Do you feel less tired after ocrevus?

[mm1527mm]

Before my first episode with numbness the only other symptoms were fatigue just feeling very tired and not wanting to be out in the heat. Wondering if ocrevus has helped at all with fatigue. Thanks for the info! Newly diagnosed and this group has been great

[rjoneslaw]

I has helped me I'm less fatigued and I'm able to handle the heat

[mm1527mm in reply to rjoneslaw]

Thats great to hear. Before I had my episode in July i just felt like the heat was too much. And even the entire summer I just have not wanted to be outdoors for very long.

[anaishunter]

Absolutely. I had the 1st 2 doses last July (2018) and the first full dose this august. And there's no question that it helped with fatigue and heat: I still need to sleep a lot (9 hours or so) but I get out of bed and through my day fine. Prior, I would sleep 11/12 hours and still feel tired for the remaining of my day.

Heat - while I'm still avoiding heat and prefer cooler temperature, I am not impacted by heat any longer.

[mm1527mm in reply to anaishunter]

Great to hear!

[Iona60]

Ocrevus is helping me with heat, but not as much as everyone else claims with fatigue.

[Juliew19673]

No - I've had 3 full doses and still am exhausted, have had 2 go part time at work; but it has helped immensely with ALOT of other issues (I can feel my feet and legs again) and think it's doing its job of shrinking the lesions! I'm sold on this treatment!

[mm1527mm in reply to Juliew19673]

Thats so great to hear!

[erash]

Noticeably

U til I hit the crap gap, @ 4-6 was before the next infusion I need more coffee, more Nuvigil, and have quicker muscle fatigue

[ahrogers]

My initial symptoms were also decreased sensation and fatigue. I would also get right foot drop if my body temperature went up but back then it took a lot longer for that to happen- initially 45 minutes of moderate intensity exercise before it happened. Over the 5 years since I was diagnosed that time slowly decreased and weakness in my right arm and leg have increased

I started Ocrevus 3 years ago on clinical trial. My symptoms have not improved but have definitely slowed down progression. Stressors on my body like temperature or having a hysterectomy continue to temporarily worsen the symptoms.

I know some people have seen improvement in symptoms with Ocrevus. I think it may be as much as 30% of people do. I would have loved that but I am still happy to find something that is slowing it down because Gilenya and Rebif did not.

I hope you are one of the lucky ones!

[mm1527mm in reply to ahrogers]

Im sorry to hear it did not help as much for you. Glad to hear it slowed progression. How long ago were you diagnosed?

[ahrogers in reply to mm1527mm]

I wasnt expecting improvement so was happy to see it helped slow it down 😁 I was diagnosed in mid 2014, had symptoms for less than a year that I ignored for over 6 months

[mm1527mm in reply to ahrogers]

Glad to hear it helped stop the progression that is good news!

[carolek572 CommunityAmbassador]

Just had my 4th infusion at the end of August, and I have had more energy this past week.

[mm1527mm in reply to carolek572]

So glad to hear!!

[bavery207]

mm1527mm I used to feel like I had weights on my ankles and wrists, but that feeling has gone as has some of my fatigue since having been on O. I have never been bothered by the heat sensitivity ( I'm usually cold) so that is not an issue for me.

[mm1527mm in reply to bavery207]

Great to hear. How long have you been on O?

[bavery207]

mm1527mm Aug. 1 I had my 4th FULL dose. I have not had adverse reactions except, one type of my white blood cell counts has slowly but steadily been going down. If it continues, my neuro. may take me off O. 'til that count goes up again.

[mm1527mm in reply to bavery207]

Thanks for sharing. Hope it goes back up 🙏