Ocrevus

[IFwczs]

Who has experienced positive results from Ocrevus?

[cnichols]

I have done 2 1/2 doses and 2 full doses. I am lucky had no infusion reactions and feel great, next full dose 12-9-18.

[IFwczs in reply to cnichols]

Any improvements in your symptoms?

[cnichols in reply to IFwczs]

My only symptom is leg stiffness, I think Ocrevus has helped me to be able to still walk with a walker. I have had no new lesions since starting and no new symptoms. I am PPMS.

[jimeka in reply to cnichols]

That’s encouraging 🦋

[IFwczs in reply to cnichols]

Good news, thank you!

[anaishunter]

I've had my first round of Ocrevus (2 x1/2 doses) about 3 months ago with no side effects other than a recent sore throat that might not even be related to Ocrevus.

My symptoms are minor but I feel better overall - less tired, less leg pains or stiffness, brain fog is mostly gone... time will tell whether it's not a placebo effect.

The big item for me in the next MRI to check where my brain is at with the 20+ lesions they counted on the last MRI.

-------

Adding more as there are so many things that have been working better in part 3 months that I keep forgetting about them: bladder - no incidents anymore; tripping: I've not tripped in several months (my friends used to always make fun with me. Now they know and they also can't joke about it anymore); spending all day in bed on Sunday: no more. Amazingly, despite the bad situation I'm in (I've lost my job); I have no real anxiety. I just function better.

I've also lost 10 pounds...

[IFwczs in reply to anaishunter]

Good luck with the lesions! Please keep us posted. Yes, I also had 2x1/2 doses in August and had significantly more energy in August. But now it's back to where it was.

[kdali]

I’ve had the first two half doses and have had positive results above and beyond what I’ve experienced since going keto, and I really put it to the test the past two weeks. I also had my doses in August.

[Jesmcd2 CommunityAmbassador in reply to kdali]

You ok kdali ?? 🙁 🐝🤗💕

J🌠🎃

[kdali in reply to Jesmcd2]

Yes, I’m fantastic! 🤗I didn’t mean for that to sound negative. All I have left of my usual MS bag of tricks, right now, is central vision loss (which I barely notice now) and legs being slow or achy. 🎉🙌🏻☀️ (Did you miss my post about the hot tub?! A HOT TUB. I was fine! Not MS fine, actually fine!)

I’ve got back on keto though because I like having the extra extra extra energy and improved vision 👁

[Jesmcd2 CommunityAmbassador in reply to kdali]

That is awesome!!! kdali and yes I probably did miss it, sry.🙁 I'm sooooo happy for you!!!🤗💕🐝

J🌠👻

[kdali in reply to Jesmcd2]

Ty! 🤗 I’ll tag you, I loved the response from @erash 😍😍😍🕺🙌🏻🎉☀️and I think you will too!

[CalfeeChick CommunityAmbassador in reply to kdali]

kdali Maybe I missed it, but what is Keto?

[kdali in reply to CalfeeChick]

The ketogenic diet, it’s got a bagillion variations and I’ve tried several. You’re basically running your brain on fat instead of glucose.

[erash in reply to kdali]

kdali def. cont. to do all you can to help O work it’s magic...diet, exercise meditation...🌈

[kdali in reply to erash]

Yes! I’m not giving this up without a fight!

[erash]

After only the first 2 1/2 doses my results have been amazing. My balance and motor fatigue are better. When I walk with my husband, it’s “look, no hands!” I don’t grab his arm for support, I have no fear of falling, an on coming crowd of people doesn’t terrify me, I can side step people and walk on the grass, I have a bounce in my step.

My strength has returned. Shortly before my first dose I had lost strength in my right arm to the point I could only barely lift a 1 lb. weight and I could no longer do push-ups (I usually did 50 each day). Now I’m back to bench press 30 lbs and doing 50 near perfect push-ups.

It’s very easy to forget that I’ve had these dramatic improvements and measure every tiny stumble, every not perfect step, every tremor of my right arm as a potential regression.

I did not expect to see any results for at least a year and truly hoped for at best no further progression. My neuro had prepared me for very low expectations. I’m terrified the euphoria and the new (back to) normal won’t last.

Somethings have not yet changed: cog fog, bladder issues, fine motor coordination.

There are so many unknowns...will the improvements last, will the next dose mean more improvements? I’m not good with unknowns. Although MS forces you to be.

It may be blasphemy, but I’m praying to the Ocrevus god and trying to keep my sense of amazement and remain grateful, because I truly am 💕🌈

[IFwczs in reply to erash]

Wow, what an amazing and profound story! Thank you so much for sharing! It is so encouraging. I have had 2 1/2 doses, and there was an improvement in terms of energy. But not yet balance or strength. My next dose is on Valentine's Day. When is yours?

[erash in reply to IFwczs]

Great ❤️Day present for u.

