Reply To: my rituxin experience

July 13, 2012 at 2:25 pm

had a massage yesterday and my massage therapist commented on how she feels there is a lot more to work with on my legs. Muscle tone on the outer calves that wasnt there a while ago and definitely on the quadriceps which i was just beginning to question whether or not they were becoming affected a few months prior to starting rituxin.
now that i think about it, I am able to lift myself up from squatting position from floor whereas a few weeks ago I sort of used my hand for a little boost when doing that. For me the progression was very gradual that sometimes i questioned it—so im guessing the healing will be the same.
I no longer have the tingling and buzzing feelings i had before starting rituxin. I was never sure if those were good or bad at the time, but looking back, the past 3 years i had them i was continuing to decline and now that they have stopped i feel better, have more energy and am feeling stronger. I do have different sensory things since the rituxin, a dull pain at times in the areas that are affected by the cidp, itching, and fascillations.
I am still a little concerned that my rituxin schedule is the 1000mg 2x every 6 months for 18 months and nobody else on here has that schedule for cidp? i have seen it mostly for RA. I dont want to start healing only to be set back again. I guess i will have to deal with that when and if it happens—possibly the 1000mg x 2 WILL hold me for 6 months.
Will continue to post and hope that this helps others on the board. Looking back at my 3 year journey with the ivig, I sometimes think i wanted it to work so badly that i may have thought it was working for me better than it actually was. I guess my message to others is not to wait too long before asking for something else. I was a little hesitant to try anything else, knowing the ivig was the safest, and everything else came with possible side effects.
I can definitely say, even this soon after my infusions that i definitely feel better than i have in a long time. That lethargic fatigue feeling that i think is occuring when the immune system is in constant attack mode is gone. I still have a long way to go to get the feeling and strength back in my lower legs, but just the fact that im feeling better and am up and doing more should help that along.
Thank you to other rituxin users who have posted in the past–without those posts i wouldnt have gotten to this point.