Ocrevus

Hello everyone,

I have returned for the appointment with my neuro at OU Medical Center. We had discussed the risks of Ocrevus and weighed the benifits of the treatment. As nervous as I am to jump into something, someone has to. For me personally it is worth the risks for there aren't many things in life that do not. So here goes 🐹. Looks like it will be about 2 weeks until I start it. Already passed the blood screen so now just waiting for paperwork and finincial assistance. My Neurologist told me that there were 6 people that developed breast cancer out of 100 in a three year trial. That's less than the just under the about 10% of those who would develop it naturally in the US so there is no evidence the treatment had any influence on that occurring. The benifits outweigh the risk for me so.... well... here we go!!!! 😆

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  • Allen5280 Great news for you! Do you know what they were looking for in the blood screen? Before I started Gilenya, they were looking for the JC virus and shingles.

  • It was a recheck for Hepatitis. I couldn't take tasabri because the JC virus. There was no mention of JC being a factor with the Ocrevus.

  • Good luck Allen. Hope everything goes well & works for you. You'll be in my prayers.

  • Thank you so much Paul. All the prayers are greatly appreciated.

  • Allen5280

    Sending positive vibes your way. Keep us updated on how it goes.

  • erashI certainly will keep everyone up so speed!!

  • I am glad that you discussed those issues with your doctor. Hey, if that was my best option, considering my history and disease progression, I would do the same. No one can make the decision but you, just wanted you to have the best information available.

    Allen5280 how have you been sleeping?😴

  • Morllyn

    I am so thankful that you brought all the info into light that you did. It made me ask all the right questions that allowed for me to make an informed decision. The more my doctor and I talked about it the more I realized this is my best shot. Even though I will be nervous there is something to be said that what I go through can help others. That be good or bad, either way it's a win for me. I have been feeling and sleeping so much better since I have stopped Copaxone. I know I am a strange fellow who gets strange side effects to medications. I haven't felt this good, all across the board, since I started it 2 1/2 months ago. My last one was Wednesday of last week. Just couldn't do it to myself anymore. How have you been sleeping?

  • I get to sleep between 1 and 2am but that is much better than some nights.

    Glad you are feeling better and sleeping better! Good thoughts coming your way!

  • Good luck Allen5280! I hope Ocrevus works for you!!

  • Good Luck on your new journey, Allen5280! We will appreciate you keeping us posted!

  • Well done Allen5280, it takes a lot of gumption to try something that nobody knows to much about. Also thank you for keeping us all informed, I pray that it works for you and side effects are minimal if non existent. Blessings Jimeka 🦋 🌈 👍

  • Allen5280, Good luck, I think you made the right choice, I hope it works for you.

  • Allen5280, I'll be praying all goes well. We'll be anxious to hear how you do. 💕

  • Thank y'all for your warm wishes and prayers. I am going to be anxious for a little while. Also hopefully optimistic at the same time.

  • Hoping this treatment will help you! Looking forward to hear about the progress you will be making!!!!

  • Allen5280 wishing you the best with the Ocrevus therapy! I'm looking forward to hearing your feedback on your progress, this might be the therapy that gets me a decent day again? I have a 10 yr. Old son I would like to shoot baskets with again and play catch again! I have a Race for MS drag car I need to finish also. I'm praying for you!!!

  • Good luck!!!!

  • I so appreciate your willingness to try this, not only for yourself, but to pave the way for others. Thank you for letting us know you are starting your new treatment soon and for reporting your progress.

    Everyone is cheering for you and praying for you!

  • Good luck Allen 5280. Keep us posted, thx.

  • I just signed up to start and I'm excited about it!

  • We will have to compare notes! 🙄

  • Good luck, Allen5280 ! I'm participating in one of the trials for Ocrevus. I hope and pray that you have the success with it that I have :)

  • Joannskianni Thank you so much!!! It's so wonderful to hear from someone that is participating in the trial! Not only that but also working for you as well!!! I can't begin to thank you enough as I hope everyone else does as well!!! Much love to ya!!💖

  • Allen5280 I'm not one of the miracle MS'ers that you see on TV, but the spasticity that was causing me so much pain is pretty much gone. My fatigue is better, my balance is improved. I feel better all the way around. If I gain nothing more than I have right now, I think it's well worth any side effects.

    I don't want to be the mom/grandma that can't do things with my beautiful grandkids and Ocrevus feels like it's helping ..... I'd almost forgotten what it felt like to have a semi-normal day :) Love to you, too!

  • Hi this is ssdw1958 it sounds like you are doing well with the new medicine so your spasms is not as bad same with your walking because mine has not been good at all I did stop the copacel and my swelling and discoloration in my right foot is gone. That medicine really messed my legs up bad.

  • I am preparing to take the Ocrevus plunge myself, so I will be following your progress with much interest. I wish you the best of luck!

    As for the pre-treatment blood screening, I just had this done as well. My neurologist explained that any dormant virus or infection could be "really bad news" on B-cell depletion therapy. I think they took 6 vials of blood and tested for hepatitis, TB, HIV, and I'm not quite sure what else. My rheumatologist is among the world's leading experts in rituximab and said they no longer routinely screen for the JC virus before initial treatment, fwiw.

  • Good luck Allen, ill be starting it in june my neuro sayshave PPMS

  • Hi allen5280 I want to thank you for replying to me about what your Dr. Said about the cancer that makes me more at ease with this medicine if something could help me with this monster disease I might take it. Please let me know how you are doing with the medicine. Thank you and my prayers are with you and everyone that is fighting MS

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