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Rituxan question

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12 years 6 months ago #34469 by tams97
Rituxan question was created by tams97
I started receiving rituxan 3 weeks ago yesterday. I am scheduled for my fourth treatment next Thursday. I am wondering how long does it take to find out if it is working?For the past two years I have been receiving IVIG every two weeks, it would shoot my count up to almost normal, then within the two weeks it would go back down to anywhere between 9-17K. My doctor decided it was time to try something else as it didn't seem like the IVIG was working as well. When I got the first dose of Rituxan my count was 13K, one week later when I went in for my second dose my count was up to 48K, yesterday when I went in for my third treatment my count was 31K. I'm just curious if Rituxan takes a while to start working or should my count be going higher after each dose? They are also giving me solumedrol along with the rituxan and wasn't sure if that was maybe what was causing the jump in my count or if it is actually the rituxan working. I am just so lost and confused, and know that I am tired of spending so much time at the hospital. Any help would be greatly appreciated, thank you!

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 6 months ago #34471 by amberyard
Replied by amberyard on topic Rituxan question
From what I understand it can take up to 8 weeks for one treatment to kick in.
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  • 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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12 years 6 months ago #34473 by Sandi
Replied by Sandi on topic Rituxan question
I can't believe you went that long using IVIG without trying other things. It's very unusual.

Rituxan can take some time. My counts at each infusion were something like this: 3k, 11k, 8k, 150k. I didn't see a rise until the fourth infusion. Some people do not see a rise until 8 to 12 weeks after the first infusion.
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12 years 6 months ago #34475 by Kim081
Replied by Kim081 on topic Rituxan question
Mine were like this.. 44, 49, 70, 60,66, then jumped to 165. There were a few times after that they had dropped somewhat but started creeping up and have been normal ever since.

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12 years 6 months ago #34513 by CindyL
Replied by CindyL on topic Rituxan question
I'm the odd one here; my counts started going up right from the get go!

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12 years 6 months ago #34523 by Winnifred
Replied by Winnifred on topic Rituxan question
I was given a winrho treatment and the following week I started Rituxan. So I do not know when Rituxan started working. That said Winrho usually lasted anywhere from 3-6 weeks.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 6 months ago #34528 by dru
Replied by dru on topic Rituxan question
Rituxan can take some time to start working. I was on prednisone during my rituxan treatment. After the prednisone was tapered my counts went up and down quite a bit over the 6 weeks following rituxan. They went up into the normal range after that.
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12 years 6 months ago #34675 by tams97
Replied by tams97 on topic Rituxan question
Thank you everyone for the help. I go in two days to get the fourth treatment, and will see how my count is, but right now at this point I have a feeling it will be low as I am hurting a lot. This whole thing has been an up and down ride, it just seems like it just progressively is getting worse. I was diagnosed with ITP in 2000, but my counts always stayed around the 50k range so never needed treatment until 2007 when my count dropped to 9k, and I started prednisone at that time and it did absolutely nothing for my counts. So they started IVIG and that is what I have been getting since then. For the last two years it has pretty much been the every two weeks non stop treatments. The doctors keep telling me there isn't many other treatments for me since I won't let them take my spleen out. I can't change doctors either because all of my medical care is paid for by the VA as I was medically discharged from the military because of ITP and am now a disabled veteran, and I can't afford to pay for it my self and my husbands insurance won't cover it since it is a preexisting condition. I had to quit working over a year ago because I was at the hospital so much and I just couldn't do my job properly with the way I felt. I am just hoping this treatment works so I can at least feel like I have a life for a while.

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12 years 6 months ago #34676 by tams97
Replied by tams97 on topic Rituxan question
I have been on IVIG for so long as that is what the doctors thought was best, and said I didn't really have any other options because I wouldn't let them take my spleen out. I can't switch doctors either as I was medically discharged from the Air Force and they are paying for everything and my husbands insurance won't cover it because it is a preexisting condition

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  • 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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12 years 6 months ago #34679 by Sandi
Replied by Sandi on topic Rituxan question
Tams - there are quite a few other options, all available to those with a spleen. It might be time to start educating that doctor of yours who is telling you that you have no other options. Those were the only options 50 years ago. Things have changed. I seriously have never seen anyone do IVIG like that for two years straight unless they didn't respond to anything else and symptoms were bad. If Rituxan does not work (and I really hope it does), you can take a look at these:

Win-Rho
Decadron
CellCept
Imuran
N-Plate
Promacta

All options.

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12 years 6 months ago #34709 by Vdeutsch85
Replied by Vdeutsch85 on topic Rituxan question
Tams,

I don't want you to be disappointed if rituxan fails. It did for me and I was devastated after the doctor saying splenectomy is the only option. As Sandi pointed out there are other options. I was in the same boat as you after being diagnosed in dec feeling tired and achy all of the time. I went to Cleveland clinic in April when I refused splenectomy. He put me on Nplate. Since April, my counts have been good, I have been able to work and live a pretty normal life( no more lying on the couch all weekend). The only negative is the weekly CBC's and shots, but going weeks without worrying about bleeding makes it worth it to me.

Hang in there! Look into other treatments until you find one that works for you!

Valerie

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12 years 6 months ago #35030 by russp
Replied by russp on topic Rituxan question
Hopefully you have already seen this but if you look at the other thread in this section I posted a link to a study on Rituxan that showed the mean time to response was around 5 weeks. That means some people took much longer to get a response than 5 weeks. Hence, you can't say anything definitively about Rituxan effectiveness for several months.

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12 years 3 months ago #37318 by sissykidd
Replied by sissykidd on topic Rituxan question
Totally honest i knew in my heart after the 2nd treatment it wasnt working for me..

im almost 3 months since first dose and it seriously did nothing i was on 60 mg of pred too and still dropped.. highest it came to was 75k

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