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Thread: Is Cytoxan (still) the gold standard?

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    Default Is Cytoxan (still) the gold standard?

    Question for you experts out there--
    I went to my rheumatologist today for follow up. (DX Apr 2015 with WG, lung and kidney involvement, in addition to sinus, ears, eyes, etc...).

    At its highest, my creatinine was over 8. It's down now to just over 2.0 and appears to be holding steady, although I still have blood and protein in my urine. All other counts looks good. Lungs and eyes good. I never needed dialysis.

    I asked him what happens should I be lucky enough to get this disease into remission and he said another year on Cytoxan.

    I have been reading everyone's posts here and it seems like most doctors have moved away from the long term cytoxan. I do understand that I have significant kidney damage even if this gets into remission, and that maybe cytoxan IS the most appropriate for me.

    My rheumatologist worked with Dr. Fauci in the 80s at NIH and was involved in the development of cytoxan as a treatment for WG--but it seems like newer research shows that other drugs work as well if not better.

    Can you tell me about your experiences? Point me to research that I can read?

    I am working with a nephrologist as well and I will ask him next time I see him. He is newer to the field and I'm curious what he thinks as well. The two (neph + rheum) do not work together (separate issue to be dealt with later).

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    The newest treatment these days is rituxan or rituximab. It is a biologic and was first used for rhuematoid arthritis but has turned out to be very effective for WG. I had treatments in July and again in October and I am now in remission and on no meds for WG. Do a google seach and you will find all kinds of information on it. Search this forum as well as we have had lots of discussions about it since I joined a year ago. I too have kidney involvement and I'm being closely monitored by a nephrologist.
    Karen; dx'ed April 2014

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    My rheumy at Cleveland Clinic took me off cytoxan after another doc had had me on it for 16 months. She said that it may have damaged my bone marrow. I had blood in the urine about two months prior to going off it. A cystoscopy showed no bladder anomalies, so a round of antibiotics cleared a significant UTI.

    I was switched to methotrexate. I've been on it for almost three years with no major side effects. I had kidney involvement in a small flare that happened a couple months after I got off pred. Two infusions of rituxin along with going back to 60 mg of pred took care of that. I'm in remission now. I'll be on methotrexate for the foreseeable future. I'm down to 2.5 mg of pred, and will go to 2 mg next week.

    Other maintenance drugs are Azathioprine (immuran) and cellcept. I can't take immuran as my TMPT test contraindicates it. Cellcept for me has not been discussed.

    Some people are using rituxin as a maintenance therapy. They get periodic doses at six-month to annual intervals. My rheumy plans to use it only to knock down future flares.

    My creatinine is stable at about 1.4. Everything else is normal.

    Hope this is helpful.
    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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    Hey there! First of all: kudos to you for taking an active interest in your treatment options and for seeking out research.

    You asked for articles and so here is some recent research on Cytoxan and Rituximab:

    Here's a study about Ritxuimab vs. Cyclophosphamide, finding that RTX is non-inferior to CTX for inducing remission: Rituximab Versus Cyclophosphamide for ANCA-Associated Vasculitis with Renal Involvement

    Here's the latest study (November 2014) about using Rituximab vs. Azathioprine for maintenance, finding that RTX was better at sustaining remission: MMS: Error

    Here's an excellent and comprehensive article about using Rituximab to treat WG. It includes what trials are going on and what the outcomes of various studies have been: SMW - Swiss Medical Weekly - The role of rituximab in the treatment of ANCA-associated vasculitides (AAV)


    From personal experience, I have achieved remission twice through RTX and am now getting a dose every 6 months, as in the Ritzarem trial (I'm not participating in the trial though). I've had a very positive experience with RTX, although it is expensive.

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    It's true that they are trying not to keep people on CTX for as long, not because it isn't effective, but because of risks of long term use. Your rheumy's plan to keep you on it for another year after you achieve remission seems out of date to me. If you are in remission, you should not need to be on CTX with its long term risks. The different courses of maintenance treatment that Pete mentions above would make more sense, and you might need a WG expert to determine the best course of action for you. Here are a couple of links that show lists of well known WG/vasculitis specialists. These docs may be willing to consult with your doc for free. Or they may be able to give you the names of specialists in your area. VF Medical Consultants and Vasculitis Journey of Hope - United States . Both of these sites are worth browsing for general info on WG and vasculitis, too.

