In my last few posts, I alluded to the fact that I would be starting Rituxan at the beginning of this month.
Since those posts, and despite the fact that the infusions had already been scheduled, I decided to go in a different direction.
While the prospect of needing treatment every six months to a year after the two initial doses was a huge draw for me, the risk of PML – Progressive Multifocal Encephalopathy, a rare and nearly always fatal brain disease – while small (.001 percent) , was too much for me to handle.
There are several reasons that I made this decision:
- I have both lupus and RA. If I was dealing with RA only, the decision would have been easier, but it seems that for those who have used Rituxan off-label for lupus, the risk of PML has been higher.
- I have come to accept the fact that my body does not work right, but I need my mind to be as functional as possible.
- The risk of PML, not being on Rituxan, is pretty much null, so I felt that if I had an opportunity to avoid it, I should.
- I have been in the .001 percent before, so for me, even that amount of risk seems possible.
- I did not get a satisfactory response from my rheumatologist that Rituxan would have been the best option for me right now. While he was the one to suggest it, when I expressed my fears, he basically didn’t talk me into Rituxan, and ultimately suggested Tacrolimus, instead.
- I felt that worrying, while I was on Ritxuan, and for a good amount of time after I was off of it, every time I tripped or couldn’t find a word, that I was losing my mind, wasn’t worth it for me. That would be a lot of stress for feeling good.
- There is a lot going right in my life right now, and while feeling good is not one of them, I felt that potentially jeopardizing that to feel good for not that long of a time wasn’t worth it.
While I am happy about my decision to forego the Rituxan at this time, and am relieved about that decision, I cannot say I am super happy at the moment. I am not super functional, in pain, nauseous, and needing to sleep, both at night, and during the day, a lot.
Unfortunately, we decided to taper off of Prednisone (I’m glad to be off of it because it was making me crazy), assuming I was going to have a steroid infusion when I started the Rituxan, and now that I have started Tacrolimus, but it hasn’t started working yet, I am really on very little medication at the moment, which means I’m kind of a mess.
Tacrolimus is an immunosuppressant, similar to CellCept, which is typically used to prevent chronic organ rejection after someone has had an organ transplant. The dose given to those with RA is much less than the standard dose.
Unlike Rituxan being given every six months after the two initial doses, Tacrolimus is taken twice a day, every 12 hours. You also have to be monitored while on it: blood work every two weeks for the first three months, and then monthly after that.
These are the decisions that are part and parcel with RA. Finding a medication that works, whose side effects are manageable and worth it, can be a truly exhausting part of living with this disease.
Right now, for me, I feel like the biggest potential side effect with Tacrolimus is that it won’t work. And that doesn’t put me any worse off than I am now.
But I definitely hope that it does work. I guess we’ll see in about four to six weeks.
Published On: March 19, 2013