Ocrevus

[Neworleanslady]

Can anyone on Ocrevus please tell me how early you started feeling a crap gap? My infusion was a little over four months ago and my walking and vision is really bad. About a month ago I was diagnosed with Covid (I had been vaccinated it was a breakthrough case) and the walking got worse at that time and is still not good. I had a blood test and my B cells are absent so the ocrevus is working as it should and I have Covid antibodies from the illness (they didn’t have the equipment to test if I had antibodies from the vaccine). My doctor moved up my MRI till next week but I was just wondering if anyone has experienced a crap gap and had a blood test to see if their B cells had started replenishing

[tompumo]

Ocrevus dose lasts about 4 months for me. Last 2 months just have to sweat it out.

[Neworleanslady in reply to tompumo]

Thanks for that reply!

[Neworleanslady in reply to tompumo]

Have you ever considered switching to kesimpta so you can have monthly doses instead of having to wait six months?

[Neworleanslady in reply to tompumo]

Did you happen to have your B cells checked at that time to see if they were starting to re-populate?

[Mistery in reply to tompumo]

Talk to your Dr.. about 5 month treatment. That's what I'm on now.

[Doubled51]

4 months is about what mine lasted. But I haven’t had any test done. Saw my neurologist yesterday and he was just happy that it worked for 4 months. I’m scheduled to have my next one on August 25 th and im ready for it.😋😋.

Donnie

[Neworleanslady in reply to Doubled51]

Thanks! Have you considered kesimpta?

[Doubled51 in reply to Neworleanslady]

Wanted to give Ocrevus a chance first. Had my second infusion Friday so we’ll see how this one goes.

Donnie

[Neworleanslady in reply to Doubled51]

I changed my mind on kesimpta after reading the effects kdali experienced

[errolsweet53 in reply to Doubled51]

How is your progress..? And ask your doctor

[Doubled51 in reply to errolsweet53]

Progress is slow but it’s getting there. Had my second infusion Friday so we’ll see how it does.

Donnie

[Spanishpopmama]

I take Ocrevus and I have never had any the feeling that it did not last for the entire 6 months. How do you feel that it is wearing off? I am a little nervous because I am due for an infusion now, but we postponed it for a couple more months since he states that it does in fact stay in your system for longer than six months. I don't want to have it feels like it is not working!

[Neworleanslady in reply to Spanishpopmama]

My walking is all over the place and my vision is affected a lot more frequently

[Doubled51 in reply to Neworleanslady]

My walking should be in a comedy show it’s so bad.

[Neworleanslady in reply to Doubled51]

😂😂

[Tazmanian]

I am on Ocrevus and I have not had any relapses.

[Raingrrl]

I’ve been on Ocrevus for 3 1/2 years. I experience a crap gap anywhere from a month prior to just a couple of weeks prior. My fatigue is much greater with a corresponding drop in energy.

I had my B cells counted and my immune system tested one day prior to my last infusion. I posted about it here when I got the results. At that time there weren’t any CD20 B cells so my body wasn’t repopulating them at that point. The general antibodies of my immune system are very low too. I’m not sure if that’s related to Ocrevus or not. I have an appt in late Sept to talk to my neuro about that. I feel it makes me susceptible to just about everything.

[Neworleanslady in reply to Raingrrl]

I am curious as to what’s causing the symptoms since its not B cells. Your predicament sounds like mine. I’m sorry i don’t remember reading your previous post

[kdali]

I started to decline after the 3rd month and made no plans during the last 2 months. I’ve never had a cd19 check. My walking and spasticity did not improve by switching to Kesimpta.

[Neworleanslady in reply to kdali]

Aren’t you taking kesimpta? Aren’t ‘crap gaps’ eliminated because of more frequent dosing?

[kdali in reply to Neworleanslady]

I'm sorry I didn't see your reply a year ago. Yes, the dosing frequency should take care of crap gap issues, but I had problems with the drug and had to stop after 7mo.

