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Thread: Your Experience with Wegener's

  1. #11
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    I wonder if talking to WG specialists who treat many patients would yield more comprehensive results. But you apparently tried that and they referred you to us. My case of WG is pretty straightforward, and typical of many, but every case seems to be a little different and WG may manifest in many ways in varying degrees of severity. You probably already know that. It makes me very tired to think about going over the details and timeline of my WG experience AGAIN. There are more interesting cases than mine, and a lot of info can be found by searching or browsing the archives. I do hope that someone has the energy and desire to share with you via private message. Perhaps some of us would be more willing to answer specific questions than to go over our whole case history.
    Anne, dx'ed April 2011

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    Thanks for the responses, guys. As annekat suggested, I have listed out a few specific questions below.

    What does a new treatment needs to demonstrate? Obviously it needs to work and ideally it would have fewer side effects. But are there other gaps? Are there any treatments that reduce the frequency of flare-ups?

    Is Rituxan used for limited Wegener's or just severe? I know the FDA approval is relatively recent, but has it improved patient quality of life? Now that it's FDA approved, do insurance companies reimburse for Rituxan fully?

    Thanks for your patience with this everyone. If it's easy to discuss over the phone, I am more than willing to set up a time.

    Thanks again!

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    If you haven't looked there already, you may want to peruse the "New Member Introductions" and "Weggies' Stories" threads on this forum. Might be a bit tedious to read through, but that's what research associates get paid for.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #14
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    Quote Originally Posted by Pete View Post
    If you haven't looked there already, you may want to peruse the "New Member Introductions" and "Weggies' Stories" threads on this forum. Might be a bit tedious to read through, but that's what research associates get paid for.
    Yes, and also the "Medications" section of threads.

    Thanks for the specific questions. Off the top of my head, I'd say it would be nice to have a non-toxic treatment with little or no side effects that could effectively treat WG without suppressing the immune system! In our dreams.....
    Anne, dx'ed April 2011

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    Quote Originally Posted by epavelle View Post
    Thanks for the responses, guys. As annekat suggested, I have listed out a few specific questions below.

    What does a new treatment needs to demonstrate? Obviously it needs to work and ideally it would have fewer side effects. But are there other gaps? Are there any treatments that reduce the frequency of flare-ups?

    Is Rituxan used for limited Wegener's or just severe? I know the FDA approval is relatively recent, but has it improved patient quality of life? Now that it's FDA approved, do insurance companies reimburse for Rituxan fully?

    Thanks for your patience with this everyone. If it's easy to discuss over the phone, I am more than willing to set up a time.

    Thanks again!
    I would like to know if you have been able to interview any of the recognized consultants listed by
    Vasculitis Foundation and ask them these questions. There is research underway to look at some of these issues, like what long term treatment is most effective at reducing either the frequency or severity of flares. What initial treatment is most effect as getting us into a state of remission of our GPA. Both are important to us.

    RTX seems to work well for some of us but not as well for others, same with CTX and the milder immunosuppressants. Trying to learn what meds are best for which people is a very important issue for all of us as well as treating facilities. I will probably remain on low dosage of prednisone and a maintenance dosage of generic Imuran until there is some research findings suggesting what course of treatment is best for me to try. This might help reduce frequency of flares and hopefully reduces severity of those I do have so I can get back into a drug induced remission more quickly without the real heavy duty treatment that was needed initially to save my life.

    Coverage for all our treatment varies according to our insurance plans and coverage and the insurance companies can tell you what they claim they might do in such cases but they usually hedge and say they need an actual claim to determine your actual benefits. I know my RTX and other extensive treatment was fully covered when in ICU unit but I won't know how outpatient coverage for RTX or other treatments would be until if I actually need it in the future.

    I would guess cost savings would be the main consideration for insurance plans and and HMOs. They seem to care less about effectiveness and impact on patient. The doctors seem to view effectiveness and impact on patient as more important as do us patients.
    Last edited by drz; 12-07-2012 at 05:29 PM.

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    I'm just seeing this thread. I don't feel comfortable with having a for-profit group posting to this forum in order to obtain information. This is a support group, not a focus group. I also find your stated intentions suspect. You claim to have spoken to many specialists yet you're asking questions that would certainly have been answered with such interviews-- eg, frequency of flares, need for more/better drugs, quality of life issues. Wegs is an incurable disease. Of course we want better drugs. The other info can be found with a 10 minute internet search.

    I could say more, but I feel your inquiry was intrusive enough and I don't want to give it more attention.

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    Sangye,

    Thank you for the feedback. I understand your discomfort and will no longer post questions on this forum, but I wanted to clarify a few points. Specialists have answered some of these questions, but as part of this study I need to get multiple opinions from different points of view, which means triangulating research across communities. I apologize if this work is deemed intrusive, and I don't disagree, but to provide the strongest case possible to move forward with new treatments, this "for-profit" research is commonly the way it is done. Sadly, it is often the reality of healthcare companies. Anyway, thank you again to those who have responded, I very much appreciate it.

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