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Thread: Death from meds?

  1. #11
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    Well, it is good that Imuran is working for you, Arleta, since it isn't considered one of the stronger "heavy hitters", which seem to carry more risks. You had a harder time of it than I did, but I also took CTX, and have now been on Methotrexate for a few years, and it seems to work for me, along with pred. I'm just as glad, so far, not to have to go the RTX route, even though so many seem to do well on it.

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    Anne, dx'ed April 2011

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    Arieta, you certainly were hit hard. Was that your first experience with Weg-related issues? I know how distressed you must feel, preparing to enjoy the next phase of life - retirement with your husband. Hopefully, your quality of life will resume. From all the supportive posts I've read here, it seems to be something we can look forward to. I am still working part time, and summer is finally approaching, a time when tennis, swimming, and beach trips are what we northerners live for. The thought of being stuck in the house sick from medications gives me such anxiety. OTOH, the onset you had certainly makes one realize how important a diagnosis and treatment is to get back to our life. Hope you are feeling better soon.

  3. #13
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    Irene, from the sound of how good you feel, even if you are put on some moderate schedule of meds, I doubt you will be stuck in the house and​ away from the sun. The meds can be gotten used to, and it might not take long. When I was really sick, I think WG itself made me feel worse than the meds. Once I felt better and was out and about, I'd pretty well gotten used to the meds. Just take it one day at a time.

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    Anne, dx'ed April 2011

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    I was actually diagnosed 8 years ago. At this time I am doing pretty well, all things considered. I have some permanent damage from the bloodclots which affect my legs (swelling) and other things that manifest if I overdo it...like shopping, etc., but I really feel very thankful considering what it could be. I just have to pace myself. Thanks for your concern!

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    ----Arleta




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    Hey Anne, my post sounded so "immature" complaining about missing the summer. I think what has me the most upset is that we only have a few months to enjoy life outside and I hate the thought of starting these meds now. I also have always lived every day to the fullest, exercising at least 2 hours a day for the last 30 years, eating well, keeping on top of my health. It's ironic. I realize from some of these stories that not taking the med could be much worse.

  6. #16
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    Not immature, a legitimate concern... We all need the sun! I think after talking to the rheumy, you'll feel more encouraged. Everyone handles the meds a little differently. Maybe you'll just get a small dose, if any, since you aren't currently having symptoms of active disease. Maybe she'll just want to keep an eye on you in case things flare up again.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  7. #17
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    Hi Irene,

    I'm chirping in. I totally understand your frustration. I too have lived a very healthy lifestyle, everything I eat, I make from scratch, lots of outdoors, lots of exercise, and bam, Wegener's. I was very upset about it at the onset. Funnily enough, I have been asked if I'd change it if I could, and my answer is no. I have learned so much about myself, about life, and have gained friends I would never have met without WG, so it's all perspective.

    I get the meds thing. I think it's a very fine line. The risk-benefit assessment with Wegs is a difficult one. The heavy guns, as Anne called them, Rituxin, and Cytoxin, are the more dangerous ones as they render us susceptible to other agents that can off us. A lot of the celebs that have died as a result of 'complications' of Autoimmune Disease go because the drugs create their own set of problems. I know Al that was on here, passed from sepsis, a fear he held onto strongly, due to the compromised immune system. The issue is that without treatment, the disease will most likely get you, with treatment, you know the things you have to be careful with and you can control the element of danger more tightly than letting Wegener's roam freely through your body. The trick is to get a good doctor who gets it. Another potential killer is either not enough treatment or too much treatment, so I think your destination and your new doctor are a combination that puts you squarely on top of the best outcome pyramid.

    Time and being involved with the treatment, learning as much as you can, and being vigilant and self assured is the key to success with this disease. In no time, you'll know more about this disease than most general practitioners, and that's kind of cool. I go into my GP's now and just tell them what I need, we have a good visit, and carry on.

    Best of luck in this journey. It's certainly not a boring one. And I can guarantee you'll come out of it many brain neurons richer.

    marta

  8. #18
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    Hi Marta. Thanks for your encouraging words. I think you are a much better person that I, b/c I can't imagine ever preferring any of these awful autoimmune diseases over a normal, healthy life. I understand the dilemma with meds vs. just taking a chance and hoping that one doesn't have a life threatening onset. I hope I don't have to make that decision. how did you learn you had Wegs? What meds were/are you on?

  9. #19
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    Hi again,

    I'm no better than anyone, I just have the benefit of time on my side. I've just had it for a longer time and have gotten past the gross stage of "holy crap, I've got what???", to actually spending some high quality time with people I've met on this forum, to experiencing starting a foundation because of this, and having the opportunity of helping people I've never met, to getting a whole town wearing PJ's for at least 5 years to raise awareness and unite in the name of something worthwhile, to getting a TV show to come to my home town and do their whole 3 hour live show in PJ's talking about autoimmune disease while much of the town participated, to talk radio, to being on the news to raise awareness, to getting published in a medical journal with an amazing doctor I wouldn't have ever met otherwise, to becoming a patient who feels on equal ground as the physicians they see.... there has been so many cool things that have come out of this for me in the last seven years. I have lost some of my strength, but I've gained so much more in return. The first year kind of sucks. But it's only a short period of time relative to the rest of your life.

    One day, when you get past this, you too might feel the same. Who knows what the future holds. Just try and find something beautiful in each day and it might lessen the blow of WG.

    I was on cytoxin for one year, was about to go on methotrexate as a maintenance but never did. I had a flare (vaccine induced, my onset was triggered by the H1N1 vaccine too) and had to switch docs in the midst of it as my old rheumy completely gave up on me and left me hanging. I found my current doctor who is a vasculitis specialist and in my eyes the most amazing doctor on planet earth, ha ha, slightly biased, and then she got me on RTX. I've had a total of three RTX treatments since 2011, last one being last June (2016) and I use Imuran as a maintenance. I'm also allergic to Bactrim, so I take Dapsone to prevent PCP pneumonia from settling in. Also pred of course, and then some other stuff to offset pred side effects when I was on the high doses. I'm now off pred (about two/three weeks now) and just taking imuran, dapsone, and blood thinners, as I got pulmonary embolism(s) on my last flare a year ago.

    Here's how it all started for me if you're interested. Weggies Unite: How it all started
    I have a problem saying things succinctly and tend to babble on, sorry.

  10. #20
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    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?

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