[catdog111]

I noticed my walking started getting really bad about two months after my last Ocrevus infusion. It makes me want to discontinue it.

[Horse714]

If you go to ocrevus reviews I think by what people say about it will maybe answer your questions.

[Horse714]

Go to ocrevus reviews and you can read a lot of reviews about ocrevus and how they each responded to it.

[Neworleanslady in reply to Horse714]

Ima look at that today thank you

[Horse714 in reply to Neworleanslady]

You’re welcome ☺️

[kwhompus]

No " crap gap " for me this time around. Had my infusion on monday and noticed nothing unusual in the last month. I was able to go back to the gym in march and I do believe this has helped. Before my last infusion in Feb I had noticed what I thought were symptoms of " crap gap". Does going to the gym and swimming help? So many variables with this disease its hard to know for sure. We are all so different and the wheels of medicine and research move slowly. I have also noticed that anytime a virus ( cold or flu ) enters my body my symptoms worsen.

[Neworleanslady in reply to kwhompus]

I was thinking maybe the virus too although that was a month ago but it’s still happening

[Petdog in reply to Neworleanslady]

I'm on ocrevus too and this year felt really awful after I got the Moderna vaccine. I was infused 6 weeks after the vaccine. I am now in the 4th month after the infusion and finally feeling better. I don't know for sure if its do to the vaccine but I suspect it.

Also, my sister had COVID prior to be vaccinated and is still dealing with side effects of it. She does not have MS or other illness. Have you asked your doctor if it's effects of COVID?

My sister still gets headaches and fatigue months after COVID and is working with a doctor.

Good luck with all this. My thoughts are with you.

[Neworleanslady in reply to Petdog]

Thank you! My doctor suggested it might be residuals from covid. She is also recommending the 3rd booster vaccine to people on ocrevus. She said shes aware pf crap gap but feels 4 months too early for me to be experiencing it. But i knew I’d read about several people here on Ocrevus experiencing crap gap at at least 4 months if not sooner.

[Neworleanslady in reply to kwhompus]

Conrats on no crap gap and super job with all the hard work at the gym!

[Neworleanslady]

Thank you for your reply. I work out some at home. Stair stepper and treadmill and theraband and some of my sons weights. I switched from going to the gym because my walking was so embarrassing when i got hot

[kwhompus in reply to Neworleanslady]

I take my wheelchair to the gym. Having PPMS has meant swallowing my pride one symptom at a time. Let them stare !

[Neworleanslady in reply to kwhompus]

I haven’t told people yet that i have MS. People have noticed my walking limping an stuff but I’ve always said i would rather not talk about it. But that was pre covid and i could get away with it then. And pre Ocrevus. I look so bad now i would HAVE to say SOMETHING. I haven’t really seen anyone sice before covid either.

[mcknighm]

i just had my third infusion last week with ocrevus still not feeling anything. walking is still bad. blood results are all over the place

[kwhompus in reply to mcknighm]

I don't believe that Ocevus is going to make anything better just slow down the progression of MS in people w/ PPMS

[timothy228]

just got my 4or 5th dose ditto ++++ i told my dr same thing again 4 months and then hell was told their working on it? last2 months worse than nothing at all when it wears off 4 months is hell could hardly get up jet alone walk

[JMWCO]

Keep in mind Ocrevus is out of your system shortly after getting it due to its half-life. However the effects of b-cell depletion continues.

I think like many of us, we get added bonuses due to steroids, and added drug benefits.

Unfortunately I’m still perpetually fatigued even on O. When it gets close to infusion time I can tell I’m ready but as others said we are all uniquely different in how the disease effects us and recovery ❤️‍🩹

[mcknighm in reply to JMWCO]

the steroids doesn’t give me energy it has my heart racing

[JMWCO in reply to mcknighm]

I feel good for a day/two where I feel peppy but still tired…always tired.

