ANCA and Associated Vasculitis: GPA, Wegener's, and MPA

This Masters in Medicine webcast is one in a three-part series by Dr. Gary Hoffman. This webcast reviews the ideal candidates for cyclophosphamide therapy and the treatment of severe granulomatosis with polyangiitis and microscopic polyangiitis. Take the opportunity to also learn from Dr. Hoffman in Systemic Vasculitides and Primary, Idiopathic Vasculitis: Presumed Autoimmune Etiology.
To learn more about the Masters in Medicine series or to claim CME credit, visit www.ccfcme.org/...
The video was produced by the Cleveland Clinic Foundation Center for Continuing Education.

[@DBMedStuff]

I was diagnosed earlier this year and spent 5 months in the hospital. During that time I was in 4 separate medically-induced comas, intubated 4 times, had 2 tracheotomies, 2 chest tube, a lung biopsy, and a kidney biopsy. My wife and I are working on a vlog channel that talks about what it was like for both of us going through this process. Thanks for sharing!

[@baru3067]

David Burgess' Vlogs

[@DBMedStuff]

Yes?

[@acrazydream9408]

David Burgess' Vlogs my symptoms started in high school and I went through much of what you described. it's essential that you eat foods that reduce inflammation and find natural ways to relieve stress. Rest is not an option. You have to get it. Greens, organic apple cider vinegar, and grapefruits are your friends. white flour and white sugar and meat are foods you want to greatly reduce. If you ever have any questions, email me at [e-mail] - You're not alone. 💚

[@sebastianngassa2050]

A Crazy Dream list to me the herble can make treatment for this problems of vasculitis

[@WoundedEgo]

Were you taking calcium supplements at the time?

[@juliekan1906]

I have GPA, for 21 years. I relapsed 5 years ago with my sinuses and I'm having a very difficult time getting into remission again. I'm glad to see there's more research with GPA and hope someday there can be a cure.

[@DLStarbuck]

Hi Julie, How have your sinuses been affected? Have you had surgery as a treatment? GPA is effecting my sinuses. Both sides are half blocked with scar tissue. My ENT doctor has recommended cutting out this tissue and splinting nostrils wile they heal. If you had surgry how did it work and did it last. Thank you very much for your advice.

[@dazeloven8140]

​@@DLStarbuck I hope this this reply finds you in good health, my mum has GPA for 2 years now, and she has sinuses inflammation, and she is taking brufen to calm down headache every morning, did you find solution for your sinuses

[@DLStarbuck]

@@dazeloven8140 I hope your Mum feels better soon. I never had headaches. I have scarring in both nostrils about 50% blockage. I took Prednisone for sometime which helped keep things stable. I've now transferred to methotrexate and am stable so far. Best of luck.

[@dazeloven8140]

@@DLStarbuck my mom is on cyclophosphamide(Endoxan) and Medrol, i'll ask her to ask her physician to try with methotrexate, i hope you will get cured insallah

[@dangelmrn3782]

Cheers for the video content! Apologies for the intrusion, I would appreciate your initial thoughts. Have you ever tried - Ganrayden Peerless Gratification (erm, check it on google should be there)? It is a good one off product for eradicating your urticaria minus the headache. Ive heard some super things about it and my work colleague at last got great results with it.

[@swiftcanucker7730]

I suffered with Wegeners at 17 years old. I beat this illness for good and it will never come back. It took a huge paradigm shift in my understanding of healing and made me realize how important it is to have our bodies operating in synergy.

[@acrazydream9408]

SwiftCanucker the holistic approach to life becomes the only option with wegeners 💚

[@mrsmoose5953]

What did you do that helped?

[@gmogottago7746]

SwiftCanucker Why would you type this and not share what you did. Not helpful.

[@rejuve50plus59]

Well done , so did I. Three years off all drugs, fit, strong and amazingly healthy 65 year old. Don't swallow the Big Pharma trap. Check out: rejuve50plus.com.au

[@WoundedEgo]

@@rejuve50plus59 Did you quit taking calcium supplements?

[@KJ-xc6qs]

Four 4-hour IV infusions of Retuxin given once/week put me into remission. I experienced no side effects and feel wonderful now.

