Ocrevus; Kesimpta and Mayzemt.

[bluegiraffe]

Hello,

I recently had an appointment with a new neurologist that suggested 3 SPMS treatments explaining of course it would not reverse my condition but keep me stable. The three medications are Ocrevus; Kesimpta and Mayzemt.(Formerly Gilenya). The first one is a transfusion every six months, the second is a once a month injectable, the first two were identical he said just a different way of taking. And the third treatment is an oral once a day tablet.

My concern is the common symptoms that are listed including upper respiratory infection, High blood pressure, other infections, some could be life-threatening, hepatitis, herpes, abnormal liver test, skin problems and flashing, headache, and other more serious symptoms were listed.

I am secondary progressive and have not been on the DMT for many years. I have not been ambulatory/use of my legs for many years and have more recently gotten weaker in my hands and arms.

I am definitely for taking a medication to get stable and not get worse but the common symptoms concern me.

Any experience/input will be helpful. Thank you in advance.

[Jennaly16]

Hello
I actually have been on Mayzent since July 2019. I struggled on Tysabri and infusions aren't for me (my veins hide from needles). I have had no issues and have been stable since being on Mayzent. I'm still kind of the new side of being dx (2018) so i do not have a lot of experience with different treatments. I hate the idea of taking a pill everyday but it has kept me stable. My biggest con is just the shipping of it. When they deliver it you have to keep the medicine in the fridge until you open it to use and it's a 30 day supply. It's a con only because with working full time it's hard to coordinate drop off. Also if you miss two doses you have to restart the tapering on of it (i believe it's 2 doses in a row, maybe 3). So i have a reminder on my phone for every morning. There are also tests you have to go through to be cleared to take it which weren't bad, just hassle to add appts.
I'm pro it only because it works for me and a coordinator calls monthly to check on you. However i know different treatments work for different people.

[bluegiraffe]

Thanks Jennaly16.

Good to hear it’s working for you. A couple more questions:

Did you experience some of the common symptoms I see listed ? (this does not include the possible serious symptoms)
Most common side effects:
Headache, high blood pressure, abnormal liver tests

what type of tests did you need to take before starting the medicine? And do you need to have periodic testing along the way?

I understand Mayzent is the new drug to replace Gilenya. Did you have any difficulty getting your insurance to cover the medicine?

thanks again for the information.