They weren’t kidding about Ocrevus and r... - My MSAA Community

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They weren’t kidding about Ocrevus and respiratory illness risk!

Raingrrl
Raingrrl

I was on Tysabri for 5+ years and rarely got sick. I only got a couple of minor colds in that time. Since Tysabri is imminosuppresant, I was careful. Now that I’m on Ocrevus, I’m even more careful because of the different way it affects the immune system, (it is even more of an immunosuppressant than Tysabri), and because of the warnings.

Well...here I am, 9 months in on Ocrevus, with the worst respiratory junk that I’ve had in many years. I don’t know where I got it because of how careful I am. Maybe on the plane back from Alaska. Maybe the unhealthful smokey air we had around here for days made me even more susceptible. I don’t know. I haven’t been around anyone sick.

This is so annoying on top of the injury from my fall in Alaska. I just wanted to warn my fellow Ocrevus peeps to take those respiratory risks seriously.

26 Replies
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carolek572
carolek572CommunityAmbassador

Hey Raingirl,

Thank you for this post. I just received my second infusion last week. This will be my first winter with Ocrevus so I will be extra careful.

Stay strong,

Carole :-D

Oh my! I hope u r feeling better soon!🌈 is it viral or bacterial?

Raingrrl
Raingrrl in reply to erash

Not sure. It seems to be getting better finally so I’m going with viral for now. I see my PCP on the 6th.

The weirdest part is that it seems to have caused a little bit of a pseudoexacerbation despite no fever. MS...never a dull moment. 🙃

erash
erash in reply to Raingrrl

Even w/o fever, it’s likely stressing your immune system. 🙄

Raingrrl
Raingrrl in reply to erash

Yeah....I’m a mess..the worst bug I’ve had in years. It’s annoying me because I have stuff I need to get done.

erash
erash in reply to Raingrrl

Hope you can get some resolution with your doctors visit

Good for you for sharing how you feel Ocrevus is affecting you. Thank you for sharing and making us all aware of possible affects. Hope you feel better soon, take care, blessings Jimeka 🦋 🍫

Raingrrl
Raingrrl in reply to jimeka

Thanks jimeka. I feel like all of us taking Ocrevus are in it together. It is a relatively new drug despite its origins from Rituxan. Even the small ‘tweak’ in the Rituxan formula to create Ocrevus could cause different issues. Who knows? Now that it’s out in the wild and more people are taking it, we are starting to see some things not included in the marketing hype like hair loss in some patients. Information is power!

As an older person, my risk of respiratory illnesses is higher already but now that I’m taking Ocrevus, it adds to that risk because of how Ocrevus functions. And when you consider that Ocrevus was not studied in people over 55, it’s kind of scary to be taking it.

jimeka
jimeka in reply to Raingrrl

Let us know what you decide to do. Is stopping Ocrevus an option? Ms-Indestructible takes Rituxan with no side affects and so far he has had good results. I guess all medications affect us all individually. Look after that chest infection, blessings Jimeka 🦋 🤗

Hope you can get some resolution with your doctors visit

Thank you for the heads up! I hope you are able to rest now and start feeling better soon. 🤗

Thanks all. I’m finally feeling some recovery. At least Im not trying to cough up a lung any more!

Raingrrl & every one else who has upper respiratory breathing problems. Several years ago I was dx with asthma an older doctor told me then to get some otc zinc 50mg from the pharmacy & start taking 2 per day 1am & 1pm this was early 90s. I have done this since although I did go down to1 in the pm a few years ago. It has really helped my breathing. If I get a cold or sinus problems I go back to 2 per day. Mary

Raingrrl
Raingrrl in reply to kycmary

Thanks for the info kycmary! I used an otc combo of elderberry and zinc from the start of symptoms that seemed to help but it had far less zinc in it. Next time I’ll try the level of zinc you suggest. I’ve read about zinc as a remedy so it’s good to know that it works for you.

It has really helped me I don't have to keep a rescue inhaler around all the time now.

Zinc is good for any respitory problem BUT remember 2 per day is good don't start taking lots of them I have heard of people taking more cause a little did good so more is better. NOT SO! take care Mary

Raingrrl
Raingrrl in reply to kycmary

I’m cautious about taking too much of anything but thanks for the warning. It was helpful to see the dosage you take. That is always a guessing game for me because none of my doctors are helpful when it comes to holistic remedies.

Too many Drs. who have book learning leave no room for common since or open mind ness such a waste.

Wow that's not fun! I'm 5 months out since my first dose of Ocrevus (the double dose) and didn't have any problems.

How ya doing Raingrrl? It has been awhile now are you still taking the zinc?

Raingrrl
Raingrrl in reply to kycmary

Hi kycmary!

Once that virus, or whatever it was, went away, Instopped taking the zinc and elderberry. I’ve been ok since. When I start sneezing or feel less than 100%, I take some zinc and elderberry until it goes away. I also make chicken broth that I heat up and drink or make soup out of. So far I’ve not had another episode. My next Ocrevus Infusion is the end of the month. I’ve been traveling a lot the last 6 weeks and have managed to stay healthy.

Sounds great where you been going to?

Raingrrl
Raingrrl in reply to kycmary

I have friends and family in California so I’ve made a few trips there. I live in Western Washington.

Wow, I have a sister who lives in Ventura Co. that's where we were raised. I just talked to her & she says the fire is on the other side of the mountain. Glad Ventura Co. is a big Co.

Raingrrl
Raingrrl in reply to kycmary

One of my cousins lives in an area that was evacuated. In fact they had to evacuate from two different friend’s homes too. So 3 evacuations all together. But luckily, their home is still standing. I was just at their house mid-Sept. So weird.

We pray that things get better & they can get that fire at least under control if not out which is better & safer for every one hope your family & friends don't get evacuated again.

Hi Raingrrl - thank you for the reminder. It will be my first year on Ocrevus and I used to never get a cold or any respiratory issues w/o being too careful. Time to change the bad habits..

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