I had very similar experiences with it starting with joint pain that just progressed. My first doctor visit, they thought I had carpal tunnel… second doctor was much more proactive and got me referred to a rheumatologist, and with a lot of daily pain, fatigue, lung biopsy, over 2 years was finally diagnosed. My rheumatologist had me complete 2 Rotuxin IV infusions and tapered off prednisone, and I have been in remission since 2016.
Fui diagnosticado con PAN desde los 6 años de edad, actualmente tengo 24 años y he pasado por 2 reactivaciones desde mi diagnóstico, una a los 12 y otra a los 22. Cada reactivación me dejo totalmente inmóvil debido a los severos dolores y otras complicaciones, pero una vez la inflamación pasa pude recuperar mi movilidad junto con terapia físicas.
(Respuesta traducida con Google Translate.) Lamentamos oír hablar de tus instintos, pero nos alegra que puedas controlarlos y recuperar la movilidad. Las historias de resiliencia de alguien tan joven son inspiradoras. Tenemos una lista de reproducción de videos de vasculitis en español que puede resultarle útil para compartir más sobre la vasculitis con otras personas. ruclips.net/p/PLr6Bwau6uSmsCUBMWN_2wqq-9hAHzc2Ct También tenemos folletos sobre las diversas formas de vasculitis que están en español. www.vasculitisfoundation.org/download-order-literature/#Spanish
The Vasculitis Foundation would love to share your story with others who are living with vasculitis. If you would be interested in sharing more of your story with us please email me at jwages@vasculitisfoundation.org
thank you for giving all the Information needed to be known, but i have a question i did look up for the reason behind why mostly medium-sized and small muscular arteries get necrotizing inflammatory? can you please recommend any books or references to look up. I’m in need for my report and presentation of this topic.
I really enjoyed watching this video. It is very informative. However, some symptoms do not seem to match mine but my doctors believes I have PAN. I started with swelling of left thumb, followed by left big toe and then my left ankle bone started hurting then the left ankle got swollen. Now my right knee started hurting and right heel started to hurt but no swelling to the right knee or right heel. I am very frustrated since I have gotten X-rays. blood work have only indicated inflammation, echocardiogram, and allergens testing which are negative.
I was diagnosed a few months ago with severe PAN, how long should it take until the pain really improves to the level where I can go, for example, a whole week without painkillers?
We are sorry to hear you are still struggling with pain associated with PAN. Unfortunately, I don't know the answer to your question, but it is often helpful to connect with others who are living with PAN who can share their experience with how long it took for the pain to improve. Our patient support coordinator can connect you with others, or you can connect with people via our online community, or one of our virtual support groups. Here is information about how to connect with those resources: * Ask to be connected with someone living with PAN via our patient support coordinator www.vasculitisfoundation.org/about/contact-2/ * Connect with our online vasculitis community www.inspire.com/groups/vasculitis-voices/ * Join one of our weekly virtual support groups www.vasculitisfoundation.org/virtual-support-meetings/ Here are some other resources you may find helpful: Treatment Guidelines for PAN from American College of Rheumatology and the Vasculitis Foundation: www.vasculitisfoundation.org/2021-acr-vf-pan-guidelines/ Video on treatment guidelines ruclips.net/video/39efFuCl32M/видео.html
Hey i was going through this pain and what really helped me is “VALASTA” and also dr. Joe Dispenza he has a online thing please check it out and i wish you the best
Because PAN can affect so many organ systems, its symptoms may be wide-ranging. At onset, patients may experience fever, night sweats, weight loss, skin sores, and severe muscle and joint pains that develop over a period of weeks or months. You can learn more about other common symptoms of PAN here www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/#1545067276128-23d19338-9ab3
Here is a link to the American College of Rheumatology guidelines for treatment of PAN. www.vasculitisfoundation.org/2021-acr-vf-pan-guidelines/ This should help you and your doctor decide how best to treat PAN if you have an adverse reaction to glucocorticoids. You can find more resources related to PAN as well as information about virtual vasculitis support groups on our website. www.vasculitisfoundation.org www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/ www.vasculitisfoundation.org/virtual-support-meetings/
We are so sorry to hear that. A lot of progress has been made in the diagnosis and treatment of vasculitis, we wish it would have come soon enough to help your dad.
We are so sorry to hear about your husband's diagnosis. However, we do want to reassure you that with treatment and monitoring for flares/relapses most people with vasculitis live long, healthy, and very fulfilling and happy lives. Finding a support community is a huge help. You can follow the Vasculitis Foundation on Instagram, Twitter, or Facebook; join our online support community www.inspire.com/groups/vasculitis-voices/ or join us for one of our virtual Zoom support groups www.vasculitisfoundation.org/virtual-support-meetings/ You and your husband are not alone and the Vasculitis Foundation has a ton of information and support to offer including treatment guidelines www.vasculitisfoundation.org/2021-acr-vf-pan-guidelines/ and other helpful information www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/
I had very similar experiences with it starting with joint pain that just progressed. My first doctor visit, they thought I had carpal tunnel… second doctor was much more proactive and got me referred to a rheumatologist, and with a lot of daily pain, fatigue, lung biopsy, over 2 years was finally diagnosed. My rheumatologist had me complete 2 Rotuxin IV infusions and tapered off prednisone, and I have been in remission since 2016.
