Search Discussions

Main Content

  • smferggie
    Well I have been diagnoste with MS after 4 MRI's and a spinal tap. the doctor has sent me the names of 4 different drugs and has asked that I research them before we sit down and determine the best procedure to follow for my situation.

    Tables:  Gilenya,  Tecfidera
    Infusions:  Ocrevus,  Tysabri

    Any experience (good, bad & side effects) with these drugs would be appreciated.
  • lovereign
    Those four can cause PML, a fatal brain disease, much worse than MS itself. Do yourself a favor and listen to your doctor; do your RESEARCH. There are other DMTs that don't put you at risk of PML and have less severe side effects. It's good to get advice from others; however, it's your life, your health, and your choice. Stop caring so much about what others opinions are and take control because MS will take away a lot of your control being that it's such an unpredictable disease.
  • golgotha
    Those four can cause PML,


    I'm not sure, but I believe Ocrevus has not shown that yet. The story I recall reading is that one MS patient who was on Ocrevus and another MS drug which had previously shown to have PML issues -- in short, he was on two immuno-suppressants -- came down with PML. So they could not pinpoint that on Ocrevus since he was on two drugs. (Someone correct me if I'm wrong about that.)

    With that said, it would not surprise if Ocrevus has a PML risk. And we should remember that it's relatively new from its FDA approval so stats are still being collected.

    From what I understand -- MS patient, not a doctor -- the risk varies widely if you have the JCV/JC virus in you or not.

    The JCV virus is like herpes -- many in the population have the virus in them. JCV normally is not a problem in humans, unless have AIDS or immune problems or you're on the kind of powerful immuno-suppressant drugs that we MS patients are talking about.

    If you don't have the JC virus in you, no problem of PML because the theoretical risk is effectively zero.

    But if you do have the JC virus in you already (as a significant percentage of the population does), then you run a risk of PML.

    FWIW, this neurologist and MS specialist has a video "thought experiment" where he talks about PML risks. (I'd love to hear others' views on his take on the issue.)
  • Chrissyny
     Take a deep breath, don’t be overwhelmed why what did doctor gave you. Unfortunately it’s not like your arm is broken and put it in the case it’ll be fixed. OK no problem just take a deep breath sit back and do some research for yourself.
    One of the medicines that he listed was offered to me and apparently it was on the market on your our year when it was offered to me.
    I have a feeling I was so so so so so a good candidate- whatever that means, this medicine was definitely too new for me obviously they couldn’t give me any answers or any updates it was too new.
    Take one thing at a time ☺️☺️☺️☺️look at your situation see what YOU can do to improve not anybody else ; little things, start taking care of yourself big or small make one big improvement you’ll see ✌🏼✌🏼✌🏼 😊
     yes, with the medications, they tell you nothing is going to cure the disease it will slow the progression down. Well I need to do that for myself right now. I will make the changes to slow things down, I will take the time out to look at my situation and see what’s going on with me, I will do these things.
    For instance I have some back and leg issues, Obviously you can see the physical problems. But I am the one who will try to do some stretching or little bit of strengthening or whatever I need to do to get going.  
    I am going forward here 
    i am  going to ask questions 
    i am gonna start taking care of my self
    i am going to try my best to get ......some control here.
     yes there are things there to help us, we want to be smart about it to help us.
    It is your life your decision.
    Maybe you want to get a second opinion in the meantime, see what they say or offer you.
    Unfortunately MS has a host of symptoms that differ from everyone.  It’s hard to say one-size-fits-all.
    One thing at a time now OK ✌🏼😊❤️✌🏼😊❤️✌🏼😊❤️✌🏼😊❤️
     
