This might be a crazy question...

[22cyclist]

but yesterday at my Tysabri infusion one of the guys was starting Lemtrada and staying on Tysabri. My impression was you just took the Lemtrada. Am I wrong?
Obviously I am because this guy is doing it and my neuro ordered it. She was part of the study for Lem.

Good luck to those of you on it!

Lisa

[msgijo]

WOW. While both of these drugs are on my list of things to talk to a MS specialist about in an upcoming visit, I had never imagined taking them both at once. IMHO either one of them would require enough monitoring / precautions etc. by itself to warrant my entire attention.

I would be interested to know how this works.

[22cyclist]

Me too honestly. I have been on Ty for 2 and 1/2 years and it has been amazing! No new lesions. I have had a couple of relapses though, but 2 in 2 years is wonderful when I was having 5-6 a year before.

I would be interested in taking both drugs too to try and stop the relapses.

Lisa

[Marco]

Fuzzy Math

Most people I know have had to wash out Tysabri before starting Lemtrada.

• Lymphocytes fight the JCV and prevent the development of PML.
• Lemtrada depletes lymphocytes increasing your risk of developing PML.

Even if i was JCV-, I would not take both medications at the same time.

[22cyclist]

Yeah and this poor schmuck was JCV+. Maybe you are right Marco. You read way more research than I do. Hopefully there will be new and better treatments very soon. When I was inquiring about my own JCV test as I am about 6 months late for one and have been on for a while about what my risk for PML was to the neurology infusion pharmacist. She did not have a direct answer, just said it gets more risky the more I am on it. I used to know the numbers but not anymore.

Take care
Lisa

[Kimba22]

Hi Lisa,

Oh my gosh! Quite honestly, I'm stunned any physician would even consider prescribing them both together. Even if someone was JCV-, since anyone can convert to positive at any time.

There's enough safety issues involved with either drug alone, so I can't even imagine how much those risks would increase using both drugs. They both have black box warnings for a reason! I would never expect the FDA to approve their simultaneous use.

Besides an even higher risk for PML, what about infections? They can quickly turn gravely serious, especially with low lymphocyte counts. (This coming from someone who had not one, but two UTIs turn septic seemingly overnight.) And who knows what else could happen to someone taking both drugs?

Also makes me wonder who is footing the bill, since no insurance company would pay for them both? I don't think any would even responsibly agree to pay for one if it was known the person was taking the other. I guess that leads me to believe they are just misinformed altogether and won't be taking Tysabri anymore, just Lemtrada? Would seriously hope so, for their safety's sake.

[22cyclist]

Kimba: I agree with everything you said, but this guy is scheduled for another Ty and will be coming monthly for it they said even with the Lemtrada. I guess he has pretty aggressive MS, but wow! I trust my physician, she is a world renowned MS specialist/immunologist that was in on the Lem studies.

I sure hope the best for him.
I wouldn't do it I don't think I am that brave.

Lisa

[Kimba22]

Wow, Lisa. Makes you kind of wonder if this guy really understands the risks? No one ever expects something bad to happen to them until it does. At this point in my disease course I might be willing to accept the absolute worse case scenario, but I'd be more afraid I'd just end up even worse than I was before.

Also seems like a risky proposition for the MS Specialist. Is this another study? Seems like there would be some serious ramifications if something terrible happened to the guy, even if he signed off that he understood the risks.

Best of luck to the guy. I hope it helps, not hurts him. But, I don't think would ever be able to do this either, especially if I was JCV+!!!