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Thread: Desperately seeking med ideas.

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    Default Desperately seeking med ideas.

    Alysia Weggie suggested that I post my questions here. So, here is my situation. I've got an untenable situation where every drug they try me on progresses my disease, rather than arrest it. My doctors are at their wits end. Cellcept was the worst but even Rituxan has had it bad side effects. I've also have LCV as a skin manifestation of Wegener's. So, they tried me on Colchicine but that turned out almost as bad as the Cellcept. The only drug they are offering is Imuran but it scares me to death that it will be like the others. Cytoxan is the only drug that put me in a short remission. But, you know the long term risks of that.

    Has anybody ever used Arava or Gusperimus(DSG)? These are two drugs the doctors haven't mentioned to me. Has anybody ever had a drug make their disease worse?
    Last edited by crowneagle; 03-07-2017 at 07:58 AM.

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    Many of us have taken Cytoxan for long periods of time because it was the best thing available before RTX was approved and commonly used, and it is known for usually working faster than RTX. They can be taken together. If you are doing infusions of the CTX, you might need more than one, just like you do with RTX. With oral pills, we just keep taking them, for 3-6 months or more, in much lower daily doses than the infusions, and drink LOTS of water. It worked for me. I know you've heard my two cents worth and sincerely hope others can shed some light on other approaches. Especially those with CNS involvement or other more unusual and hard to treat scenarios.

    I certainly do remember cases on here where meds haven't worked as expected, or have made things worse, and hope those people will chime in. I've heard of Arava but not the other one you mentioned.

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

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    There's certainly no harm in asking your doctor about DSG. It looks as if it has been approved in Europe for use against GPA.
    https://en.wikipedia.org/wiki/Gusperimus

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    hi! im semi new to WG and this forum but i currently take methotextrate as for inflammation this is working great and my numbers are almost back to normal, i haven't hit remission yet but hopefully! just wanted to mention another drug.

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    Quote Originally Posted by annekat View Post
    Many of us have taken Cytoxan for long periods of time because it was the best thing available before RTX was approved and commonly used, and it is known for usually working faster than RTX. They can be taken together. If you are doing infusions of the CTX, you might need more than one, just like you do with RTX. With oral pills, we just keep taking them, for 3-6 months or more, in much lower daily doses than the infusions, and drink LOTS of water. It worked for me. I know you've heard my two cents worth and sincerely hope others can shed some light on other approaches. Especially those with CNS involvement or other more unusual and hard to treat scenarios.

    I certainly do remember cases on here where meds haven't worked as expected, or have made things worse, and hope those people will chime in. I've heard of Arava but not the other one you mentioned.

    Sent from my MotoE2(4G-LTE) using Tapatalk

    Thanks Anne. Miss you. I am seriously thinking about another round of Cytoxan. I have to call my doctor today after she left me a message yesterday. First, I'm fully exploring what fisetin can do for me. I've also heard that Cytoxan using pulse therapy is the safest way to take it. My kidneys are spitting out red blood cells and I'm suppose to be getting a ct scan of my bladder and kidneys soon.

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    Unfortunately, mtx isn't recommended for weggies with cns issues as the presenting feature. At least, that's how I remember it.

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    I'm not sure if it's still being used or not. I've read that it's been withdrawn but even that info is old. Anyways,it doesn't appear to be available in the USA. I've had some good effects from Fisetin. It has some similar qualities of DSG.

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    Quote Originally Posted by crowneagle View Post
    Thanks Anne. Miss you. I am seriously thinking about another round of Cytoxan. I have to call my doctor today after she left me a message yesterday. First, I'm fully exploring what fisetin can do for me. I've also heard that Cytoxan using pulse therapy is the safest way to take it. My kidneys are spitting out red blood cells and I'm suppose to be getting a ct scan of my bladder and kidneys soon.
    Thanks, Tom. I was feeling a little bad about going into my oral CTX spiel again, though I know some people's WG specialists prefer that route for some reason. But I already knew what your conclusion is and that you are a special case. As for fisetin, I'm not sure I've ever seen it mentioned on this forum, and it sounds like it warrants further discussion. I miss you, too.

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

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    Hey Tom,

    Rtx might take 2 rounds until you can see significant improvement. You can be on both rtx and ctx. My beautiful Phil was on both for some time.

    Over the years my wg dr. Tried on me: plaquenil (didnt do anything), Imuran (I couldnt bear), mtx (didnt do anything but hair falling). He also suggested arava/ leflunomide which was the option if rtx wouldnt have worked (thankfuly it did) and lately cellcept, which I refused so far.
    He also mentioned new biological med which I cant remember its name. He explained to me that one cant be on 2 biological meds at the same time. He preffer that I will not be only on rtx as it seems to him not enough right now.
    He also explained that researches found that bactrim/ sulfa can help weggies eventhough its just an antibiotics. I was on it without other meds but pred for a year and it worked fine on my wg until it elavated my liver enzymes and I had to quit it. If I remember right @me2 wrote something about it... ??
    My wg dr also said that Igiv in itself can be a treatment for wg.
    And if you ask me, my fav is my pred... but I know you dont like it as much as I do...
    Keep on fighting, Tom. We love you and pray for you. Please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Quote Originally Posted by LaurenGoodwin View Post
    hi! im semi new to WG and this forum but i currently take methotextrate as for inflammation this is working great and my numbers are almost back to normal, i haven't hit remission yet but hopefully! just wanted to mention another drug.
    Lauren Ny name is Darrell Boyer and I have had weggy for 7 years. It attacked my lungs but my remotogist pulled my out and I to have taken all the drugs you have mentioned. I got off prednisone about 1 year ago. I took it for 5 years. My problem is skin infections and hard to heal even antibiotics. Does any of this sound familer? I am A senior and struggle with this format my email is dboyer77380 at hotmail.com Thanks

    VW: Altered e-m address to save Darrell from the search engines....
    Last edited by vdub; 04-05-2017 at 09:03 AM.

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