords= There is also a foundation in the UK for people with vasculitis. You may have already connected with them, but if not, here is the link to their website www.vasculitis.org.uk/
We are so glad you found this helpful. We have additional resources on GPA on our website www.vasculitisfoundation.org You may also find value in our support groups www.vasculitisfoundation.org/living-well/find-support/
I also have this disease, going on 20 years now and I found this to be very informative, over the years I've been treated with most drugs including Rituximab which unfortunately I have allergic reactions. The disease has always been active with ambers attacking my eye now causing Orbital masses in one eye. I've recently started new maintenance of Obinutuzumab which my body seems to handle better and is giving promising results, unfortunately the price in Australia for this drug seems to be a sticking point for the sake of my health. Thanks for the update and the work you have all put in to try and find either new drugs to maintain it and hopefully one day you find a cure.
We are so glad you found this helpful and are so grateful for your kind words. I am glad that obinutuzumab is giving promising results. Unfortunately, as you said, many of these newer treatments are very expensive. I wasn't able to find information on financial assistance for obinutuzumab for Australia, but maybe one of the resources on this page could point you in the right direction www.gazyva.com/first-line-cll/financial-support/assistance-options.html
Glad it was helpful! You can find more information about GPA as well as resources such as virtual support groups, upcoming educational webinars, and more on our website www.vasculitisfoundation.org
I have this disease. It has ruined my life. Going back for another round of rituxumab. I have lots of problems from the high doses of prednisone. Hopefully a cure comes soon.
We, like you, are hoping for a cure. Until then, we hope you can find some comfort in connecting with a community of other people who understand your struggles. We offer online virtual support groups and an online chat community where you can connect with others. www.vasculitisfoundation.org/living-well/find-support/ www.inspire.com/groups/vasculitis-voices/
Researchers are looking into how CAR-T cells may be helpful in the treatment of vasculitis and other autoimmune diseases. In fact, I just heard a fabulous presentation on CAR-T cell research at a conference the Vasculitis Foundation held last weekend. The recording should be up on our UA-cam channel soon. One thing that presentation covered was that while promising, CAR-T cells therapy is not a magic bullet and unfortunately, as with any treatment, there are side effects and unintended consequences. Some people who have received CAR-T cell treatment for certain types of cancer have been found to be at higher risks of other types of cancer after CAR-T cell treatment. There is also increased risk of patients experiencing cytokine storms with CAR-T cell therapy. Here's information on cytokine storms my.clevelandclinic.org/health/diseases/22700-cytokine-release-syndrome As with any treatment, there are pro's and con's to CAR-T cell therapy, but we are all excited about the future of CAR-T cell therapy in the treatment of vasculitis. There are currently no trials that we are aware of for CAR-T cell therapy in the treatment of vasculitis, but you can find out about vasculitis clinical trials here www.vasculitisfoundation.org/treatments-research/participate-in-research/clinical-trials/
Thank you for this. This video has a lot of gold nuggets of information on updates of treatment of GPA and other vasculitic diseases. I am in the medical field and got recently diagnosed with EGPA a few months ago, and currently on steroids and immunosuppresants. I stumbled upon your video looking for more information on EGPA. This is helpful, with regards to awareness, especially to medical practitioners who are in third world countries who cannot have immediate access to advance medicine.
Thank you for your kind words. We are so glad you found this helpful. Here are additional resources specific to EGPA which you may also find useful.
VF UA-cam playlist for EGPA ua-cam.com/play/PLr6Bwau6uSmtQoeOH1Ed4xCmwv3UtnYg_.html
Website Resources www.vasculitisfoundation.org/education/forms/eosinophilic-granulomatosis-with-polyangiitis-churg-strauss-syndrome/
@@vasculitisfoundation thank you very much ❤️
Thankyou so much for posting this video. I'm a 59 year old from the UK and work as a beer delivery truck driver . I was thankfully 🙏 diagnosed quite quickly as having GPA with initially lung and kidney involvement. After plasma exchange, haemodialysis and Cycloposhamide infusions I was given Prednisolone and Mycophenolate Mofetil ( this caused liver problems and was quickly stopped).After having a Rituximab infusion in April 2022 I came off all medications (apart from an anti biotic blood pressure tablets) and for 2 years no problem. Then last month my bloods caused my nephrologist some concern so I was quickly sent into hospital for another Rituximab infusion. As I have a follow-up and bloods in January 2025 I found this video comforting and informative 👍 thanks again
We are so glad you found this comforting and informative. It sounds like you have a great healthcare team as well. I wanted to share some other resources and information with you that you might find helpful. I hope your follow-up in January brings great news!
