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Thread: Avacopan

  1. #31
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    Default Re: Avacopan

    Quote Originally Posted by Razie View Post
    Yikes! That doesn't sound very promising. So sorry to hear you had such a bad reaction.
    A lot of people do fine on Avacopan but it did not work out well for me. If you can afford it or get it free it is worth trying and you might do fine on it for a long time with no problems. Most infections can be treated effectively so I would not view it as a high risk procedure.
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #32
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    Default Re: Avacopan

    Thanks @drz,
    Do you know if folks are able to replace prednisone with avacopan, or is it more supplemental?
    Thanks!
    Razie

  3. #33
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    Default Re: Avacopan

    I am confused. I have a question similar to Razie's question.
    is Avacopan a replacement for Rituximab (or biosimilar) or a replacement for Prednisone?

    Jeannette

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    Default Re: Avacopan

    @jmq, my understanding is that Avacopan, which is sold under the name Tavneos, affects a different pathway than Rituximab. It is not a biosimilar for Rituximab. I had 2 infusion treatments with Truxima, which is a biosimilar to Rituximab.

    My first delivery for Tavneos/Avacopan is coming next week. My rheumatologist is having me speed up my prednisone taper; I was reducing dosage every 2 weeks, now I'll be reducing dosage every week. I'm nervous about potential side effects and adverse reactions, but that comes with pretty much any new medication I guess.

    Razie

  5. #35
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    Default Re: Avacopan

    Quote Originally Posted by jmq View Post
    I am confused. I have a question similar to Razie's question.
    is Avacopan a replacement for Rituximab (or biosimilar) or a replacement for Prednisone?

    Jeannette
    It suppresses the immune system so for me it replaced RTX infusions. My prednisone dosage was unchanged while taking it. I still had some residual signs of GPA and maybe if I could have stayed on it and the GPA ssigns disappeared, then i could have stopped the prednisone meds too.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #36
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    Default Re: Avacopan

    Quote Originally Posted by drz View Post
    It suppresses the immune system so for me it replaced RTX infusions. My prednisone dosage was unchanged while taking it. I still had some residual signs of GPA and maybe if I could have stayed on it and the GPA ssigns disappeared, then i could have stopped the prednisone meds too.
    Thank you for the info. I also submitted a question to my rheumy at Emory via their portal and this is what he said:
    “ Avacopan has not been studied as a maintenance drug. The initial studies used Avacopan as a way to reduce steroids during induction therapy. Studies are still not clear as to how to best use this medication.”

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  8. #37
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    Default Re: Avacopan

    My new Doc at MGH/Boston started me on Avacopan about 6 weeks ago. His emphasis was that it would help me to get off Prednisone. I was having difficulty reducing at a very rapid rate (20mgs. in 2 weeks) and continuing at 10 mgs. every two weeks until I was off it. I am down to 20mgs. from 60mgs. However, I now am on oxygen in my house about 14-16 hours day. I had stopped using it entirely . Lung, back and shoulder pain are severe at times, and some other symptoms are returning. My fear is that I will get pneumonia because it hurts so much to breathe. Both Docs I have had monitoring this disease are determined to get me completely off Prednisone. The rep for Avacopan will not say that it takes the place of Prednisone. Nor do they claim that you can eventually get off of it if you continue with Avacopan, provided it works for you. I feel like I have lost perspective. On the one hand I have come down on the prednisone by 2/3rds. On the other hand I am very concerned with a renewed assault on my lungs, weakness in my legs etc. On a high note I really haven't had any adverse side effects, although I did read an old article that suggested one may become more vulnerable to pneumonia. Chest pain is also a side effect of Avacopan. I too often question whether symptoms are disease, or side effects from meds.

  9. #38
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    Default Re: Avacopan

    @CapeKay

    You may want to try a very slow pred taper. It took me nine months to go from 5 mg/day to zero. I got off pred in 2018, and haven’t gone back on it as maintenance therapy since. I’ve done a couple short blasts to deal with a stress-induced mini-flare and a Covid ear issue.
    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

  10. #39
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    Default Re: Avacopan

    Thanks Pete. That has been my advice to the Docs. Back 12 years ago when I was being treated for GCA my doc at MIT slowed me down to reducing prednisone by 1 mg. per month. Yesterday I claimed few side effects from Avacopan. Last night I took a closer look at side effects and thought more about what has been going on with renewed symptoms with me. Aside from horrible chest pain and difficulty breathing, and return of constant runny nose, the bruising/ breaking of my skin is far worse than it has ever been. As well as hair loss which is falling out at maybe 2x the rate it had been on higher dose pred. Alopecia is a side effect of Avacopan. My understanding was that this drug could not only help me get off Prednisone, but become a substitute, without many of the side effects. I found this article from the FDA. They refer to it as an "add-on treatment, including clucocorticoids".

    FDA approves add-on drug for adults with rare form of blood vessel inflammation | FDA

  11. #40
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    Default Re: Avacopan

    @CapeKay

    When avacopan was first being touted as a treatment for GPA, I asked my rheumy at Cleveland Clinic about it. She said that since I was off pred and doing well with rituximab, I wouldn’t benefit from it. Maybe your doc needs to take you off avacopan and increase your pred until you’re more stable at which time you could begin a slow taper?
    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

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