Getting Diagnosed with GPA (Wegener's Disease)

[@AshleyFry4]

Thank you so much for making this video. I hope you’re doing well! I’m 34 and was just diagnosed with GPA after many blood tests, CT Scans, MRI, lung testing, and nose tissue biopsy. I am incredibly lucky to have had this diagnosed early by a Jefferson Health ENT in Philadelphia after a month of what I thought was a sinus infection with inflamed, sore and bleeding gums. My organs are healthy and this flare up is isolated to my sinuses. I had granulomas tissue growth in my nasal cavity. This is the earliest my team of doctors know of it getting diagnosed and I'm already responding positively to steroids. I’m on 60mg of prednisone and a steroid mouth rinse and steroid nose rinse. This is a very scary diagnosis, but I am grateful that it has been caught before damage was done.

[@SumayaMann]

I am having the same issue but no diagnosis yet and I am having eye pain really bad

[@NapkinsForDays]

im glad you talked about it homie, much love

[@Cobruz]

thanks bro! im Happy I did to

[@momomei8152]

Got the GPA diagnosis in 2019 at 16 years old and had 3 relapses since then. It took a month in hospital to diagnose me with it, since apparently the ANKA which are a primary indicator could not be detected in my blood. Living with it, especially during covid has been rough but manageable. Mentally it's definitely harder since you have to be in the clear that you have to take medication regularly and it's part of your life now. A thing I've learned during it is to try to go on with your life as much as possible. Don't let it get you down. And also another thing, since you're probably taking steroids for a long time get a bone density scan if your doctor doesn't tell you to. I got slight osteoporosis because of it and I had to go against it. So for everyone who reads it, keep your head up! :)

[@ChrisRI1000]

My wife just got diagnosed last week and she's in ICU fighting for her life. Unfortunately she had just had a surgery for an unrelated issue and the recovery was masking the warning signs. It took less than a day for her to go from what looked like a touch of pneumonia to a full collapse. One lung was fully involved the other was partially involved. Kidneys failed putting her into renal failure. All within a day. This disease can move at a lightening pace so if you have symptoms get to a doctor asap...the longer you wait the more damage and chances of survival go way down. I wish you good luck with this disease and thank you for making this important video.

[@Cobruz]

I'm sorry to hear to hear that about your wife. It can be super challenging and I've heard many stories of GPA and what it can do. I'm apart of the Facebook group full of people with Wegners. It's a pretty good group to ask questions and explain what may be going on. Its unfortunate that the doctors cannot find out what it may be right away due to its underlining factors such as fever, chest pain, nose bleeds, etc. I hope only the best for your wife and both of your future. Its a huge deal to have someone there for you while you go through this kinda thing. I'm super happy that my Mother came out when she did. The disease is very rapid and it's tough when docs can't pinpoint stuff right away as well. I wish the best of luck to your wife and yourself as well. Thank you for sharing! :)

[@ChrisRI1000]

@@Cobruz thank you for the well wishes and especially the tip on the group. I will join that one.

[@ya_boi_don-quavion710]

When he said there was no cure I'm not gonna lie I kinda teared up

[@Cobruz]

everything will be okay :)

[@GamerTigerBonsu]

Great information comrade Much respect ✊ I have ADD but keep being awesome You will reach greater heights I believe in you

[@Cobruz]

Thanks man!

[@classyphotogal]

This is the best video that I've found yet!! I want to Thank you so much for this video!! I pray, that you are still alive... I have GPA also. I can't take any of the medications that I need because of my lungs. So, I stay really sick because of this. I take rituxan infusions. Not enough, I can tell... Make more videos of GPA!! May God Bless you, Brother! Praying for you!

[@Cobruz]

I greatly appreciate the kind words. I am still alive I just don't post content on here as much, I took a break from videos to focus on streaming. I as well take the Rituxan infusions every 4-6 months myself. I call it my "life juice" because it helps me so much with pain and all sorts of discomfort. My Lungs were heavily impacted as well. Which the video explained I think ( I haven't seen my video in a very long time.) How often do you get the infusions?

[@classyphotogal]

@CobraDesigns its so great to hear you are doing well! I take them every 6 months. I've been really sick lately..

[@sivrxJ]

Its horrible to hear that you’re going through this Derek. I’ll keep you in my prayers, stay strong 🙏

[@Cobruz]

I appriciate it a hella ton Chris. I really do! I shall stay strong and continue with me head up at all times!! I hope you doing well man!

[@EdTek]

Hope it becomes more manageable man and it doesn't get you down too much

[@Cobruz]

i'm hoping so to man. Really hoping so. Imma just keep living my life to my fullest right now.

