Ocrevus/Kesimpta question

[AuntMimi91]

Hi Y’all,

Has anyone had decline in mobility since taking Ocrevus or Kesimpta? If so, and you stopped taking it, did your walking improve?

[kdali]

Yes. I have taken both drugs and they were bad news for me in many ways but I kept hoping it would get better! Spasticity was what killed my mobility, even with medications, and now I am almost back to baseline. My last dose was Oct, and I was fine in Jan.

[AuntMimi91 in reply to kdali]

Wow, your mobility was back to normal in 3 months, or your B cells came back? It has been one year for me, and nothing has gotten better. I don't think I should switch to Kesimpta then. May I ask what medication you switched to?

[kdali in reply to AuntMimi91]

About 3mo after my second half dose, and I've never had a B cells specifically examined. I wouldn't decide against Kesimpta before looking at those who have switched, there's so many people who love it! I'm switching to Mavenclad...soon, I think.

[AuntMimi91 in reply to kdali]

This might sound confusing. So my neurologist told me it takes 3 months for Ocrevus to start working, and 3 months after my second half dose is when my leg stiffened up and I started having trouble walking. You said you started feeling better about 3 months after, so maybe it was working for you🤔

[kdali in reply to AuntMimi91]

It's me that was confusing. I tried to be brief and failed 🤦‍♀️ So, ok, long story here...grab some 🍿 and welcome aboard the crazy train! I have started O 3 times. The first was right after a relapse and made me feel so amazing that I decided to quit and have a baby. The second time on O was after baby and I stayed on for a year, then switched to Kesimpta. I was on K for 7mo and restarted O after a 2mo break, last Oct. I've failed both meds for drug intolerance issues. My last O infusion resulted in a Kesimpta like skin reaction I had had on my face, but this time it was my eyes and eyelids. I looked like I had Sjogrens (I don't) but my lashes also fell out and would only grow back stunted and then fall out again. The lashes started growing back and stopped falling out about 2mo ago, and I have another optho check on them soon. Want to hear more weird? I was diagnosed with glaucoma right after starting K, started drops, then after restarting O the drops no longer worked to control my pressure so I was diagnosed with steroid refractory high pressures (never happened before with steroids and lasted for months, not weeks as it's suppose to because steroids only last for weeks, but okiedokie), then a few months ago I have "spontaneously" recovered from glaucoma and am off medication. I can keep writing these insane things, but the short story is I had worsening issues with the drug each time it was given and the frequency of Kesimpta made reoccurring issues very clear to my providers. I'm still a cheerleader though, they are great drugs way more often than not! I'm super grateful that my first O experience resulted in me having a second baby 🥰🎉 I never really wanted to go back to O, but I'm finally getting my chance at Mavenclad a year after I asked for it, so I'm super skeptical and hopeful at the same time 😱🙏 I don't have many options left if my body freaks out again 😑

I am sorry for your walking issues. A year is a long time, I was losing my mind after 6mo and finally accepted it as the disease getting worse. I had to embrace the new but less me once again, and I hated it with the best face I could. I don't know if decline ever gets easier, but I expect it's like all grief, you just get use to it. Of course I'm doing cartwheels now that I'm better (not really, I'd impale myself on a Lego or something), but I have not forgotten the loss of hope for the future while still hoping to get better. It's a weird mixed bag! I just want to say that I hear you! I hope your legs can get stronger, and I hope you can make a decision about moving forward that brings you peace 🙏

[pamgarner in reply to kdali]

oh my,you really have a story,i feel bad for complaining at all, you r brave brave brave!

[kdali in reply to pamgarner]

Ty! I feel like I was mostly dumb and stubborn. There's always going to be someone going through worse, but I'm all for complaining now! 🎉

[AuntMimi91 in reply to kdali]

I am starting Kesimpta next week. My insurance approved it. We’ll see how it goes. If it makes me feel worse, like Ocrevus, then I’ll move on to Mavenclad.

[kdali in reply to AuntMimi91]

I hope it works great for you! 🎉

[AuntMimi91 in reply to kdali]

Ty

[Lmanuel75]

AuntMimi91 how have you been feeling? Have you not seen any improvement yet with your walking? You should join the Facebook page “did Ocrevus fail you “. A lot of people on there had their mobility decline after taking Ocrevus but a lot of people did get better after stopping it. You’ll get a lot more information on that site than you do here.

[AuntMimi91 in reply to Lmanuel75]

Lmanuel75, No I have not seen any improvement with walking. I am already in the "did Ocrevus fail you" group, but thank you for mentioning. Most people that got better after stopping it, didn't notice a difference for 1-2 years. It's only been one year so far and there is NO difference.

[Lmanuel75 in reply to AuntMimi91]

Maybe it’s just taking a little longer for you. Do you know if your b cells are back? I’ve read sometimes that might have something to do with it. This medication is awful. I’m still having the dizziness 5 weeks later that you also had. My right knee has been buckling the last few days as well. After only one half dose.

[Tazmanian]

MS is a progressive disease expect things to get worse

[Cutefreckles72 in reply to Tazmanian]

I agree. 100%

[AuntMimi91 in reply to Tazmanian]

Aren’t you a ray of sunshine spreading good vibes!! I’ve lived with this disease for 28 years. I know all about MS being progressive, but please don’t throw a negative comment my way, telling me to expect it to get worse! If you don’t have anything nice/positive to say, say nothing. My convo was with Lmanuel75, not you.

[Tazmanian in reply to AuntMimi91]

I'm sorry

[Goldilockssearching]

I have been on O for 5 years. Mobility worse in some ways better in other ways: no, I did not stop it, quite the opposite. I go every 5 months instead of 6 bc walking declined significantly 4-6 weeks prior to infusion. Now I avoid that slump. So I don’t think I can blame the Ocrevus for making me worse 🤷‍♀️I attribute overall decline to 2 things 1) Covid-I stay home so not using those muscles as much 2) progressive disease and I don’t know how much is due to the existing damage. Like Tazmanian said.

Going to PT & working on balance and strengthening weak muscles.

[IFwczs]

Not even a question that Ocrevus impacted my mobility/gait in a very negative way. I am just happy to have gone off it. Can't believe there is a FB group for this!