I just read about studies claiming that botox works as a treatment for depression. They were positive at first but now there are doubts as to the efficacy. Well, they should just come hang out in hollywood! I’m pretty sure that shit ain’t werkin! There are a lot of depressed frozen actresses out there.
ok, I have basically forgotten that I have MS for the last month. I was getting certified for diving, hanging with friends, exploring, basically having the best time ever. My body loves the sun, loves swimming, the ocean makes my hands feel normal, and being on a boat means that I don’t run so I don’t get tingly in my legs! yay! But… back to reality. I got word from my doctor that my white blood cells are starting to come alive again, which means my B-cells are waking up to start eating my brain again. Time to go back to vampire land and get my infusion. So here’s my latest MS drug news rant.
I am on a drug called Rituxan. It’s been around for over 20 years. It’s highly effective and very safe. It’s for blood cancer but has been widely prescribed for autoimmune diseases for a long time. My insurance doesn't want to cover it and I am a month over due while I search for an infusion center.
There is a new drug out now that is called Ocrevus (ocrelizumab). I first heard of this at the dinner with doctors with Nancy Davis and the Race to Erase MS people. They were heralding Ocrevus as the closest thing to a cure ever and were super excited. This was last year. The FDA just approved it on March 28th for public use. So after reading a bunch of articles and papers and blogs, here are some thoughts.
Rituxan was the first drug to work on B-cells and Ocrevus is the second. All other MS drugs work on T-cells. Honestly I don’t really know what that means other than illustrating that these are very similar drugs. They are both manufactured by the same company. Rituxan was never put through clinical trials for MS. Rituxan came off patent in 2015 and companies were allowed to start making generic versions and the price went down. Before that happened, Genentech started developing Ocrevus. Same company makes a drug that has basically the same mechanism of action for the same disease. To be fair, Rituxan is a chimeric molecule, meaning that the DNA is part human part animal (mouse). So, some people could have an allergic reaction to the mouse part of the drug. If you have a reaction It usually happens the first couple times you get it and they monitor you and give you IV steroids just in case. Ocrevus is all human so they believe it is better tolerated. But, no one has been on Ocrevus for longer than 3 years and 1 in 50 people develop cancer tumors. Rituxan does not have an increase in cancer and people have been taking it for 20 years. Why wouldn’t they stick to the safe drug that already works rather than abandoning it and starting from scratch? cuz….money.
After my last infusion I got a bill for $40,000. My insurance didn’t want to pay because the medicine was used “off label”. My doctor wrote a letter saying how important it was that I received it at that time and went back and forth until finally they agreed to pay for it this time, but not next time. Now, I am supposed to get it again in a week or two. My insurance will only cover it if I get it from their pharmacy. My doctor works at a hospital that will only give medicine that is bought from their pharmacy. So if I want my doctor to give me the infusion (of course!) I would have to pay out of pocket. The infusions last 6 hours hooked up to an IV machine. I will go twice in the next couple weeks. If I have a bad reaction, which has happened to me once and it was a shit show, the team surrounding me will be who is dealing with it. So now in order for my insurance to cover the bill I have to go to some other infusion center, maybe an hour away, and be with strangers, without my doctor. Cuz…Money. Everyone wants that bill. Assholes. This is the American medical industrial complex. And now they are telling me that next time I have to switch to Ocrevus the new breakthrough drug! Which isn’t a breakthrough because it’s the same mechanism as my 20 year old drug just more expensive and with a higher cancer rate. Cuz….MONEY!
here are some links.
Apparently in Europe you can get Rituxan for MS pretty freely and it’s way less expensive. So someone from a socialized health care country needs to marry me in the next 8 months in time for my next infusion! Sweden is the leader I think in prescribing rituxan, so….anyone?
Other thoughts. What if I just do nothing? What would happen if I get out of the medical hamster wheel and just live my life? Does anyone do that? Just eat healthy and stay off the drugs? You never know what is going to happen with MS anyway. Maybe I have a super mild form and all these drugs are for nothing anyway? MRI’s give you radiation and drugs throw everything out of wack. Not sure if denial is an FDA approved form of treatment but that’s a study I’d be willing to participate in. Just live by the sea, play music, go diving and swimming, eat healthy, be happy. That sounds like a much better treatment.
Remember the Terry Wahl’s protocol of a modified paleo diet, exercise, etc? She’s into ditching the drugs and treating the disease through lifestyle changes. It is damn hard though. I did well for awhile but then fell off. Maybe it’s worth another go? She finished her first clinical trial and it was confirmed that her plan does improve mood, cognitive function, and depression. It doesn’t say anything about disease progression or mobility though… here’s the link
Well, I have thoughts on things other than drugs and the future so I'll leave this here so we can all move on.