Ocrevus, Rituxan not new drugs

Ocrevus, Rituxan not new drugs

I received an email yesterday about a new drug for progressive MS called Ocrevus. https://www.cbsnews.com/video/new-drug-provides-hope-for-those-suffering-with-ms/I don’t get it, I’ve been on Ocrevus for almost 2 years already. Is it really still new news?

I wish I could rave about this drug that it has done wonders for me, but it hasn’t. I haven’t had any relapses and for that I am thankful but it certainly hasn’t halted my progression. I am worse today than I was two years ago. That is my unfortunate truth.

I am actually changing as of my next dosage to Rituxan, the sister drug to Ocrevus. I just feel Rituxan has been around for over 15 years and the drug itself has more history. Ive blogged about the two drugs here https://multipleexperiences.org/2017/06/28/ocrelizumab-ocrevus-versus-rituximab-rituxan/. My MS specialist had no problem with me switching back to Rituxan because I felt safer with its side effects and history. The two drugs are very similar. I was on Rituxan prior to Ocrevus but was forced to change because of insurance.

Unfortunately Ocrevus or Rituxan is still my best option for medication until Ibudilast comes out. I am still progressing even on this drug but there isn’t anything on the market that is better. I’m in a place where all I can do is hope. I can hope I don’t progress too much before something better comes along. Maybe stem cell will become less evasive and that would be an option. Right now I am waiting for ibudilast which is my next hope.

10 thoughts on “Ocrevus, Rituxan not new drugs

  1. I wonder whether you read a UK article because, as far as I know, it isn’t readily available here. Sorry to hear that you are struggling so much lovely x

    1. Actually it was a major news station story I included it in my blog. The story was sent in an email. It’s odd because US isn’t usually first. Your treatment you couldn’t get in the states yet easily.

  2. I’ve been following you for some time. I’ve read every post, but I haven’t commented until now.

    I have been on Ocrevus since December of 2017. I — like you — can’t say that it has helped me. In fact, I have more problems now.

    To summarize my experienced with Ocrevus, my second half of my first infusion caused an anaphylactic reaction. I was able to continue on the medication after the rate was lowered and a bag of saline was administered concurrently with the medication. I had immediate headaches after the infusion, my walking somewhat improved, but then declined over the months, and the swelling in my lower legs and feet were horrible. I started having problems regulating my temperature during the day (I’m always cold), but during the night I have night sweats. I had my hormones tested, but they were normal. I knew this had something to do with Ocrevus.

    Things really started to decline when I went in for my next infusion in August 2018. I came home from the infusion to discover I started my menstrual cycle. It didn’t stop until January 15 of this year. After tests were done, it was confirmed I had fibroids in my uterus and cysts on my ovaries. The reason I stopped a week ago is because I had a total hysterectomy. Now I’m awaiting the news of the pathology to see if any cancer was found.

    I did find adverse events on the FDA’s website (https://fis.fda.gov/hub/stream/aaec8d41-5201-43ab-809f-3063750dfafd) that listed fibroids, cysts and uterine cancer in addition to the known breast cancer risks. All of these things have been reported since trials started, and ran through September 2018 when the report was last updated. There have been 1,605 serious adverse reactions. I can tell you this is lower that what the true number is. I plan on reporting mine.

    I’m not sure if you’re on Facebook, Jamie, but there are a couple of Ocrevus pages that I’m on. There are a lot of women who discuss the same thing we’re both going through.

    Like you, I was also on Rituxan prior to O. I can’t say right now if I would consider going back on that or not. I’be tried just about every DMD other than Gilenya or Lemtrada (another name for Campath). Quite frankly, those two scare me more than what I’m going through now. I’m really at the point of saying if the medication causes more problems than the disease itself, why am I on them?

    I totally understand your frustration!

    1. Wow thank you so much for commenting because you did say something that I now have about swelling in my feet and and legs. My neurologist had to put me on a water pill that I now take at least 3 to 4 times a week to offset this. I was tested for everything and they couldn’t find an answer and they just chalked it up to the MS. I’ll be honest I honestly did not think it was Ocrevus would not of even thought about it.

      I’ve done many blogs about Ocrevus especially in comparison to Rituxan. Ocrevus was created because rituxan patent was running out. Rituxan doesn’t have the same side effects that Ocrevus when it comes to the cancer and that’s why or it always scared me.

      I took Gilyenia for about four years that was pretty benign but it didn’t hold me at all I’ll buy the end. Lemtrada and thyroid cancer, now that scares me.

      Last time I was switching meds and I was off all of them even though it was only for a couple of months I had my last relapse which disables me. I’m terrified to come off all meds as well. It’s not a very win win situation. That’s why am making the switch back to Rituxan, at least I feel little more comfortable

      1. The only side effect I had after the Rituxan was a sore throat. That was it. The thing I did like about Rituxan is patients were being monitored for their CD19 & CD20 counts. It seems like that’s not the case with Ocrevus in most cases. Although I have read on Facebook that some patients are getting tested while being on Ocrevus. It sounds like they don’t have a standard protocol in place for this drug, and in my opinion, they need it.

        Thanks for your comment back, Jamie. I wonder if I could get my Medicare Advantage plan to cover Rituxan since it’s used off-label for MS. I know insurance did when I still lived on the west coast, but that’s before Ocrevus was on the market. I guess I’ll have to discuss that with my neurologist next month at my appointment.

        I don’t know why I haven’t commented until now. I feel like kicking myself because I quite enjoy your blog posts. lol I feel like you’re my east coast kindred sister. 😉

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