Ocrevus Duration: Does anyone on Ocrevus... - My MSAA Community

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Ocrevus Duration

hairbrain4 profile image
hairbrain4

Does anyone on Ocrevus have problems during the last month before your next infusion? With my last 3 infusions it seems like the medicine "runs out" about the 2nd week of the last month. This time I have had 3 short exacerbations in 2 weeks. 2 of them had extreme fatigue & new muscle cramps on the outside of my calves going down to my foot, usually they happen on the back. This month has been the worst of all my infusions. The good news is the other 5 months have been MS symptom free.

44 Replies

People have told me they call that the crap gap. I just had my 1st O infusion and i am expecting this will happen to me in a few months

Remember everyone is different. Yoy may be one of the lucky ones that don't have any problems with it all. Think positive!

I hope!!

kdali profile image
kdali in reply to Neworleanslady

I don’t think it’s a high percentage that have crap gap, I wouldn’t worry about it!

Neworleanslady profile image
Neworleanslady in reply to kdali

That’s great to hear!

Yep, happened to me around the 4th month but it was gradual. I’ve heard of some patients getting infusions every 5 months, or getting a dose of steroids on the 5th month when their insurance denies more frequent dosing. I wasn’t offered either, but was offered Kesimpta instead and I switched.

hairbrain4 profile image
hairbrain4 in reply to kdali

I checked into Kesimpta & my insurance won't cover it yet. Maybe next year.

kdali profile image
kdali in reply to hairbrain4

You can call Alongside Kesimpta if you really want to try it. They fight with your insurance and cover copays. A 2 week crap gap wouldn’t be enough to make me switch, but there are other reasons people are changing.

hairbrain4 profile image
hairbrain4 in reply to kdali

How are you doing on Kisempta? Any problems?

kdali profile image
kdali in reply to hairbrain4

Well, so far I have no new lesions! I’ve had a flare and have another MRI to go, and will see a MS specialist in a few months. I don’t think it’s drug change related since I was established on B cell therapy. The first month of K I had some hair loss that stopped, second month some cycle changes that I hope is over. My leg issues are more noticeable, but that could also be flare related. Some people report issues with only one of these 3 things, but it’s few from the comments I’ve read.

Neworleanslady profile image
Neworleanslady in reply to kdali

How do you like the kesimpta? Does it do as well as Ocrevus (in the good months post-infusion)?

kdali profile image
kdali in reply to Neworleanslady

I really like it! I have had that awesome post infusion goodness once and no, this isn’t the same. I’d say it’s close, without the looming crap gap. My experience has only been for 4 months and I’ve been in a horrible flare for 3 of those. My cognition has remained better than my best on Ocrveus, and the rest I’m just not sure about until I get over this hump and have some normal months on it.

There are Kesimpta groups with people making the switch every day and I think it’s a good idea to read their posts to see what normal MS people say 🤣

I only have 8 more months of copay coverage from Novartis 😭

Neworleanslady profile image
Neworleanslady in reply to kdali

Idk what you mean about 8 more months of copay coverage? I do hope you get into a good spot very soon with your MS. The good cognition must be wonderful.

kdali profile image
kdali in reply to Neworleanslady

Novartis will pay copay coverage for a year, after that its $1300/mo, but Ocrveus is $0. Ty!! It is, but I’m also figuring out just how bad it’s been now that I can think clearly 😱 I really thought my mom was starting dementia because of the things she said I said and I knew I didn’t 🤦‍♀️ But it wasn’t her with the memory problem 🤦‍♀️

Neworleanslady profile image
Neworleanslady in reply to kdali

Whaaat??!! Who can afford that?!

kdali profile image
kdali in reply to Neworleanslady

Ikr? Does it also come with a car? 🤯

Neworleanslady profile image
Neworleanslady in reply to kdali

Really! That could be a new car payment!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

I'm the opposite I think... I feel like crap for months then feel better.. anyone hear of that?🤗💕🌠

hairbrain4 profile image
hairbrain4 in reply to Jesmcd2

I feel really good after 2 weeks for about 3 months then it starts wearing off till there's nothing the last 3 weeks. Im not doung the steroids with my next infusion in a couple of weeks to see how it goes. Steroids mess with my arythmia & blood pressure.

Iona60 profile image
Iona60 in reply to Jesmcd2

I'm the opposite too Jess. It has taken a good 4 weeks for my last O infusion to kick in.

Yes...I experience the crap gap on Ocrevus. I did the same on Tysabri so I knew what it was when it happened the first time on Ocrevus. I hate it because I have zero energy until the next infusion. I’ve been on Ocrevus for 3 1/2 years and was on Tysabri for 5 years.

Sorry that you are going thru that, but I have NOT yet June will be my 6th. I worried at first that something would happen but it didn't & so far I'm doing good, when I was on Tysabri by the 3rd week I would be dragging very bad it surprised me that I wasn't! Hope it continues to not happen.

my dr. does refer to it as the crap gap,you can get a blood test before the last month to see if meds are still active in your system,if not insurance will approve for you to get it at 5 months, ocrevus is aware too.

hairbrain4 profile image
hairbrain4 in reply to pamgarner

Thanks I will talk to my Dr about that.

also my dr said it is about 15% who have problems with that

good luck with infusion. They may have to readjust your dosage like my neurologist had to do.