[@user-wz4nn4ii4r]

Lovely to hear 🙏🏽wishing you continued good health 💙💫

[@dazeloven8140]

I hope this this reply finds you in good health, my mum has granulomatosis with polyangiitis for 2 years now, and she has sinuses inflammation, and she is taking brufen to calm down headache every morning, she is on cyclophosphamide(Endoxan) and Medrol, but she never went into remission, next week shes going to try with retuxin inshallah, but its expensive, how long you are in remission after 4 infusions, i hope you're going to be cured forever after that 4 infusions

[@dazeloven8140]

and what else did you take alongside rituxan?

[@KJ-xc6qs]

@@dazeloven8140 Everyone responds differently to medications, but for me Retuxin was a miracle drug. The GPA severely affected my lungs (resulting in double-pneumonia) and one month in hospital. My sinuses were inflamed (One 20 mg.of a Benedryl tablet taken at night cleared up the stuffiness and helped me sleep). Adding to the misery was the fact that my kidneys were at a pre-dialysis 16% functional level. My pulmonologist had me on oxygen and the rheumatologist placed me on 50 mg/day of Medrol which did not agree with me at all, (my face swelled up like a balloon along with other side-effects). I demanded to be weaned off of all steroids -- Prednisone and Medrol. My main focus is supplementation (500 mg vitamin C, B-complex, Magnesium, D3) and good nutrition which, based on my own positive results, made all the difference. Plain Greek yogurt with living probiotics every day and hydration is extremely important. I drink a lot of pure natural mineral water throughout the day along, cinnamon/ginger tea+honey+almond milk, and plenty of fresh fruits and vegetables. (Raw radishes+cucumbers are nature's diuretics and help flush the kidneys.) I'm 80% vegetarian. Never underestimate the value of deep restorative sleep. I listen to my body and allow myself enough rest. Relaxing and therapeutic Epsom salt baths treat sore muscles and helps flush bodily waste. My kidneys are nearly normal now -- in 8 months their function increased from 16% to 75%. I just turned 66 years old and remain in remission. Hope this information has helped and I wish your mum the very best for a full recovery.

[@dazeloven8140]

@@KJ-xc6qs Thank you, that was valuable info especially for supplements and nutrition, my mom was healthy person all her life, she is 58 now, and one spring she was washing balcony with cold water, and it was cold outside and she caught cold and her nose started leaking for few months(standard medical treatment didnt work), but never before in her life was she had even leaking nose, not ever in her life she had headache, her parents died at 93, and they were really healthy people until their death. On the other side her job included lots of ironing(we are suspecting that cold she caught in combination with evaporation of those laundry detergent and fabric softeners while ironing is cause of her GPA. Then she had problem with opening her left eyelid in the morning, she started sweating profoundly day night, and she noticed that her left foot started to drop sometimes but barely noticeable to her, she felt tired. Then she went in hospital and she had high CRP levels in her blood indicating inflammation in the body, they gave her every antibiotic under the sun in high doses trying to get rid of high CRP. After all those antibiotics she went disabled in her both feet and left fist fingers, she could not stand up, or walk and her mouth twisted, she went unconscious few times, she almost died. Then after 2 months of misery they dicovered that she has GPA. Then they could not put her on cyclophosphamide(Endoxan) right away because those antibiotics they gave her damaged her liver. Her physicians had to gave her those antibiotics probably because her CRP and fever she later, seems like after antibiotics, developed. She went healthier, without fever in hospital on her foots, and came back home in wheelchair, i dont blame physicians, they did the best they could. It seems that all those antibiotics caused her GPA surfaced more obviously, which is probably good. As i mentioned earlier, they put her on cyclophosphamide(Endoxan) and Medrol to this day. In first few months after high doses of Medrol her head swelled up like a balloon, and she never went into remission, but her feet and and left fist fingers started working and she can walk now, but she never regained her strength, she cant walk more than 500 meters. Two months ago first time in her life headaches started, almost 2 years after her GPA discovered. Scar tissue comes out from her nose regularly and shes coughing and its seems like drainage run out of her nose, down the back of her throat, and shes coughing that drainage out. She lost vision in her left eye almost completely, and lost hearing in her left ear almost completely, apart from that, because GPA was discovered immediately she doesn't have to this day problem with any other organ in her body. Her drug regimen is cyclophosphamide(Endoxan) and Medrol 16 mg, Fenix 20 mg (pantoprazol) for gizzard protection, Berlithion, Ideos(vitamin D3 and calcium), Mg tablet, Vitamin D1, MaxiOmega 3.