[Jer29-11]

I’m thinking maybe it’s from Covid? I had Covid in February and although almost asymptotic, I was fatigued and could “feel” my MS for months after. It may just take some time for your body to heal from the virus. Kinda like MS, Covid is super weird!

[Neworleanslady]

I would live if it was just that. I’m due another infusion in September so if I’m still having all these problems after the infusion and I don’t have any new lesions i guess I’d assume it would be that. I also find that I’m super sensitive t heat but maybe i notice that since it’s so hot

[Neworleanslady]

Love not live

[Robsmom]

I've been on Ocrevus for four years now. I start feeling my MS symptoms mid into my fourth month. I get my infusion every five months and they can't do it any sooner than that. My walking starts to get funky and my mild tremors start. They do blood tests but I don't know the results, they say it shows the Ocrevus is doing it's job. I don't know if I'm ready to change unless my doctor recommends it, Ocrevus is the third medication I've been on since diagnosis in 2009.

[errolsweet53 in reply to Robsmom]

Get copies of your blood work sent to your email or doctor

[Robsmom in reply to errolsweet53]

Okay, thank you for the information. I never thought about it.

[Neworleanslady in reply to Robsmom]

I like that you do another infusion after 5 months! Did you request that? Or did your dr just order that?

[errolsweet53]

How long between infusion did you vaccinate.?

[Neworleanslady]

My vaccinations were in February and my 1st Ocrevus infusion was in March. From what I understand infusions are every 6 months

My blood test and dr and mri all in the same place. My dr has access to all my info. It’s nice because it’s less for me to keep up with and communicate back and forth

[Mollyabigail in reply to Neworleanslady]

Pardon this tardy response! One state over from you, in Mississippi, I had vaccinations in Feb. and my 1st Ocrevus infusion in March also. I have noticed a decline in my balance and gait for about a month now. Someone mentioned infusions every 5 months, as I have heard Dr. Aaron Boster say on one of his YouTube videos from Columbus, OH. Maybe in other parts of the country/world, that's the norm. But my insurance won't approve less than 6 months.

So, my less-than-stellar neurologist is young, healthy, inexperienced and well, apathetic to anything I say. Its to the point where, I question why I keep her as my neuro; but it's rural Mississippi, and neurologists are few and far between. When I ask her about my symptoms worsening, she says "That's just something you have to live with." Sorry, I rambled.

My prayers are with the New Orleans area the last few days. I hope you are safe! Hurricane Ida is bearing down on us now, in north Mississippi.

Come onnnn, September! We need our infusions! Blessings to you, Neworleanslady.

[Neworleanslady in reply to Mollyabigail]

Omg I’m living in mississippi now too in gulfport. Born and raised in NO. My family is sill over there and none have power. A couple of shingles off my moms roof but otherwise no tremendous damage. I moved to gulfport when i got married 17 years ago.

My MS doctor is at Ochsner in NO. Shes an MS specialist and i love her. I was diagnosed in pascagoula about 9 years ago by a neurologist, terry Millette, and he was a terrible doctor who has since been unallowed to treat MS patients. I am SO fortunate to have been accepted with this doctor i have now

[hairbrain4]

I've been on Ocrevus since 9/2018. It had been the best thing since sliced bread for me. It took away all my symptoms. Then after my infusion in 4/2020, It only lasted about 5 months. My symptoms started reappearing. Then after my 10/2020 infusion, it only lasted about 3 months. My last infusion was in 4/2021. It feels like it never happened. I still have fatigue & I have had a relapse with new symptoms. I am getting an MRI in September, I'm pretty sure I have some active lesions due to the new symptoms & the pains in my brain. I can usually feel when they are active. I haven't had my B cells tested to see what's going on.

[Neworleanslady in reply to hairbrain4]

Pains in your brain? Oh im so sorry to hear of all your horrible issues. Good luck on your MRI. Please let us know how it goes for you.

[hairbrain4 in reply to Neworleanslady]

Thanks I look at it as it could be worse. I'm not in a wheelchair or have to use a walker or a cane much. I am thankful for that.