My wife Laura had this for 22 yrs , was a school teach for 16 yrs, we had one son.Once on cytotoxic could never have children again. She attended three university finished up her masters at UL while at MD Anderson spent twelve days, came home with feeding tube,pick line,pin rose tube,half tongue removed, broken hearted an died !!!! She was 47. I HAD THE PRIVILEGE OF BEING MARRIED TO HER FOR 27 yrs. She never complained. A true Christian .....I sure miss you Laura !! An the tears are still here. ( love Herb )
An excellent description...after yrs of antibiotics etc I finally found the reason for All the symptoms I have endured over yrs of pain ... thankyou Anne
Lovely Video! Apologies for the intrusion, I am interested in your thoughts. Have you considered - Ganrayden Peerless Gratification (should be on google have a look)? It is a great exclusive guide for eradicating your urticaria without the normal expense. Ive heard some unbelievable things about it and my work buddy at last got great success with it.
Thank you. I was diagnosed back in 2006 (at age 26) and I’m now worried about relapse after having Covid 5 months ago. Working with my doctors on this currently. 🙏🏾
Hi... What kind of symptoms you had? What was your treatment over these years? My husband is ben diagnosed and is put under 60 mg prednisone. He is now suffering from serious side effects like numbness of body parts, face, mood swings etc
quick comment because i'm a 21 yo diagnosed with with GPA earlier this years.my first symptoms were nosebleeds and congestion and eventually severe joint pain and swelling in all of my joints (excluding my spine). i also had the classic skin rash and kidney inflammation. i've been through 2 rounds of chemo and on steroids for 11 months. Today, my kidneys and sinuses are doing well, but I still deal with permanent joint and nerve damage.
My Nephew has been diagnosed approximately 3 yrs ago but today Aug 3, 2021 he has been diagnosed 3 weeks ago due to possible Stress but has come back in avengence!!!
Thanks for this very informational video I actually have Wagner's or otherwise known as microscopic granulomatosis with polyangiitis and this was very helpful to me thank you
I have this, found out 2 years ago. Now its starting to come back and i just don't think I'm strong enough to go through all that over again. I'm very seriously thinking about not getting the treatment this time and just giving up... This has ruined my life and now it's back. I think it has won
I have this as well, don't let it win. You never know the extent of what you'll have to go through. I have two sons and I hope that I have the strength to endure this again if it shows up. It's very nasty, I know.
I was diagnosed with this after blood work and biopsies. I refused treatments due to the financial burden it will cause on my wife shall I die as well as the major side effects. I'm 47. Just got everything squared away. Now waiting. Was given a 5-7.5 month expectancy. I'm on 7 months and 1 day. Currently in kidney failure, no hunger at all, rapid weight loss, intense pain.
Ive had this since 2014... And the shortness of breath has never really went away. Im so tired of it. Had to give up many things i loved because it was just too hard to do with this shortness of breath. I wish something would help.. been on antibiotics for years and been on ritux, methotrexate, and azothioprine.. Only prednisone ever seems to help the breathing, but that's a very temporary fix. Maybe a week of help.. Trying out Avacopan but it hasn't shown any signs of helping.... I'm really tired of this sickness and idk what I'm gonna do if this new meds don't do anything for me.
Hi, I have just recently been diagnosed with this, and I am wondering a bit about the avacopan treatment. Atm im on prednisolon and cutting about 10mgs every 2nd week, going to cut 5mgs when I reach 30mgs. They have applied for avacopan for me, but it is expensive so they have to decide if I am wourth it or not. What is your experience with going from prednisolon to avacopan, and is this something i should try and push harder on? Sorry if its personal, as I Said i was just diagnosed so im kinda new to this whole thing, and it kind of scares me a bit.
@@krisdroidrka3446 I'm Canadian so it was pretty easy for me to get it tbh. But for me personally, it didn't do much. I didn't feel much of a difference while I was on it, and then I started to get an allergic reaction on it.. so I had to stop. But this is just my personal experience. Apparently it works better for other people, my doctor seemed optimistic about it when he brought it up at first. Idk if I'd write off the medication completely just from my experience. I was just allergic. and my waegeners symptoms really focuses on my esophagus. Steroids is the only thing that helps me there. But! Before when my symptoms were more widespread, Rituximab helped with those other symptoms! Have you tried this one?
