Відео

Do you know what type of vasculitis you have? Is it Central Nervous System vasculitis? You can learn more about CNS vasculitis as well as other types of vasculitis on our website www.vasculitisfoundation.org/ You can also find out more about our virtual support groups, use our "find a doctor" tool to help find doctors in your area who treat vasculitis, and connect with our patient support coordinator who can help direct you to resources to help answer your questions. We will gladly answer your question. We just need a little more information. If you complete this "contact us" form you will receive a reply typically within 24 hours www.vasculitisfoundation.org/connect/

@@vasculitisfoundation just history of two fits.ena show sleroderm only igm positive for one month.ana double standert DnD all test are negative .igm also negative next month.no history..only two finger show rehynod symptom only two days.just leg pain.head ache just few days .after 8 mnth repeated MRI show improvement.size and area of Infamation is improve. In steroid alternate a day 5 gm. Daily one CHQ table one vitamind tablet( colchicine only 5 mnth use)

We are so glad you found this helpful. You are so right. It is very rare, but also very important to provide information and education on this type of vasculitis so that patients can understand. If you have not already visited our website, I'd encourage you to do so. We have additional information on CNSV and you can also learn more about future in-person webinars, local conferences, virtual support groups, and more www.vasculitisfoundation.org/

Based on the current information we have on Rituximab and vasculitis it is safe to exercise. While it is always important to check with the healthcare provider who directs your vasculitis treatment, in most cases exercising at a level you can tolerate is recommended for people with vasculitis. Once you have your doctor's clearance, start training. You may find you have to modify the training regimen you were using in 2022 as you may need to give yourself more time before you proceed to the next level, but many people with vasculitis have been able to participate in half-marathons, marathons, and more. We're cheering you on!

We are so glad to hear it was helpful.

We are so glad you enjoyed this workshop and found it helpful. Here is a link to the playlist of videos we have on CNS vasculitis. ua-cam.com/play/PLr6Bwau6uSmtl4dlyTZhYcFe4QBfQbgmu.html You can also find more information on our website www.vasculitisfoundation.org/education/vasculitis-types/central-nervous-system-vasculitis/

Who is the doctor that takes the lead on your vasculitis treatment? We would recommend consulting with them as well.

We are so glad you found this helpful. Loved your description of your mucus membranes being dry even if you have mucus-Behçet's disease symptoms can be crazy-I am sure there are others that can relate. If you have not already connected with other Vasculitis Foundation resources I'd encourage you to do so. We have online support groups, in-person conferences, and of course live webinars. You can find out more on our website www.vasculitisfoundation.org And you may have already seen this, but we just had a recent webinar on Behçet's disease ua-cam.com/video/G0dkKOGuNdA/v-deo.html

We are glad you found this helpful. We may be able to help you connect with a doctor that specializes in vasculitis in your country. You can reach out to us using this contact form www.vasculitisfoundation.org/connect/ We also have additional information about vasculitis, including information in Spanish, on our website www.vasculitisfoundation.org/ www.vasculitisfoundation.org/resources/spanish-resources/

I am so sorry to hear this. We will continue to raise awareness of vasculitis so that it can be diagnosed quickly to help prevent long-term damage such as what you are suffering. I know you said your speech has been effected, but we do have online support groups you may find helpful. We also have an online "chat community" in partnership with Inspire. You can find out more about them here www.vasculitisfoundation.org/living-well/find-support/

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/

You're welcome. We are so glad you found it helpful.

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/

You're welcome

Thanks to the great education from previous Vebinars, I answered almost all of the questions correctly!

Once the inflammation from the vasculitis is controlled, the impacted nerves may be able to heal to some extent. Healing is relatively slow-you may not notice improvement for months-and the damage may not heal completely. There are medications that can help with neuropathy pain and physical or occupational therapy may be helpful as well. This short video does a good job of explaining why vasculitis causes neuropathy and what to expect as far as healing the nerve damage ua-cam.com/video/Q1znjEUw8ig/v-deo.html Others with EGPA may have some helpful suggestions. We have virtual support groups and an online chat support community where you could ask for tips. You can find out more about those opportunities here www.vasculitisfoundation.org/living-well/find-support/ www.inspire.com/groups/vasculitis-voices/

