Rituxan question

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Date Joined Feb 2011
Total Posts : 399
   Posted 1/16/2012 12:47 PM (GMT -6)   
     This is the first time I have posted on this site, although I have been following the posts for quite a while now.  I find the information extremely useful and do appreciate finding out that I am not alone in this journey.  I was diagnosed with Lupus in 1997 and have experienced the usual course of ups and downs.  My symptoms are mostly arthritis, arthalgias, fatigue, rashes and GI inflammation.  I currently take Plaquenil and am reducing the Prednisone that I have been on for 4 years (12.5 mg alternating with 0 mg).  The reason for the reduction is that my Rheumatologist has recommended Rituxan, which I am currently preparing for.  I tried Methotrexate but did not tolerate it and was unable to continue with CellCelpt, which was amazing, due to bone marrow problems.  I am a little scared about the Rituxan and was wondering if anyone has ever taken it.  Prednisone is a miracle drug for me, but I have been steadily losing bone mass, which is a concern with my family history.  I live in a rural area where there are only two doctors that specialize in Rheumatology and they both share the same office...so a second opinion isn't really reasonable.  I have been reading aboout Rituxan on the Internet, and to be honest it is a little scary.  Can anyone give me some feedback on this medication?  Any help would really be appreciated.  Thanks!!!

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Date Joined May 2005
Total Posts : 7725
   Posted 1/16/2012 2:22 PM (GMT -6)   
Did they have you try Imuran as well? It's usually the first of the 'top 3' tried - Imuran, Cellcept, MTX.

I haven't heard much about Rituxan on the board yet, but maybe someone is using it and will come along and let us in on the scoop.

Sorry that the side effects have caught up with you, and I hope they find you some relief soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 1/17/2012 7:09 PM (GMT -6)   
Imuran I couldnt tolerate
Cellcept I was allergic to
Methotrexate is my "miracle"

Funny, here I am working in the health field and they wanted to try me on the Rituximab too (aka Rituxan) and it scared me too! What I am doing is I am seeking a second medical opinion with a different clinic at the hospital. It sounds like your options are limited, but I honestly highly recommend you go to the nearest teaching hospital and get a second medical opinion
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 1/17/2012 8:19 PM (GMT -6)   
I would deffinately talk about Imuran. If your doctors still decides Rituxan is the best option, I would go with it. A lot of the side effects they have listed they have to put as it has happened to a few people out of the 1000's that have been on it. It has been shown to help elimate the B cells which researchers believe is a major part of lupus and causes lupus flairs. I was about to do Rituxan and Benlysta together...Anything to help relieve the symptoms I had.

Have you maybe considered Benlysta? Which ever you decide, just know they will do plenty of bloodwork to check for any reactions you might be having as well as being observed during the infusions and being monitered more!!!
Lupus Moderater

dialysis from lupus nephritis

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 1/17/2012 9:43 PM (GMT -6)   
Thank-you so much for all of your feedback.  My insurance will not pay for Benlysta.  The Rheumatologist that I see did consider it, but it's a little out of question now.  I did decide to seek out a second opinion.  I saw a wonderful Rheumatologist outside of my area four years ago when I was confronted with a similar situation.  She was extremely helpful and helped to guide my decision, which went contrary to what my current doctor wanted me to do.  Thankfully, I was supported by my provider up here.  It really does help seeking out advice from other sources.  I will let you know what the final decision is.  The main goal for me right now is to stay healthy and strong so I can keep working!!
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