Symptoms Worse After Ocrevus

[dallas343]

Received my seond initial dose in May 2018 and my symptoms are worse - balance, walking and pain.

[kdali]

Nooooo! I’m sorry to hear this, what does your neuro make of it?

[dallas343 in reply to kdali]

Believe it or not he is not sure I had an appointment with him last week so we’re going to follow up again in two weeks . He is now testing me for Lyme and rheumatoid

[kdali in reply to dallas343]

Jeez, none of those sound good either ☹️ Please keep us updated and let us know how it goes in two weeks and how you are feeling. 🤗

[Iona60]

Uh oh. Wondering what the neuro will say and if you will have any changes in an MRI.

[dallas343 in reply to Iona60]

I haven’t had an MRI since the initial treatment and the second treatment scheduled for November so I’m sure he’ll be giving me a prescription for that to have by August to see if there’s any difference

[jimeka]

Hello dallas343, sorry that we have to meet under such circumstances. Can I ask what type of ms do you have and I am sorry that Ocrevus appears to have made your symptoms worse. As the others have said, get a hold of your neurologist and make him aware of how you are. I do hope that things do improve for you. Blessings Jimeka 🦋 🤗

[dallas343 in reply to jimeka]

I have RRMS and as I’ve indicated in the other responses I will see the neurologist again in two weeks and I guess the next MRI will tell but at this point clearly this might not be the right option.

[Jazzyinco]

I am so very sorry that it's not wrking out for U too, 😱😥😖 we here all hope & Pray it does get better for u, def. Talk to neuro. Bout this, what Type of M,S. Do u have? & Keep us posted please!😍😻💪Stay strong k.Blessings to u! ---Jazzyinco

[dallas343 in reply to Jazzyinco]

Thanks so much for your reply and support . I have RRMS and I will definitely keep you posted thanks again

[Jazzyinco in reply to dallas343]

What?! Ocrevus is usally only for Progressed. U should chk. Out some great diet chngs. Lots of Vit. D3 up to 10,000 ius supplimenation & B12 up to 2,500 mgs to keep it @ bay!! 💜💙💛😻😍 & to keep from remission. Blessings---Jazzyinco

[dianekjs in reply to Jazzyinco]

Ocrevus is FDA approved for both RRMS and PPMS. It’s increasingly being used as a first-line treatment in RRMS because of its success in halting or slowing progression, and many JCV+ patients on Tysabri and other higher risk DMDs are being moved over to Ocrevus. 😊

[bxrmom]

I'm sorry it's not working for you. It's time to contact your neuro if you haven't done so already. Keep us updated what your neuro says.

Jessie

[Gma06]

I feel the same on Ocrevus. Go to neuro next week and see whar he says.

[erash in reply to Gma06]

So sorry to hear this both dallas343 and Gma06

What have ur experiences been @gma06 and how long have u been on Ocrevus?

[Gma06 in reply to erash]

I am scheduled for first full infusion in September. Before Ocrevus, I did not need assistance to walk. Now, I have to use a cane. My numbness and tingling that has always been there is definitely more severe. I itch all over like crazy. I will scratch until I draw blood. Losing lots of hair. Neuro scheduled me for mri to compare to my last one which was in November ( I started Ocrevus in March) . I am not giving up yet though. Better than shots!

[erash in reply to Gma06]

Wow! Hang in there. Hope the MRI can help point you in the right direction.

[dianekjs]

Ocrevus is supposed to take at least 3 months to really start to kick in and have much effect, and quite possibly a good bit longer than that. There are a couple of things that could be going on here: the infusions and new treatment may have triggered a flare or relapse in the same way that any medical procedure, stress, or trauma can in someone with MS, or you could have already been entering or about to enter a relapse when you started treatment. Definitely let your doctor know how you’re feeling, but I know that my MS specialist/neurologist would say that it is way too soon to be able to evaluate the effect of the drug at this point, that it hasn’t had nearly enough time to work yet. A short course of steroids might help calm your symptoms near-term. Hang in there and try to be patient. My infusions always cause a rough setback before things stabilize and then improve.

