Ocrevus : Hello everyone, I have returned... - My MSAA Community

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Ocrevus

Allen5280
Allen5280
β€’30 Replies

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!!!! πŸ˜†

30 Replies
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Iona60

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.

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Allen5280
Allen5280
in reply to Iona60

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.

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pjb229

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

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Allen5280
Allen5280
in reply to pjb229

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

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erash

Allen5280

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

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Allen5280
Allen5280
in reply to erash

erashI certainly will keep everyone up so speed!!

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Morllyn

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?😴

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Allen5280
Allen5280
in reply to Morllyn

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?

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Morllyn
Morllyn
in reply to Allen5280

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!

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Raingrrl

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

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SueAB

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

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jimeka

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 πŸ¦‹ 🌈 πŸ‘

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BillD999

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

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Tutu

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

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Allen5280
Allen5280
in reply to Tutu

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.

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lexsarset

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

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Kevin_McMillan

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!!!

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Royjr

Good luck!!!!

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greaterexp
greaterexpCommunityAmbassador

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!

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gatorman15

Good luck Allen 5280. Keep us posted, thx.

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Sara2000

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

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Allen5280
Allen5280
in reply to Sara2000

We will have to compare notes! πŸ™„

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Joannskianni

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 :)

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Allen5280

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!!πŸ’–

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Joannskianni

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!

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ssdw1958

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.

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dianekjs

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.

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Jbahnan

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

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ssdw1958

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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