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Thread: Death from meds?

  1. #21
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    Quote Originally Posted by lovetoswim View Post
    Hi Marta, I am very interested in hearing about other people's experiences with WG. Since you are an avid athlete like myself, the hardest part for me is taking these awful drugs. The only drug I am addicted to is caffeine and my glass of red wine with dinner every evening. I hope I don't have to give up my wine, it's the only thing that relaxes me. Exercise works, of course, but only if I exercise all day, and that's not possible at my age.

    I've always suffered from anxiety and used to have panic attacks. I had to give in and am on Lexapro (the lowest dose) and I think it really only works b/c I mentally believe it works. I went off Lexapro years ago and within weeks, suffered an onset of vertigo that lasted almost a year. I couldn't swim, walk at night, use an electric toothbrush, and felt awful. The only thing I could do was walk.

    You've certainly become an amazing advocate and done some incredible work to further knowledge of WG. I can't wait to read your story.

    I was going to get my pneumonia shot, now that I feel so good. Perhaps I'll wait until my Un. of Penn appoint next week. Daily, I tell myself this is a mistake, b/c I feel so good now.

    Am I correct that your first serious onset followed a vaccine?
    Hi Irene,

    Here's a link to a few Weggie stories going by a similar outline to follow that we were thinking would make a good book of experiences (I still plan on using them later on.) Weggies Unite: Other Weggie Stories

    I know what you mean about the feeling of having lost all you've kind of felt like you were working for by being healthy, active, and eating the right stuff all your life. I've personally always used exercise for the fun factor and have gotten the strength as an accidental side effect. To me the kick in the head was missing out on my 'fun' by not being able to be physical in the great outdoors. I went back to skiing pretty quickly after diagnosis, since the lifts help on the way up and gravity helps on the way down, turning and stopping don't suck up that much energy. Now I've got the new e-assist mountain bike, and can have fun with my hubby on the mountain bike trails - again. I can't say in words how happy and thrilled I am to get to do that again. I too have a 'slight' caffeine addiction. When I first got on the cocktail after diagnosis, I was told by the pharmacist that I can't drink coffee, so I didn't for more than a half a year. I learned on this forum that this was not the case and after some further research, I went back to my old friend, caffeine.

    I am only an 'advocate' because it's my coping mechanism. I feel like the gross stuff needs to be negated by something positive for it to be worth the experience, so I do stuff to negate the grossness that is Wegener's. It also forces me to focus my attention on positive rather than negative. I know I have a personality flaw that gnaws on me if I complain about something and don't put the effort into trying to come up with a solution rather than just complain. I know it drives people around me nuts, but they're kind and humour me. ha ha.

    I do believe that the H1N1 vaccine triggered my onset of WG. I've done considerable research on this, and it seems to support my hypothesis. I've also got some solid docs backing up my theory. I hadn't made the connection at the getgo, but after a flare (only days after I got a flu shot 7 months after diagnosis) it was Sangye's help and others on this forum that helped me initially connect the dots, and then I started to research the possibility that this was the case. The evidence is strong that this was the case. So I have an aversion to vaccines, but this is my experience and does not reflect a communal experience in any way. We all have our own triggers, and this happened to be mine. It's just worth a question (if you talk about risk-benefit) if you have a disease where the immune system is 'confused' is it the best idea to play with subcutaneous concoctions that are designed to mess around with your immune system. That's my stance, and I don't suggest anyone follow it and make their decisions based on their own experience. I know how divisive the vaccine question can get, and I'm not at all interested in starting a debate on this.

  2. #22
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    Wow, I've read several posts of people diagnosed that were considered health conscious...same for me. A year or so prior to my horrible diagnosis experience, I ate very little sugar, very little gluten, mostly whole foods, and led an active lifestyle. I was also really angry and frustrated after I made it through the initial diagnosis and 31 day hospital stay. I finally came to the point that I realized...maybe my healthy lifestyle helped me get through it. My doctors weren't sure I was going to make it. Anyway, I hear what you are saying about the vaccines. Have always followed the controversy with interest. But, for now...I do what my doctors say. I got the flu shot followed by the pneumonia shot. I just pray a lot.

  3. #23
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    I've been putting off getting the pneumonia shot. My appt with the Penn rheumy is next week. i will learn more at that time.

  4. #24
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    Yes, it's a big blow to go from being robustly healthy to having a chronic illness. Psychologically it's quite an adjustment. It seems especially "unfair" to be struck with something like this out of the blue when you take pride in leading a healthy life.

    (p.s., I got all the recommended vaccines: flu, pneumonia, and shingles)

  5. #25
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    Wow! You got a shingles shot? I thought we couldn't get that since it is a live virus.

    Sent from my SM-T800 using Tapatalk
    ----Arleta




  6. #26
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    [QUOTE=Alaskatom;110951]Yes, it's a big blow to go from being robustly healthy to having a chronic illness. Psychologically it's quite an adjustment. It seems especially "unfair" to be struck with something like this out of the blue when you take pride in leading a healthy life.

    (p.s., I got all the recommended vaccines: flu, pneumonia, and shingles)[/QUOTE

    Alaskatom, well put. It's a blow to my ego, I must admit. I've done all I can to live a long and healthy life (as long as nature or violence don't occur), never expected this.

  7. #27
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    Marta, those are such emotional stories from Other Weggies. Very inspiring and encouraging. Thank you again!

  8. #28
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    Quote Originally Posted by SophiasMom View Post
    Wow, I've read several posts of people diagnosed that were considered health conscious...same for me. A year or so prior to my horrible diagnosis experience, I ate very little sugar, very little gluten, mostly whole foods, and led an active lifestyle. I was also really angry and frustrated after I made it through the initial diagnosis and 31 day hospital stay. I finally came to the point that I realized...maybe my healthy lifestyle helped me get through it. My doctors weren't sure I was going to make it. Anyway, I hear what you are saying about the vaccines. Have always followed the controversy with interest. But, for now...I do what my doctors say. I got the flu shot followed by the pneumonia shot. I just pray a lot.
    Hi SophiasMom, I sent you a private message.

  9. #29
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    Possibly it depends on extent of disease and what treatment you are undergoing. I was told to get the shingles vaccine after I was below 20mg of prednisone. Generally they do not give the vaccine for folks under 60, but it was prescribed for me specifically because I am immune compromised, and thus more susceptible to shingles than the general population.

    btw I just did a search and confirmed that the vaccine (even though it is "live") is considered safe for those on lower doses of steroids and MTX. I'm sure this varies by patient, physician, and treatment plan.

  10. #30
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    Thanks for the info. I will check with my rheumi!

    Sent from my SM-T800 using Tapatalk
    ----Arleta




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