Vasculitis represents a family of rare diseases and can affect people of all ages. The outlook for people who have vasculitis varies depending on both the type and severity of the vasculitis. Treatment is often very effective if vasculitis is diagnosed and treated early.
I was drowning in my own blood in the lungs. Never had blood in urine. Muscle soreness, YES. Felt like my arms were tore off. My bottom looked like a spotted leopard.
We are so sorry to hear about the horrible symptoms you experienced but glad you received an accurate diagnosis so that you got the proper treatment. If you have not already connected with some of the other resources the Vasculitis Foundation offers such as in-person conferences, virtual support groups, and live webinars you may find them helpful. Many people mention that meeting other people with vasculitis on the support groups or at in-person conferences has been especially helpful and validating. You can find out more on our website www.vasculitisfoundation.org/
I had 6+ strokes, lost the most after the 3rd stroke. I had a group of doctors who finally diagnosed vasculitis cerebral. It took my neurologist going for a hunt on the internet where he found a pill being used in France’s National healthcare records. That pill stopped the strokes, but too late. I later was given mega quantities of vitamin D for a while, because I tested very low. I no longer take the mega doses…My daily dose is lower now. After watching this, I wonder if low D was a factor in my multiple strokes, and some other things. Thanks for your channel, and info.
We are so sorry to hear about the irreversible damage you have suffered, but are glad you finally got an accurate diagnosis and found a treatment that stopped your strokes. In addition to our RU-vid channel, the Vasculitis Foundation offers in-person conferences, virtual support groups, live webinars and other resources you may find helpful. www.vasculitisfoundation.org/
Thank you for touching on Primary CNS Vasculitis mine is located only in my front left lobe. There is so little patient level information on PCNSV I realize my type of vasculitis is very rare but it is important to touch on this type. It is scary not having as much info that is easy to understand for the normal patient. I am very thankful for this information and overview. Thanks much
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/
Hi hi! Thanks so much for these! I want to start running again. I am super unfit. I was training last in April 2022. But I had my 1st rituximab infusion and 2nd one is on the way. Can I run and train for a half marathon ? While on RTX, can I still run or will it put more stress on my body?
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!
Thanks so much for posting! Really interesting information. I'm going to have to look up more info on the vitamin D study in Behcets. Thanks to all for providing so much great information :)
Thank you for this presentation. You hit the nail on the head touching all facets of vasculitis and the grief process. You made this presentation so helpful by keeping it more general vs specific forms of vasculitis. I have primary CNS limited yo my brain only and don’t find many educational videos that make sense to the average person. If you know of any specific to PCNS vasculitis please let me know. Will you be giving further presentations? Last thank you again for doing this you did a spectacular job, your presentation was insightful and very helpful I will be sharing this with my family. Blessings to you on your vasculitis journey and in general you made a difference for me.
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. ru-vid.com/group/PLr6Bwau6uSmtl4dlyTZhYcFe4QBfQbgmu You can also find more information on our website www.vasculitisfoundation.org/education/vasculitis-types/central-nervous-system-vasculitis/
I went to my eye doctor she say I have inflammation in my eyes I have floaters and what looks like spiderwebs and also foggy vision she put me on methylprednisolone tablet and she put me back on my eye drops that I had from cataract surgery so what do I do now
Thank You so very much for doing this. I have Behçet’s disease and a lot of issues with all mucus membranes including my sinuses. They always are dry even if I have mucus…even though that might not make sense entirely 😂. I get terrible migraines that often starts with my sinuses feeling dry and inflamed. Just wanted to share a little about my experience. With Gratitude, M
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 ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-G0dkKOGuNdA.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 had at least 6 strokes in 2017. On my third stroke, I lost walking, lost my dominant right arm, and have terrible speech now. My 71 year old husband is now my constant caregiver. My vasculitis changed our lives, and finances dramatically. What finally sent me to the hospital on my first stroke was double vision that wouldn’t clear. While doctors were trying to diagnose me, I kept having strokes which led to ruined lives.
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/
Thank you so much for this class on notes! I’ve not ever written notes because I’m a terrible speller! But with the idea to make a draft first is genius!! Thank you for taking the time.
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/
Thank you for sharing - I have GPA (formerly Wegener’s). Your story is very similar to mine. I appreciate your positive outlook and the message you shared.
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 ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-Q1znjEUw8ig.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/
Hi sir this is ROHITH from India My sister is suffering from takayasu arteritis several organs were affected can you guide me how to take care of it your response will help as very valuable sir
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 ru-vid.com/group/PLr6Bwau6uSmuPKgCmJ36PjZspzog8uAjo 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/
The mRNA gene 🧬 therapy causes igG4 is become abnormal and unstable in the body after administration. The first two shots but especially any boosters to follow.
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 have had pmr for about 3 years. Recently I have been having systems of GCA. Headache, terrible malaize, vision blurring and some jaw claudication. I also skin on each side of my forehead that really rough and scaly. I also have shortness of breath like someone is sitting on my chest. Can this be from GCA. I go to get a temporal artery biopsy one teusday. They started me on 40 mg of prednisone but I weigh 320 lbs and it just seems to me that I need a larger dose. The 40 mg has helped but I still have a constant headeache.
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.
I have polly artritus ndosa did three years of chemotherapy and was on a load of medication sterriods and all the other meds l am fine now thank god hope you are to l actually couldn't put my feet on the ground will never forget it 😊
@@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
Wow... thank you for this... I was diagnosed with GPA in 2007. I was 24 at the time. I received cyclophosfomide and steroids in very large doses. And was informed that I might not have children because of this as it affects the ovaries. I wasn't married at the time and this was terrible news. I was lucky enough to be married to my then boyfriend in 2012 and I managed to fall pregnant after a struggle in 2014 with twins. Naturally. I've had more cyclophosfomide, steroids methotrexate cycles over the years and recently Azathioprine. None of these got me into remission, meaning a negative ANCA. I've always had a positive one. My count is currently 20. I am facing Rituximab soon, I am waiting for a date to be admitted. All the previous mentioned meds made me so tired, had hair loss, raw mouth. I live in South Africa and am very happy to have found this channel. Thank you so much. I am very nervous. But this helps ❤
People can have an allergic reaction to anything that’s why an elimination diet is a good idea there are some foods which seem to cause more of a reaction than others most people are aware of dairy ,nightshade vegetables and gluten but if you have a leaky gut it could be anything
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/
I look forward to his next webinar. My daughter was diagnosed at the age of twenty with MPA with lung involvement. At the age of twenty-three she was diagnosed with vasculitis of the eye. She still has fairly high markers and is going to be scheduled for more Rituxan in the next few months. Meanwhile she is trying to live her life but I have many concerns for her.
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 ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-aituAROaqx0.html These next 2 are question and answer sessions about the eyes and vasculitis ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-aituAROaqx0.html ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-ZRzCuR_jT6Q.html
We are so glad you found this helpful. Here's a link to our RU-vid playlist for people who are newly diagnosed ru-vid.com/group/PLr6Bwau6uSmsnJmiuvW9A8HtsPrFrpbFo 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/
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 ❤
@@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
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 ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-nfBqJs5Rozg.html Here are links to 2 follow-up webinars where the doctor answers questions asked by patients ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-aituAROaqx0.html ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-ZRzCuR_jT6Q.html
I have numb legs with drop foot and numb hands and fingers..... No visible rashes as such.... What's my best traetment? Dianosed with small cell with anca and gpa
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/
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/
