ocrevus: It just occured to me that I have... - My MSAA Community

My MSAA Community
5,728 members13,192 posts

ocrevus

pamgarner
pamgarner

It just occured to me that I have an infusion set up for july 16,has anyone done this during the pandemic and did they give you any special aftercare instructions since this kills some immune cells?good news hubby can go with me for treatment ,at 1st it was drop off and pick up

59 Replies
oldestnewest

Wow! Mine’s the 17th. I honestly don’t know. I’m also scheduled for my brain, cervical & thoracic MRI next week. That one is about 2 1/2 hours. I always dread “the tube” w/this one. I guess I need to contact my neurologist. Hmm...

pamgarner
pamgarner
in reply to robster1

i just know up to this point before virus,they told me is my immune system will be down but treat it like a regular flu season,take those precautions,it takes about6 weeks to build back up.I also am being set up for mri,you certainly have a bunch!

robster1
robster1
in reply to pamgarner

You’re right about the immune system being easily compromised. I’m definitely going to email some question to my Doc.Yeah I’m very uncomfortable w/the long duration MRI, but they ease my anxiety w/a one shot prescription of two little pills. I’m very thankful.

pamgarner
pamgarner
in reply to robster1

i know right?be kind to the people who have the drugs:)

YLGram
YLGram
in reply to robster1

I have broken mine up into two different ones on different days. The meds didn't help. The MRIs make my right leg jerk like crazy and they strap my legs together to keep me still. Yuck

robster1
robster1
in reply to YLGram

I certainly feel your pain. I absolutely despise MRIs! I thank God that I’m able to go once a year and “get er done “. The only way that can happen is w/meds.

My next ocrevus treatment is the 16th also. I’m a little nervous. I think we’re going to have to be very careful afterwards!

Do you feel like the meds are pretty much gone now? I’m having a lot of symptoms now and am needing a lot of meds to manage my MS symptoms right now. I had a nasty relapse in January waiting for the meds.

pamgarner
pamgarner
in reply to Juleigh21

yes,I am feeling it,i talked to dr about that and he toldme alot of people feel that and ocrevus told me that too.dr said you can have it sooner but you have to have a blood test to see if med is still active that is the only way theiinsurance will pay for it and your dr has to be on board

I got mine right before our schools closed. I expect to get my next one as usual. Every season is flu season to me.

pamgarner
pamgarner
in reply to kdali

right huh?we manuver so much all the time

kdali
kdali
in reply to pamgarner

Yes, but also people are gross and have obviously just recently figured out what soap is...and I don’t expect the few who have started washing their hands to keep it up 😂🤢

Jesmcd2
Jesmcd2CommunityAmbassador

I had mine last month pamgarner and the only special instructions so speak was to wash hands, wear mask, and stay away from sick ppl. Besides the mask, no difference.

But, that's My Dr. 🤗💕🌠

pamgarner
pamgarner
in reply to Jesmcd2

that is good,i starting to think it is the only answer, where is the med for pandemic!

I know people on another form who has gone and they didn't have any problems

pamgarner
pamgarner
in reply to rjoneslaw

thank you for passing that on

I am discussing via virtual appointment with my neurologist this week. My next infusion is scheduled for 30 July.

There are a number of things that I am concerned about to include the moderate risk associated with B cell depletion but also the effectiveness of upcoming vaccines to include for regular flu and potentially for Covid in the near future.

Also I am secondary progressive MS and have recently had some progression and I’m wondering how effective Ocrevus still is for me. I guess you only know when you stop it.

Also the infusion of the steroids with the Ocrevus is additional risk because of lowered immune system.

Must weigh pros/cons for yourself.

I always go to an infusion center and I’m sure that they’re abiding by pandemic precautions. I wonder is it safe for or less safe having a home health nurse come to your home?

No easy answers 🤷‍♀️🤷‍♀️🤷‍♀️

pamgarner
pamgarner
in reply to erash

this stupid pandemic has so many more concerns,my brain is already full,i am in secondary also,i can't tell if this is working or not.my dr says no new lesions is success and no new symptems.going to talk to him about maybe another med after this been 4 years

erash
erash
in reply to pamgarner

Mine mentioned mayzent but don’t like the potential risks

IFwczs
IFwczs
in reply to erash

I am talking on the phone with my neuro tomorrow. I used to be on the same Ocrevus schedule as you. I have cancelled all of my appointments this year.

I was surprised at my last appointment on January 30 that the usually packed infusion room was completely empty. Now I know why.

I also believe that these doctors who say Ocrevus does not present a problem during the pandemic are irresponsible and have their own agenda.

erash
erash
in reply to IFwczs

Please let us know what your Nuro says

IFwczs
IFwczs
in reply to erash

In 6 years I have known him, he has said absolutely nothing. So I am not going to ask him, I will just tell him I am going to wait till this is over.

