BTK1 anyone?

[erash]

Yesterday I saw a new Neuro that I was aware was aggressive in research study involvement (not my thing but there are few MS neuros in town and I needed a doc that would return my calls 😕)

Of course he is trying to have me enroll in a study. This is with a new class of drug called BTK1. It works on both B cells and microglia.

I’m going to do some homework but wondered if anyone was in a similar study or had any info? TIA ☺️

[greaterexp]

I remember seeing something a couple of years ago about this, but after looking it up, it looks promising. The side effects listed so far don't seem serious. Are you thinking about getting involved in this study?

[erash in reply to greaterexp]

I need to research more. Participants are randomized to either the btk1 or ocrevus

[carolek572 CommunityAmbassador in reply to erash]

If you are on Ocrevus, would that disqualify you, erash ?

I will do some research as well!

[erash in reply to carolek572]

i stopped O x Nov 2020 but I am guessing they would make u do a wash out

[rjoneslaw in reply to erash]

O has washed out your systems since you stopped in nov 2020

[erash in reply to rjoneslaw]

Maybe (depends how u define that. I may still have no B cells given my BMI) but they r allowing me in study if I choose

[carolek572 CommunityAmbassador in reply to erash]

This BTK1 therapy is another DMT. I would need to stop my Ocrevus in order to participate and that is not something that I am not prepared to do.

[erash in reply to rjoneslaw]

More or less, yes

[IFwczs in reply to rjoneslaw]

My neuro said it stays in your system for up to 12 months.

[erash in reply to IFwczs]

Depends on your bw body mass

[rjoneslaw in reply to IFwczs]

Good 2 know

[IFwczs in reply to erash]

Are you on any DMT now? I am going to stop it as well.

[erash in reply to IFwczs]

No

[JTZES]

Do you have a link to the survey company or how to register for it.

[erash in reply to JTZES]

Look for fetriponid on google or clin.gov

For me it’s thru the neurologist

There are 3-4 studies for btk1 s

This is for ppms and old people up to age 65. It’s the only one I qualify for

[erash in reply to erash]

clinicaltrials.gov/ct2/show...

[kdali]

multiple-sclerosis-research...

[erash in reply to kdali]

Nice summaries 👍

[kdali in reply to erash]

nature.com/articles/s41587-... was in the SWiMS group today. I’m very curious about this!

[erash in reply to kdali]

I agree, btk1’s sound very interesting. Unfortunately the study I’m eligible for would randomize me to either Ocrevus or fenebrutinib for more than 2 years, without me knowing which, would require contrast MRI every 3-6 mos. ☹️

[kdali in reply to erash]

Heh, I think you would know which one since you’ve already had Ocrveus. That’s unfortunate and disappointing 😞

[erash in reply to kdali]

How would I know? You get the Btk1 or a placebo pill daily plus Ocrevus or a placebo infusion every 6 mos. So you get either a placebo pill or a placebo infusion...I don't think I would know if effects/side effects are from one or the other???

[kdali in reply to erash]

Well, maybe you wouldn’t, I guess they would have to give you the same premeds too.

[erash]

IDK, but I am unlikely to pursue to find out. I will keep my fingers crossed that the BTKis are magic bullets once FDA approved :))

[kdali in reply to erash]

I wouldn’t be going for it either. I hope so. I’m curious about making a combo treatment with it with other meds, so it seems like they could take someone who just stopped O and given them x and or placebo to flesh that combo theory out at the same time, and save us many years waiting.

[IFwczs]

I just saw your post. I found out about BTK blockers a couple of days ago. The article I found is here - nature.com/articles/s41587-...

Are you going to get enrolled in a trial?

[erash in reply to IFwczs]

No, but I’m staying tuned. It looks like a promising drug