Kathy just participated in a webinar on remission and relapse you might be interested in watching. www.vasculitisfoundation.org/mcm_webinar/vf-webinar-remission-and-relapse/
I was diagnosed with IgA Vasculitis about a month ago although I believe I have had it for 6-8 months. Just learning about this disorder and am grateful to have found you. It does seem that my rash breakouts dissipate when I am relaxed for a period of time but quickly flare up during times of stress or frustration. Wondering if this is common for anyone else.
That is a great question. You might consider asking it in our online support community Vasculitis Voices www.inspire.com/groups/vasculitis-voices/or joining one of our virtual support groups to find out if anyone else has had a similar experience. www.vasculitisfoundation.org/virtual-support-meetings/
I also developed IGA vasculitis fall of 2021 as an adult. I’m 30. I am now having wave upon waves of small rashes on my feet, legs and thighs. I am positive this has something to do covid or the vaccine. I am beyond pissed off to be stuck with this disorder and we having nothing to show for a cure. My father is ill with end stage kidney failure and to think I could be like him is so devastating.
I am so sorry to hear that your IGA vasculitis is not responding to treatment. Protecting your kidney health is so important as you stated. There is information in this webinar by Dr. Brandt on vasculitis and kidney health that you may find useful. www.vasculitisfoundation.org/mcm_webinar/kidneys-and-vasculitis/ Here is a recent research study that discusses IGA vasculitis including possible links to COVID-19 as well as treatment options. www.ncbi.nlm.nih.gov/pmc/articles/PMC8307949/
The current data available for vasculitus is not so complete globally as we always say and believe that giant cell arteritis is the most common one. The data should be recollected and properly summarized
That is a very valid point. Thank you for reminding us to think more globally. We do sometimes make the mistake of focusing more on the data from North America, or more specifically, from areas where we can more readily gather data.
I had this as a 13 year old. I can tell you the rash hurt. It hurt like hell. I was so sick. I lost so much weight. I missed 3 months of school. I was in 6th grade. I remember every moment of this nasty illness.
How were you able to put it in remission?! I’ve had it for 7 months now with still no remission. I started on steroids for 2 months and then they took me off them and I’ve yet to go into remission and the reason I’m not in the hospital is compression socks.
I have been diagnosed with IgA in september 2022 after 2,5 years of going from docter to docter. Im on dapson at the moment. It worked the first few months, but now it doesn't do anything anymore. So the docter is thinking about some other meds I can try. Hoping to hear more this thursday
We are glad you finally received a diagnosis. It can definitely be a long journey to diagnosis with vasculitis. The Vasculitis Foundation www.vasculitisfoundation.org offers additional resources you might find helpful such as online support groups www.vasculitisfoundation.org/virtual-support-meetings/
I don't know about vitamin supplements but here is some additional information about IgA that might be helpful. www.vasculitisfoundation.org/wp-content/uploads/2024/02/2024-VF_IgA-Vasculitis.pdf
This study discusses some treatment options for IGA vasculitis that has not responded to corticosteroids. www.ncbi.nlm.nih.gov/pmc/articles/PMC8307949/
Kathy, you indicated you've been in full remission for 8 years (so happy for you!). I'd love to know what led you to remission.
Kathy just participated in a webinar on remission and relapse you might be interested in watching. www.vasculitisfoundation.org/mcm_webinar/vf-webinar-remission-and-relapse/
I was diagnosed with IgA Vasculitis about a month ago although I believe I have had it for 6-8 months. Just learning about this disorder and am grateful to have found you. It does seem that my rash breakouts dissipate when I am relaxed for a period of time but quickly flare up during times of stress or frustration. Wondering if this is common for anyone else.
That is a great question. You might consider asking it in our online support community Vasculitis Voices www.inspire.com/groups/vasculitis-voices/or joining one of our virtual support groups to find out if anyone else has had a similar experience. www.vasculitisfoundation.org/virtual-support-meetings/
بالتوفيق والنجاح دوما اشطر دكتورو
بالتوفيق والنجاح الدائم اشطر دكتورة
I also developed IGA vasculitis fall of 2021 as an adult. I’m 30. I am now having wave upon waves of small rashes on my feet, legs and thighs. I am positive this has something to do covid or the vaccine. I am beyond pissed off to be stuck with this disorder and we having nothing to show for a cure. My father is ill with end stage kidney failure and to think I could be like him is so devastating.
I am so sorry to hear that your IGA vasculitis is not responding to treatment. Protecting your kidney health is so important as you stated. There is information in this webinar by Dr. Brandt on vasculitis and kidney health that you may find useful. www.vasculitisfoundation.org/mcm_webinar/kidneys-and-vasculitis/
Here is a recent research study that discusses IGA vasculitis including possible links to COVID-19 as well as treatment options.
www.ncbi.nlm.nih.gov/pmc/articles/PMC8307949/
The current data available for vasculitus is not so complete globally as we always say and believe that giant cell arteritis is the most common one. The data should be recollected and properly summarized
That is a very valid point. Thank you for reminding us to think more globally. We do sometimes make the mistake of focusing more on the data from North America, or more specifically, from areas where we can more readily gather data.
I had this as a 13 year old. I can tell you the rash hurt. It hurt like hell. I was so sick. I lost so much weight. I missed 3 months of school. I was in 6th grade. I remember every moment of this nasty illness.
We are so sorry to hear this, but so glad you are well now.
How were you able to put it in remission?! I’ve had it for 7 months now with still no remission. I started on steroids for 2 months and then they took me off them and I’ve yet to go into remission and the reason I’m not in the hospital is compression socks.
I have been diagnosed with IgA in september 2022 after 2,5 years of going from docter to docter. Im on dapson at the moment. It worked the first few months, but now it doesn't do anything anymore. So the docter is thinking about some other meds I can try. Hoping to hear more this thursday
We are glad you finally received a diagnosis. It can definitely be a long journey to diagnosis with vasculitis. The Vasculitis Foundation www.vasculitisfoundation.org offers additional resources you might find helpful such as online support groups www.vasculitisfoundation.org/virtual-support-meetings/
Could anyone recommend a vitamin or supplement that could help my beautiful 7 year old daughter who suffers with this
I don't know about vitamin supplements but here is some additional information about IgA that might be helpful. www.vasculitisfoundation.org/wp-content/uploads/2024/02/2024-VF_IgA-Vasculitis.pdf
@@vasculitisfoundation wonderful thank you, this chanel is great, God bless you
I got this disease when i was 15 now im 21 still haven’t been in remission.
Treatment?
@@joannboyd8855 right now im on prednisolone and have tried many drugs. Nothing works for me. It has wrecked my world.
This study discusses some treatment options for IGA vasculitis that has not responded to corticosteroids. www.ncbi.nlm.nih.gov/pmc/articles/PMC8307949/