ocrevus

[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

[robster1]

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 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 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 in reply to robster1]

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

[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 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.

[Juleigh21]

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 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

[kdali]

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 in reply to kdali]

right huh?we manuver so much all the time

[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 CommunityAmbassador]

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 in reply to Jesmcd2]

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

[rjoneslaw]

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

[pamgarner in reply to rjoneslaw]

thank you for passing that on

[erash]

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 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 in reply to pamgarner]

Mine mentioned mayzent but don’t like the potential risks

[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 in reply to IFwczs]

Please let us know what your Nuro says

[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 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 in reply to IFwczs]

Glad it was a productive visit 👍

[Ingris_waxwing]

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!

[pamgarner in reply to Ingris_waxwing]

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

[Juliew19673 in reply to Ingris_waxwing]

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...

[Ingris_waxwing in reply to Juliew19673]

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.

[Juliew19673 in reply to Ingris_waxwing]

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..

[Ingris_waxwing]

*weight gain

[pamgarner in reply to Ingris_waxwing]

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

[JTZES]

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

[pamgarner in reply to JTZES]

do you know why it would be beneficial?

[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 in reply to JTZES]

thank you

[TexasLawman]

I did mine earlier this month.

[pamgarner in reply to TexasLawman]

thanks

[Hidden]

Is there much nausea with infusion currently on 7mg aubagio

[Linda3579 in reply to Hidden]

I seem to get nausea with everything except the infusions.

[pamgarner in reply to Hidden]

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

[Linda3579]

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 in reply to Linda3579]

so glad it was good

[Hidden in reply to Linda3579]

Well I think the infusion helps with nausea

[mm1527mm]

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

[pamgarner]

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

[Hidden]

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

[carolek572 CommunityAmbassador]

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

[kdali in reply to carolek572]

Are we on the same schedule?!!!! 🥳

[carolek572 CommunityAmbassador in reply to kdali]

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

[kdali in reply to carolek572]

🥳🥳🥳

[pamgarner in reply to carolek572]

it is good to have great company

[pamgarner in reply to carolek572]

i am keeping on keeping on

[Sukie427]

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 in reply to Sukie427]

thank you

[Tazmanian]

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

[pamgarner in reply to Tazmanian]

glad to hear it!

[Ratsue]

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

[pamgarner in reply to Ratsue]

thanks for responding

[Juliew19673]

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!

[pamgarner in reply to Juliew19673]

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