    As for CTX being the "gold standard", I don't know about that, but in some cases it may be the best option for initial treatment. It is said to work faster than RTX for most people, and would thus be appropriate for severe involvement in the lungs or kidneys that needs to be knocked down quickly. It could then be followed by RTX or, if in remission or close to it, one of the maintenance meds listed above. RTX is relatively new and there are variations in how different docs are administering it. It is done by infusion and is usually repeated over a period of time, and yes, it is very expensive. I did well on CTX, though I was probably on it longer than necessary, about a year. I haven't been declared in remission, but my disease activity is quite well stabilized at this point, and remission is a subjective term. I was put on methotrexate for maintenance and have had a couple of minor flares which were dealt with by dosage adjustments. It works well for me. I also take prednisone and Bactrim. I don't have kidney involvement. If that ever happens or I ever have a major flare, RTX might then be the best alternative for me, given the amount of CTX I've already taken in my lifetime. There is supposed to be a lifetime quota. I'll cross that bridge if I come to it.

    Best of luck, and stick with the forum... you'll get lots of support and info, and little by little, a lot of useful knowledge will sink in. Keep us posted.
    Anne, dx'ed April 2011

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    Thanks everybody!
    I've been reading the articles posted and continue to learn. It really seems like once I get this thing in remission that moving off cytoxan is the norm--and I would be very happy to be off it.
    Right now I'm tapering off the Prednisone. Is nausea part of that? Lightheadedness? I'm reading all the prednisone threads now. The nephrologist also put me on an ACE inhibitor to protect my kidney--my suspicion is that that is causing the nausea, but he doesn't think so (it's a very low dose). There are so many pills, how does one know which is causing what symptoms??
    This forum has been so incredibly helpful for me. Thanks again!

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    CTX made me feel a little nauseous, but I got over that side effect within maybe 3 weeks. I felt so crummy anyway, as a result of being so sick, that I was in bed most of the time, so it didn't matter as much and wasn't to the point of throwing up or anything. As for prednisone, I never associated the tapering of that with nausea, though I imagine it is possible, and everyone is different.

    Your doc probably told you, but I'll say it anyway just in case, you need to drink LOTS of water with CTX and urinate frequently to avoid having it build up in your bladder, which can be a cause of bladder cancer somewhere down the line. I think I've only heard of this happening once on all the WG groups I'm on, but I don't know the true incidence, and it's wise to just drink a lot more water than you normally would, whenever you think of it. I've heard things like a couple of liters a day, but don't remember exactly.

    I'm glad you are finding the forum to be so helpful. It's been indispensable to me since the first day I thought I might have WG, a little over 4 years ago.
    Anne, dx'ed April 2011

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    Will you have to have more infusions of RTX or only is you flare?? thanks Susie

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    Here's my take on the whole thing. It's from personal experience, articles I've read (a long time ago, when all of this was 'top of mind') and other's experiences.

    There are two proven 'heavy hitters' we have in our arsenal to beat down a flare: CTX and RTX.

    CTX is chemotherapy, which is designed to kill off T-cells, and B-cells, but also kills off any fast reproducing cells (including hair ). When metabolized in the body one of it's by-products is a known carcinogen that can cause bladder cancer if not continually flushed through with water. I was attached to my water bottle like a security blanket. I was on CTX for a year. In most studies the max should be 6 months.

    RTX is a biologic, designed to target only B-cells. So it's basically B-cell ablation. Once they're ablated, they take between 6-8 months to start repopulating, but now you have the immune system of a newborn. So equally important to stay away from any infectious situations.

    Some docs use RTX as a maintenance drug once remission is achieved, but my doc doesn't believe this to be prudent (and keep in mind it's a drug that's less than 10 years old, so everyone's a Maverick) as it's the only option I now have to beat down a flare. It's our Ace in the pocket. So we use Imuran (AZA) for maintenance, knowing that if the poo hits the fan again, I have RTX to take care of the problem. CTX is completely out of the question for me now... I've had my life's quota, and then some.

    I hope my ramblings make some sense and help a little.

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    I'm in agreement, Marta. I'm on mtx for maintenance. Can't take immuran. Haven't discussed cellcept. My rheumy is keeping rtx in the holster to be used if I have a flare. It's been over 18 months since my last infusion. I've been in a stable remission for over a year and can do whatever I want (except keep up with you). I was on ctx for 16 months and have also used up my lifetime quota...
    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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