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Thread: How many take DS Bactrim daily?

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    All I ever heard on the immunosuppressants was half dose (to see if it's tolerated by bloodwork) and then full dose of....whatever. My rheumys sense was to the extent that you had physically noticeable side effects he would deal with them through other means if possible -- the main thing he wanted to make sure of is that the medication (in my case mtx) wasn't wrecking my liver.

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    Jan, yes, it's just that they are waiting much longer than normal between dose increases. If you need ctx, it means you have severe disease and treating it with a sub-therapeutic dose is ineffective. The delay is dangerous.

    Phil, slowly increasing the ctx dose when beginning treatment is normal, just not that slow.

    Last summer when my lungs were hemorrhaging, Dr Seo said he was more concerned with how I'd be in 6 weeks if we didn't start ctx immediately, than he was about how I was that particular day. He was looking down the road, considering how long it takes ctx to start working, and that it takes a week or so just to get up to the therapeutic dose.
    Last edited by Sangye; 07-29-2010 at 06:34 AM.

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    Sangye, I didn't know that the ctx should be increased like that.

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    As far as I'm aware, the only reason to increase the ctx dose slowly is so that any adverse side effects can be detected and acted upon before major damage is done. It is not at all unusual for the dose to start extremely high and then taper off. This was the treatment I received because I was in such bad shape, but I did have to remain in hospital with careful monitoring for the first couple of months.
    Jack

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    Quote Originally Posted by pberggren1 View Post
    That is strange to slowly increase the dose of ctx. I have been on it 4 times now and each time I was started at the highest dose.
    Did you have trouble with WBC going too low? I started at 100 mg oral Cytoxan and then went slowly up to 150 and then they had to discontinue it for a week due to low WBC. Now I am at 75 on odd days and 100 mg on even days and my rheumatolgist seems happy with that since my WBC is staying close to normal limits and lab show signs of WG decreasing in symtoms.

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    I don't think my WBC ever went below 4 or 5 the 4 times I was on ctx. Glad to hear you are improving.

    God Bless,
    Phil

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    The usual is to start at 50mg for a few days, then increase by 50 mg every few days.

    drz, 75 or 100mg is such a low dose. I hope it's getting control of the Wegs and not just holding it at bay. Do you feel a lot better? (Might be hard to say, since the drugs can make you feel so lousy)

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    Quote Originally Posted by pberggren1 View Post
    I don't think my WBC ever went below 4 or 5 the 4 times I was on ctx. Glad to hear you are improving.

    God Bless,
    Phil
    Mine (WBC)only goes above 5 when i have an infection, at least that is what I recall now but pred memory??

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    Quote Originally Posted by Sangye View Post
    The usual is to start at 50mg for a few days, then increase by 50 mg every few days.

    drz, 75 or 100mg is such a low dose. I hope it's getting control of the Wegs and not just holding it at bay. Do you feel a lot better? (Might be hard to say, since the drugs can make you feel so lousy)
    I feel OK most of the time except when HGB gets low or I get bladder infections. I hope new treatment plan will get rid of bladder infections which keeps interfering with Cytoxan dosage. Progress has been slow but rheumatolgist believes the WG is finally starting to respond to treatment. That is why he is starting to reduce the prednisone. If it doesn't seem to work out well he may consider trying Rituxan again. (probably if I end up in in-patient again in next couple months)

    My initial treatment after diagnosis when i had to be intubated for bleeding in lungs was to start with Rituxan IV which I had twice i remember. When they moved me to a rehab hospital to get re-conditioned they then started oral Cytoxan because of concern about side effects and hope the IV Rituxan benefits would last till cytoxan reached more therapeutic level. I know for cancer they estimate Rituxan benefits to last several months or longer. I don't know how long it helps us WG patients.

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    Did they only do 2 rtx infusions? That wouldn't be enough to induce remission with severe disease. The usual is 4 infusions--one a week for 4 weeks.

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