I receive an Ocrevus infusion every 24 weeks vs 6 months -- believe it or not this does cut the time between infusions by a few weeks and was done to help reduce my crap gap. I have had my B cells checked 1 week before the next infusion since I had some questionable spots on my last 2 MRIs. The results were that my B cells were low, t cells were a little high which is exactly what was expected. The probability of having new lesions is near 0 and the marks on the MRI are probably just artifacts. Of course, my general neurologist and MS specialist have no idea why people on O experience the crap gap. They suggest I stay on O since it's the most effective. We have discussed switching to a treatment that is more frequent like Tysabri or ditching everything and going to Lemtrada. I'm also trying Ampyra right now to see if will help one of my legs and possibly help bridge the crap gap (drug is meant to help mobility and some people have noticed other improvements while on it) -- it's a crap shoot!

I agree that it is probably the best on the market. I would probably switch to kesimpta except my insurance doesn't cover it yet.

Good morning hairbrain4!Sorry forty being completely out of the loop for awhile.

I started having issues after my 6th infusion. My neurologist has got me on a 5 1/2 month rotation now and my insurance is ok w/it. Dr told me there are some like you and I that Okrevus simply runs out around the 5 month mark. I still have issues for a couple of weeks at the end of my cycle. Insurance won’t go for the 5 month rotation...so there’s still 2 weeks of overlap.

2 weeks are better than a month! I hope you can get some relief my friend.

hairbrain4 profile image
hairbrain4 in reply to robster1

That's a thought. Something to talk to my neuro about. Thanks!

That is great that you are symptom-free for five months😃. I unfortunately have had some things get drastically better and more so with each infusion-since 2017 but still fight mobility issues on a daily basis (I have been on Ampyra for over 3 yrs-I can tell when it’s time for next dose). I have too found that anywhere from six weeks or so til my next infusion I do start feeling weaker. My neurologist swears that it has to do with some thing else weather, sleep, diet, dehydration etc. etc. I myself think it has to do with the dosing schedule but what are you gonna do when your neuro doesn’t believe it?

Switch neurologists 😁

In all seriousness, my general neurologist didn't know about crap gap but when I mentioned it to my MS specialist he knew. Find someone that knows more about the medicine before you play the switching game. My MS specialist said that because I'm on O, there are limited options especially if you are JC positive.

I'm curious - how do you like Ampyra and do you think it has helped any symptoms that return when your crap gap sets in? As you might have seen above, I just started Ampyra.

I do see a MS specialist! That’s the irony of it all. Sometimes it’s too much about the book knowledge than how I feel. I’ve been on O since it came out & initially there was no such thing as crap gap. So when I explained my symptoms it was attributed to other things. Ampyra does help some. I can tell when its about time for my next dose bc my walking declines & about a 1/2 hr-hr later it improves. It certainly doesn’t prevent me from getting looks or give me the ability to walk a straight line. Just a bit less effort to get from point a to point b unassisted.

I hear you! I have been on O since it came out as well. I kept worrying that what I was feeling was a flare or relapse but there was no evidence of that. The general neuro was telling me this could be my new normal and when I feel good that's just the steroids I get at the O infusion making me feel good for a whilr. After about a year on O the general neurologist I was seeing at that time (I've had 3 because they keep leaving my medical group) moved my infusions from every 6 months to every 24 weeks which meant cutting down the time period I feel bad. About 9 months ago I was in another online MS forum and there was a very small conversation about crap gap - I just about hit the floor! Everything they were talking about was what I was experiencing. I've now educated 2 general neurologists on crap gap and at least my current one took the time to look it up and see that it was real.

My crap gap starts a little earlier than most, about the 4 month mark. My body starts feeling heavy and my right leg starts to not walk as well as the left. That's where I'm hoping the Ampyra can help. I'm not looking to walk down the catwalk or run a marathon, like you I'm just looking to make things a little easier. I've been on Ampyra for about a month and a half and I have noticed some cognitive improvements which has been a great surprise. Glad to hear that Ampyra is working for you!

yeppa me too been on it 2 yrs same nonsense right around 5 months its like its all used up

YES! As a matter of fact I get my infusion every 5 months because the last few weeks before my infusion my MS wreaks havoc. I'm patiently waiting my next infusion on Monday and again the last few weeks have been difficult. And as you said, other than those last few weeks I feel really good on Ocrevus.Waiting to talk to my Neurologist about it.

kdali profile image
kdali in reply to Robsmom

How long have you been on every 5mo infusions?

Robsmom profile image
Robsmom in reply to kdali

I think almost 2 years now. I've been on Ocrevus almost 4 years.

kdali profile image
kdali in reply to Robsmom

Thank you!

I have been on Ocrevus for two years. I had never been told about feeling better after an infusion. I have no new lesions. I get my next infusion at the end of May, I will pay closer attention to how I feel afterwards.

I have never noticed a significant worsening of symptoms in the weeks before an ocrevus infusion, nor have I noticed any improvement immediately after an infusion. I am now a month overdue for my infusion due to having covid and I do not know when I will be able to get it again 😟

Sorry to hear you had covid-19. I've been fortunate to not even have had a cold in over for years. I keep my hands washed when in public.

This is my first time hearing about the "crap gap" In May, I will have my 5th Ocrevus infusion and so for I haven't had any problems. Just pray that its working cause it is very expensive for a small bag twice a month.

I hadn't heard of the "crap gap" either until now. I had just called it up to my thyroid problems. I'm glad it's not my thyroid causing it.

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