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Thread: COVID 19 and Wegener's - musings

  1. #1
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    Default COVID 19 and Wegener's - musings

    Hi y'all,

    It's been a while. Ready for another LOOOONG Marta post? LOL
    Well here it comes.

    Needless to say, I'm sure we're all thinking about this new world order (C-19) and how it relates to OUR old world order (WG).
    Man am I seeing a ton of parallels between the two, the more I hear about the symptoms (and post mortem) of Covid19 patients, the more I think that WG, and Covid 19 were designed together in some other worldly lab and this also gives me some ideas on the management of the issues from our perspective.

    I. Am. NOT. A. Doctor.
    All of this is just me sitting at home and philosophizing in my pea brain.
    What I write is not in any way intended as advice, or anything of the sort, just fodder for thought.

    Point 1: The similarities

    So C-19 attacks the lungs. We all know that. Same with WG. One of the symptoms they're telling people to watch out for, is loss of sense of smell and taste. I went through at least three years with that particular symptom. So we know C-19 is also hitting the sinuses. A lot of people who have passed from C-19 have also shown to have renal failure as one of the final symptoms, and found post mortem. Does this sound familiar to anyone on this forum? I'm sure the answer is yes.

    Point 2: The actual killer

    With WG, it is our immune system attacking healthy tissue that is the threat of killing us. In C-19, it's the immune system attacking the virus (who likes the same areas that our WG immune system has already had ample practice on). It's not he virus killing people, it's the immune response to the virus. That immune response is the same immune response that has threatened our lives in the past. The exact same immune response, in the exact same areas. It is the immune system creating extra phlegm and mucous and inflammation in the lungs that is keeping people from getting enough oxygen (I've been hanging at high 80's - low 90's oxygen saturation since diagnosis in 2010). It's the inflammation in the kidneys that make them shut down and not be able to filter.

    Point 3: Precedent

    How do we deal with the idea that our immune system can potentially kill us? We do that by dealing with the symptoms (pred) and trying to mellow out the immune response (the physiological equivalent to trying to flatten the curve socially). We take immune suppressants so that an overblown response by our immune system doesn't shut down the whole operation. By taking immune suppressants and steroids, we are essentially flattening the curve internally, and allowing the body not to get overburdened with the response. It makes me think about how my body has handled flus and colds in the last ten years while on immune suppressants. If I do catch something going around, it takes longer for my body to react, it takes longer for the viral infection to go through it's course, but it's not as harsh as it would be without immune suppressants. I see a parallel both socially and physiologically.

    There isn't much we as humans can do about a viral infection. We haven't figured viruses out yet. All we can do, is let it run its course, and mitigate the symptoms keeping them from being deadly. In my mind, I've decided what I will do if I get hit (although I fear that this might be a nasty one to catch, I also in the back of my mind have a hope that we're actually trained and ready to go on this fight moreso than others... not sure which way to go, lol). If I get it, I will continue my Imuran, my Dapsone (PCP pneumonia deterrent) and I'll probably take some pred (I'm not on it now, but I think it would be a good one to take, as it decreases inflammation and it's inflammation that kills) I will (am) also supporting my immune system with Vitamin C, D, Oregano oil, Propolis, and Sambucol. That way (in my mind) I'm taking precautions (aside from social distancing - which I'm a pro at given the last ten years of WG) to keep any stray virus from taking hold in my body. Lots of snot rockets too - all you Weggies know the power of the snot rocket. Ha ha ha.

    Point 4: We're number 1

    In my usual Pollyanna fashion, I'd like to suggest we're the lucky ones. We've already gone through the panic, and fear that I see in people's faces on the news. We've done this for a while. We are the pros right now, despite being the vulnerable. This is our Olympics. Our exam time. We can help people who are truly panicked and give them peace of mind. I've gotten off social media (again) and I'm so glad I'm not on there as it's super gross right now, so maybe stay away from the negative nini platforms, but know that you've got this. Stay safe, do what you've been doing all along, and know that you're practiced in keeping safe and are miles ahead of the rest of the world.

