Choices

[Jenjus]

My doctor has recommended Kesimpta (Ofatumumalb) and for me to start as soon as possible. Between my recent contrast and no contrast MRIs there were no active flare ups but I have been experiencing an uncomfortable feeling, sometimes banded and sometimes hot/cold sensations thru my right leg for couple weeks now.

I'm wondering, if there are any side effects with this drug and if there is an option to use it for a year and then take a break if my symptoms have subsided.

Unfortunately, doctors in Japan are not well versed with this illness and I honestly don't feel confident with their recommendations.

Seeking advice, input, recommendations.

[CV97]

Hello there! Kesimpta is one of the newer disease Modifying Therapies for MS. It is similar to Ocrevus (an infusion) but is a shot taken at home once a month.

Most people experience side effects when starting the shots. Once your body adjusts, these usually go away. However, some people's bodies do not like it and they have to stop taking it.

I have been taking Kesimpta for almost 3 years and have had no problems with it after the first month or so (which was expected). My MS specialist monitors my MRIs & other signs of progression to ensure it is still working for me.

DMTs are made to slow progression, not stop symptoms. However, when our MS is less active, physical symptoms can sometimes improve too. Staying on a DMT really depends on each person's reaction/circumstances/etc. I recommend working with your doctor to find the best fit for you. They might have other recommendations that will help with the sensations you've been having in your leg.

Here are some resources for Kesimpta. Be sure to check with your doctor to see if there are additional resources for the medication in Japan.

mymsaa.org/treatment/kesimpta/

kesimpta.com/

You can also learn more about other DMTs here: mymsaa.org/ms-information/t...

[Jenjus in reply to CV97]

Thanks!!! I'm just really hesitant because I don't know what's best for me at this time. The only 2 options they offered me in Japan are the Kesimpta and the Tecfidera. I think I'm mostly just feeling scared to make a decision at this point.

[Greentime in reply to Jenjus]

It is a big decision. Good luck!

[Jer29-11]

Hi! I was on ofatumumab (iv infusion), before it was discontinued and reintroduced as kesimpta. It worked well for me. My dr would not do kesimpta because I’m highly reactive to the infusion and he didn’t think it was safe to do at home. I do believe the medication is good though!

[CV97 in reply to Jer29-11]

Wow! I can't imagine what the iv infusions at a higher dosage of that med were like! The starter doses made me feel like poo (again, expected). I'm glad the symptoms settled out for me after the first few Kesimpta shots.

[Corran731]

If your choices are between Kesimpta and Tecfidera I can tell you that the side effects are much less with Kesimpta in general. Everyone is different but having taken both, that was my experience. I was on Tecfidera for 3 years and the side effects were very unpredictable. Sometimes stomach issues. Often I had facial flushing. With Kesimpta I once had a small injection site reaction but that’s it.