Here are some resources that may be helpful. This page gives information on Takayasu Arteritis (TAK) www.vasculitisfoundation.org/education/vasculitis-types/takayasu-arteritis/ This page contains treatment guidelines for TAK-look under the "Medical Management for TAK" section. www.vasculitisfoundation.org/giant-cell-arteritis-gca-takayasu-arteritis-tak-guidelines/ Here is a playlist of all of the videos we have about Takayasu Arteritis ua-cam.com/play/PLr6Bwau6uSmuPKgCmJ36PjZspzog8uAjo.html I hope this information will be helpful to you and your sister. To stay connected to the Vasculitis Foundation and receive emails about latest vasculitis research, etc. subscribe to our Enews www.vasculitisfoundation.org/connect/e-news/

Hi can you tell me something more about it pls . my igg4 is super high .

We are so glad you found this helpful. If you have not already spent some time on our website, you will find that it contains lots of helpful resources for people who are newly diagnosed. www.vasculitisfoundation.org/newly-diagnosed/

I am so sorry to hear about all of the symptoms you are experiencing. The temporal artery biopsy should provide your healthcare providers with enough information to determine whether or not you have GCA. I'm glad the biopsy will happen soon as it is important to diagnose and treat GCA quickly. Here is a link to the American College of Rheumatology/Vasculitis Foundation clinical practice/treatment guidelines for GCA. www.vasculitisfoundation.org/giant-cell-arteritis-gca-takayasu-arteritis-tak-guidelines/ Refer to the medical management of GCA section for treatment guidelines. If you have GCA, the severity of your symptoms, how your vision is being impacted, and other factors will all be important in determining the optimal dose of prednisone. Discuss the ongoing symptoms you are experiencing with your doctor and consider sharing the clinical practice guidelines with them.

@@vasculitisfoundation I biopsy came back negative for QCA

We are glad to hear you don't have GCA, but hope you receive an answer to what is causing your symptoms.

We are so glad to hear you are doing better.

@@vasculitisfoundation thank you very much appreciated 👍 a doctor in the regional knew what l had dr el raffy he had seen it in elderly people when he was out in his own country man saved my life no doubt about that

You should consider nominating Dr. El Raffy for the V-Red award. It recognizes doctors who make a life-saving diagnosis of vasculitis so patients get the treatment they need. Nominations aren't opening until late Summer, but here's the link to the page on our website www.vasculitisfoundation.org/treatments-research/v-red/

Yeah was tough being on chemotherapy l am only fifthy two had to stop working for three years for the illness to be gone am on medication for life they spaced out the chemotherapy every few weeks then months then once a year absolutely fantastic they were in the regional

@@vasculitisfoundation will do man is a genius no doubt about that knew exactly how to treat me and what to give me

Respuesta traducida con Google Translate: Tenemos más información sobre las diferentes formas de vasculitis, incluidas las opciones de tratamiento, en español en nuestro sitio web. Los medicamentos de quimioterapia oral, como la ciclofosfamida, se utilizan para tratar algunas formas de vasculitis. www.vasculitisfoundation.org/resources/spanish-resources/

You bet! We are so glad you found this helpful. We don't know if you noticed the link to a "Tips for Flying Solo" PDF in the description, but here's the link if you'd like to check out more tips from our panelists and others who are flying solo. www.vasculitisfoundation.org/wp-content/uploads/2024/04/Tips-for.pdf

@@vasculitisfoundation Thanks. My wife and I both have early PN, not painful yet. I'm grateful we can support each other and feel for solo-flyer hardships.

Hi Jackie. We hope you have already connected with the Vasculitis Foundation, but if not, be sure to check out our website www.vasculitisfoundation.org We have virtual support groups www.vasculitisfoundation.org/living-well/find-support/ In-person conferences www.vasculitisfoundation.org/connect/conferences/ and virtual events/webinars events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD?search=&sortBy=date&category=&date=TODAY&keywords= We have also partnered with Inspire to host an online community for people living with vasculitis www.inspire.com/groups/vasculitis-voices/

So sorry to hear about your daughter. We are glad you found this webinar helpful. Not sure if you've seen these yet, but here is a webinar on vasculitis and the eyes ua-cam.com/video/aituAROaqx0/v-deo.html These next 2 are question and answer sessions about the eyes and vasculitis ua-cam.com/video/aituAROaqx0/v-deo.html ua-cam.com/video/ZRzCuR_jT6Q/v-deo.html

Thank you so much!

