I've been on Ocrevus since early 2022, and I really do believe that it's a great drug. But when I started it, I could walk around the block, and my relapses were what now seems pretty mild.
After starting it, I quickly developed so much spasticity (pelvic and hip flexor pain) that it was interfering with my ability to walk any real distance. I wound up with a baclofen pump at month nine. At 13 months I had the worst relapse I've ever had, which took me the better part of a year to get over.
I know there are a lot of things that could have caused me to get worse, the main one being the stress of the pandemic and losing both my dad and my wonderful grandma (not to Covid) in 2021. It could be related to age, old damage, menopause, etc., but my brain keeps coming back to the timing. In addition, I'm getting tired of my immune system being suppressed. I can live with it being a constant, but I would rather not, as I have a ton of anxiety about things like family holidays with the unvaccinated, eating in restaurants, weddings, concerts, etc. I feel like I'm holding my husband back from doing a lot of things we used to enjoy. With Mavenclad you eventually get to enjoy a period without the immunosuppression, and hopefully (God willing) a more well-behaved immune system without MS activity.
I've been batting this one around for some time, wishing I had the nerve to do it because there can be scary adverse events, but then my husband pointed out that everything is scary when it comes to DMTs (although Mavenclad is considered an immune reconstitution therapy, or IRT). My next Ocrevus infusion was supposed to be in late July, and I know it takes a while to put a new med into motion. So today I finally called my MS neurologist and talked to him about it, and he agreed it would be a good fit, so I'm going to do it! I'm so excited! He's sending me the form in the mail, along with an order to get my tests done. If the paperwork/insurance goes through okay, I could start it as soon as late July when my infusionwas due. 😁
Wish me luck!
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I know how difficult it is to make that decision to switch DMTs. It sounds like you are really looking forward to the change and the positive possibilities that come with it. There have been some great posts about how well Mavenclad works. Hope it does wonders for you. Good luck! 🤗🤗🤗
Good luck with the Mavenclad. My last Ocrevus infusion was last July, but I'm not taking any DMT. So far, so good. I suffer with spasticity and hip flexor tightness, but I never knew it could have been from the Ocrevus. 🤔
It's tricky, Robsmom, because I don't really know if it's from the Ocrevus. There's no place I can find that says Ocrevus causes it. There are anecdotal reports of a lot of people (but a very small percentage) getting a lot worse with their walking after Ocrevus. A fancy university MS specialist told me I'm on the right medicine with Ocrevus, but it doesn't feel like it to me. I'll probably never know why the spasticity got so bad so quickly, but since I had a relapse too, I feel better switching.
Yes, if I had a relapse I would probably look for something different too. I went on Ocrevus after my worst relapse that affected my speech. I never had another relapse afterwards. My walking has gotten worse over those 14 years, but I chalked it up to the spasticity and age. I'll be 70 on my next birthday.
I have been on Ocrevus for about five years with no problems at all. I have heard that it does no good for people over age 65 or so, which I am, however I am reluctant to stop the infusions in fear of a relapse which Ocrevus could have stopped. In MS mzany relapses become permanent. This is my conundrum. Any thoughts are welcome.
Hey, whwiechm, if you're doing well on the Ocrevus, and you aren't seeing low Immunoglobulin G on your bloodwork, and aren't having infections, I can see why you would be reluctant to stop it. My doctor says that sometimes people who are older and doing really well can switch to something like Aubagio, or another moderately effective treatment that's less risky, but then you're walking away from a drug you've been doing really well on. Maybe you could just tell your neuro that you're basically happy with Ocrevus and not really looking to make a change right now, but you would like to know more about under which conditions older people should consider switching to a safer but less effective drug?
Aaron Boster on YouTube has some great videos on aging with MS and the various considerations with DMTs. He has videos on the pros and cons of other meds, too. I just found this one by searching for Aaron Boster YouTube. He runs an MS center in Ohio, and I think his information is very reliable.
Thanks, mrsmike9. I appreciate that, and I will keep everyone apprised. I know there have been others who have posted about Mavenclad, but not a ton, and everyone is different.
I just wanted to emphasize to everyone that I'm not slamming Ocrevus. It's a convenient and highly effective medication that's really life-changing for a lot of people. For all I know, the wosening symptoms could be from something else, and the Ocrevus could have kept it from being worse. But the timing and the relapse does give me doubts that it's right for me. 😊
I had a 9mo gap between Ocrevus and Mavenclad, in which my legs were improving and my baclofen was reduced. I had to stop baclofen for 6mo the first year, and 3mo the 2nd year (so far, I'm not done with my reboot yet). My restart was on the lowest dose and sufficient, unless I had been doing something "impossible" 🤣
Thank you, kdali. If you hadn't shared your experience with Mavenclad and introduced me to Gavin Giovannoni's blog, I would probably still think that Mavenclad was poison because you can't handle it with your hands wet! I won't blame you if things go wrong ,😅 but I'm grateful that I learned more about it!
It's great that your spasticity improved! I'll be following your progress and hoping everything continues to go wonderfully for you!
Yikes, yes, don't blame me 🫣 I'm glad you took the time to learn about it! I mentioned my spasticity bit to you because you're on baclofen, and want to encourage you to monitor how you're doing if case you're a freak like me who needs to crank down the dose. Thank you! 🥰
Let us know when day 1 happens! 🎉 I'm excited to hear about your journey.
If I start feeling like a noodle, I will now know what's going on. 😁 I actually had to stop taking oral baclofen months ago because it suddenly started making me feel super impaired and my docs couldn't figure out why, they just did labs (all normal, thankfully) so just wrote it off as "cog fog"?! Anyway, thankfully I have the pump, too, or I would really be hurting. So...very good to know that it may need to be adjusted, God willing!
I will absolutely let you know when I start, kdali! Thanks again. 😊
congrats on starting Mavenclad! I just finished my second week of the second year so I am supposedly finished with all DMT! We will see. I am almost 72 years old so it’s possible I may have aged out of MS anyhow I went from Aubaggio to Mavenclad. so I had to do a kind of system cleanse to make sure all the Aubaggio was out of my system before I could start the Mavenclad. That was a very yucky process, but survivable. Taking the Mavenclad is relatively easy- five days one week, wait three weeks , five days another week- then wait a year and repeat then you’re done. I don’t know anyone else who has taken it so I feel like a trailblazer. I know that’s not true. Otherwise it wouldn’t have been approved. The idea of not having to worry about coming up with the money for meds is very exciting for me. I’m wishing you good luck. 😆
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