Thank you! Beautifully explained

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.

1st thing is you don't want this disease. Red spots below the waist and nasal discharge. Fatigue was my major problem. So tired.

Maybe they shouldn’t inject us with nano particles against our will then we wouldn’t need this to remove them.

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.

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

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?

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 :)

Lots of studies show a carnivore diet helps heal you and has all and more nutrients than plant based (research I have done. Not medical opinion)

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.

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

Thank you for this. I've learned a lot about my condition. In my country it's hard to find a good doctor that specializes in Vasculitis

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.

Wonderful speaker. I related to her speech.

Very informative. Thank you for this.

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.

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.

Thank you

❤Muchas gracias De

Is there any suggestion for an EGPA patient with peripheral neuropathy .

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

Merogenomic did a video on 20 children with increased elevated Igg4 . After the mRNA gene therapy GMO product. That can't be a good thing..

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.

Mergeonmics.

I’m nearly diagnosed and finding this video has been very helpful. Thank you so much.

Can this have that it’s in another language as part of the title

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 love this so much Lexey! You are so strong 🫁🫁🫁🫁🫁

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 😊

My hero, annaruth

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

Tengo Vasculite visual, y me la están tratando con quimio vía oral, es correcta este tratamiento.

Thanks for this folks!!!

Hi everyone. I'm Jackie. I was diagnosed with GPA In 2019.

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.

New patient here. Very informative ❤

Great presentation and information. Thank you to everyone!

Kind of sad some places won’t let a support person go.

Azathioprine is one of the oldest and safest (for those that don’t hsbe allergies to it) it’s also approved to be on it and get pregnant. Etc

Thank you.

How do I get access to the info on conferences? Is there a link I can go to? TY!

I have a high range of IGG4

What if episcleritis is chronic in a specific spot and doesn’t go away?

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

Thank you for this video.....I went to the hospital and they said follow through with the dermatologist. ❤❤❤❤❤

Thank you for posting this! As a GCA patient, you answered questions that I have been thinking about.

Doctors in France can now give prescriptions for art!