[@bangitem5894]

terima kasih anda telah meneliti granulomatosis wegener, karena istri saya telah meninggal 2 tahun lalu karena lethal midlan granuloma wegener

[@dudleyburleson8668]

Diagnosed 4 years ago, severe conjunctivitis, migrating joint pain, kidney failure, and finally severe bleeding lungs, it almost got me but I got through it thanks to God and the hard work of these fine men

[@ffjokersteam4367]

What are your first symptoms of gpa

[@mariusghemis4255]

thank you.that was a really,really good presentation.

[@mohammedsiddiqui1389]

Excellent presentation !

[@acrazydream9408]

why is food never mentioned in the care plan?

[@what_is_going_on7166]

because there is no special diet for an autoimmune disease

[@RoseSalinas77]

This is my point too! This IS a special diet for autoimmune disease! kzbin.info/www/bejne/d6mlgJWrotqkftk

[@user-wz4nn4ii4r]

Drugs make money 💵 unfortunately, that’s what it comes down to...

[@wentoneisendon6502]

@@user-wz4nn4ii4r this disease is a death sentence without drugs

[@Pr0ph3cy-k5z]

Gluten, sugar, dairy, high FODMAPS are all inflammatory foods in autoimmune diseases. Avoiding those will help, but won't cure it. I have hypothyroidism, GPA Vasculitis and Lupus. For 2 years, I have managed to avoid the drugs through a strict diet and herbs, but my Neutrophil count keeps rising. I will need Prednisone soon. I take Thunder God Vine "methotrexate", Ksm-66 Ashwagandha, Boswellia, Vitamin B-1, Guggul extract and high grade Turmeric everyday all in raw form along with a very strict 100% gluten free diet that is free of added sugars, dairy and is low FODMAP. Garlic and Onions are high FODMAP and will cripple me for days.

[@Javiskinderm]

Thank you so much for a valuable lecture

[@marilynneace5185]

I need to find out if there is a different in people with Wagner's who are diabetics before they get the Wagner's?

[@acrazydream9408]

Marilyn Neace what did you find?

[@davidmbeckmann]

Well done, sir!

[@what_is_going_on7166]

interesting that these are all european studies. Very unusual. Why might that be?

[@nc3802]

very clear, thank you

[@charliehaa]

I've had 3 relaps

[@acrazydream9408]

charliehaa what are you doing to prevent the 4th?

[@charliehaa]

Taking prednisone and doing a rituxan infusion every 4 months

[@acrazydream9408]

charliehaa what is your diet like? What do you do to relieve stress? sleep patterns? How can you get off the meds? I'd love to speak with you about options - No cost - We are in this together 💚

[@dazeloven8140]

@@acrazydream9408 I hope this this reply finds you in good health, my mum has GPA for 2 years now, shes on prednisone and cyclophosphamide, did you manage to get off the meds

[@commonsense7673]

very good

[@touseefbeig915]

Nice

[@suteners2111]

does marijuana helps for wegener desease?

[@swiftcanucker7730]

+suteners2111 I am using it for my Wegener's. I am unsure if it helps with calming inflammation, however it does give me a natural stress relief which is important considering the drugs make me immune-compromised. On the downside, I do find it increases my allergic reactions mildly (increased sneezing) as compared to if I didn't vaporize/smoke it. As I do have granuloma leisons in my lungs, however, I opt most of the time to eat rather than vaporize/smoke it.

[@suteners2111]

SwiftCanucker try Venlaxor (venlafaxinum) it is antidepressant and it worked for me. pure nicotine helps also, i dont know why. i think WG is caused by depression. i would guess that any stimulant works and reduces or eliminates symptoms. or maybe im the only one. weed doesnt work for me.

[@suteners2111]

Google User Dead serious. Venlaxor is only thing that keeps me going.

[@suteners2111]

Google User I live in Latvia

[@suteners2111]

no i dont use it. you can write email [e-mail]

[@joannboyd8855]

Who would play games with someone elses life smh