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Thread: Third Vaccine

  1. #31
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    Default Re: Third Vaccine

    Were you in remission before the jab?

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    Default Re: Third Vaccine

    Yes, I've been in remission for quite some time now. My biggest issues now are fibromyalgia and the paralyzed diaphragm. The fibro is what makes me ache all the time, but its the paralyzed diaphragm (only the right side) that will cause problems if I get covid.

    Wegner's took out my pituitary gland and then, after about 3 or 4 years, went into remission. Not having a pituitary causes a number of issues, but once the drugs are balanced out, its not a huge problem. You can read about it here.... granulomatous hypophysitis GRH is pretty rare with an incidence of 1 in 9 million per year. GH due to GPA is even more rare. I was diagnosed as #24.

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    Default Re: Third Vaccine

    Quote Originally Posted by vdub View Post
    Yes, I've been in remission for quite some time now. My biggest issues now are fibromyalgia and the paralyzed diaphragm. The fibro is what makes me ache all the time, but its the paralyzed diaphragm (only the right side) that will cause problems if I get covid.

    Wegner's took out my pituitary gland and then, after about 3 or 4 years, went into remission. Not having a pituitary causes a number of issues, but once the drugs are balanced out, its not a huge problem. You can read about it here.... granulomatous hypophysitis GRH is pretty rare with an incidence of 1 in 9 million per year. GH due to GPA is even more rare. I was diagnosed as #24.
    Wow.. before my diagnosis I had some issues with my eyes. My main issue was inflammation of my aorta. I was told the combo of that and wegs was rare, but definitely not as rare as yours. How long was it before you were diagnosed?

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    Default Re: Third Vaccine

    I had symptoms for about 2 years. At the time prior to dx, we were rv'ing around the country. Wegs hit my sinuses first and I had many appoints at various military bases around the country and they would just say "infection" and give me a handful of antibiotics. We were at the Whitesands Proving Grounds in March 2010 and I came down with a blinding headache, so went to the Army ER. It was just a clinic, so they put in an ambulance and sent me to Las Cruces. I was going in out of consciousness the entire time, but I do remember it was the roughest damn ride I had ever had. Army ambulances aren't exactly made for comfort.

    I was at the Las Cruces hospital for about 24 hrs, but only remember bits and pieces. They put me on high doses of steroids, probably dex, and I was in pretty decent shape. They gave me a handful of pred and said "go home". It was 1,400 miles to home and I was pulling a 32' 5th-wheel. Normally, we only did about 300 miles a day when pulling the rv, but with the pred, we made the trip 2 and half days.

    I did just fine for the first couple weeks at home and then the pred ran out and I ended up in the ER again. This time, they did an MRI and found the mass on my pituitary. I had brain surgery the next day and they removed the pituitary. I remained in ICU for the next week or so. The biopsy on the mass showed it was a granuloma and they dx'ed me with GPA.

    One of the reasons we were at Whitesands was to see Light Warrior who was an active forum member at the time. She was a nurse at the hospital where I was eventually admitted. Unfortunately, Light Warrior died in 2013 from complications due to Wegs.

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    Default Re: Third Vaccine

    Wow! Thatís an amazing story.


    Sent from my iPhone using Tapatalk

  6. #36
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    Default Re: Third Vaccine

    I had a conversation with a rheumatologist from my group at Walter Reed yesterday with regard to getting the booster vaccine. She basically told me that there are a lot of other sub-groups of T and B cells that affect antibody development besides the specific group that they look for and that there really is no data for them to go by with regard to effectiveness of the vaccines and booster vaccine as it pertains to GPA patients treated with Rituximab. She recommended that when I get past the upper respiratory infection I'm currently fighting and my body has time to recover that I should get the booster and then wait about a month to do my next infusion which as due next month. I will tell you that it was the best explanation from any doctor I've talked to about this subject and the most honest feedback I've received. So I will get the third jab as soon as I'm "healthy" enough to get it. Not exactly confident it will do anything for me but there's a chance.

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    Default Re: Third Vaccine

    Not exactly confident it will do anything for me but there's a chance.
    That's the way I looked at it. Kind of like an atheist getting last rights from a priest -- can't hurt none. :-)

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  9. #38
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    Default Re: Third Vaccine

    Interesting analogy


    Sent from my iPhone using Tapatalk

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    Default Re: Third Vaccine

    Quote Originally Posted by [email protected]$0N View Post
    Wow.. before my diagnosis I had some issues with my eyes. My main issue was inflammation of my aorta. I was told the combo of that and wegs was rare, but definitely not as rare as yours. How long was it before you were diagnosed?
    I went blind from WG before I was diagnosed. A really good ophthalmologist was able to restore my sight. Unfortunately a really bad infectious disease doctor misdiagnosed me with West Nile Virus and it would be weeks before the accurate WG diagnosis by a Pulmonologist who biopsied my lungs. He had an interesting bedside manner or lack thereof and my wife referred to him as Dr House every time he came to visit me.

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  13. #40
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    Default Re: Third Vaccine

    From what I am reading today protection from vaccination starts to wane at 3 months and provides little protection after 6 months, hence the need for boosters.
    Knowledge is power! Wisdom is using it to make good decisions!

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