How is Ocrevus treating others?

[KYbound]

Has or is any one taken the Ocrevus? What types of side effects do you have if any?

[Timeflies5]

No S/E for me! 🤗

[throughtheyears]

My husband has been on it nearly 2 years now (SPMS). No side effects, however, I do notice that about 3 months after the infusion, he seems to have a period of not functioning as well until the next infusion.

[Shayna-ShayBrown in reply to throughtheyears]

This sounds familiar! For the past couple weeks my body has been acting wonky and I'm sure it is because it's ready for the next infusion.

[twooldcrows in reply to Shayna-ShayBrown]

let doctor know what is going on ....

[Shayna-ShayBrown in reply to twooldcrows]

I will! I get my next infusion and a look at my latest MRI next week

[TheWallBumper]

I did try Ocrevus and unfortunately for me it was a disaster but everyone I have spoken to has had great success on it with little side effects. So I can't say it was good for me but I am usually the one person things do not work on. So....Good Luck!

[PWilli in reply to TheWallBumper]

I think we're related!

[TheWallBumper in reply to PWilli]

There seems to be a lot of us that always seems to have the reverse reaction to things that are great for others. Good times.....

[Marcih in reply to TheWallBumper]

Ocrevus has made my PPMS worsen..

. Seeing Dr.in March, copaxone and Ocrevus has not slowed progress.

[joellen123]

I just finished the second half of my first dose last week. I feel AMAZING!!! So far, so good!

[fossil50]

No side effects so far. Had 3 infusions.

[mm1527mm]

Had my first two half doses in september. Had pain in legs after both doses that went away with tylenol. Had hair loss which seems to now have stopped i am taking 10000 biotin every day and use biotin shampoo. Feel throat tightness since second half dose and take claritin for it. My fatigue has really improved. I go for my mri in a few weeks.

[Boxofchocolates in reply to mm1527mm]

For the throat tightness did they give you Benedryl in your IV, or have you take extra by mouth? I feel like they should've given it to me in the IV to help me cope, but they said they didn't want me to fall to sleep.

[mm1527mm in reply to Boxofchocolates]

I had benedryl during it but it was after that i felt it for months now since the o wore off i havent really noticed it. I am due for full infusion this month.

[Shayna-ShayBrown]

I started it 6 months ago and have had absolutely none

[StephaniJ]

I started last August and lost A LOT of hair It seems to have stopped falling out at the rate it was. I finally am feeling better overall. The symptoms I was having were probably due to gilenya rebound. Overall feeling better though. Glad I made the switch. Good luck to you!

[mm1527mm in reply to StephaniJ]

My hair was falling out also. It then stopped as my next infusion time was approaching maybe because the ocrevus was mostly out of my system. I must say it has helped my fatigue and no new lesions so i am grateful.

[rjoneslaw]

No s/e

I have been slowly improving

[ahrogers]

I have been on it since 2016 with no issues. Finally found something that is slowing MS down.

[LadyLeo]

Definitely was NOT the 'wonder drug' for me. My hair fell out horribly and I truly feel it has expedited my decline over the last two years. Went from walking my daughter to the bus daily to using a rollator within 2 years. I discontinued use last year.

I am starting Myzant next month after seriously thinking about being done with DMTs after my Ocrevus experience. My January appointment with my neuro helped me come to a decision to try Myzant as I have now been officially diagnosed Secondary progressive. I have been on the high-dose biotin protocol for myelin health and to help my hair grow back since December.

For some Ocrevus is a wonderful thing and I am quite happy for them. But being realistic it.stands to reason that cannot be the case for us all.

Just as we know the popular antibiotic Amoxicillin, Amoxicillin is great for some for others it causes more harm than good. That's an accepted thing an aversion or allergy. MS therapies can be the same. Everything isn't for everybody. It's just unfortunate we have to go through such extraordinary side effects and things to come to these realizations.

[kandykone1 in reply to LadyLeo]

Omg in two years you weren’t able to walk I am so sorry.

[LadyLeo in reply to kandykone1]

True story. Thank you, but such is this MS life. I'm grateful and humbled. I noticed I take less for granted.

[jorrell]

I have had my first two half doses. After the first half dose, I got pneumonia a few days later that may have come from me aspirating water, that was an ambulance ride to the hospital. After the second half I had no problems. I will say that I am a month away from my first full infusion and I can feel it's positive effects wearing off, that includes leg control, balance, and cognitive. I am hoping that the next infusion clears that up. Overall, I will say that after the second half dose I felt much better than when I was on Tecfidera.

[m_TODD_h]

I've had both 1/2 doses and 4 full. It all has gone very well with no side effects.

People often ask me "is it helping?". My answer is "how would I know?"

[twooldcrows]

no side effects ...been on for years...love it ...

[nanderson81]

I take Ocrevus for Progressive MS. This last infusion really messed with me. I cried for three months and I lost 10 pounds. Hopefully, the remaining months will have no side effects.

[kandykone1 in reply to nanderson81]

Why did you cry? Depression?

[Tazmanian]

I have had 2 half doses and 3 full doses. No side effects, when people ask me how it's doing I say nothing is getting worse so I guess it's working.

[IFwczs]

I have had 2 half doses and 3 full doses.

There are a lot of posts here on Ocrevus, they are very useful. Do a search. Here are mine:

healthunlocked.com/mymsaa/p...

healthunlocked.com/mymsaa/p...

healthunlocked.com/mymsaa/p...

[TheWallBumper]

After my first two half doses I did have problems that seemed minor at the time. At the end of the day after taking Ocrevus I felt very tired and seemed that my balance was off and I thought that it may just be one of my down days. Well it took a couple of days, mostly in bed, before I got up and moved around. I gave it another chance cause my doctor convinced me that it would be the better choice for me. After my first full dose and over a week in bed with head pain, vision and exhaustion I decided no more. I never in my life thought that I would keep going down from there. The problems I had was headaches, balance issues, speech problems, hairless, weight gain and just an overall pain. Now I do not want to influence anyone against Ocrevus but for me it was a definate no. I had to wait over 9 months to get it out of my system and cleared for another med. I have just started Gilynia so not sure if working but it has had little to no side effects. My first medicine I took was Tecfidera for 3 years and flushed bright red in my face and arms with the doctor telling me it will eventually stop doing that. Now again that medicine may work for others but for me I still continued getting lesions. I may be just progressing faster than I want so meds cant keep up with me. Good luck everyone on the drug if choice!

[Marcih in reply to TheWallBumper]

Exactally the same KY. Progressing 😨. I understand

[Marcih]

It has made me worsen, BUT everyone is different. 👍good luck

[Tina11762]

I had to stop taking it because about 45 minutes into the infusion I couldn’t breathe. They would stop the infusion and give me steroids and more Benadryl and I could continue but it was nervous making and it did not help with the worsening of my disease. I wish you good luck with it and I know others have said it helps them.

[kandykone1 in reply to Tina11762]

Oh my. Common side effect??

Did you start another DMT?

[Tina11762 in reply to kandykone1]

I don’t think it’s particularly common. There’s not much left for me to try. I have SPMS and I am basically a quadriplegic. My JC virus test came back a little high so I’m nervous about trying VUMERITY. My neurologist said that’s the only one left for me to try. Good luck with your infusions and keep us posted.

[crzbch]

I have been having hair loss. Not patchy, but definet major hair loss/thinning.