Reply To: Anemia Due To CIDP?
July update: Just had another maintenance infusion of 750mg Rituxan. Hemoglobin was 10.85 prior to infusion, slightly lower than my previous infusion. The possible cause could be that testosterone levels have fallen reducing RBC production. Medicare denied my prescription refill of Androgel (testosterone) and challenged its medical necessity. Doctor has to run a battery of tests to re-justify the prescription. Maybe I will start back up on testosterone replacement therapy next month. If not, Doc will have to look for another underlying cause. Doctor is also getting Medicare to pre-authorize the use of Procrit (erythropoietin) in October if hemoglobin levels stay lower than normal.
The Rituxan treatments have helped boost my body’s ability to repair my CIDP-damaged nerve fibers (Myelin and Axons). I have been experiencing increased strength and muscle movement/control… 7 years post initial onset of GBS/CIDP! The 3 year mark has long come and gone and I still continue to gradually improve. Being an optimist I never really believed in the 3-year scenario anyhow, now I know it doesn’t apply to me 🙂
FYI – Rituxan costs are lower than IVIg or PE costs and your insurance may pay for it more readily. More detailed info about the experimental treatment can be read here:
https://hal.archives-ouvertes.fr/hal-00566332/document
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533
An April 2015 study by Dr Richard Lewis is here, but there is a cost to subscribe in order to read the full findings:
http://www.uptodate.com/contents/chronic-inflammatory-demyelinating-polyneuropathy-treatment-and-prognosis
There is hope out there for those of us who have been injured by this awful disease. I’m now able to flex my feet just this year! It’s a small movement, but I couldn’t do it at all last year! I believe I’m getting closer to being able to stand again… maybe late this summer please! My dependency on my power wheelchair is diminishing. I’m out of it a lot more this year, using chairs and sofas, bench seats at restaurants, transferring myself back and forth without my sliding board!
My outlook on life took a huge step in the last couple months after buying a disability Van I can drive myself and meeting a wonderful woman. These events coupled with the Rituxan treatments have me feeling like I’m a new person. I’ve been travelling, drove to Las Vegas by myself! Planning more travel – plane, train, and auto! I’m starting an aggressive physical therapy program next week and hope to continue my improvements.
Sorry I’ve not been posting on these forums as regularly as I used to, I’m just not home at my computer as much. I wish all my friends here the very best and encourage you to keep a positive outlook. Don’t let those with a negative outlook pass it on to you. Keep trying different things, new things, things that may not be completely validated… be a pioneer for the rest of us if you can.