[@Bee-kt1fq]

Dude I remember when I first saw your channel in a minecraft livestream a long time ago, hope it’s not that dangerous and you get better

[@Cobruz]

Thanks dude I really appriciate it! Im giving it time

[@briansmith6306]

Geeez I thought I had it bad, took a full month to get diagnosed. 7 weeks of 75 mg prednisone, antibiotics, inhaler for lesions on lungs, and blood work was back to normal. I didn’t even want the retuxience but the dr said it’s the prednisone you are still a very sick 58 year old man. PR3 was super high so looks like a lifetime of biannual infusions and antibiotics. I was lucky because I was diagnosed by a team of folks at the Dartmouth Hitchcock Medical Center a month, after local hospital didn’t figure it out, rather quickly compared to a lot of folks. I will say this, I told the pulmonologist who referred me to Dartmouth, if you can’t make me better then send me to hospice. My CRP was 266

[@SkiisOW]

Damn bro I had no idea..mad respect for you and let me know if you need anything

[@Cobruz]

appriciate it my man! Thank you a hella ton dude.

[@rkerr9992]

Hi mate I have GPA was diagnosed in Nov15 had serious lung and kidney involvement along with the debilitating joint pain large weight loss and lethargy spent two weeks in icu,I’ve had the Chemo steroids and maintenance drugs fortunately know I’m totally drug free but have had two operations on my windpipe as it closed up I still have full check ups every three months and I work a 60hr week as a truck driver still have aches and pains good days and bad but mostly good this may show you that you can get a lot better keep safe 👍🏻

[@Cobruz]

hello there! im very happy that you have reached out! Ive always wondered with this, what it may be like when I transition back into working. Im currently still active duty in the military living at the Naval hospital and it hasn;t been too bad. I really do thank you for reaching out to me it means alot espically to hear someone else out there who has gone through similar things such as myself. Also I have a weird question that I can't get answered. im haveing random nightmares that are really effecting me mentally that cause me to forget what I was doing and sometimes I feel like im still dreaming. Ive talked with my main doctor about it but there just blamming the medicine I take. Have you had this before? It seems more frequent during My infusions (Rhetexumab) probably spelled that wrong. Thank you again!

[@rkerr9992]

@@Cobruz thanks for taking the time to read my reply the only thing I can relate to regarding the nightmares are I used to have really vivid dreams whilst on high dosage of Prednisone the devils Tic Tacs the dr used to call them I felt ready to return to work after about 5 months but because of some legality regarding my Truck drivers license I ended up off work for a whole year also had too have two ops for subglottic stenosis another bad effect of GPA lead a near normal life apart from real heavy work is a big no can do I was hoping to get Rituxan infusion to keep everything at bay but was told due to cost and the Azathioprine I was on was working I’d have to stop all meds till I was unwell then I could have the Rituxan I’ve been med free for two year now I was 44 when diagnosed was really fit ran 6miles every day than over a period of 6 months I went down hill shortness of breath,sinus trouble,loss of appetite,severe weight loss ,bad sweats,crippling joint pain that would make walking nearly impossible then the coughing up blood and blood and protein in the urine countless trips to the dr who were clueless said I had sinutitis ended up in ER at deaths door luckily had a consultant who had seen it once before now I’m a bit of a celeb at the hospital as I’m the only person the have with it plenty of students watching taking notes I know it’s a struggle and frustrating but trust me you will feel better time and knowing what’s too much are key if I didn’t have the Subglottic Stenosis I would be a lot better only really suffering from some aches and pains which are manageable one of the biggest things that piss me off are the constant you look great have an Instagram with the same name if you want to ask any questions or here is fine I did a lot of internet searching at the beginning of my journey found a few helpful sites as well

[@romowasbetterthanaikman3932]

I was diagnosed a few months ago. I finished Rutuxin treatment about a month ago and continual prednisone. My kidneys had stopped working. I have been on dialysis 3X a week for the last two months. My doctors aren’t optimistic about my regaining independent kidney function back. Did you have to do dialysis?

[@joannecoulter9065]

Hi from a fellow Wegener!!!

[@abixreal]

Damn thats rough, im just speechless.

[@Cobruz]

All good dude. Treatment isn't the worst in the world. It could be worse. It could also be better XD Thanks dawg

[@pump5366]

Wish you get better bro and stay safe

[@Cobruz]

Thanks dude! I will try my bestest! :)

[@ndnNomad]

Thanks for sharing

[@Cobruz]

Thanks man I appriciate it and miss ya man. im planning on going back to Japan after I get out in a few years! miss the good ol days.

[@ndnNomad]

@@Cobruz I’m thinking about going to Vietnam

[@Cobruz]

@@ndnNomad fo reals?

[@ndnNomad]

@@Cobruz I want to so bad

[@Mr-thunder.]

I have GPA I was diagnosed with it in 2020 I almost died lots of times from it but I am getting better now if you have any questions about it let me now bc the disease did everything it could to me. I am 22 years old just keep up with you appointments and rheumatologist or if you have vasculitis doctor don't miss any appointments or the consequences can be deadly bc it's a life threatening autoimmune disease.