Just found out a few months ago I have this consultant thinks had it for around a year maybe longer and I should be hospital but best not due to covid he thinks I am doing OK and not that worried all of this over the phone And a good idea to be kept monitored from now on and not just left and forgotten about lucky me
I was diagnosed last year ,most of my septum bas corroded away ,I have s constant flow of mucous and the blood vessels swell burst bleed and get very sore ,it has started to swell on the outside of my nose when it bursts I'm left with a very sore nose and more of the septum gone.I have an appointment tomorrow with the doctor I'm not expecting good news after the last visit and what my options are so I'm scared,and can't have anyone with me I'm also disabled and have to use a wheelchair ,I will face it and listen to what he says and do whatever it is he has to do as I really can't live like this anymore it's debilitating and I am constantly in pain from sinus infections every three weeks ,I have had enough so if he can't do anything I won't be hanging around for much longer ,It will be a sign my time has come and bough out gracefully
@@theosenpai3621 ,Its still the same,thank you. But I have bigger things to worry about I was diagnosed with Brest cancer and in order to save my life I have to have a double mastectomy and lymph nodes removed from under my arms.
Thank you was diagnosed 1 ago. I have been on retuxinab as of now it’s working but I have been noticing shortness of breath, fatigue and pain and discomfort on my kidneys is that something I should be concerned about.
i m on retuximab too wat do u think about covid 19 and wegners should we take the retuximab i was due for retuximab on 2 april but my doctors say i have to wait one month till i can get medicated
You simply are amazing...One Comment though. Please add Clinical Vignettes (as brain storming) to your videos so that it is interesting and memorable to your viewers esp. the the Doctors. After all, we see patients in Wards. THANKS SIR!!!
@@Pr0ph3cy-k5z mi esposo sufre de esta enfermedad, fue operado por los monjes tupyara de Brasil que realizan sanaciones a distancia, el siguió todas las recomendaciones que ellos nos dieron y a tenido una notable mejoría, si le interesa busque su página en Internet, yo no se la puedo enviar ya que en yutuber me la borran, pero busque la allí le indicaran como contactarlos y que hacer para resibir su ayuda que es totalmente gratuita.
Try say Granulomatosis with Polyangiitis when you can't breathe and have to talk at the sametime so people around you know what is going on. Very Hard TO DO!!! It's hard to pronounce when able to breath and speak properly let alone not able to breathe and gasping for your life. I didn't hear any reasons as to what can cause it or how to treat it except some meds. It would be nice to know what the root cause of it is or if there are a few causes and the solutions. Some of your big medicial jargon could have then been simplified to a common dictonary. It was distracting. I have been diagnosis with it and try to find as much info as I can. The anca learned already and then you went into Medicial jargon and I was like ok what does that mean and how its that connected to it all? That was info. not sure of it's relavance or importance to the condition. Confirmed what I knew about Anca.
🎥 DON'T JUST WATCH, LEARN ACTIVELY! TRY THE QUIZ! 🤓
youmakr.ai/test-playground/questionnaire/673d35db859b9c170836eb35
My wife Laura had this for 22 yrs , was a school teach for 16 yrs, we had one son.Once on cytotoxic could never have children again. She attended three university finished up her masters at UL while at MD Anderson spent twelve days, came home with feeding tube,pick line,pin rose tube,half tongue removed, broken hearted an died !!!! She was 47. I HAD THE PRIVILEGE OF BEING MARRIED TO HER FOR 27 yrs. She never complained. A true Christian .....I sure miss you Laura !! An the tears are still here. ( love Herb )
hi is she had periods or not after wegemers
beautiful words, I'm sorry for your loss Hebert
I'm sorry for your loss :(
Can you be a an Advocate to our Family
redshoes2017@gmail.com
Please you have my Sympathy....
An excellent description...after yrs of antibiotics etc I finally found the reason for All the symptoms I have endured over yrs of pain ... thankyou Anne
We just learnt this 2 weeks ago and Armando has come to the rescue again. Thank you so much
Love from a Nigerian medical student/TH-camr
Lovely Video! Apologies for the intrusion, I am interested in your thoughts. Have you considered - Ganrayden Peerless Gratification (should be on google have a look)? It is a great exclusive guide for eradicating your urticaria without the normal expense. Ive heard some unbelievable things about it and my work buddy at last got great success with it.
