Two weeks post Rituxan

marcstck · Family Member Joined: Jan 04, 2006 Posts: 81

Thanks for getting this board up and running. For me, at least, it's a very welcome addition...

Had my second Rituxan infusion on September 19, and went for a follow-up blood work today.

For those of use who don't know me, I was diagnosed PPMS in May of 2003. At that time I symptoms were primarily slight weakness in my right leg. Now, five and half years later, my right arm and leg are profoundly weak and spastic, and my left side is weakening as well. I also suffer the full range of other MS related symptoms, such as bladder and bowel problems, autonomic nervous system dysfunction, etc.

My presentation is atypical, as my MRIs have always shown only two lesions, one small one in my brain, and another large one in my upper cervical spine, at the base of the brain stem. These lesions have remained unchanged for 5 1/2 years, and the comparison between an MRI taken in 2003 and one taken this summer would show them to be identical. My lumbar punctures have also always come back clear, so my diagnosis is based on the clinical observations of my doctor.

As for the Rituxan, I suffered slight flulike symptoms for about a week after each of the two infusions. It's still too early to tell what effect the drug will have, my neurologist tells me it will take at least a month or two to see if it's having any beneficial effect.

As others have mentioned, Rituxan depletes the body's immune system and B cells. My neurologist' s research has indicated that it also has some effect on the ability of T cells to cross the blood brain barrier.

Keep in mind also, that Epstein-Barr virus, which is often implicated in the MS disease process, resides in B cells in its dormant state in the human body. Therefore, by reducing or eliminating a patients supply of B cells, Rituxan also diminishes the load of EBV a patient carries.

Hope to be reporting some positive news soon. Rituxan is just about my last chance to fend off the ravages of this disease. I've tried almost everything else, to no avail...

Artifishual · Family Elder Joined: Mar 10, 2008 Posts: 428

Thanks for sharing marcstck, did you have any reactions during the infusion? itchiing or scratchy throat? that was about it for me. Although I did have the flu after my first infusion. In fact my whole family had it, but I was the first to recover and resumed treatment after only one missed infusions.

I know there are more here that have received Rituxan. Hopefully they will post soon.

How many infusions are you scheduled to recieve and how often? My Dr. said the amount that I recieve was based on my weight. Also did your Dr. say if and how often you would have to repeat this? thanks arti

marcstck · Family Member Joined: Jan 04, 2006 Posts: 81

I had a slight reaction during the first infusion. I started getting very congested, to the point where I couldn't breathe through my nose. The infusion nurse stopped the infusion and had a doctor check me out. After about 45 minutes the congestion cleared up, and they started the infusion again. No problems after that, and no problems at all during the second infusion.

I had two 1000 mg infusions, two weeks apart. If the drug proves to be effective, I'll have another set of two infusions in 6 to 8 months, depending on what my blood work shows.

It will be very interesting to see others' experiences...

Loobie · Posted: Tue Oct 07, 2008 4:43 am Post subject:

Good luck Marc. I'm going in this morning to decide if we are going to try Rituxan on me. It's good to see some neuro's not scared to try and treat PP. I hear so many stories of progressive patients that basically get told there's nothing that can be done. Good for your doctor, and I wish you well big time.
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"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

Lyon · Posted: Tue Oct 07, 2008 7:49 am Post subject:

Thanks for the info Marc. Interesting, and I wish you the very best from this.
Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

Elin

I am so glad to read these posts on Rituxan, and thank you all.

I have resisted taking Rituxan, despite my neurologist's enthusiasm. When I inquired how people survive with an immune system so compromised (i.e., B cells down by 90%; and T cells at 55%), he answered, "You don't need B cells. The immune system has other parts, like interluekins." This did not reassure me. (Aren't T cells the source of interluekins? and what about those B cells? How can it be a selective, targeted reduction of the CD20 cells if 90% are destroyed?)

In any event, my problem is this. Like Marc, I don't have much MS activity discerned on the MRIs. For the last three years, it's been "No substantial change from the previous MRI." Still my condition has worsened. I have assumed, per the comment of the nurse practitioner, that my "nerves are dying," that in SPMS the problem is not active inflammation--flare-ups--but the death or nerve axons. If this is so, how is it that people are helped with Rituxan (or Novantrone, for that matter?)

Also, has anyone tracted the incidence of Progressive Multifocal Leukoencephalopthy for Rituxan patients, particularly those with MS? I know that several cases occurred amount RA patients.

Many thanks.
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Elin

CureOrBust · Posted: Mon Oct 27, 2008 4:15 pm Post subject:

With you guys having PPMS diagnosis, but no change on MRI, is there any mention of brain atrophy? from the test results.