[@romowasbetterthanaikman3932]

Did you have lung involvement?

[@sharmishthasharma5319]

What is the prognosis and life expectancy?

[@terrymohler2221]

I have gpa. April 1st I was told I have it.

[@captainhml3868]

I have both Wegener’s and Goodpasture’s . I was I diagnosed in 2020.

[@Cobruz]

Dang I just now saw this. yea sounds like were having similar times of diagnose.

[@brandonn0411]

I got diagnosed a little while back…I can’t take this shit anymore man I just wanna be healthy again

[@romowasbetterthanaikman3932]

I understand. I was diagnosed a few months ago. It’s as much a mental battle as physical. Hoping for the best for you.

[@brandonn0411]

@@romowasbetterthanaikman3932 thank you 🙏🏻… you too man

[@ClassyCameraChick]

how can we locate you to follow you on other sites?

[@romowasbetterthanaikman3932]

I was diagnosed in October after my kidneys stopped functioning. I completed Rutuxin treatment about a month ago, prednisone daily for the last two months, and unfortunately dialysis 3X a week. I was doing well in my recovery, but still doing dialysis 3X a week. Landed in the hospital with diverticulitis out of nowhere. Over the last two weeks I’ve struggled with water retention, which I wasn’t before. Doctors aren’t optimistic about my retaining independent kidney function. Any thoughts, advice, or experience anyone could share to help me would be greatly appreciated. Not much info out there.

[@Cobruz]

I wish I could think of something in your situation involving the kidneys but I do not know too much in that department, I had kidney problems but not to the degree that you are talking about. From personal experience I was bleeding internally quite a bit Lungs inflamed i ended up getting pretty sick the first 2 years of having it and this 3rd year having it has improved A LOT! I have heard of some people going into remission very quickly and some cases like myself going into remission rather late. The thing with GPA is, that its super random with everybody. I recommend joining in on the Facebook group they have covering GPA Wegener's disease.

[@gardenianajar830]

My Teenage boy was luckely diagnosed right before the Covid Lockdown!! Becouse he was immediately quarantined...

[@Mr-thunder.]

Your son has it how old is he

[@Cobruz]

Covid was no joke especially for the auto immune. I ended up living in that hospital for a little over 2 years before getting out and going back home. That does have an effect due to me being in the military though. I hope all is well now! I apologize for not being active on this channel.

[@captainhml3868]

It hurts to breathe in deeply. So it must be the scar tissue from my large mass in my lung. I am in remission now, but I still have that residual pain.

[@Cobruz]

yes. My doctor explained the same thing to me the scars scratch when u breathe deeply and it hurts. Sometimes it continues to hurt for up to a day. Hell I just did a pulmonary breathing test 2 days ago and I have felt it since then. Ive had this for 3 years now and it still hurts. Hell a lot of things involving heaving liftin hurts my lungs. The best thing I have got for my lung pain is albuterol inhalers there great for the lungs!

[@AdultTim]

We love you bro

[@Cobruz]

I love you too ;)

[@Mr-thunder.]

If you don't mind me asking do you know what caused your autoimmune disease.? I know what caused mine I have Wagner GPA

[@Cobruz]

unfortunately I do not know what caused me getting GPA, the doctors could not find a reason. The only clues I have is if it was from when I was exposed to a few chemicals and such while on a ship while I was in the Navy.

[@micaelaspencer2436]

Hi dad

[@Cobruz]

;)

[@barytonb47]

Let me know if there is anything I can do for you brother much love bro

[@Cobruz]

Thanks bruh I appriciate it a hella ton. im hoping to come home hopefully in time. not sure when tho. we will play some B ball and go to Sheetz my man!

[@SumKidFrumSchool92]

ilysm cutie

[@ivanlovoochoa4209]

Wtf

[@Cobruz]

;)

[@evanplayz4998]

Nice

[@Cobruz]

? What do you mean?

[@evanplayz4998]

@@Cobruz I'm joking man

[@ya_boi_don-quavion710]

Sup cobra how u been

[@Cobruz]

better now

[@Manndoodle]

E

[@evanplayz4998]

First

[@pump5366]

Bro are you serious?

[@BorderCollieMom101]

My husband died two days ago from this. Terrible disease

[@Cobruz]

@@BorderCollieMom101 I am so sorry to hear that, I deeply apologize for not responding earlier. People have messed with me before saying jokes about that kinda stuff and I was not sure if you were serious or joking. I hope you are doing well and I wish only the best for your future; if you would like to tell me what it was like from your perspective and what he may gone through. Feel no pressure on telling me anything. Its been rough and has been getting worse for me over time. Somedays are a bit better then others but pain is a norm at this point.