  • klg-123
    I would defnitely do your research first. Second, realize that MS is different for everyone and how a person reacts to medicine is different for everyone. Third, decide what you can reasonably do in accordance with your lifestyle. (For instance, I knew I would not be able to do shots 3x/week, so that eliminated some meds that were suggested to me. I knew having flu-like symptoms for a week at a time would make it hard to hide my diagnosis and treatment at work - I haven't disclosed to anyone other than family and 2 close friends.) That being said, I will give you my experience with Tecfidera - the good and the bad. I have been on it for  almost 4 years now and it is the first and only DMT I have been on since being diagnosed. 
    The good: I have not had a relapse, I have no new lesions and no active lesions - all confirmed by MRIs every 6 months. My bloodwork has been good the whole time. You may read about PML risk for those on Tecfidera - it is my understanding from both my neurologist and my MS Specialist that the risk of PML is when a person's lymphocyte count goes too low and stays there for a period of time - but ask your doctor to be sure. My lymphocyte count has remained in the normal range the whole time, very close to what it was before taking Tecfidera. Currently, I do not have any side effects except mild flushing if I take it on an empty stomach (and that is rare). For me, the ease of taking a pill 2x/day was a major factor in my decision.
    The bad: Week 3 - the first week on the full dose. That was not a good week. I had horrible stomach pain, cramps and nausea. After 2 days of that, I called my doctor. He had me stop immediately. After talking, he changed the titration from 2 weeks up to the full dose to stretching it out over 4 weeks to give my body time to adjust. That and some over the counter aids (benedryl, aspirin, pepcid AC with each dose - all doctor approved) made all the difference! I was able to toletate it with no stomach issues as long as I had a full meal (protein, fat, carbs). After 2 months, I no longer needed the over the counter meds. I have not had any stomach issues since then.
    So, that is my experience...take it for what it is. I do highly suggest finding a doctor you are comfortable with on this long journey. And, the book "MS for Dummies" was extremely helpful to me in learning about my new diagnosis at the time.
    Best wishes and best of luck to you in your journey! 
  • klg-123
    I forgot to mention this but I am JCV+ and my neurologist and MS Specialist are not concerned about PML for me due to my normal blood work.
  • golgotha
    To add onto the other great advice you already got, I'd suggest watching some videos. This doctor has a bunch of great advice about various drugs and MS in general -- highly recommended.

    This PDF file from the Swedish Neuroscience Institute in Seattle is a nice summary of DMTs. And this video from a presentation at the Rocky Mtn MS Center talking about one drug has a nice table at about this point which summarizes some of the popular DMT options.

    Out of the four drugs you listed, I only have experience with one which is the one I chose (Ocrevus). You'll find statistics rank it as one of the most effective drugs with few side effects. The big downside is that it's wildly expensive and some insurance companies will want to start you out on cheaper (and often less effective) medicine.

    But overall, IMO your choice should be simply based on the effectiveness, impact on your life and lifestyle, and of course possible side effects.
  • began1031
    Wow your situation sounds similar to mine same amount of MRI's and spinal tap same diagnosis but he wants to wait 6 months do another MRI to see if any progression. Before discussing treatment. Are you or had any major symptoms or issues? Wonder if that's the difference 
  • klg-123
    I know everyone is different - different views, different health, different insurance, etc., and this is just me, but I wasn't OK with a "wait and see" approach. I searched for an MS Specialist, asked around, received a few recomendations and saw one within a month of my original diagnosis, just to be sure it was really true. I am not telling anyone what to do by any means - I am only tellling you what my approach was because I was in a state of shock and disbelief, I was scared and I didn't want to believe that my neurologist was right. I see that you live in NY and I happen to see a specialist in NYC. He is welll known, highly regrded in the MS world, very attentive and up to date on all new news and meds and such...but he doesn't take insurance. Since I only see him once a year, I can live with that - I know not everyone can. (I see a regular neurologist closer to home every 6 months who orders my meds, MRIs and bloodwork because he is covered by my insurance.) If you are interested at some point, let me know and I will give you the information.
  • MS_Navigators
    Hello,

    This is Steve with the National MS Society.  I'm so glad you found this site.  I wanted to provide you the following links which will take you to information specifically for someone with a new diagnosis as well as information about the available medications.  

    https://www.nationalmssociety.org/Symptoms-Diagnosis/Newly-Diagnosed 

    https://www.nationalmssociety.org/Treating-MS/Medications

    Take care and do not hesitate to let us know if there is anything we can do to help!

    Steve
     
  • capitolcarol
    smferggie,

    Hi, I've been on Tysabri for four years and am PML positive.  I take the test evey six months and it is still a low positive.  My MS neurologist said that when it gets to a certain number, they will pull me off of Tysabri and put me on some other drug therapy treatment.  I sit in an infusion center with four other individuals.  We all either talk or else I read for a couple of hours.  I can really catch up on my reading.  It's a hard choice.  Good luck and get back to us about what route you have chosen.