[erash in reply to dianekjs]

Thank you dianekjs

For the level headed response!

[Oneson in reply to dianekjs]

I also seemed to be doing worse after my second Ocrevus infusion. This new neurologist [ that Medicaid forced me to see] basically said that is the nature of my progressive MS. which progressed a lot in the 3 years I was waiting for Ocrevus to come out. she does not think that Ocrevus will do anything for me. She has nothing positive to say. I really don't like her but I don't have a choice.

[kdali in reply to Oneson]

Oneson Eew, just eew. I’m sorry you don’t have a choice and I hope you do stellar in spite of what she said she believes. Theres no reason to give up hope and I’ll never understand clinicians who try to take that hope from their patients. Thank you for letting us know how the second one went, I’m taking notes 😵

[Jj12010 in reply to Oneson]

Well I would tell her “way to be positive” You hang in there and fight. Our disease is so hard to understand I don’t see how she can say that I mean some people doing great others are not if doesn’t help try something else. Ocrevus is 5th drug for me, so just keep going forward

[dianekjs in reply to Oneson]

Oneson , I’m sorry that your neurologist isn’t more positive and encouraging, that’s not very helpful. I wonder if she’s even read the trial data and extension studies - all do document benefit for progressive as well as relapsing MS. However, and this is important - the primary goal of Ocrevus, particularly in progressive forms of the disease, is to stop or slow disease progression, which it excelled at in the trial data. The statistics showing its ability to inhibit the development of new lesions were truly impressive and blew the competition out of the water. That effect alone is absolutely huge, so remember that the drug is working in the background to control disease progression - with or without symptom improvement, which will be different for everyone. Best of luck to you. My second full infusion is tomorrow (one year)! 😮

[kdali in reply to dianekjs]

Yes! Thank you dianekjs Good to be aware, y’all remind me if I forget when it’s my turn 😵

[Iona60 in reply to dianekjs]

My neurologist indicated that any positive results may not happen for six months.

[Oneson in reply to Iona60]

I thought I read that, but the doctor did tell me that. Thank you I had forgotten.

[dallas343 in reply to dianekjs]

Thank you so much and you’re probably right . the doctor didn’t mention it to me though that it would take a while but that makes absolute sense. I don’t want to take another course of steroids because I’ve had two courses along with the treatment so I might have to just wait it out. I have an MRI close to my next date which is in November and see if there are any changes on the MRI. thank you again

[dianekjs in reply to dallas343]

The steroids you received with your induction course of Ocrevus (the two 1/2 doses given two weeks apart) were very small doses of solumedrol, usually about 150 mg. each as part of the pre-meds. For comparison, the IV steroids given to control relapses is often closer to 1,000 mg./day for anywhere from 3-5 consecutive days. If your symptoms don't settle down soon or you feel you need treatment, I wouldn't concern yourself too much about what you received with Ocrevus, that amount is pretty insignificant in the overall scheme of things. In other words, you have some wiggle room to play with if need be.

[dallas343 in reply to dianekjs]

Thank you so much for the clarification . I’m seeing my neurologist this week and curious to see what he thinks

[Lmanuel75 in reply to dianekjs]

Gma06 dallas343 hello, I know this is an old post but I was wondering if you would like to give an update on your Ocrevus experience? I had my first half dose last week and it brought on a lot of dizziness and my walking feels weird now. This wasn’t happening before my infusion.

[dallas343 in reply to Lmanuel75]

I didn’t respond in that way. It just wasn’t helpful at all and in fact overall I seem to have gotten worse and have many more issues with ballots than when I started the treatment. I haven’t been on any MS medication Since then I don’t seem to respond to any of the medication

[Lmanuel75 in reply to dallas343]

Thank you for the update.

