Reply To: my rituxin experience

November 14, 2012 at 3:43 am

hi fred–good to hear from you.   So you had 1000mg, 4 weeks in a row?   mine was 1000mg 2x, 2 wks apart. then if i can get this insurance thing figured out i will have it again in january. did you have any problem getting insurance coverage?

I have been 6 months without ivig–and have not gotten worse.  As far as improvement, I do have more energy, but unless Im just expecting too much too soon—I dont have any significant strength increase in my calves and feet yet.   My Dr has said the rituxin takes a while, and I know nerves heal very slowly so im trying to be patient.  Then, i guess even though they may possibly be healing, I may not notice  it until it innervates the affected muscle.

My cidp is considered atypical too—-glad to know i am in the norm as far as cidp  goes–lol

How long has it been since you have had ivig?  I hope it works for you. It can take a while to start working so be patient.  There was a few times in the beginning that i felt it wasnt working and that i needed ivig, but i think it was more fatigue and not actual weakness, i waited it out and have not had any ivig since the rituxin.

I still have some days where i feel i have more numbness. Im doing more because i feel better, then when i overdo it, i get the fatigue and more numbness.

i have feelings of pain in my ankles and feet where there was only numbness, i am hopeful that these feelings are the nerves reawakening.   best of luck with it—-keep me posted,  im interested in how it works for you.