1. < Kidney & Bladder

My doctor thinks I should start Rituximab

Posted by codered032 @codered032, Aug 7, 2023

Hello all, I need suggestions/support. I have been on Tacrolimus 3mg 2X daily for over 2.5 years. I was in complete remission from MCD. Three months ago I was reduced to Tacrolimus 1mg 2X daily and then it was discontinued. Immediately my labs started showing symptoms of increased proteinuria. My labs are mixed. My monthly lads from 6/26/23. 7/16/23. 7/27/23
Creat 77.50. 162.47. 283.10

Pro/Crea
0.43. 5.17. 2.10

Prot/ur
33. 840. 595.

I treated for COVID 07/16/23 to 07/21/23 and off Tac for five days prior to my 07/27 labs. I read about side effects of Rituximab and wondering if I should try other treatment options. I have tried prednisone and cyclosporine with limited results. I’m very concerned about getting an infusion and the long term side effects. I hope my labs as posted aren’t to confusing. I am just asking for information.

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jillian007 | @jillian007 | Aug 8, 2023

Hi! I’ve been doing a similar gig for 8 years now. I’m a frequent relapser since my original dx 8 years ago now. I started Rituximab infusions about three years ago and they have put me in remission. Eventually they wear off and I relapse and the whole cycle begins again. We are now transitioning to infusions every six months as a more preventative treatment. They will disclose all the possible side effects as they have to. So far I’ve been very lucky and have virtually none of them which makes this a good treatment for me. As with all the drugs it’s smart to think about the long term effects of this. Unfortunately I’ve recently learned more about LT impacts of both prednisone and Tacrolimus which has motivated me to get off those. Good luck!

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1 reply
codered032 | @codered032 | Aug 24, 2023
In reply to @jillian007 "Hi! I’ve been doing a similar gig for 8 years now. I’m a frequent relapser since..." + (show)
@jillian007

Hi! I’ve been doing a similar gig for 8 years now. I’m a frequent relapser since my original dx 8 years ago now. I started Rituximab infusions about three years ago and they have put me in remission. Eventually they wear off and I relapse and the whole cycle begins again. We are now transitioning to infusions every six months as a more preventative treatment. They will disclose all the possible side effects as they have to. So far I’ve been very lucky and have virtually none of them which makes this a good treatment for me. As with all the drugs it’s smart to think about the long term effects of this. Unfortunately I’ve recently learned more about LT impacts of both prednisone and Tacrolimus which has motivated me to get off those. Good luck!

Jump to this post

Thank you for sharing. I will definitely do more research. The cost for me is prohibitive. Considering I may have to have multiple treatments.

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1 reply
jillian007 | @jillian007 | Aug 24, 2023
In reply to @codered032 "Thank you for sharing. I will definitely do more research. The cost for me is prohibitive...." + (show)
@codered032

Thank you for sharing. I will definitely do more research. The cost for me is prohibitive. Considering I may have to have multiple treatments.

Jump to this post

There is help for that. The drug companies have a fund established and my treatment was through Pfizer as one example . The infusion centers billing dept put an application in ( minimal requirements) and it was probably 90% covered. Yes each treatment is about 18,000 and I paid less than 1000 out of pocket. I’ll have to look up the info but I’m happy to share. I know there’s another brand who also covers a huge portion

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1 reply
harley22 | @harley22 | Feb 28 10:41am
In reply to @jillian007 "There is help for that. The drug companies have a fund established and my treatment was..." + (show)
@jillian007

There is help for that. The drug companies have a fund established and my treatment was through Pfizer as one example . The infusion centers billing dept put an application in ( minimal requirements) and it was probably 90% covered. Yes each treatment is about 18,000 and I paid less than 1000 out of pocket. I’ll have to look up the info but I’m happy to share. I know there’s another brand who also covers a huge portion

Jump to this post

Would like info for help with cost of this med.
It’s very expensive and my insurance won’t cover unless I get plasmaphoresis first,which I don’t want to do.

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1 reply
jillian007 | @jillian007 | Feb 28 1:19pm

My doctors office completed all the paperwork on my behalf for Rituxience from Pfizer. Here is info about their program, below. You can contact them directly but I also think they are accustomed to working with physician practices.
https://www.pfizeroncologytogether.com/
http://www.PfizerCopay.com

It’s a godsend. I also connect through the Inspire iPhone app and also learned there, that there’s a competing drug maker that does the same thing, the name has slipped my mind. Happy to help if you get stuck. This was so helpful to me and it’s my absolute pleasure to share this information with others

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jillian007 | @jillian007 | Feb 28 1:21pm
In reply to @harley22 "Would like info for help with cost of this med. It’s very expensive and my insurance..." + (show)
@harley22

Would like info for help with cost of this med.
It’s very expensive and my insurance won’t cover unless I get plasmaphoresis first,which I don’t want to do.

Jump to this post

Curious who your insurance company is, since I’m shopping for new insurance this year, if you’re willing to share

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harley22 | @harley22 | Feb 28 7:12pm

I’m on Medicare and also have a secondary Bankers Life insurance.
The thing with secondary plans is that if Medicare won’t cover something either will they.
Medicare usually pays 80% and secondary picks up the other 20% usually.

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jillian007 | @jillian007 | Mar 5 6:24am

Thanks. I’ll be shopping for Medicare plans in the fourth quarter this year. Really appreciate the help

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