Apologies to anybody who has been wondering how I was doing and if the Rituxan was working. I figure I owe an update. I had a very rough winter and was sick pretty much constantly. Either with colds, stomach bugs or then the actual flu in January. The flu really knocked me on my ass - haven't had the flu since I really don't remember. Luckily nobody else in my house had it but it caused a huge crash. Almost as bad as when I first became ill - was crawling across my house because standing was not an option. It really bummed me out because I felt like if the Rituxan was working I should not have been experiencing such a crash. And really, by being sick for months it was very difficult for me to tell if the Rituxan was working as intended because I felt so horrible that I was not able to try and do anything to test my endurance or energy envelope.
I was supposed to get a 4th round of Rituxan in February but the night before I was slated to fly out my daughter became very ill and I had to cancel my trip. I was extremely stressed because my Dr. was leaving the country for a while and that meant I was going to have to wait until April. During the down time I had before April I really did some soul searching about this whole experience. I finally came to the conclusion that whatever benefits I was seeing (if any) were not worth the side effects and risks involved. So I have decided that my run with Rituxan is over. I've had 3 rounds and it's been 9 months since I started. And for me it seemed to cause much more problems than offer solutions. I may have had less orthostatic intolerance but I think it definitely contributed to me getting so sick over the winter and it also caused all sorts of pain for me. I think I really struggled with deciding what to do because, as someone with an illness that is not going away, I wanted to do something. Just to feel like I was doing something about it. But again, for me, it was not worth the side effects nor the risks.
I hope I'm just in the minority on this and that this pans out to help more people because God knows we all deserve some relief and another chance at the lives we left behind. I know that Enbrel is next on the Norwegian's list. Frankly I have no desire to be a guinea pig again right now even if I could persuade my dr. to prescribe it.
Do I regret trying Rituxan? No. If anything it's allowed me to come to grips with the fact that I have literally tried EVERYTHING I can and right now I'm just trying to settle into this illness and enjoy my life the best I can. That does not mean that I'm giving up but it does mean that I'm not lobbying my drs at the moment to try anything new and crazy. I think my body deserves a break after what it went through these last 9 months. It's frustrating as hell that everyday it's something new and at times it is overwhelming but I also know that there's not much I can do about it at the moment. I can only pray that some answers are on the horizon for us all.