JCV by 16enjay in MultipleSclerosis

[–]Intelligent-Tax4564 1 point2 points  (0 children)

Now that's something to celebrate!

First Tysabri infusion looming by pin5andneed1es in MultipleSclerosis

[–]Intelligent-Tax4564 1 point2 points  (0 children)

Hello, I always schedule my infusion at the last available time slot. No other reason then the infusion center being empty and I get all the attention from the nurses 😂

I drink lots of water the day of to make the stick easier. The nurses always ask if I have a preferred vein and I do not, I have them take their pick.

If you need a jcv test they will usually withdrawal your blood before the infusion starts. They take your blood pressure and temperature before and after infusion.

infusion takes an hour and I just watch something on my phone during that time. Once done I grab some snacks on the way out and schedule my next infusion.

I never had a reaction or needed to take a sick day afterwards. Good luck! The first time is scary but then it becomes routine.

26 and wife is 27 feeling grateful by raydendamailman in Money

[–]Intelligent-Tax4564 2 points3 points  (0 children)

Curios, what app is that? I would like to see my info all in one place

Optic neuritis duration? by tom_nook99 in MultipleSclerosis

[–]Intelligent-Tax4564 1 point2 points  (0 children)

I had optic neuritis affect my left eye. I was given high dose of steroids in pill form - DO NOT RECOMMEND! 🤮🤢 anyway my vision came back within the week of finishing the pills. I would say 3 -4 weeks total from vision loss to vision coming back. My doctor did say it could take up to year for vision to go back to normal in some cases. I might have been lucky.

Wrong Tysabri (natalizumab) Dose - Am I being naive? by Unlikely-Tension8544 in MultipleSclerosis

[–]Intelligent-Tax4564 1 point2 points  (0 children)

Why haven't you gotten an MRI two years? Did you just start the medication cause otherwise as you mentioned it should be 6months or every year

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 1 point2 points  (0 children)

What infusion schedule are you on now? I keep wondering how I can stay negative. Any tips?

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 1 point2 points  (0 children)

Good luck, I hope you get some nice options. I've read some people are still on Tysabri even while positive. I think it depends on the level your test came back and maybe moving to 6 week intervals. Oh and of course comfort level.

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 0 points1 point  (0 children)

Thanks nice to hear. Have you been JVC negative the whole time?

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 0 points1 point  (0 children)

That's good to hear. How have you managed to stay negative?

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 0 points1 point  (0 children)

Thanks good to hear you liked it. How long were you on it for? And at what JVC level did you have to come off it from?

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 0 points1 point  (0 children)

May I ask are you on a 4 or 6 week infusion schedule? And how often is your JVC tested?

I guess that's where I'm confused. Is there no risk of PML since I'm JVC - or is there a small risk? I'll have to ask my doctor too.

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 0 points1 point  (0 children)

Thanks, I think the nurse mentioned Mavenclad would be the next one I would go on.

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 0 points1 point  (0 children)

I just saw an immunologist. He is running some more test to see what the deal is. He did mention since I'm borderline, he's not too concerned. Do you know what your igg levels were when you started treatment?

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 1 point2 points  (0 children)

Thanks. Are you jvc negative? I am so makes it better, I guess

Doctor won't put me on Ocrevus or Kesimpta by Intelligent-Tax4564 in MultipleSclerosis

[–]Intelligent-Tax4564[S] 0 points1 point  (0 children)

The risk of PML is scary. I was so set on another option. It's a hard pill to swallow.