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    Re: Cyclophosphamide (Cytoxan)

    When I had CTX infusions they would give me pills for the nausea, and a couple of pill to take home for the next time. Once they forgot to give pills home, and I was feelign quite nauseous for the...
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    Re: Bad Smell and taste During GPA

    GPA started with me in the nose, and it got completely blocked - couldn't taste or smell almost anything back then.

    For a very long time I felt my taste was off - like there was this sparkling...
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    Re: Losing patience / covid

    Over here in Finland the recommendation is to get the vaccine at the latest 1 month before the RTX infusion, or 6 months after the infusion. Had my fouth vaccinne in May. I guess we are now being...
  4. Thread: Hereditary?

    by Wegetarian
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    Re: Hereditary?

    I think they said in this one book which I read that it was more likely with close family members, like 500:1 odds. While I think otherwise the odds would be 50.000:1. So that would mean that...
  5. Wow, sorry to hear you got hit so hard by Wegs &...

    Wow, sorry to hear you got hit so hard by Wegs & cancer. You sound like strong person, which is awesome. Even though it really sucks to get Wegs, it does help us to better understand our inner...
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    Hey mishb, yeah - no problem with the sick...

    Hey mishb,

    yeah - no problem with the sick leave. Was a bit worried though, as I was just doing some training for the new job - and hadn't started working in a project yet when I had to tell them...
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    Thanks :) Yeah, third times the charm... So...

    Thanks :)

    Yeah, third times the charm... So this is like routine now anyway :D Besides, I was probably in the best shape of my life before I got this new flare - so hopefully I will be in a bit of...
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    Been meaning to come by for so long... So much...

    Been meaning to come by for so long... So much has happened. I guess I could give you guys a brief recap.

    So my relationship with the mother of my children hadn't been all that good for a long...
  9. Yeah, they are all ANCA-associated vasculites....

    Yeah, they are all ANCA-associated vasculites. They do differ in how they way they harm us, although like MPA and GPA can both affect the kidney. The markers are different even though they are all...
  10. Well its been an exotic experience for sure.. I...

    Well its been an exotic experience for sure.. I do think the posts about it building character and empathy are the big ones. I couldn't really understand sick people the same way I do now, and also...
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    Whats up guys? Haven't updated this in a...

    Whats up guys?

    Haven't updated this in a while, been feeling good and when I do I rarely check up on Weg stuff. Although I've been thinking about you guys from time to time and figured I should...
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    Mike, here are a couple of articles discussing...

    Mike, here are a couple of articles discussing the link between relapses and staph infections if you are interested.
    http://annals.org/article.aspx?articleid=706976
    ...
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    I got the book recently, a long with a friendly...

    I got the book recently, a long with a friendly hand written letter. Haven't finished the book, but it appeared to be well written have some decent information. Here is a picture of the book as they...
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    [QUOTE=Pierre42;99645] 1) genetic...

    [QUOTE=Pierre42;99645]
    1) genetic predisposition/QUOTE]
    I think that if you don't have the needed genes you can't get wegs. I assume that there are probably more weg's in my tiny country than in...
  15. Thanks for posting. I guess I'll join. In general...

    Thanks for posting. I guess I'll join. In general I usually don't want my data to be put in any databases, but this might be an exception since its very likely used for my benefit instead of some...
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    No, they didn't charge anything and said they...

    No, they didn't charge anything and said they were happy to send me a copy. Still, even though I'm not paying for the postage doesn't mean its free... I'd rather have them use the money for doing...
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    Really? i thought it certainly increased ones...

    Really? i thought it certainly increased ones risks for getting cancer. If I understood correctly it may also cause some spinal poisoning if you don't have the genes working that break down the drug....
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    Thanks for the info! Sent them an email, and...

    Thanks for the info!

    Sent them an email, and asked if they have an electronic version available, as shipping costs over here would probably be quite a lot.

    Was really surprised to not see...
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    For some local info you could check out the links...

    For some local info you could check out the links at Vasculitis UK - The UK's Leading Vasculitis Charity they seem to be quite active.

    This charity seems to organize a lot of stuff, I think they...
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    Happy birthday annekat! :hug3: I hope you like...

    Happy birthday annekat! :hug3:

    I hope you like kittens :) Here are some for you


    https://www.youtube.com/watch?v=Imeq3GeRttw
  21. Thanks for posting. A very interesting list. Had...

    Thanks for posting. A very interesting list. Had no idea these meds were sold in so large quantities. Assumed it could be so expensive since its not used much, but guess they just charge as much as...
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    Are there some reputable sources that say...

    Are there some reputable sources that say colloidal silver would be useful? Hadn't heard about it before, and by googling just looked at this quackwatch page Colloidal Silver: Risk Without Benefit
    ...
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    Ok, I think it was Uromitexan. Holy moly!...

    Ok, I think it was Uromitexan.



    Holy moly! I'll never understand the weirdness of the US health care pricing... Looking at the price list it seems to cost 15-25 euros / tablet but I suppose the...
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    A necklace for all the ladies here :)

    http://i.imgur.com/a5jOqQ0.jpg

    Also read someone used actual pills for jewelry:
    Cancer Survivor Makes Jewelry Out of Pills to Pay Off Medical Debt | Amusing Planet
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    The one they gave me had a much more complicated...

    The one they gave me had a much more complicated name, but its supposed to do the same thing :)
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