    Peace y'all.... thinking of you all, and sending you all 'safety jujus'.

    Marta
    Last edited by marta; 04-03-2020 at 05:08 AM.

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    Default Re: COVID 19 and Wegener's - musings

    Hi Marta,

    Its good to hear what I have been thinking. The first time I read about the patients immune system attacking the lungs and other areas in the covid 19 cases, I thought wow!!! this is very similar to what a lot of us wegies have been through, hopefully we can all ride out this storm front, and all come out the other side.

    Every day you wake up is a good day, some are just better than others.

    Stay Safe.

    Woz....

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    Default Re: COVID 19 and Wegener's - musings

    I just got a great article sent to me by Geoff via Sam (thanks you two).
    It talks about this very thing. Much much more articulate than my blabbing.

    https://www.nytimes.com/2020/04/01/h...ne-system.html

    So to bring it all back to us.... we've got this.
    Stay safe everyone, and keep taking your meds.

    m

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    Default Re: COVID 19 and Wegener's - musings

    Is this drug ever used in treatment of GPA? tocilizumab

    massive steroids are usually used but are there any other similarities in how Covid 19 and GPA flares are usually treated?
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: COVID 19 and Wegener's - musings

    Quote Originally Posted by marta View Post
    I just got a great article sent to me by Geoff via Sam (thanks you two).
    It talks about this very thing. Much much more articulate than my blabbing.

    https://www.nytimes.com/2020/04/01/h...ne-system.html

    So to bring it all back to us.... we've got this.
    Stay safe everyone, and keep taking your meds.

    m
    Don't be so hard on your blabbering: it was quite entertaining (and informative)

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    Default Re: COVID 19 and vasculitis study

    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: COVID 19 and Wegener's - musings

    Thanks drz, I just signed up.

    Also, I found this pre-publication out for peer review which I imagine was the source for the article I linked above, but I sent it to my doc in Edmonton, and she ended up missing a meeting because she was so into the data and found it so fascinating.
    He he... I made my doc miss a meeting.

    http://www.sah.org.ar/pdf/covid-19/0...publishing.pdf

    As I said, I think we're the lucky ones in this particular scenario.
    I've been more afraid of picking up well understood bacterial and viral infections than I am of this.
    It's quite bizarre actually, how my brain is processing this.

    Hope you're all faring well, and maybe this gives you a little extra peace of mind.
    Stay well, stay healthy and don't forget to laugh. Find reasons to have full belly laughs - the most healing feeling ever.

    Peace,
    marta

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    Default Re: COVID 19 and Vaculitis

    I just signed up for webinar on
    What We Know and Don't Know: Vasculitis and COVID-19
    Description Join our vasculitis experts in a discussion about vasculitis, COVID-19 and the immune-suppressed patient. Drs. Kevin Byram, Anisha Dua, Ulrich Specks, and Jason Springer will provide an overview and answer as many questions as possible from the attendees.

    Time May 23, 2020 09:00 AM in Central Time (US and Canada)

    Since I think this might have some useful info. I stopped going to see Specks for followup in their GPA study and wonder how COVID-19 and GPA treatment meds might interact or what special risks we have and treatment options that might help us.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: COVID 19 and Vasculitis Webinar

    How many watched the webinar? Lot of info presented but consensus seemed to be we don't know enough yet about most of the issues. Use common sense to stay safe and stay sane.
    I Liked Spechs statement that we know our body best and if some thing is off or different we should seek medical help. He did recommend taking your temp and O2 levels twice a day and to seek help if our O2 levels start dropping or if we get a higher temp since both are likely signs of COVID-19. I am going to order a no touch thermometer. We have an instant touch one in our lobby to screen visitors.
    Last edited by drz; 05-24-2020 at 07:15 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: COVID 19 and Wegener's - musings

    I watched the webinar and got the same impressions. Enjoyed it, more data needed.


    Sent from my iPhone using Tapatalk

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