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OCREVUS - I NEED INFO

I'm new to this site and am hopeful for some info and support. I was diagnosed in 2014. I went on Betaseron with no success. Went on Tysabri and it worked very well but because of the JC virus, was only able to have 24 treatments. While waiting for Ocrevus I had steroid treatment, but once Ocrevus was released and all the bad press about the breast cancer incidents, my doctor felt I should go on Zinbryta. I've been on that for a little over a year, and as you probably know the FDA pulled it from the market on 3/3/18 because of major problems in Europe. Now my doctor wants me to go on Ocrevus. He says the cancer "scare" was re-evaluated by the FDA and that the incidence was no more than what would be expected in the general population. That alone doesn't scare me...what DOES is some of the blogs about how people are reacting to their infusions. It seems to be debilitating all around. I still work full time and can't afford not to. I've been feeling pretty great the last 3 years. Have any of you used Ocrevus? Would you share your experience? PLEASE - I'm really concerned about this and I get a lot of patronizing response from my doctor and his office. Thanks.

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Hi. I don't know about Ocrevus but I take the sister infusion call Rituxan and it works great for me. So far so good. Of course it has risk but you could talk to your neurologist about it to see if it's an option for you. Whatever you choose God Bless You. 😊

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thank you. I will look into it.

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No infusion problems for me and I tend to have adverse reactions to new drugs.

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I just went to Ocrevus as my MS treatment. So far, so good. I switched from Tecfidera, and before that, I was on Copaxone. The reason for the switches, first was to get away from daily injections, and then it was to get away from so-so success. Now that I am on Ocrevus, I feel better overall, but I have only been on since mid February as that was my first infusion. No infusion reactions. I have no immediate personal history of breast cancer but it does run in my family, so some concern there. Best of luck with your decision, and I hope that I have added something to your quest for knowledge.

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Breast cancer none of my biggest concerns, BUT you have breast cancer in your Family , how do/did you become Soo incredibly brave! ALL of the MS drugs seem SOO Toxic to me and Scary tone try ... I've had adverse reactions to * ms drugs, Ocrevus & Abigio scare me so .... These are the ONLY tow med that my Neurologist suggests. I actually wanted to go on Rebif .. yes old drug, basically No Side affects, safe for my piece of mind.. Crazy? .. I Welcome ANYYYY thoughts!! Best of Luck to You... to ALL od us struggling with this Very Unpredictable disease ....

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Hey snakesYuck,

Interesting name.

Yes, choosing a DMT is a very personal and important decision that you can make to handle this horrible disease called MS. There are many choices, and your neurologist can direct you to what he/she thinks is the best course of action for you. Ask them why a particular med, do your research, and then choose. It is a very difficult decision, and you are not crazy.

When I was first diagnosed, the neuro that I had, gave me ALL the documentation on the ABC meds that were on the market at the time, and told ME to choose. That was it! I wasn't happy with his laxidazical approach and sought another neuro. The point of that was to tell you that your neuro should make YOU feel comfortable with your approach, your decisions, and should be there to help you navigate this MS journey.

My reason for switching to Ocrevus was that it was for PPMS which I have. Right now, I am pleased to let you know that I feel much better since I have been on Ocrevus since February. My second dose is in August. I am also keeping up with all mammos. But this I have been doing for 10+ years now.

I hope that this all makes sense and is helpful to you.

Be strong,

Carole :-D

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SueStu, I am incredibly grateful for Ocrevus and glad I made the decision to go with it. It's restored some quality of life that I feared I'd never get back - I'm walking almost normally, albeit not too far at a stretch, and was using a rolling walker around the house most days previously. My spasticity and awful leg pain is all but gone, and my soul-crushing, debilitating fatigue has miraculously lifted. I still have issues and bad days, but the good days are more numerous and are a great gift. Additionally, I have more than 40 lesions in my brain and spinal cord, but no new ones since starting on O.

With any drug, different individuals will react differently, so I'm sure you'll get a range of experiences, which is normal. For me, my primary concern was to inhibit the formation of new lesions, any one of which could result in serious consequences without warning. Ocrevus has the most impressive statistics in that regard, and overall side effects are considered fewer than most DMDs. Rituxan is very similar, but Ocrevus is the newer version and is more fully humanized, whereas Rituxan is chimeric, meaning it uses a combination of mouse proteins and human proteins. B cell depletion is also prescribed for other autoimmune and connective tissue disorders which I also suffer from, so that sealed the deal in my case. Best of luck to you, and I hope you'll let us know what you decide and how you're doing. :-)

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You might try using the "Search My MSAA Community" tab in the upper right hand of your page using "Ocrevus" as the search word. All posts regarding Ocrevus will come up.

We wish you well, no matter what you choose. Do keep us informed about your decision.

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I’ve only had the two 1/2 doses of Ocrevus they give you to start. No infusion reaction other than feeling tired same day but that occurred after every Tysabri infusion too. I’ve seen no positive changes but it’s too soon. I’m about to get an MRI because of vision issues but, like I said, it’s too soon to gauge any affects from Ocrevus good or bad.

greaterexp gave you a good suggestion to do a search and find other posts about Ocrevus.

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I have PPMS. I have had the 2 half doses and the first full dose of Ocrevus. I had no reactions during the infusions. The first dose I had extreme fatigue for @5 days, the next 2 weren't as bad. With PPMS, there is no promise of improvement, the med will supposedly slow progression but that is hard to judge. I have not experienced anything adverse, and hope to continue the drug longer if my neuro. agrees. Good luck to you!

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Hi Sue, I am scheduled for my 4th infusion next month. I have had very minimal side effects. A bit of a headache. and fatigue for several days after. If you could schedule on a Thursday and take Friday off you should be in good shape by Monday. I was told, and it has proven true for me, that the side effects lessen as you have more infusions. Wishing you the best, Linda

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Sue, Just started Ocrevus Monday and 17 hours later I was able to straighten my hand out with out using my other hand all the years I took Rebif aubagio and copaxone I never saw any help I know its minor but to me its huge...

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Morning Sue...I’m on Ocrevus, already on my 3rd dose which is the full dose & i have had no problems or side effects thus far...the day of the infusion all I’ve had is a lot of drowsiness due to the Benadryl they use along with the solumedrol as premeds prior to the Ocrevus infusion...thanks to how well I’ve been doing with the Ocrevus I’ve been back to work...hope it goes as well for you..prior to the Ocrevus I was on Tysabri for 4 yrs until antibodies kicked in then on Tecfidera for 1 1/2 yrs then Rituxan until Ocrevus was approved...it has made me feel like a new me & given me back the ability to work again which is great...

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I had my 1st ½ infusion on the 19th less than 17 hours later I was able to straighten out my hand. I haven't been able to do that without helping it with my right hand. I had no reactions fingers crossed next dose is Monday.

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hello, is weight loss a side affect of Ocrevus?? I thought I read this some where... I' ve made all sorts of notes and I'm SOO disorganized!! My MS is mainly Cognitive, is my Disorganization MS?? Thoughts PLEASE!! Best of Luck to You!! Thank You SOO Much!!

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I’m waiting for mine. In relation to cancer, I have a skin check with a dermatologist and my OB ordered a baseline 3D mammogram. Do you think you could work a half day on Friday, get your infusion and have the weekend to recover?

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