Reply To: Prickly/water droplet sensations

May 18, 2012 at 12:25 am

Hi Lori:
I have CIDP (Lewis Summner Variant). I have Monoclonal Gammopathy (MGUS). Blood produces an excessive amount of the IgM anitbody. I have been through IVIG treatment (in 2010) with little change. The Nero ended treatment mostly all though 2011 except when I saw him in Oct 2011 and complained that I felt I was getting worst. He updated my NCS & EMG which indicated I was losing Axon. The oncology/Hematologist I then met with suggested Rituxan therapy. (He had already ruled out blood cancer). I had 4 infusions in Jan 2012 – one per week. The most significant thing I can tell you is that your body’s first reaction to or experience with Rituxan is key. The Dr told me if I didn’t react adversely to the medication right away I would be home free. However, my first infusion I had no problem during the 4 hour infusion, but when I got home I felt I had a reaction to the stuff. I got a fever and felt flu like symptoms and my skin was on fire. I called the Dr and he said “your ok”. I took some tylenlol and went to bed. Woke the next morning feeling ok. Now, the next 3 infusions went without a hitch – absolutely no negative reaction . The only reaction seemed to be with the Benedryl. Makes you feel pretty woosy. At this point I can not say it has done anything for me. What I have heard is that if it is going to help it may take 6 months. So I am being patient. I wish you great success. Dave
I hope this is helpful. Good luck