Mayzent

[cljones]

Monday they are coming to draw my blood for genotyping. Then they will know which dosage I will be taking. I still haven't heard of anyone taking Mayzent yet. I guess I am a guinea pig. Someone has to do it. If there is anyone out there that can tell me they have tried it that would be great. I was told that I am primary progressive. I have known this all along. They didn't come right out and say it but she said you have had progression without lesions so that's why we are putting you on Mayzent since it is for primary progressive MS. Sounds like ppms to me.

[greaterexp]

We sure are grateful that you’re willing to share information. I wish you the best with this new experience and hope it gives a big punch to your MS!

[Peruzzot]

Hope it works for you. Keep us posted.

[jimeka]

Mayzent was passed by the FDA in March 2019 for use with CIS, RRMS, and SPMS. I have PPMS and it’s not passed for that. Check again with your doctor, as your insurance will probably need to know which type you have. I quite like the idea of one tablet a day, I hope and pray that it works for you, keep us posted, Blessings Jimeka 🤗

[cljones in reply to jimeka]

Well maybe she considers it spms. I may have just assumed. She did say progressive.

[kandykone1]

What is PPMS considered?

[cljones in reply to kandykone1]

Primary progressive MS. But I think I misunderstood my doctor. She just said progressive and I thought primary but she must have meant secondary.

[ahrogers]

There is probably Facebook group out there. There is one for Ocrevus so I would guess there is one for Mayzent too.

[DIsneyQueen]

I started taking Mayzent about a month ago. The 2 mg dose. I also have PPMS. I have been on Rebif, Tysabri and Ocrevus and progression continued. Hope this works. No side effects. My sister says I am more steady since she saw me last. Good luck.

[DIsneyQueen]

Insurance did approve it even though it was approved for SPMS. My Neurologist has had success with it with PPMS

[cljones in reply to DIsneyQueen]

Thanks I am happy to know that.

[rjoneslaw]

good luck

[cljones in reply to rjoneslaw]

Thanks. I pray it all goes well.

[MSsurfer]

I have been on Mayzent now since September. So far so good. I feel it’s working. I wanted to check in with you and see if you’ve experienced hair loss. I think I’ve lost a 1/3 of my hair and it’s not listed as a side effect. I’m 44 .

[cljones in reply to MSsurfer]

No I haven't lost much more than normal. When I took Gilenia I had some hair loss but I started taking Biotin and that helped. So now I just take it all the time so that may be why I haven't had a problem with it. I hope you can find something to help. You can tell your Alongside MS rep. They can tell you if it is a problem that others have had. I know with several of the DMT's hair loss is a problem. Sorry I didn't get back to you sooner, I don't check my e-mail some days.

[MSsurfer]

thanks for getting back to me!

[cljones in reply to MSsurfer]

You're welcome