Reply To: help getting BCBS approvial for Rituxan treatment of CIDP

Anonymous
June 15, 2012 at 12:35 am

Hi Lori,
No probem asking all the questions. I found out about Rituxan on this site and sometimes its the best place to find answers.
I will give you some background on my use of Rituxan. I found it as an option in 2005. I asked my Dr. about it and he had never heard of it. I did some more reserch and presented it to him and he thought it as a good option to try. I had gone through most other treatments which worked for a while and then stop.
Treatment with Rituxan in 2005 was to have it for two years and then go off. I did that for two years and then my Dr. did not know about treatment longer than that. So I went off and with in one year I was back to the symptoms that I had had before. I tried the IVIG and didn’t get much help. I then turned to this website again and found someone that had Rituxan for longer than two years. I found that they were located only 60 miles away. I aske who was their Dr. and go an appointment with them. The Dr was supprized to find out how I had found him, but he said that with the drive I had to get better, he thought he’s treatment with Rituxan would help.
I started the Rituxan again and was on it until I had the dental work and had to pause treatment. So now I start again.
My physical condition was not as bad as some I have heard of. I have painful feet and hands. Lots of burning in them. I was week to the point of not doing much besides sitting. I love to garden and could hardly plant the seeds. it was all I could do to walk the dog 100 yards. Never had to use a walker but my balance is very bad.
So now after 3 IV’s and 3 weeks, I am able to hoe weeds, walk the dog around the block, build garden benches, have friends over for dinner, make cakes for my friends wedding, and shop most of the day with a girlfriend (power shopping). I know that I seem to have more energy that most people. I just like to do the things I like when I can. When I can’t, I stop. My Dr said to keep moving and says that it is my physical activity that keeps me from getting to bad.
My Dr wanted to start again on the Rituxan with a max dose and then go to the maintance dose of every 6 weeks. I will stay on Rituxan indefinatlly. My Dr says that I should be able to extent the time between treatments longer and longer as time goes on. I should be able to streach it out for 6 Months eventually. It will be my symptons that will dictate the treatments.
Good luck, and hold out. I think Rituxan works the best for me but it is the slowest to take effect.
JoMama