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Rituxan, anyone taking it now or in the past?

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Posted 10/10/2008 8:16 PM (GMT 0)

Hello,

my 22 year old daughter was diangnosed in February and just completed 6 rounds of once-a-month chemo. She's feeling much, much better.

Her doctor wants to try Rituxan via IV next week with a follow up dose two weeks after that. I know it's still in human trials, I'd love to hear more from those who have experience with it.

Also, it looks like insurance won't cover it, anyone have a ball-park figure on the costs???

Thanks in advance,

Nancy

Posted 10/10/2008 9:55 PM (GMT 0)
Hi Nancy, I have no idea in regards to your question. I just wanted to say hello and welcome to the group. I'm so sorry to hear about your daughter. It's bad enough when we get sick but for our children. I have a daughter her age and a son 28 so I can relate. I have a friend who has had to be on it and had problems with her medicare covering it. I'll see if I can reach her and find out what she did about the cost. I'm glad your daughter is feeling better. Just a thought. If you look up Montel williams on the internet1- 573-996-3333 it's a patient assistance program. They may at least be able to point you in the right direction if they can't help you themselves.
let us know. It is a very informative website.  here's the link http://www.ims-1.com/~freemed/
hugs
carol
Posted 10/11/2008 2:00 AM (GMT 0)
Thanks Carol!! I added that link to the post in "Lupus Resources" with the list of websites that help with meds or provide free meds when folks qualify. If anyone needs to see the whole list, there is a link at the end of my signature.
Posted 10/15/2008 5:53 PM (GMT 0)
Thanks for the info, Lupus can be an expensive disorder even with decent insurance.

I'm interested in learning more, though, about people's experience with Rituxan if they've taken it. I understand that in Europe it's called Mabthera?

Thank you!
Posted 10/15/2008 6:06 PM (GMT 0)
Hi Nancy:

I saw your post earlier, but I wasn't well enough to respond. I was hoping that the couple other members who had taken Rituxan would respond. I'm sorry I didn't respond sooner. I've taken Rituxan IV infusions. I took mine back in November of 2006. I was to have a series of 4 infusions over one month. I managed to get three of the four in. My platelet count dropped drastically and my Rheumy and Oncologist held the last dose. At the time my Doctors were unaware that I have blood cancer in addition to my lupus and RA. It's not thought that my blood cancer was the culprit that caused my platelets to drop so drastically.

I can say that after having the three infusions I truly didn't feel any better. Again, I've got more than just lupus and RA going on with me. My Rheumy is still dead set against me having anymore infusions just in case. My first infusion took 5 hrs to do and I had to have my vitals tested every 15 mins the first hour and then every 30 mins for the second hr. I had no reactions to the infusion and by my third dose it only took 3 hrs to do.

If I can be of any additional help please let me know. I hope your daughter does well with the Rituxan I was on Cytoxan and if that she was having the Rituxan is much easier to handle. I had no side effects other than the low platelets. Best wishes for you and your daughter. I can't offer any $$ of the infusions as my care is done through the US military hospitals. I've heard tho it runs in the thousands of dollars per dose. I may be wrong with that number. It's what was mentioned to me. Good luck to you both.

Hugs,
Barbara
Posted 10/16/2008 6:09 PM (GMT 0)

Thank you so much for your info -- a personal experience is exactly what I was looking for. I'm sorry you've had to go through so much. I understand that Rituxan is used widely for different forms of leukemia, I hope you're able to get some benefit from the infusions you got.

I'm hearing more and more about rituxan/rituximab/mabthera in the news. We wouldn't have noticed the articles otherwise. I suppose you recognize the headlines more when you're trying to find out everything you can about a topic. Anyway, my daughter decided not to go forward with the infusions, partly because she couldn't get answers on coverage, partly because she needed info on what to expect, it's a big decision.

We may be quiet on this forum but we read it all the time and we've learned so much, thanks to contributors like you!

Nancy

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