IFwczs
IFwczs
in reply to erash

I have posted my summary of today's phone visit with my neuro. Please let me know if you can't find it.

erash
erash
in reply to IFwczs

Glad it was a productive visit 👍

Just had my infusion.

Nurse practitioner wore mask, as did I, and more hand sanitizing than normal. Other than that not much difference from previous infusions.

I didn’t take the steroid infusion with Ocrevus this time and no additional side effects. I decided no steroids to try to prevent/reduce gain associated weight previous infusions. It’s been 48 hours since infusion and so far so good!

thanks for info,and glad for you no side effects,why did you decide no steroids?

Curious, I was wondering if you could get the Infusion without the steroid; it took me a year to talk them down on taking the Benadryl...

It was not a welcomed request since the Ocrevus drug manufacturer has established protocols to administer steroids with the infusion but my neuro is amazing and accepted my wishes. He told the infusion center no Steroids and they followed his orders. The infusion center told /warned me that if I show any signs of reaction they will immediately and without hesitation, admInister the steroids. I was good with that compromise. It’s been a week since infusion and with the exception of a slightly scratchy throat and some annoying itching, I do not have any serious side effects. Also, no weight gain. Trust me when I say the weight gain is not about being vain. An extra 10-20 lbs greatly reduces my ability to walk and excerise and I feel so lethargic, that is the only reason weigh management is critical to how I live with MS.

In the beginning I lost 20lbs; Not sure if Ocrevus or Provigil were to blame. But I think next time I will try to forgo the steriods..

*weight gain

i try not to pay attention to that it is stressful enough

I had mine 3 weeks ago with no issues. My Neuro actually feels it could be a beneficial fighting off the coronavirus.

pamgarner
pamgarner
in reply to JTZES

do you know why it would be beneficial?

JTZES
JTZES
in reply to pamgarner

It is like an autoimmune disease how it attaches itself to the lining of your lungs and starts doing damage there. Just like MS and your brain.

pamgarner
pamgarner
in reply to JTZES

thank you

I did mine earlier this month.

thanks

Is there much nausea with infusion currently on 7mg aubagio

Linda3579
Linda3579
in reply to MSSurvior

I seem to get nausea with everything except the infusions.

pamgarner
pamgarner
in reply to MSSurvior

i haven't had any but i have a stomach of steel

I had my infusion about a month ago. I was a month late because I was nervous about covid. They were so careful there. So far I haven’t had any problems.

pamgarner
pamgarner
in reply to Linda3579

so glad it was good

MSSurvior
MSSurvior
in reply to Linda3579

Well I think the infusion helps with nausea

i had mine june 1. Was supposed to get it end of march but did not due to covid. Hubby was not allowed in. Wore a mask like the nurses and felt comfortable. Glad i got it done

if my hubby couldn't come,i would delay it i need him also to push me in transport chair some days are good some are not

Thanks for the input the pills do give nausea I think the infusion has less nausea sideeffects

I had my last infusion at the end of February. I have been okay, and my next infusion is scheduled for the end of August. I have my concerns, pamgarner but I will always differ to my neuro because they know best, correct? Keep Smiling :-D

kdali
kdali
in reply to carolek572

Are we on the same schedule?!!!! 🥳

carolek572
carolek572
in reply to kdali

You, me, and I believe erash , are on the same schedule, kdali Keep Smiling :-D

kdali
kdali
in reply to carolek572

🥳🥳🥳

it is good to have great company

i am keeping on keeping on:)

Hi, pamgarner . I was dx'ed with SPMS in April but my neuro didn't want to start Ocrevs during the pandemic. In conjunction with my researching both the efficacy and safety of Ocrevus, among other meds for SPMS, I spoke to the neurologist who dx'ed my RRMS nearly 10 years ago and treated me until we relocated. He said that the data so far do not indicate a greater risk for COVID-19 for Ocrevus patients than the slightly greater risk that MS patients have in general. He said to practice the currently advisable precautions (masks, social distancing--there is controversy about gloves) and it should be okay. Good luck!

pamgarner
pamgarner
in reply to Sukie427

thank you

I am on Ocrevus. I had my infusion two weeks ago and aside from the masks it was the same as usual.

pamgarner
pamgarner
in reply to Tazmanian

glad to hear it!

Yes, had my infusion on May 6th, no problem.

pamgarner
pamgarner
in reply to Ratsue

thanks for responding:)

I just had my 4th round on 6/16; not that many patients this time. Afterwards I battled with the inability to sleep for a day, then I was just exhausted for 4 days and immediately next came the Flu..

Today I feel well but my sleep rythm is still off. Between M.S./Corona or Menopause, I'm not sure which is the culprit

But, I survived and I have faith in the rest you!

so sorry what a rough road,i don't know about eliminating steroids but i am allergic to benedryl so they make me start taking zertec 1 week out.i have some side effects during treatment an instant sore throat and this heads them off ,haven't had them since

You may also like...