Thank you. I was diagnosed back in 2006 (at age 26) and I’m now worried about relapse after having Covid 5 months ago. Working with my doctors on this currently. 🙏🏾
Hope you are doing better ❤
Hi... What kind of symptoms you had? What was your treatment over these years? My husband is ben diagnosed and is put under 60 mg prednisone. He is now suffering from serious side effects like numbness of body parts, face, mood swings etc
quick comment because i'm a 21 yo diagnosed with with GPA earlier this years.my first symptoms were nosebleeds and congestion and eventually severe joint pain and swelling in all of my joints (excluding my spine). i also had the classic skin rash and kidney inflammation. i've been through 2 rounds of chemo and on steroids for 11 months. Today, my kidneys and sinuses are doing well, but I still deal with permanent joint and nerve damage.
Thanks!
My Nephew has been diagnosed approximately 3 yrs ago but today Aug 3, 2021 he has been diagnosed 3 weeks ago due to possible Stress but has come back in avengence!!!
This video and your vasculitis primer are exactly what I needed. Thank you.
Thanks for this very informational video I actually have Wagner's or otherwise known as microscopic granulomatosis with polyangiitis and this was very helpful to me thank you
I have this, found out 2 years ago. Now its starting to come back and i just don't think I'm strong enough to go through all that over again. I'm very seriously thinking about not getting the treatment this time and just giving up... This has ruined my life and now it's back. I think it has won
I have this as well, don't let it win. You never know the extent of what you'll have to go through. I have two sons and I hope that I have the strength to endure this again if it shows up. It's very nasty, I know.
My sister has this. I am so sorry.
I might have this.. blood test came back positive doing some more work up. How are you doing
I was diagnosed with this after blood work and biopsies. I refused treatments due to the financial burden it will cause on my wife shall I die as well as the major side effects. I'm 47. Just got everything squared away. Now waiting. Was given a 5-7.5 month expectancy. I'm on 7 months and 1 day. Currently in kidney failure, no hunger at all, rapid weight loss, intense pain.
@@daveyshealey723 How are you doing now?
Keep going. Woww very very simplified and clear . Your high light is with in short duration your completing a whole topic , great 👌👌👌
A video about congestive heart failure pathophysiology would be very helpful
Armando you are best.
Respect from Pakistan🇵🇰
Kya ye disease pakistanio ko bhi hai
I have recently found out I have this and this succinct video is very helpful.
thank you...from Bangladesh..... Plz make videos on surgical topics,surgical physiology.....
Problem with audio at 1:25
You are the best, thankyou so much man.
My friend my love passed away due to this. It was one week ago, she was 25.
Dang man, I know this is late, but my condolences. May she find peace wherever she is now!
Thanks again, keep up the great work.
Ive had this since 2014... And the shortness of breath has never really went away. Im so tired of it. Had to give up many things i loved because it was just too hard to do with this shortness of breath. I wish something would help.. been on antibiotics for years and been on ritux, methotrexate, and azothioprine.. Only prednisone ever seems to help the breathing, but that's a very temporary fix. Maybe a week of help..
Trying out Avacopan but it hasn't shown any signs of helping.... I'm really tired of this sickness and idk what I'm gonna do if this new meds don't do anything for me.
Hi, I have just recently been diagnosed with this, and I am wondering a bit about the avacopan treatment. Atm im on prednisolon and cutting about 10mgs every 2nd week, going to cut 5mgs when I reach 30mgs. They have applied for avacopan for me, but it is expensive so they have to decide if I am wourth it or not. What is your experience with going from prednisolon to avacopan, and is this something i should try and push harder on? Sorry if its personal, as I Said i was just diagnosed so im kinda new to this whole thing, and it kind of scares me a bit.
@@krisdroidrka3446 I'm Canadian so it was pretty easy for me to get it tbh. But for me personally, it didn't do much. I didn't feel much of a difference while I was on it, and then I started to get an allergic reaction on it.. so I had to stop.
But this is just my personal experience. Apparently it works better for other people, my doctor seemed optimistic about it when he brought it up at first. Idk if I'd write off the medication completely just from my experience. I was just allergic.
and my waegeners symptoms really focuses on my esophagus. Steroids is the only thing that helps me there.
But! Before when my symptoms were more widespread, Rituximab helped with those other symptoms! Have you tried this one?
Just found out a few months ago I have this consultant thinks had it for around a year maybe longer and I should be hospital but best not due to covid he thinks I am doing OK and not that worried all of this over the phone
And a good idea to be kept monitored from now on and not just left and forgotten about
lucky me
How are you doing? What tests did you do?