We are so glad you found this helpful. Here's a link to our UA-cam playlist for people who are newly diagnosed ua-cam.com/play/PLr6Bwau6uSmsnJmiuvW9A8HtsPrFrpbFo.html And here's a link to the newly diagnosed section of our website www.vasculitisfoundation.org/newly-diagnosed/ Please don't hesitate to contact us with questions www.vasculitisfoundation.org/connect/

Glad you enjoyed it!

For those who would like to know more, you can find out more about azathioprine here www.vasculitisfoundation.org/treatments-research/treatments/other-treatments/ And more about vasculitis and family planning/pregnancy here www.vasculitisfoundation.org/living-well/reproductive-health/

Hi there ...I have systematic gpa in remission on my meds ... I had to take cyclophosamide /high dose prednisone and I did lose 3/4 of my hair and I suffered neutropnia while on cyclophosamide so I think the drugs impact on everyone very differently ... just as our disease can be very different ... but I will also say I kept walking through all the downs and pick me ups again ..two years later I have walked good times for 5 21.6km marathons and two 10km walk marathons ... I have wanted to have me back and I feel close to me again ... the sun will shine ❤

Happy to hear Azathioprine worked for you! I felt absolutely terrible on it. Lost some hair, raw mouth, extreme tiredness and headaches. 😊

@@janeswart1154 my hair fell out zwith the high dose steroids. Once I weaned off it came back thankfully. It was bad. But took a while after the steroid to fall out

Glad you found this helpful.

Here's the link to the conference page on our website. Hope to see you at one of our conferences. www.vasculitisfoundation.org/connect/conferences/

We'd recommend consulting a rheumatologist if you have not done so yet.

Hi can we talk about igg4 disease. I am new to this disease 😢 I am 35 yrs old mother of 4 kids and very very scared. Did you had any more test for igg4? Any biopsy or I don't know.... anything.... I will have biopsy on July . I don't know what to do ,what to think just crying at the moment. How high is your igg4 tell me pls

Unfortunately I don't know the answer to your question. Here is the full webinar, maybe the information in there will be helpful ua-cam.com/video/nfBqJs5Rozg/v-deo.html Here are links to 2 follow-up webinars where the doctor answers questions asked by patients ua-cam.com/video/aituAROaqx0/v-deo.html ua-cam.com/video/ZRzCuR_jT6Q/v-deo.html

@@vasculitisfoundation Thanks!

How's it now, may u share what eye drops or meds are u taking to cure it

You can find the ACR/VF treatment guidelines on our website. They may help guide you and your healthcare team. www.vasculitisfoundation.org/treatments-research/treatments/acr-treatment-guidelines/ Plain language treatment guidelines www.vasculitisfoundation.org/wp-content/uploads/2024/03/GPA-MPA-Recommendations-Combined.pdf You can also learn more about GPA here www.vasculitisfoundation.org/education/vasculitis-types/granulomatosis-with-polyangiitis/

We are glad you found this helpful. You can find even more information on vasculitis on our website www.vasculitisfoundation.org

So glad you found this helpful. You can find even more information about GCA on our website www.vasculitisfoundation.org/education/vasculitis-types/giant-cell-arteritis/

That's exciting!

Dr. Orzechowski specifically addressed CarT cell therapy in her presentation because the VF has received a lot of questions about CarT cell therapy recently. This is an exciting time for vasculitis research with many promising treatment options to explore. There is an international vasculitis conference happening this coming week in Barcelona Spain. Vasculitis medical experts and researchers from around the world will meet and share the latest research. I have a feeling Cathepsin C inhibitors will be discussed in Barcelona.

We are sorry to hear about the symptoms you are experiencing, but glad you have a diagnosis that will guide your treatment plan. We have many resources on our website such as treatment guidelines, virtual support groups, and educational webinars that you may find helpful. Our website is www.vasculitisfoundation.org. This landing page will guide you to sections that may be especially helpful for someone who is newly diagnosed www.vasculitisfoundation.org/newly-diagnosed/