Reply To: my rituxin experience

wrapping up this post on the rituxin…. i had some hope in the beginning that it was working. I had periods in the first few months where i was experiencing many sensory changes and hoped they were nerves reawakening.  it is so difficult to tell with this disease, with the good days, bad days, fatigue from overdoing it when you do have good days etc…etc…  I’m sure you all know what im talking about.

anyway, it has been 6 months since my rituxin infusions, i do not have any significant increase in strength. I am coming to the conclusion that rituxin did not work for me.   It’s confusing, because i do have a confirmed case of cidp. so far any attempt to alter my immune system has resulted in less fatigue, feeling better in the very beginning, some sensory return—-yet all of these feelings have been very short lived and i seem to go right back to square one shortly after each treatment.  It has been this way with ivig, PE and now rituxin.

Possibly i just have a very resistant immune system?????  IDK……..any ideas?

I have sent off all of my paperwork for the sct and am waiting to see if i am going to be accepted, then will start the loooong process of insurance appeals.

I have also made an appointment with a Dr at St Elizabeths—one of the centers of excellency, with Dr Gorson.  i requested a consult and hope he will take over my treatment for cidp in the event i dont get accepted for the sct, plus i will need someone from now until then.  I am currently having no treatment–other than the rituxin already done in june 2011.    hmmm… im currently doctorless and treatmentless–lol—not a good way to be starting out 2013.

hope everyone had a nice holiday—would be nice to see the forum active again for 2013–it’s such a great source of information and especially helpful for those newly diagnosed.

if anyone has any helpful advice to add for st elizabeths or dr gorson feel free to post!!