What about when it's in your brain? I have Wegener's GPA C ANCA. What happens when it becomes active again?
thank you
Very good!
How do I know I'm in the remission stage? I was diagnosed in August 2017 (initially they put me 6 of cyclophosphamide and then 3 of rituximab)
I beat this scourge through natural means: check out my amazing story. th-cam.com/video/awPbidyOKPo/w-d-xo.html
Why is a lung biopsy not used for diagnosis? Why would a high titer mean low disease activity?
Diagnosis can now actually be achieved by a blood test. No biopsy required
@@guscordingley8405 What blood test exactly? I'm facing these symptoms and doctors are in a search for diagnosis. :(
@@lullabygoodbye25 Full blood count, c-reactive protein, sed rate, ANCA.
I was diagnosed last year ,most of my septum bas corroded away ,I have s constant flow of mucous and the blood vessels swell burst bleed and get very sore ,it has started to swell on the outside of my nose when it bursts I'm left with a very sore nose and more of the septum gone.I have an appointment tomorrow with the doctor I'm not expecting good news after the last visit and what my options are so I'm scared,and can't have anyone with me I'm also disabled and have to use a wheelchair ,I will face it and listen to what he says and do whatever it is he has to do as I really can't live like this anymore it's debilitating and I am constantly in pain from sinus infections every three weeks ,I have had enough so if he can't do anything I won't be hanging around for much longer ,It will be a sign my time has come and bough out gracefully
May God grant you health ❤️ don’t give up
May God heal you.
Hey, don’t give up, how are you now?
@@theosenpai3621 ,Its still the same,thank you. But I have bigger things to worry about I was diagnosed with Brest cancer and in order to save my life I have to have a double mastectomy and lymph nodes removed from under my arms.
@@jackieguerin7812 hope you are much better now!
Thank you was diagnosed 1 ago. I have been on retuxinab as of now it’s working but I have been noticing shortness of breath, fatigue and pain and discomfort on my kidneys is that something I should be concerned about.
i m on retuximab too wat do u think about covid 19 and wegners should we take the retuximab i was due for retuximab on 2 april but my doctors say i have to wait one month till i can get medicated
I beat this scourge through natural means: check out my amazing story. th-cam.com/video/awPbidyOKPo/w-d-xo.html
@@yash678 how is your condition sir.
great, no problems so far, retuximab is great medicine
bless you!!!!
You simply are amazing...One Comment though. Please add Clinical Vignettes (as brain storming) to your videos so that it is interesting and memorable to your viewers esp. the the Doctors. After all, we see patients in Wards. THANKS SIR!!!
Thank you sir it was more informative
Tq
Vascular studies help correct?
This is very painful disease. I have it and it's affected major body organs
@@Pr0ph3cy-k5z mi esposo sufre de esta enfermedad, fue operado por los monjes tupyara de Brasil que realizan sanaciones a distancia, el siguió todas las recomendaciones que ellos nos dieron y a tenido una notable mejoría, si le interesa busque su página en Internet, yo no se la puedo enviar ya que en yutuber me la borran, pero busque la allí le indicaran como contactarlos y que hacer para resibir su ayuda que es totalmente gratuita.
Armando Hasudungan , I suggest changing the typography, some letters are hard to read. thanxs
Agree!
Dude, it’s his handwriting. He’s been writing this way for years.
Спасибо тебе мужик,просто кайф.будь здоров !
Is Wegeners hereditary?
Try say Granulomatosis with Polyangiitis when you can't breathe and have to talk at the sametime so people around you know what is going on. Very Hard TO DO!!! It's hard to pronounce when able to breath and speak properly let alone not able to breathe and gasping for your life. I didn't hear any reasons as to what can cause it or how to treat it except some meds. It would be nice to know what the root cause of it is or if there are a few causes and the solutions. Some of your big medicial jargon could have then been simplified to a common dictonary. It was distracting. I have been diagnosis with it and try to find as much info as I can. The anca learned already and then you went into Medicial jargon and I was like ok what does that mean and how its that connected to it all? That was info. not sure of it's relavance or importance to the condition. Confirmed what I knew about Anca.
Hasundgan
HOW DOES ONE HEAL FROM THIS OTHER THAN MEDICATION?
I’m still salty at the doctors that never did a biopsy during the inmuno-attack
👍👍
Hand written was better