Reply To: my rituxin experience

October 9, 2012 at 2:48 am

hi Raymond—yes, getting something like this after being used to being active, athletic and healthy is difficult, but try not to get too discouraged, the stress only aggrevates the symptoms more. -trying to get an accurate diagnosis can be very frustrating.   What are your symptoms—are they typical cidp ones?

You may get more responses from others on the board if you start a new thread with your questions, others may not be reading your post because it’s posted here under mine about rituxin.

As for the insurance I have a ppo anthem plan, pretty pricy plan-i pay for it myself as i own and operate a small business. This is one reason why it makes me so mad they are trying to not cover the rituxin–i know exactly what i pay them for myself, family and employees and it’s not cheap.  I am still in the appeal process right now, so Im not sure if it will be covered or not. I just hope to get it all figured out before my next rituxin infusion comes due.    Its so stupid of them to not cover, the rituxin is a fraction of the price as the loading doses of ivig i was previously getting every 6 weeks and it’s not given very often.  At first my dr said again in six months, but she’s discovering that some people can go even longer, dont need another infusion until the cd19 and 20 cells of the immune system start coming back—some people it takes 9 months.

yes, i live in Maine. saco river is beautiful, did you go whitewater rafting there, or to a calmer part of the river for canoeing?  I go to the Lahey clinic in burlington MA. the dr is Srinivasan, she is a neuro-muscular dr.  I noticed with your drs listed above you didnt mention a neurologist, thats why i asked what your symptoms were.

i also went out to the mayo clinic in Minnesota to see Dr Dyck and had a very thorough work up there to confirm the cidp diagnosis. i even had the  sural nerve biopsy, just because i wanted a definite diagnosis before putting all this toxic crap in my body to alter the immune system.

you may be able to get rituxin with a confirmed RA diagnosis, they are using it for that.  I kinda wish my dr could find some lymphoma or something , so i wont have to fight my insurance company for the rituxin.

have you read up on the stem cell transplant, where you have tried and failed so many treatments.  but, im sure you would definitely want a confirmed auto-immune diagnosis before doing that.

have you had an emg/ncv test? seems that test should help with your disability if it showed extensive nerve damage.  good luck with your disability hearing, sounds like you are preparing well for it.

isnt it so annoying that we have to fight so hard for things like that and insurance coverage, after paying for it for our whole working life?    Its really irritating to me, but if i were to be unmarried and have a child the government would be throwing all this free stuff at me–its such a messed up system.                              Lori