Multiple Sclerosis Journey Update: 20 Months and 6 Infusions Later, Life With Ocrevus.
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- Опубліковано 30 кві 2021
- My Multiple Sclerosis Journey Part 12:
20 Months after my first infusion of Ocrevus and 6 infusions later, here is part of what I have experienced.
This is solely my experience, I am not a medical professional. Ocrevus may not be right for you. Consult your care team.
:)
Big shout out to / breeze for the tunes!
I don’t feel my big toes right now am in big pain I will to take my insurance for that thank you for your help
I am on Kesimpta now and it is working much better, no crap gap. Good luck with your journey and thank you for the comment.
Hey Cliff [sp?]! Saw this video while browsing then I watched your others. Glad the Ocrevus is working for you. I was Dx'd with RRMS last June (when I was 49); had my initial Ocrevus infusion in October and I'm getting my 2nd next week. I'm smack dab in the middle of California where it's pretty much 100 between June-Aug. Guess we will see how that goes. Oh, and I ordered an e-bike, too. Seems like we got some things in common, so I'll be excited to ride along this journey with you! Take care!
Great to hear from you David. I hope it works out well for you. My heat intolerance is much better when the Ocrevus is within the first 3 months, after that, not so much. Please do come back and let us know how it's working for you. Have a great week!
Great videos. Made me feel a little optimistic
How are you now? Thanks so much
Hi Daneil, I am releasing an update soon. It has been crazy. More on that soon. How are you?
@@amitrippen8170 in the fight of a lifetime with and invisible enemy thank you for asking 🙏
I have used Tysabri for three years without a problem and no ms progress . It’s a monthly infusion and by week three I would feel the “crap gap” but nothing too severe. Had no ill effects from the 1 hour infusion and didn’t have to stay for the 1 hour observation period. Was happy with the drug. But then I tested high titer for positive JCV virus. My neurologist decided it was too much of a risk so in 2 days ( after many many blood tests) I’m getting my first Ocrevus infusion. I’m going to give it at least 3 or 4 infusions to make a decision on it.
@@undefinable68I too recently was diagnosed with jc at what number on the index are you? I was 2.1. At what point should this be a concern IYO? The continued use of steroids that have to be given at infusion is what I’m fearing not the ocravus. Thanks
@@danielmcinerney9949 I think I was 3.3 or 3.5 titer. In true transparency though, my doctor thinks the risk is not worth it with so many other decent drugs available, so I think any result of JCV , she would have pulled me from Tysabri. Interestingly enough, one of her nurses told me they had been getting a lot of high titer results lately. Hopefully the Ocrevus will work, but if it becomes too problematic, I have no aversion to changing to another drug.
Luckily , my neurologist is amazing and orders bloodwork and MRIs every three months. She works with me and heavily pushes exercise, water, mental health support and clean eating. She also encourages researching everything on my own and is available to discuss it anytime I want. I really lucked out with her. I will ask her for her thoughts on the steroid use, if I need it and what she thinks about the hazards of prolonged use.
Thank you for your response, I didn’t even think about the steroid risk.
It sounds a bit like a rollercoaster ride in hell.🤔
Definitely, except Hell doesn't require insanely expensive insurance. (so I'm told.)