We are so glad to hear you were finally able to get an accurate diagnosis and have been able to achieve and remain remission. That is so wonderful!
Wow that’s fantastic I’m on prednisone for almost 4 years already
Fui diagnosticado con PAN desde los 6 años de edad, actualmente tengo 24 años y he pasado por 2 reactivaciones desde mi diagnóstico, una a los 12 y otra a los 22. Cada reactivación me dejo totalmente inmóvil debido a los severos dolores y otras complicaciones, pero una vez la inflamación pasa pude recuperar mi movilidad junto con terapia físicas.
(Respuesta traducida con Google Translate.) Lamentamos oír hablar de tus instintos, pero nos alegra que puedas controlarlos y recuperar la movilidad. Las historias de resiliencia de alguien tan joven son inspiradoras. Tenemos una lista de reproducción de videos de vasculitis en español que puede resultarle útil para compartir más sobre la vasculitis con otras personas.
ruclips.net/p/PLr6Bwau6uSmsCUBMWN_2wqq-9hAHzc2Ct
También tenemos folletos sobre las diversas formas de vasculitis que están en español.
www.vasculitisfoundation.org/download-order-literature/#Spanish
The Vasculitis Foundation would love to share your story with others who are living with vasculitis. If you would be interested in sharing more of your story with us please email me at jwages@vasculitisfoundation.org
thank you for giving all the Information needed to be known, but i have a question i did look up for the reason behind why mostly medium-sized and small muscular arteries get necrotizing inflammatory? can you please recommend any books or references to look up. I’m in need for my report and presentation of this topic.
I really enjoyed watching this video. It is very informative. However, some symptoms do not seem to match mine but my doctors believes I have PAN. I started with swelling of left thumb, followed by left big toe and then my left ankle bone started hurting then the left ankle got swollen. Now my right knee started hurting and right heel started to hurt but no swelling to the right knee or right heel. I am very frustrated since I have gotten X-rays. blood work have only indicated inflammation, echocardiogram, and allergens testing which are negative.
I was diagnosed a few months ago with severe PAN, how long should it take until the pain really improves to the level where I can go, for example, a whole week without painkillers?
We are sorry to hear you are still struggling with pain associated with PAN. Unfortunately, I don't know the answer to your question, but it is often helpful to connect with others who are living with PAN who can share their experience with how long it took for the pain to improve. Our patient support coordinator can connect you with others, or you can connect with people via our online community, or one of our virtual support groups. Here is information about how to connect with those resources:
* Ask to be connected with someone living with PAN via our patient support coordinator www.vasculitisfoundation.org/about/contact-2/
* Connect with our online vasculitis community www.inspire.com/groups/vasculitis-voices/
* Join one of our weekly virtual support groups www.vasculitisfoundation.org/virtual-support-meetings/
Here are some other resources you may find helpful:
Treatment Guidelines for PAN from American College of Rheumatology and the Vasculitis Foundation: www.vasculitisfoundation.org/2021-acr-vf-pan-guidelines/
Video on treatment guidelines ruclips.net/video/39efFuCl32M/видео.html
Hey i was going through this pain and what really helped me is “VALASTA” and also dr. Joe Dispenza he has a online thing please check it out and i wish you the best
does PAN associated with the pain in the PAN area?
Because PAN can affect so many organ systems, its symptoms may be wide-ranging. At onset, patients may experience fever, night sweats, weight loss, skin sores, and severe muscle and joint pains that develop over a period of weeks or months.
You can learn more about other common symptoms of PAN here www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/#1545067276128-23d19338-9ab3
@@vasculitisfoundation Thank you
how people who have severe adverse reactions to glucocorticoids are treated?
Here is a link to the American College of Rheumatology guidelines for treatment of PAN. www.vasculitisfoundation.org/2021-acr-vf-pan-guidelines/
This should help you and your doctor decide how best to treat PAN if you have an adverse reaction to glucocorticoids.
You can find more resources related to PAN as well as information about virtual vasculitis support groups on our website.
www.vasculitisfoundation.org
www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/
www.vasculitisfoundation.org/virtual-support-meetings/
@@vasculitisfoundation thank you very much
My dad was 33 when he died from this.
We are so sorry to hear that. A lot of progress has been made in the diagnosis and treatment of vasculitis, we wish it would have come soon enough to help your dad.
My husband has severe pan I AM SO SCARED
We are so sorry to hear about your husband's diagnosis. However, we do want to reassure you that with treatment and monitoring for flares/relapses most people with vasculitis live long, healthy, and very fulfilling and happy lives. Finding a support community is a huge help. You can follow the Vasculitis Foundation on Instagram, Twitter, or Facebook; join our online support community www.inspire.com/groups/vasculitis-voices/
or join us for one of our virtual Zoom support groups www.vasculitisfoundation.org/virtual-support-meetings/
You and your husband are not alone and the Vasculitis Foundation has a ton of information and support to offer including treatment guidelines www.vasculitisfoundation.org/2021-acr-vf-pan-guidelines/ and other helpful information www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/