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rituxin failed-now azathioprine&ivig-want kids!

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15 years 6 days ago #8531 by JMcNally
I did my round of rituxin & it's been a few weeks, I went from 230 to 170 to 45 to 25 in a week! Saw the specailist yesterday & he said it did not work.

I have been on steriods for over a year & a half and I am refusing to go back on them. The side effect are unbearable! I cannot do the Nplate because we want to try to have another child and the Nplate can cause fetal damage.

I just got the azathioprine yesterday (the dr said you can get pregnant on it) then I read the warning lable - DO NOT GET PREGNANT ON THIS DRUG!!!!!!!!! I am at the end with this disease and all the drugs.

I suffer from infertility as well, so we will not be trying for another child until after the holidays (waiting for the rituxin to get out).

Here are me questions:
Has anyone used azathioprine before? What were your results? Side effects?...
Does anyone know how long you have to be on it, how long it takes to get out of your body? Any Mom's out there have you done rituxin and/or azathioprine and then had a child?

Does anyone use just IVIG to keep there counts at a safe level? if so, how long does it usually last??

Thank you everyone, this has been a year and a half and there has been no remission for me at all - it is getting a little tough to deal with!
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15 years 6 days ago #8535 by eklein
At conference a few years ago, Dr. Liebman said that success with Rituxan predicts success with azothioprine (Imuran). I don't know if it holds in the reverse though, if failure with Rituxan predicts anything. I haven't tried Imuran but it's next if I need to treat.
Good luck,
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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15 years 6 days ago #8538 by julia
Hi there, ive done Azathioprine for about 3yrs ( off them now) they slowly took me from 9k to upto 360k my last count was 245k tapered off it. Azathioprine can cause birth defects in the fetus causing dual sex organs.
Good luck got to dash any questions please ask!
Julia
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15 years 6 days ago #8544 by JMcNally
Erica, thank you I am going to look into Dr. Liebman's discussion and try and get more information.

Julia, did it take three years for your counts to go up? You say slowly, is that why you were on them for so long? Did you have any side effects? Thank you for the information on birth defects.
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15 years 6 days ago #8551 by julia
Hi, It took about 6weeks to see the Aza was working 150mg day, my count went up about 4k-7k per week slow and steady. I was on 60mg pred at the same time and took 7month to taper them even tho they did nothing for my count. Around a yr later i came down to 100mg then 50mg about 9mth later. I had minimal side effects, take a tablet with a full glass of water im sure it was before food and if i took it after food id feel sick. The side effects of pred were far far worse than the Azathioprine. At the begining id get dizzy & feel the cold but thats not uncommon with me to get dizzy or feel the cold and it could have been from the pred. I still feel the slightest temerature drop. Now i seem to be in remission :woohoo:
Good luck
Julia
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15 years 6 days ago #8557 by eklein
I heard Liebman speak about this at the Orlando conference -
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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15 years 5 days ago #8595 by JMcNally
Julia & Erica thank you for the information.

Julia, congratulations on being in remission!!!!!!