Ocrevous and respiratory infection risk

Almost a year ago, the FDA gave its approval to the use of Ocrevous. Many, many people have, and are using this MS treatment (?). Many medical-related websites have ads, links, and pop-ups advertising Ocrevous, mentioning its positive benefit...and its side affects. I ask those of you who have used, or are using ocrevous, to please indicate if you have been affected by "upper and/or lower respiratory tract infections".My neuro has suggested I begin the Ocrevous regimen, and is a bit frustrated over my hesitation to do so. One of my lungs has collapsed 3 times, so I do my best not to "catch a cold". So, in summary, I ask you all to comment on this side affect of Ocrevous. Thank you. Joe

[ssdw1958]

Hi Joe I do have to say I’ve been pretty healthy but again I don’t work or Drive so I am in the house most of the time. I have told my husband try not invite people in because I can’t get sick

I do have to tell you I noticed my right hand the numbness isn’t as strong as it has.

But for your question about being sick I have been pretty healthy.

[ssdw1958 in reply to ssdw1958]

Ssdw I started talking Ocrevus in September/October and the next one will be the full dose. (April)

[dianekjs]

Hi Joe, I started Ocrevus last June, and have had one cold that led to a pretty minor upper respiratory infection. One course of antibiotics cleared it right up. Additionally, while family and friends around me have succumbed to flu and more frequent colds, I've resisted them. I haven't been any more susceptible to circulating or seasonal viruses than I used to be. There is a FB Ocrevus group with more than 5,000 members and the vast majority say they have not gotten sick any more frequently since starting the drug, and there are a lot of teachers and parents of young kids stating that. My neurologist told me to use common sense but that extreme precautions are unnecessary. Wash hands, don't cram yourself into the middle of a crowd during flu season, try not to hang out with people that are clearly ill, keep your hands off your face, and keep a small pack of anti-bacterial wipes on hand for times when you have to touch a lot of surfaces in public places.

Remember that Ocrevus selectively targets CD20+ B cells, it doesn't deplete all of them, and you will still have all of your T cells. I would personally be more concerned about the often high risk of developing new lesions and disease progression without appropriate treatment than I would about the relatively small risk of increased susceptibility to infections. Best of luck sorting it all out. For what it's worth, I've had an excellent response to Ocrevus with lots of improvements that I hadn't expected. Keep us posted.

[cjuncker in reply to dianekjs]

After my first two part Ocrevus infusions my blood counts dropped a lot. As expected my cd19s went to 0 but my cd4s dropped to 204 from 373. My neuro has me seeing a hematologist and an infectious disease doc to rule out causes other than Ocrevus. I'm taking medications and vaccines to keep away opportunistic infections....fungal, herpes (shingles), and pneumonia. My next Ocrevus infusion is on hold until we figure out what's going on with my blood counts.

[CalfeeChick CommunityAmbassador in reply to cjuncker]

Would you mind if I follow you cjuncker ? Interested in hearing about your results. I hope you and all of your results improve very soon. Lynn

[cjuncker in reply to CalfeeChick]

Will will give you an update once I have more blood tests done....probably not for a few months.

[Linda3579 in reply to dianekjs]

Thank you for all this good information. It was very encouraging for me. I will have my next infusion next month. Linda

[Pink-1]

I have not experienced any respiratory problems. Good luck to you.

[Momjules]

I am going to start this medication too. I have heart disease and diabetes.

I have been on copaxone and ticfadera.

I’m nervous too. Any info would be helpful. Thanks.

[dianekjs in reply to Momjules]

Momjules , feel free to ask me any questions you have, I’m happy to share my experience and/or what I know about Ocrevus. 😊

[Momjules in reply to dianekjs]

Hi! Thank you for your offer.

Having heart problems and diabetes, my tests always come back with a negative.

I was nervous starting tecfidera and now this new med has me nervous too.

To know my mris from three weeks ago show new active lesions makes me nervous as well.

I just moved and am still finding doctors. I have to ask my in laws for a ride until we acquire another vehicle. I don’t like to do that.

I also am going on acthar gel for a little while.

They say don’t use for heart failure. Which I have. But my new Nuevo said it’s fine.

Just a bad transition after moving.

My old doctors are three hours away.

It’s a scary time.

Thank you!

[dianekjs in reply to Momjules]

Momjules , moving's stressful and challenging under the best of circumstances, I can understand your fear in your situation. Hopefully, the move will turn out to be a positive change and Ocrevus will inhibit the development of new lesions. It does have the most impressive stats for halting/slowing progression, were you told that? If you haven't yet watched the YouTube video on Ocrevus by Timothy Vollmer I strongly recommend you take the time to do so - it is highly informative and has a helpful Q&A at the end. Dr. Vollmer is considered one of the leading experts in ocrelizumab and directs a highly regarded MS clinic in Colorado. Here's the link if interested: youtube.com/watch?v=J4prsO-...(Not working as expected?)

Don't hesitate to ask if you have any questions I might be able to help with.

[WonderMom in reply to dianekjs]

Thank you for this link,it was excellent! I have debated changing My Rebif for awhile and this Webinar really helped me. I was familiar w/ the MS center presenting,My Neuro has suggested I do online research @ Rocky Mountain MS center for supplements I have been interested in trying.

Thanks again for sharing!

[CalfeeChick CommunityAmbassador in reply to dianekjs]

Very kind of you,,, dianekjs to offer your assistance. I will be following you in your journey. I'll be asking my doc about starting a DMT at next appt. Lynn

[dianekjs in reply to CalfeeChick]

Lynn, you may also find the above YouTube video useful as it discusses and compares all of the main MS drugs currently in use. It's excellent and helped me a lot.

[Linda3579]

Hi Joe, I have been Ocrevus for a year. I was really nervous about starting it too. I have asthma and worry aboutrespiratory problems. I had a bad cold a few months after my first infusion. I did think I had a harder time getting over it but I haven’t been sick since. I am very careful about staying away from sick people. It’s so hard to make these drug decisions. I wish you the best. Linda

[KDenes]

I am getting Ocrevus treatments with no issues at all.

[CalfeeChick CommunityAmbassador]

Following your conversation, Thinking of asking doc about starting a DMT soon.

[Iona60]

I haven't had any, and didn't even catch the cold that my daughter had during the whole week of her visit. The oncologist that administered ocrevus to me said that those who tended to get respiratory infections continued to get them after ocrevus, others didn't seem to see an increased incidence.

I do take precautions and carry a face mask in my purse, in case I'm in a situation with a sick person. I also keep anti bacterial wipes in the car.

[Momjules]

I want to say thank you for all the great comments and advice. I’m off to watch that video now!

Thanks !!!!

[Hidden]

Thank you all for your comments and thoughts. In particular, thank you very much for the RMMSC link. It's time now for me to make the calls and get started with Ocrevus. My legs are getting worse, as the muscles, tendons and/or ligaments tighten more and more. Does anyone know what section of the medical field is most knowledgable about muscles...their difficulties, and corrective measures?