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Rituxan or IVIG?

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14 years 3 months ago #16439 by goinggo
Rituxan or IVIG? was created by goinggo
HI
I just had my second baby two month ago and my count is now down to 2k. The same thing happened after my first was born 5 years ago and it took a long time for my count to slowly climb up ...
My hemo wants me to start Rituxan treatment as soon as possible because I refused to take steroid (steroid didn't work on me anyway) But give the unknown long-term side effect of Rituxan, I don't feel comfortable with doing it. I know IVIG works for me and it has helped me to maintain a safe count during my late pregnancy and delivery. Based on my experience with my first pregnancy, I strongly feel that my count dropping has a correlation with my postpartum hormone level so I want to wait and see if the count will go back up after the hormone normalizes. Meanwhile if the count gets really low, I'll use IVIG. So we're looking at possibly 2 IVIG treatments each month for the next 2 or 3 months. If my count still doesn't sustain at a safer level (above 30k) then I'll start looking at other options (including Rituxan)
After I talked to my Hemo, He does NOT agree with my idea. He thinks that IVIG should only be used in emergency situation and repeated using of IVIG brings the same level of risks as using Rituxan. And he thinks that I need something that can give me long-term platelet solution rather than temporary effect (like IVIG)
But I really hate doing Rituxan... And once I start taking Rituxan treatment, it will put an end to breastfeeding ... My baby is only 2 month old. So I'm in dismal now and don't know what I should do.
Please help! what's your opinion?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 months ago #16440 by Sandi
Replied by Sandi on topic Re: Rituxan or IVIG?
Normally, I am not a fan of IVIG unless it's unavoidable or an emergency, like your hemo says. However, I think that in your current situation, it is a very reasonable request because of breast feeding. You're not saying you won't do Rituxan, you just want to wait a while.

That's my opinion, for what it's worth.
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14 years 3 months ago #16441 by Ann
Replied by Ann on topic Re: Rituxan or IVIG?
For what it's worth I think your idea sounds very sensible. Why do the more aggressive treatments when the less aggressive will do? You can always change tack if you need more long term treatment.

Also I was a breastfeeder and I wouldn't have done anything to stop that. I loved it.
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14 years 3 months ago - 14 years 3 months ago #16444 by goinggo
Replied by goinggo on topic Re: Rituxan or IVIG?
Thank you Sandi and Ann for your kind reply -- You support gives me a lot of reassurance!
So is repeated IVIG treatments (2-3 shots a month) over the course of 3-4 months safe? My hemo made it sound like I'm putting myself at a higher risk for bleeding and something more serious ...
Breastfeeding is important, but I wouldn't want to risk my life for the sake of it.

Thanks again!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 months ago #16451 by Sandi
Replied by Sandi on topic Re: Rituxan or IVIG?
I wouldn't say it isn't safe. If you don't tend to have side effects, you should be okay. The main risk that I can see is that it could become less effective, but some people choose to treat exclusively with IVIG for various reasons and they do okay.

All treatments have risks. I don't think you are wrong to put your baby first here. You can't get that time back.