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Thread: Article on the effectiveness on RTX

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    Default Article on the effectiveness on RTX

    Didn't notice this posted here. A fairly new article where they discuss that RTX would be quite effective and better at targeting the specific cells that cause us problems and allow us to drop the other meds quicker. Very short and easy to read summary of the study

    "Rituximab depletes the body’s supply of cells thought to be responsible for ANCA production. Rituximab is a more targeted approach than the current standard of care, which involves nonspecific immunosuppression with potentially severe side effects."

    "“Notably, rituximab patients who achieved remission within six months received no additional immunosuppression for more than one year,” said Daniel Rotrosen, M.D., director of NIAID’s Division of Allergy, Immunology and Transplantation. “Reducing the need for immunosuppressive drugs is of great benefit to the patient, lessening the risk of possible serious long-term side effects such as cancer, infertility and infection.”"

    Therapy for severe vasculitis shows long-term effectiveness
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    That's good news. They gave those doses to people with severe wg,I wonder if they would cut back the amout to like once a month if it wasn't so bad. But my insurance doesn't cover it anyway and I can't afford the $ 16,000 it costs. I had one infusion and had a flu like reaction to it for a week and my reumy said he wouldn't give it to me again. But that's great news
    for people who can get it.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Wow.. $16k that sure is much . If this forum post is correct the patent should expire in the US in 2015 so most likely the prices will drop a lot:
    "It turns out that Rituximab patent expires in the US in 2015. "

    http://www.thisisms.com/forum/news/forum/rituxan-rituximab-f39/
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    The most discouraging thing about any treatment effectiveness is Specks quote: "Most people treated for ANCA-associated vasculitides eventually relapse, regardless of whether they receive rituximab or cyclophosphamide-based therapy. “The risk of relapse following treatment-induced remission is a reality of these chronic autoimmune diseases,” said Dr. Specks. “The data from this trial suggest that intermittent retreatment with rituximab could be a more effective approach to long-term disease control than daily immunosuppression for patients who are at a high risk for relapse.”
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by Debra C View Post
    That's good news. They gave those doses to people with severe wg,I wonder if they would cut back the amout to like once a month if it wasn't so bad. But my insurance doesn't cover it anyway and I can't afford the $ 16,000 it costs. I had one infusion and had a flu like reaction to it for a week and my reumy said he wouldn't give it to me again. But that's great news
    for people who can get it.
    RTX is now approved for treating Wegs so an insurance should have to cover it if your doctors said it was medically necessary for your treatment. You may have to appeal and jump through some hoops and they could require significant co-pay but it seems they would have to provide some coverage for it if your docs say you need it.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I just don't think there will ever be a way I can afford the copay for RTX. So far, I don't need it. But if I do, either the price will have to have dropped a WHOLE lot, I'll have to have won the lottery or inherited a significant sum, or I'll have to look into getting the company who makes it to provide it for me as a charity case, which I have read on here is possible.
    Anne, dx'ed April 2011

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    Good work and very interesting.
    My blog: Animo

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    Quote Originally Posted by annekat View Post
    I just don't think there will ever be a way I can afford the copay for RTX. So far, I don't need it. But if I do, either the price will have to have dropped a WHOLE lot, I'll have to have won the lottery or inherited a significant sum, or I'll have to look into getting the company who makes it to provide it for me as a charity case, which I have read on here is possible.
    Most insurance plans have a cap on your out of pocket expenses. A good captive insurance plan with good drug coverage and hospital benefits might cover it if it becomes medically necessary since it is an approved drug. Before some plans could deny it as an experimental or non traditional or unconventional treatment.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by annekat View Post
    I just don't think there will ever be a way I can afford the copay for RTX. So far, I don't need it. But if I do, either the price will have to have dropped a WHOLE lot, I'll have to have won the lottery or inherited a significant sum, or I'll have to look into getting the company who makes it to provide it for me as a charity case, which I have read on here is possible.
    Hi Anne.
    I hope you will never need it. but if you will, there are research programs and the med company that might give it for free.
    isn't your insurance covering you according to doc's recommandations ?
    we have "national health program" and everyone is included in it in number of health services. the payment is much the same.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
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    I am on Medicare, the national health plan for seniors or the disabled who are receiving Social Security benefits that they have paid into over their working years. Drz, you are probably right that there is a limit on out of pocket expenses; I'd forgotten about that and need to revisit it. I also think you are right that Medicare would have to cover it, to the extent they would, if it became medically necessary. And Alysia, yes, I would look into any help the med company or research programs could give. Medicare does cover a lot of things and does cover the current treatments and recommendations of my doctor, but these have been pretty inexpensive for them, just doctor's visits and drugs, and I do pay copays.

    As for captive plans, we have Group Health here, which is something like Kaiser, and a couple I know is now paying $1000/mo. for the premium for the two of them, now that the husband has retired early due to health issues and no longer has any coverage from work. So that would be out of the question for me.
    Anne, dx'ed April 2011

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