My next dose is in March

I think the symptoms that improved were my newer symptoms. Lingering symptoms (to include neuropathy) are the older symptoms. Perhaps there’s more scar tissue in those areas of the brain 🤷🏻‍♀️

[IFwczs in reply to erash]

Do you have a lot of brain lesions? Most of mine are concentrated in the spine.

[erash in reply to IFwczs]

Many more c spine than brain...and plenty in the brain

Interestingly, after 12 years of semi, and annual mris with same radiologist, this ratio was first commented on this past August 🙃

[CalfeeChick CommunityAmbassador in reply to erash]

My active lesions are T2-T5. No changes in 20+ white spots in brain & no new ones. Hope I can get on a DMT..

[kdali in reply to erash]

I love this!! Ty for sharing the details 😍🙌🏻🕺

[Iona60 in reply to erash]

Wow! So glad that you are doing so great.

[erash in reply to Iona60]

How r u?

Painting at all?

I’m working on a painting for my mother’s new apt. In N.C.

[Iona60 in reply to erash]

Is your mom over the pneumonia and up at near the brother now?

[erash in reply to Iona60]

1 bro flew to Naples fri, the other will fly in to Naples Mon, and if all goes well, she and her puppy fly back to N.C. on Fri the 19th🤞

[Iona60 in reply to erash]

This is great news and will be a great relief to you.

[erash in reply to Iona60]

It will be a relief but it’s difficult not to think she would have done better closer to me...no doubt my MS would not have done better tho 😬

[Marcia2901]

erash, that's wonderful!🤗 Are you relapsing/remitting or PPMS?

[erash]

Either ppms or spms

[timothy228]

ditto for me no side effects and i have had the same good results i almost dont want to talk about it fear i will put a hex on it going Monday for my second dose first time in years and many docx i am really looking forward to it ?I asked about pos results and my doc said she had not heard of any improvement just to stop leisions but i had read people talking about improvement I noticed improvement in walking as soon as I walked out of docs and to my truck and yes i have noticed better vision and clearer thinking ?had been on tecfidera for years and never had any improvement God help us all and good luck to you p.s. I have no vested reason to say anything but the truth!I know we all would any improvement and this has helped me more than anything else.I just hope it lasts if not for ever then as long as it can Good luck keep fighting and go get em!

[IFwczs in reply to timothy228]

Thank you for sharing. Let's knock on wood. I had been on Tecfidera for years also with no results. But I think Ocrevus is the first drug meant to slow down the disability progression. Tecfidera was certainly not.

[jkdavid99]

My 2nd half dose was on Sept 26th. I feel so much better. More energy, I am walking without a cane. Eating normal, not much nausea and just a better attitude. After noon I start to get tired. Probably need a nap but no time. This all started at the beginning of building a house. Luckily 3 weeks until we move in. I am still off work until next month. Hopefully I will be better to go back to work soon. If cog fog would go away that would be great. Good luck everyone

Jenny

[IFwczs in reply to jkdavid99]

Good luck to you as well, Jenny! I too feel more energy but my gait issues haven't changed after the two half 1/2 doses yet. Good luck with a new house and going back to work also.

[timothy228]

yeppa going monday am for second dose i will let you know feel like asking maybe like can you infuse me with like a gallon of that stuff? you know what i mean take me back home again before this icky M.S. for sure have seen improvements i want more i too was told by my dr not to expect anything and i didnt but like a alot of others there is no way around it i have had improvement i am happy with the way its going and if nothing gets any better i am still better than i was before the ocrevus

[IFwczs in reply to timothy228]

Will keep my fingers crossed! Let us know how it goes.

[hairbrain4]

I have had 2 1/2 doses also. The last one was on 9/25. I haven't had any side effects, not even a needle mark on my arm where they did the infusion. I didn't even bruise on my hand where they blew the vein on the first attempt. I have much more energy and noticed that I am able to do more outside in the sun with no flare-ups. My legs aren't cramping up like they were before the infusions. I generally feel better all over.

[IFwczs in reply to hairbrain4]

More energy is definitely what I feel. This is important. Thanks for sharing and great news!

[awestinsmom]

This is my journal entry from my two half doses:

I was very nervous about my first infusion on September 19th. Pre infusion I was given solumetral,(sp) a Benadryl pill and Zofram to prevent nausea. About an hour into the infusion my throat became scratchy. I told the nurse and she gave me more Benadryl, which took care of it. I had to use the bathroom almost every hour. The infusion took four and a half hours. No side effects two weeks out.

October 3rd the second part:

Got at the infusion center about ten minutes late. It was raining cats and dogs in Arlington, TX. At 8:30 I was given two Tylenol pills, intravenous steroid, Zofran and Benadryl. Infusion lasted four and a half hours and waited an hour before leaving. Changes I have noticed are that I had two good days in a row. Something that had not happened since I was diagnosed! So far no reaction.

My next infusion is April 2nd, 2019.

[esraolgungun]

so happy for you.wishing more healtier days.what a encoure story☺️