Why I Want Rituximab
If you’ve been a reader of mine for a while, you’ll have read my post in which I trash big pharma and state my wish to be put on Rituximab. But recently I read a story on MS News today (read it here) about a Swedish study that found Rituxan is tolerated better than a lot of other MS DMD’s (disease modifying drugs) – including my nemesis Tecfidera – which another study found its use is generally stopped by patients within 2 years of first use. See here.
The same Swedish study has also shown that Rituximab shows a reduction fewer brain lesions and less relapses, so why wouldn’t I want it?
In Sweden it’s is becoming the go to MS drug for those newly diagnosed.
It has been around for years so there is plenty of research on it and is basically the forerunner of Ocerluzimab. In fact it had identical findings on PPMS as the studies on Ocerluzimab, but less money can be made by big-pharma off of Rituximab.
I Will Just Keep Requesting It
On my last visit to my specialist MS nurse, I asked to be put on Rituxan as I have side effects on Tecfidera and I forget to take the tablets pretty often but she told me “that’s fine as long as I don’t miss two doses in a 24 hour period.” I told her I do sometimes, she then told me I tolerate it well so they wouldn’t be changing my medication any time soon! I was then told Rituxan isn’t even used for MS. Um, okay. Do I know more than my nurse? I doubt it.
Now I will be forcibly requesting to be put on it when I next see my neurologist in March.
Why do we have to fight for anything that will help us. Fight for financial help, fight for proper care, fight for medicine that will help you. Fight, fight, fight.
I hardly have energy to get out of bed in the morning, but I have to muster up the courage to fight battles with HMRC, a lot of my MS team (who are brilliant despite my complaints) and it is sad as I feel people that should be listening to me aren’t, and those tasked with my care are letting me down.
We MSers have to be our own soldiers, protectors and cheerleaders. That is why any help is so greatly appreciated. So for me the fight is on again. I will get myself onto Rituxamab.