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Thread: Matinance

  1. #1
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    Default Matinance

    Finally after 16 months of 1st 10 months of Rituxan then 6 months of Cytoxan I will be transition to a matinance med. in June. Doc is leaning towards the Azathioprine. Other option being Methotrexate. Any opinions. Azathioprine looks better on paper but would like to hear from someone who is either on it now or has been in the past. Thanks!

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    Default Re: Matinance

    Hi Robert,

    You may want to be mindful that the choice of maintenance therapy meds isn’t a “forever” choice. The drugs may change depending on how you react to them.

    Be sure your doctor has you take a TMPT (enzyme) test to be sure you can process azathioprine (immuran). My doc didn’t, and I was extremely sick for about six weeks.

    I did take methotrexate for about three years. The longer I took it, the more pronounced the side effect became. I began by experiencing mild fatigue the day after my weekly dose. The fatigue increased to the point where I was pretty tired for two days after the dose. I took 20 mg/week.

    Cytoxan has been used primarily as induction therapy. It’s not good to be on it for an extended time. I was on it for 16 months, and I can’t use it anymore.

    My current maintenance med is rituximab. I now get an annual dose of 1 gram. It has kept me in remission for three years. I experience side effects for 24-48 hours after the dose (wakefulness the night after and fatigue the day after), but I think the big doses of steroids and Benadryl I get along with the rituximab are the culprits.

    You didn’t mention if you are taking prednisone. It will get the inflammation under control, but it also has numerous side effects. I am in the last stages of tapering off it.

    Hope this info 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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    Default Re: Matinance

    Thanks Pete! That helps a lot. You can read all you want but nothing is better than talking to someone who has been there. I will make sure they do the test. I would have been pissed! I was on Rituxan for about 10 months but every time I went below 15 or 20 ml of predizone I would have a flare up. The Cytoxan is doing the job now. Doc told me yesterday bloodwork says I am in remission and If know problems arise could be off by the middle of June. Sounds like you have had a long drug out affair yourself and glad your doing better.

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    Default Re: Matinance

    I am down to 6 ml on the predizone going to 5 and staying there for awhile.

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    Default Re: Matinance

    i have been on a maintenance dosage of 175 mg of AZA and 5 mg of pred for several years. I started at a very low dosage of AZA before the test results came back as they said that was a safe way to do it and also good way to test my ability to handle it. I worked up to 200 mg as it goes by weight but I did have to cut back to 175 and also on the Pravastatin i take for cholesterol since the combination of both raised my liver enzymes too high. If you use any alcohol AZA is also a better choice but ask your pharmacist to review your drugs and see which they recommend for you to try first. Not every drug works for everyone and some times for unknown reasons a drug will suddenly stop working for you and then require a change. Good luck with your maintenance meds and best wishes for a long remission.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Matinance

    Not been on Methotrexate as I have kidney involvement. But was on Azathioprine for 20 years. I couldn't t tolerate Cyclophosphamide and Rituximab wasn't around when I was first diagnosed over 20 years ago. I achieved and maintained remission using Aza and pred.
    Although some of my drs believe the many years use of Aza caused me to have immature, odd-shapped red blood cells, they have returned to normal after stopping Aza.
    Due to it's effectiveness for 20 years, I'd recommend Aza.
    Diagnosed April 1995

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