[anaishunter in reply to dianekjs]

agreed that with the various ms drugs, DMT such as Ocrevus, you need to look in the long run. but keep in close touch with your neuro. if Ocrevus ends up not working, there are other options.

[Raingrrl]

dianekjs ....I echo what erash said...thank you for a reasoned response! Too many people don’t understand how Ocrevus is supposed to work. I’ve seen too many posts on the Ocrevus FB groups I belong to that also attribute both ‘miraculous’ improvement and flare-type symptoms to the initial infusion or one of the first couple. They discount the other factors and then misinformation spreads.

[dallas343 in reply to Raingrrl]

Yes it seems like all of the information I read from patients about Ocrevus prior to my initial treatment was very positive and that many of them said they saw small amount of improvement and no one had anything negative to say so it was just pretty surprising for me

[LAS3]

I had my third treatment 05/22 and I am going thru the same situation. The fatigue and nausea....

[dallas343]

Had my mri of brain and C-spine both w/out contrast and Compared to 2017 mri no change. According to the doctor that might not be totally true as you can’t see new lesions unless you use contrast. So we will continue with this treatment, next dose in November as there are no Other options.

[dianekjs in reply to dallas343]

You can see new lesions and changes in their character and size without contrast, you just can’t always tell which are currently active.

[dallas343 in reply to dianekjs]

Thanks for the clarification. I figure he wasn’t being totally truthful he doesn’t like the fact that I won’t use the contrast and he’s a very safe doctor . I’ve tried to talk to him about other options like low-dose naltrexone but he’s not open to that conversation .

[dianekjs in reply to dallas343]

That's because the evidence for LDN, while interesting and worth keeping an eye on, is still pretty weak. The trend among top MS specialists is to treat early and aggressively to try to stop progression in its tracks before further damage and disability can occur. The evidence for Ocrevus inhibiting the development of new lesions is quite impressive.

[Corrinne0110]

Me too it is worse after ocrevus,I don't know why

[dallas343 in reply to Corrinne0110]

They did my blood work and found my liver enzymes were elevated. I skipped my next round of treatment while they did lots of tests and finally I had my first fall treatment this month but my symptoms continue to worsen .

[Sunny780]

I had my 2nd dose of Ocrevus August 15, 2019. Feel worse. Waves of nausea, increased dizziness, fatigue and more off balance. Know advice is to give it more time. but this is kind of awful.

[LPSL010]

I know this is an old topic but I also seem to have gotten worse after Ocrevus. The main thing with me is my walking and balance as well as more pain/neuropathy. I think I have definitely declined since starting Ocrevus. I have had the set of half doses and two full doses with the last one being couple of weeks ago. Before Ocrevus I had two infusions of Rituxan. Looking back I think I have declined since first starting Rituxan. I have had a few MRIs since this time and they are stable but I just don't feel any better. I know that Ocrevus is meant to slow progression and not necessarily make me feel better but I wonder how I would feel right now had I not been on Rituxan/Ocrevus. I was dx in 2005 and have been pretty stable up until 2-3 years ago. Not sure if I should just have faith and give it more time or If I should just stop. I know there are other meds out there but the possible side effects sometimes seem worse than dealing with MS!

[Allen5280]

I also had tue same experience with the big O. In off of it and doing better

[kdali in reply to Allen5280]

How long have you been off of it?

[Allen5280 in reply to kdali]

My last infusion was in July of 2019.

[Megan33]

Hi guys, I am also experiencing much worse symptoms after my first infusion on Sept 3rd 2020. One day after the second half treatment I got balance problems were I felt like my ankles were going to buckle. Lasted 2 weeks and improved but then 2monts after I have been getting balance issues when walking. At the moment it feels weird to walk (like my legs keep swaying at the ankle when I walk slowly).

Has anybody has this and, did it ever get back to near normal once you did what you did? I'm scared I will continue to progress now...