Ocrevus side effects..?

[Lyssi458]

I was wondering if anyone whose taken ocrevus can share any side effects they had during and after the infusion. I had my first Monday and I’ve been ok all week just noticing a few odd things. I googled it and I don’t know if I’m just not looking properly but I couldn’t find many. Thanks in advance ❤️

[greaterexp]

Would you be comfortable sharing your particular side effects? I’ll be watching this post.

[Lyssi458 in reply to greaterexp]

Today my legs feel like I ran a marathon. It happend suddenly this evening. Especially my back calves. I don’t know if it’s related to the infusion but I’ve never experienced it. It’s hard for me to stand up, it hurts so bad.

[ssdw1958]

Hi Sorry to hear you have MS, i am ssdw1958 i was diagnosed with MS in 2004. i started with Ocrevus on October 2017 the only problem i had was the first night and it was that my legs felt like led i just had a hard time walking. now you have to understand my legs don't want to work right all the time. i also use a rollator to help me to walk, that was my only problem. when i had all my other infusions i have not had any problems.

[Lyssi458 in reply to ssdw1958]

I’m feeling something similar. My legs feel sore like I ran a few miles. I’ve never had my legs feel sore for no reason besides working out. It worried me a little

[ssdw1958 in reply to Lyssi458]

after that first night my legs started to feel better it did scare me a little bit but once it went away i felt so much better. you see i had my infusion on a Friday and i was glad that my husband didn't have work just in case i needed him but the next morning when i woke up and i was feeling fine i was very happy,

I hope you feel better but if you don't feel better soon you should call you doctor i wouldn't wait until Friday, Oh one more thing looking at Google isn't really a good thing

just because your probably getting info from people that have never had the medicine.

[jimeka]

I agree with Sandy, that you need to be in touch with your doctor, even if this symptom goes away, it should be noted in your medical notes. Hope that you see improvement soon, keep us posted, blessings Jimeka 🦋 🌈

[IFwczs]

I had no side effects due to a steroid infusion and Benadryl administered prior to the infusion. You should ask your doctor. Feel better!

[carolek572 CommunityAmbassador]

Lyssi458 No side effects that I can tell, but let your medical team know about this.

Be Strong,

Carole

[Juliew19673]

No side affects except sleepy from the crummy benadryl. I have experienced hair loss, but they will not claim this, as a side affect..

[Horse714 in reply to Juliew19673]

It’s a side effect mind falling out to and growing back in all frizzz:(((( I don’t like when they lie. It’s making me very suspicious 😒

[jazzygurl1351]

Awful and nasty painful cold sores. This is my twelfth different treatment in 14 years, I am only trying it to say I tried

[xlr8dvette]

I’ll take my fifth infusion of Ocrevus in June. The only side effect I have every had is a sore throat. They stopped the infusion for 15 minutes. The sore throat went away.

[Horse714]

Yes my hair is falling out it’s growing back in all frizzy. I’m concerned about infections and cancers

[JenJen89]

I did the first 2 half doses of ocrevous and not only did I loose 1/3 of my hair (all over shedding) but I also went into liver failure, had a massive MS relapse and nearly died.

The hospital in Victoria that id been a patient for, for the entirety of my ms diagnosis (6 years) became uncontactable when I was in icu fighting for life. They wouldn’t send through any of my past history, blood tests or MRI’s to the hospital where I ended up so they had to treat me as a brand new patient with no clue of my ms history. I am only just recovering now ( about 12 months later) though Im suffering from permenent brain damage and memory loss . I have started mavenclad as my new treatment (1 week in) I put it off as long as I could because hairloss IS listed as a side effect for mavenclad.. I am seeing a Chinese herbalist in the hope that I can grow some of my hair back post ocrevous because my life has been destroyed forever but if I can restore some of my confidence back, well that’s something, I’m only 29 so hair is everything! I would urge anyone thinking about starting ocrevous to think again and check the health of their liver if changing from another ms treatment such as gilenya (as I did) which is known itself to raise LFT levels after prolonged use. ALSO they DONT tell you that if you have been taking gilenya and stop taking it to begin another treatment, you will most defently relapse severely given the nature of how gilenya works.

Good luck on your MS journey xx

[Horse714 in reply to JenJen89]

Omg 😮 I’m so sorry for you!!!

[dailygrump40]

I switched from Tysabri to Ocrevus and after every Tysabri infusion I was able to walk a lot better than when I hobbled in. My first half dose of Ocrevus I had to be wheeled to the car and driven home. Every infusion since has improved and I actually walk out. The other side effect I had wasn't nearly as noticeable until after around the first month and went away by itself during the 5th month. I just felt weak. Like I hadn't been moving very well. My balance had gotten worse. I was using my rollator a lot more. Then one morning I woke up and the issues I was having were gone. The issues I was having came from titrating off the Tysabri and the amount of time it took the Ocrevus to get everything reorganized to what it's doing. Good luck with it and keep us updated on how you're doing.

[Horse714]

Hair loss big time!!! And it made my hair really frizzy and just weird how it frizzy’s and bent. Can’t really put it in words.

[MSPRAY4CRE]

Hello , my fellow brothers and sisters of MS.

I went on my 4th cycle of ocrevus and have been shedding hair like crazy. They gave me Benadryl before they gave me the ocrevus infusion ...and I still lost a ton of hair . It just keeps coming out 😷😟.They should list this.. as one of the side effects. Not right , to not list .

Have lesion on right side of spine , as well as some on my brain .

Stay strong ....keep pushing along for your self , your family , your friend's .🧡

When I want to complain about my issues of nerve pain ...I must remind myself ... complaining will NOT help me get feeling back in my hands , nor , refresh my lost memory .

Try - to stay strong , to remain calm , and push through.

🙏

🧡