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  • dals92
    I was diagnosed a month ago at 26. The 2 drugs we decided on was either Gilenya or Mayzent which is the new drug that came out in March/April 2019. I think they’d prefer me use Mayzent because it supposedly works the same as Gilenya, but less side effects. I’m very skeptical about medications in general due to past issues, and my job. This drug I haven’t really heard anything about besides on their website and my doctor. It was approved by my doctor and now I’m basically waiting for the tests they did today to see if i am a candidate for it. I’m also concerned about the fact that I had an active lesion on the MRI June 1st, and I won’t be starting any meds until probably 4 months after that.  I’m hoping someone is on Mayzent, and can share their experiences or was maybe apart of the clinical trial. 
  • maria1
    The little reading I did shows that you have a specific genotype (which your doc tested for as well as no problems with your heart) and it does have less side effects. It doesnt look like a bad choice for slowing the progression of ms. Be sure to keep a list of the side effects handy when you begin treatment so you know for sure if it is a side effect of the drug and not ms.

    It seems as though your md is aware of the newest innovations and is dilligent about making things work. Sure, your body will fight back somewhat but it sure looks like mayzent may be a good choice. I would appreciate hearing your feedback when you begin treatment.
  • dals92
    I don’t actually know yet if I qualify for the drug. I finally completed all the testing. I’m hoping they call me tomorrow to let me know about starting it. It’s kind of alarming nobody even at the clinic knows much about it either. I will definitely share if/when I start it. 
  • waltzing_matilda
    Here is some information your neurologist may not have shared with you about Gilenya.  Recent studies have shown that patient's washing out of Gilenya (stopping it to prepare to switrch drugs) have a fairly high risk of bad exaccerbations and loss of function which does not return.  Make this decision very carefully.  i was on Gilenya and am currently washing out.  I'm terrified.
     
  • dals92
    She did share that with me. Well not about the starting a new drug and that happening. What she had told me was you can’t just stop the drug, that can cause it to exacerbate. I wasn’t aware even switching drugs it can do that. 
  • tony738
    Hello, i wanted to know if you already started Mayzent and how are you doing on it? My doctor recommended it and I am a bit hesitant because of the side effects. I appreciate any information regarding this drug. Thanks.
  • LeeLeeTTD
    I am also thinking about taking Mayzent, I just saw my nuerologist today and took the tests.  I am not sure how I feel about it, as some of the side effects, particulary the vision issues scare me.  I am currently taking Rebif, have been for 2 months and I am going to give it another month before I decide on the Mayzent, but wanted to get started on the tests so can get that part out of the way.  When and if you do start taking, I would love to hear how it goes for you. Thank you for sharing!
  • dals92
    Smart to start the tests now! 
    I should be starting it sometime this week. My doctor just sent the paperwork tonight saying I’m cleared to start it. I don’t need the first dose monitoring. I’ll be doing the titration pack for the 2mg. I spoke to my eye doctor who did the macular edema test, he said it’s extremely rare. He was not concerned at all about me getting it. Obviously there’s a chance, but very small chance. 

    I will  definitely let you know how it goes once I started it. I’m so anxious to take  any of these drugs. 
  • dals92
    I have been taking it for 10 days (5 days maintenance dose) The first day was the roughest for me. I had a lot of chest pain, lightheaded, and a bad headache. It’s gotten significantly better. My eyes hurt for a day or 2.  I still have a headache, but I have chronic migraines so i think it’s a combo of both. Chest pain is pretty much gone. I have been having what feels like hot flashes, and start sweating a ton out of nowhere. As well as feel like I’m getting cold easy. So temperature regulation has been all over the place, I’m not sure if that’s the drug or not.  Overall it’s been going better than I expected. This is the first ms drug I’ve tried so I can’t compare it to others, but so far so good.