Playlist of all GPA webinars and videos: ua-cam.com/play/PLr6Bwau6uSmsPq7rjmg_DRszJ1Vci5n8a.html
GPA page on our website: www.vasculitisfoundation.org/education/vasculitis-types/granulomatosis-with-polyangiitis/
Learn more about our virtual support groups: www.vasculitisfoundation.org/living-well/find-support/
We offer live webinars every month (which are recorded and added to our UA-cam channel on a variety of topics: events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD?search=&sortBy=date&category=&date=TODAY&keywords=
There is also a foundation in the UK for people with vasculitis. You may have already connected with them, but if not, here is the link to their website www.vasculitis.org.uk/
Very informative. Thank you for this.
We are so glad you found this helpful. We have additional resources on GPA on our website www.vasculitisfoundation.org
You may also find value in our support groups www.vasculitisfoundation.org/living-well/find-support/
I also have this disease, going on 20 years now and I found this to be very informative, over the years I've been treated with most drugs including Rituximab which unfortunately I have allergic reactions. The disease has always been active with ambers attacking my eye now causing Orbital masses in one eye. I've recently started new maintenance of Obinutuzumab which my body seems to handle better and is giving promising results, unfortunately the price in Australia for this drug seems to be a sticking point for the sake of my health.
Thanks for the update and the work you have all put in to try and find either new drugs to maintain it and hopefully one day you find a cure.
We are so glad you found this helpful and are so grateful for your kind words. I am glad that obinutuzumab is giving promising results. Unfortunately, as you said, many of these newer treatments are very expensive. I wasn't able to find information on financial assistance for obinutuzumab for Australia, but maybe one of the resources on this page could point you in the right direction www.gazyva.com/first-line-cll/financial-support/assistance-options.html
Very informative - thank you so much!
Glad it was helpful! You can find more information about GPA as well as resources such as virtual support groups, upcoming educational webinars, and more on our website www.vasculitisfoundation.org
I have this disease. It has ruined my life. Going back for another round of rituxumab. I have lots of problems from the high doses of prednisone. Hopefully a cure comes soon.
We, like you, are hoping for a cure. Until then, we hope you can find some comfort in connecting with a community of other people who understand your struggles. We offer online virtual support groups and an online chat community where you can connect with others.
www.vasculitisfoundation.org/living-well/find-support/
www.inspire.com/groups/vasculitis-voices/
Hi. Same here. Can't lift anything heavy. After Ritotxi saved me, I go on but man some days I'm on fire inside. Keep pushing on.
Please make CAR T cells for vasculitis happen! Let me know where I can sign up!
Researchers are looking into how CAR-T cells may be helpful in the treatment of vasculitis and other autoimmune diseases. In fact, I just heard a fabulous presentation on CAR-T cell research at a conference the Vasculitis Foundation held last weekend. The recording should be up on our UA-cam channel soon. One thing that presentation covered was that while promising, CAR-T cells therapy is not a magic bullet and unfortunately, as with any treatment, there are side effects and unintended consequences. Some people who have received CAR-T cell treatment for certain types of cancer have been found to be at higher risks of other types of cancer after CAR-T cell treatment. There is also increased risk of patients experiencing cytokine storms with CAR-T cell therapy. Here's information on cytokine storms my.clevelandclinic.org/health/diseases/22700-cytokine-release-syndrome
As with any treatment, there are pro's and con's to CAR-T cell therapy, but we are all excited about the future of CAR-T cell therapy in the treatment of vasculitis. There are currently no trials that we are aware of for CAR-T cell therapy in the treatment of vasculitis, but you can find out about vasculitis clinical trials here www.vasculitisfoundation.org/treatments-research/participate-in-research/clinical-trials/
@@vasculitisfoundation Thanks for the info!
Here's the presentation that included a discussion of CAR-T Cell therapy starting at about minute 15 ua-cam.com/video/NjAzb6lcVW4/v-deo.html
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