has anyone used Rituxan?

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lizabit
New Member


Date Joined Feb 2015
Total Posts : 3
   Posted 2/13/2015 9:10 PM (GMT -6)   
Hi, I'm new here so bear with me please! I have lupus nephritis and am on Cellcept at the moment. They want me to have the Rituxan infusions but it has really scary side effects. Has anyone had experience with it?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/13/2015 11:46 PM (GMT -6)   
I haven't tried it, but I wanted to welcome you to HW.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 2/16/2015 1:52 PM (GMT -6)   
Hey! Welcome to healing well! I have to be honest with you and tell you any drug they want to use to treat lupus nephritis has some pretty scary side effects! Your rheumatologist/nephrologist is prescribing you this drug in hopes of saving your kidneys so you do not have to go on dialysis which is even worse than the drug side effects you're looking at. I never did Rituxan and I was about to but my kidneys failed and they put me straight on dialysis! Have you done Cytoxan? Before CellCept came around, it was the gold standard for treating Lupus! If it was me, I would ask it to do an older drug as we know what the potential side effects are in long-term use versus not really knowing with The newer drugs but that is just my preference.
Amy
Lupus Moderater

lizabit
New Member


Date Joined Feb 2015
Total Posts : 3
   Posted 2/18/2015 8:55 PM (GMT -6)   
Thanks for the info Amy. I know about the meds! I would feel just great if it weren't for the side effects from the prednisone and the CellCept and now we throw this into the mix, well we need to try to save the kidneys. I'm loosing ground and my nephrologist feels Rituxan has the best chance of turning things around. I"ll let you know how it goes.

Knox
New Member


Date Joined Feb 2015
Total Posts : 1
   Posted 2/19/2015 5:33 PM (GMT -6)   
[url] Lizabit I have had Lupus since I was 21years old. I am now 54years old. I am currently on Cellcept and prednisone for nephritis. I have taken Riruxin in the past. Do not worry. I have not had any side effects. As a matter of fact of the 8-9 drugs I have been on at some stage Rituxin made me feel the best without any side effects. Please take your doctors advice and do not worry. You will be pleasantly surprised.

Cooper

lizabit
New Member


Date Joined Feb 2015
Total Posts : 3
   Posted 2/19/2015 6:10 PM (GMT -6)   
Hi Cooper!
I'm scheduled for the first Riruxan infusion next week. I have had so many side effects to everything that I'm a bit jumpy at this point! Thanks for the support it really helps.


Lizabit

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/19/2015 10:58 PM (GMT -6)   
Hi, sorry I haven't responded sooner but I've been really ill. I have had the Rituxan infusions, I did mine back in 2008 I believe. I did a total of 5 infusions and my counts dropped very low and my Dr stopped the infusions. It also totally wiped out my B cells, those are the ones that are used for your immune system.

Taking this medication is meant to lower your immune system to stop the lupus progression. However, it wasn't supposed to totally wipe them out. I didn't get any better with my infusions and still today 7 years later I still do not have any B cells.

I know that your nervous about side effects and such, but remember each of us react differently to the medications. What happened to me may not happen to you. My lupus is very bad and I've tried all of the treatments except Gold injections and I'm still on high doses of prednisone. I've been on the prednisone for over 15 years now and it's totally destroyed my body. I also have RA and Fibro. We found out two years ago that I also have T-cell LGL Leukemia. So, which disease is the worst or making me the sickest is hard to tell at times.

They will watch you very close while getting your infusion and if you don't tolerate it the nurses will let your Dr know right away. Rituxan is also used in cancer patients so its been used a lot. I hope you tolerate it okay and have no side effects. If I can be of any additonal help please feel free to ask.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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