Does your Ocrevus Infusion Last for 6 Months?

[hairbrain4]

Those of you on Ocrevus, do you feel like it starts to "wears off" about month 4 or 5? I have had a rough 6 months. I had a reaction from Levothyroxine. It shot my thyroid up way too high. I changed thyroid medication & that helped. I then had some extended family problems happen which stressed me out. I have had one relapse and more flareups than I have had in the past 2 years. Then Monday we almost lost my mother n law and my sister n law didn't let anyone know for 18 hours after the fact. Needless to say, I was livid. She is the youngest out of 6 and thinks she is an only child. She neglected to think that having the whole family pray for their mom might be a little more powerful. So no surprise, I had a flare today. It has made me feel like I got run over by a big truck. (For those of you that are new to MS, stress is a major factor in MS relapses and flare-ups.) I'm hoping that if I hadn't been on Ocrevus my flares and relapses might have been worse. On the other hand, because of all the flares and relapses, it has felt as if Ocrevus has been working at all. I know after about 5 months with the two previous infusions it felt as if Ocrevus had "run out" before the end of 6 months. When I'm not stressed out, Ocrevus has been the best DMT I have ever used. Has anyone else felt that Ocrevus stopped working at about 5 months or less?

[robster1]

Absolutely! First of all Okrevus is the best thing that’s happened to me in my MS life. My last infusion literally lasted 5 months almost to the day. I asked my neurologist about it and he told me that quite a few had experienced the same thing. Anyway...he has changed my infusion schedule to every 5 months from now on. He has gotten no resistance from insurance across the board. So keep your fingers crossed!

Speaking of stress. I hesitantly turned the presidential debate on and 10 minutes later I turned it off. The vice presidential debate I ended up doing the same thing. When I start getting an anxious feeling I immediately change directions...no matter what. Hairbrain4 you like me know better about the stress. I’ll encourage you not to jump into stress filled arenas and I hope you’ll do the same for me. The serenity

prayer helps me through a lot of stuff. Lol

God bless ya my friend.

[hairbrain4 in reply to robster1]

Thanks! I will pray you stay focused. I generally stay away from stress. I live in the middle of a national forest in a small town without the hustle & bustle of city life. I am all too familiar with the Serenity Prayer & my higher power is Jesus. There are some things that can't be avoided when it involves family. Even though I turn my problems over to Jesus the feelings are still there & have to be faced & dealt with. Stress can't be completely avoided unless you live in a bubble. I refuse to live that way. I have MS it doesn't have me.

[robster1 in reply to hairbrain4]

Amen to all my friend.

[pamgarner in reply to robster1]

you are soooo correct,turn off the junk,even if i felt good why would i want to see screaming,yelling, and argumentive people?

[kdali]

I’m sorry for what you are going through and now you feel like crap again. The only thing I have found to alleviate the return of the suck during the wait for the next infusion is water fasting. My MD wrote for the drug early last time and the pharmacist wouldn’t allow it 😑 and then it was a few days later because the home health nurses were booked up. I wasn’t in any shape to be fasting at that time and it was a horrible month wait. I hope you get some rest and things start to feel easier for you 💐

[Juleigh21]

5 months is about right. That last month is rough!!

My doc moved my infusion up last time by 2 weeks and that spared me Solumedrol. We now have United Health Care and they won’t move it up by a day ( I’m hating on UHC). I guess I’ll have another relapse around Christmas and solumedrol will be coming my way again

[carolek572 CommunityAmbassador]

No, I don't get that, robster1 Ocrevus is doing it's intended job. Perhaps it's because I have PP'ms', I am not sure, but it is working.

[Cutefreckles72]

I have PPMS and next month will be my 4th treatment of Ocrevus. I don't know if its working or not. I know its not a cure for MS but I hope in some way it is slowing my progression of MS down.

[hairbrain4 in reply to Cutefreckles72]

I have RRMS and it's working for me but it seems to stop after about 5 months. It takes most of my MS symptoms away until towards the end of the 5th month then they start coming back.

[leapsnbounds in reply to Cutefreckles72]

I definitely feel the same way. But I can say that it has slowed down the number of new lesions for me. I am praying this will be true this week for me. I am due this week for another brain MRI and infusion. Prayers and blessings to you.

[pamgarner]

yes! i talked to my neurologist this week(virtual appt),and we discussed this,he said 15% of people that are on ocrevus say this, the only way to know is through a blood test at month 5 and see if you have any b cells depletion,that is the only way the insurance companies will approve it.bah-humburg, gotta fight for it earlier

[pamgarner]

ps. my dr. told me his patients refer to this as the "CRAP GAP", appropiate

[hairbrain4 in reply to pamgarner]

Yep!

[IFwczs]

Please see my post about this issue -

healthunlocked.com/mymsaa/p...

My neuro says, however, that the more time is between infusions, the better. He didn't encourage me going every 5 months (even though the insurance paid).

[hairbrain4 in reply to IFwczs]

I would think if in that 6th month we are having flares and relapses that they would want to do something about it. I know for me, I have felt terrible, worse than when I was on Techfedera which didn't work very well for me. Spending 10 hrs (includes drive time) every six months (for me and the person going with me) isn't worth having a month of feeling bad, dizzy, unbalanced, spasms, numbness, cog fog, head pain due to active lesions, etc. It is really disheartening because it had seemed to work so good for the first year. I'm getting my 4th dose at the end of October. I'm praying it doesn't interact with my thyroid meds (caused heart arrhythmia & my thyroid levels to rise) this time as that has been changed. This next dose will determine if I stick with it or go back to Copaxone, which has worked very well for me except for the deterioration of tissue where the injections are. To me that is the lesser of 2 evils.

[IFwczs]

Tecfidera didn't work for me either, but it wasn't supposed to since I have progressive MS. There was a post here that they have started doing Ocrevus infusions at home. It wasn't an option for me, so I didn't look into it further. But you should. And call Genentech.

[hairbrain4 in reply to IFwczs]

Yes, I saw that. I'm not sure my insurance will pay for it but I'm going to check into it if I don't have any reaction to my thyroid medication this time.

[leapsnbounds in reply to IFwczs]

Tecfidera did not work for me either.

[stam]

Yes! I'm having problems now. It did occur to me this morning that I may be dehydrated. I'm hoping consuming more water will help. If not I will talk to my doctor again. I have PPMS.

[JTZES]

My Neruoligist and infusion both have said it should be 5 months between infusions.

The insurance companies will not pay for that so they have to do it every 6 months.

[leapsnbounds]

I'm so happy that you said this. I've always believed it last for 4 months. My balance is more challenging than normal, more muscle weakness and more brain fogs than usual. This week I am due for my infusion. A long 6 months.