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  • LAMchops2019
    I was recently, February 19th of this year, diagnosed with RRMS. I'm still in a type of shock considering that I am, otherwise, fairly healthy. But I have to decide what course of DMT to be on. Any suggestions for a newbie? My neurologist, that specializes specifically in MS, has suggested starting out on the more powerful stuff (ocuvus, tysabri, etc.) due to the number and size of the lesions. This whole situation is still scary to me and I'm a little overwhelmed. Any opinions would be amazing right now. Thanks in advance!
  • sharon-peer

    My daughter’s doctors are at the Rocky Mountain MS Center in Denver.  They have some great Webinar presentations on their website about choosing DMTs.  I have participated in quite a few of their webinars and find them very informative.  They recommend an aggressive course of action from Day one under the assumption that you should  try to slow the progression of the disease as quickly as possible.  What many people don’t realize is that even if you’re feeling fine, the disease can still be causing significant damage.  Having a good relationship with your doctor is critical. It took us three tries to find a good one.  This is not a medical recommendation as I realize all doctors have their own approaches, but I know my daughter wishes there were more aggressive medicines available when she was first diagnosed 14 years ago.  She is now on Ocrevus.   Become an educated patient and your own advocate because in today’s world of assembly-line doctor appointments and big insurance companies, if you don’t stick up for yourself, no one will!   Good luck and keep asking questions!! 

     

  • sharon-peer
    https://jamanetwork.com/journals/jamaneurology/article-abstract/2724324

    Just ran across this article from Journal of American Medicine today supporting early aggressive treatment. Thought I’d pass it along. 
  • LAMchops2019
    Sharon-peer,

    Thank you, so much! I will check this out along with what you stated earlier about the rocky mountain MS center. 
  • golgotha
    I'm sorry to welcome you to our "exclusive" club Lamchops. But if you've been officially diagnosed, you're not leaving -- we won't let you. :)

    (And if you find a way to leave, please take me with you!)

    I'm a little overwhelmed.


    If you're only a little then you're doing better than I did when I was first diagnosed! :)

    Seriously, you're going through the thundering shock of the diagnosis and initial attack(s). It sucks, but like many MS issues, it'll pass. You'll go through the various stages of grief -- one or more times. :) Some claim it takes two years to fully wrap your head around MS. But since we have no choice, we might as well make the best of it.

    There is something of a debate about whether to aggressively treat MS for new patients or not.

    I -- an MS patient not a doctor -- am with the side advocating the aggressive treatment. Each attack we get can cause "lesions" which to me is a fancy euphemism for literal brain damage. Thus, we want to avoid more brain damage as much as possible.

    So I like your neurologist's approach. Many of the DMT (Disease Modifying Therapy) drugs' basic approach is to suppress our immune system. They're serious drugs that can carry various side effects, but are the best approach that science/medicine has come up with to deal with MS.

    Since knowledge is power, some info: Here is a PDF file from the Swedish Neuroscience Institute in Seattle which is a nice summary of DMT drugs. That file breaks the DMTs down into 3 categories: pills, injections, and infusions.

    In addition to reading various things about MS, I'll suggest watching some YouTube videos. But be careful about YouTube videos: Some are great, informative and useful. Some suggest alternative treatments which may be good or bad. Many are from MS patients themselves of varying qualities. But some are from flat-out crackpots or sleazeballs looking to scam sick people out of money.

    This doctor (a mainstream MS-specialist neurologist in Ohio, Dr. Aaron Boster, who likes making YouTube videos) has a bunch of great advice about various drugs and MS in general -- highly recommended.

    He's got a video specifically for newly diagnosed patients that I'm pretty sure you'll find interesting and reassuring. And there are a wealth of other tips and information that you're likely to be interested in.

    And this video from a presentation at the Rocky Mtn MS Center talks about Ocrevus. It has a nice table at about this point which summarizes some of the popular DMT options and their effectiveness, impact on brain atrophy, and side effect ratings.

    Don't feel too stressed about all the terminology and medical buzzwords. (After all, stress is something we with MS want to avoid -- seriously!) Yes, sorry, I know that is easy for me to say after you recently got this hammer-blow of the diagnosis.

    The various DMT drugs have both common or trade/marketing names, and also scientific/medical/technical names. Those various names can be confusing to new patients. In reality, there are not that many DMT drugs.

    My own view: I could care less about the particular drug -- I want science and results so I'll use any drug based on its effectiveness and risk/side effects. And with me having been diagnosed with MS for 30+ years and having had all sorts of bizarre issues and tried many drugs and alternative treatments, I'm not a cheerleader for anything except what works for me.

    You mentioned Ocrevus above which is also the DMT I'm on. The doctor mentioned above also has  a playlist of videos on Ocrevus, but I'd watch some of his intro videos first.

    To close and summarize this too-long message, a thought: So you've just been handed a life-altering medical diagnosis, right?

    Heavy-duty stuff! Take this time to rethink life. And if need be, change and alter things. I mean from the way you think to the what you're doing in life.

    You just got a big incentive to revamp your life and focus on health -- everything from exercise to eating healthy to reducing/finding healthy ways of dealing with stress to paying more attention to your mental health...to everything.

    Most people never have that opportunity -- they're bogged down in the daily grind of life and many tend to stay there. But since you have had this earthquake of a diagnosis, spin it as a positive and use it (it beats the hell out of viewing it entirely as a negative, trust me:).
  • LAMchops2019
    Golgotha,
    Thank you for your reply. I think that may have been the first little ray of hope that I've had since being diagnosed.

    In reality, I'm more than just a tad overwhelmed. I think I'm just trying to "stay strong." That's how I was raised. I haven't really had that breakdown-type of cry yet, either. I guess I'm kind of hoping that if I ignore it...it'll just go away. Ha! I know it won't, but a girl can dream. 

    Dr. Aaron Boster is actually one of the neurologists on my doctor's team at Riverside Methodist Hospital in Columbus, Ohio. Hearing what you said made me feel miles better in knowing that I went to the right place, with the right doctors. 

    You're completely right about trying to turn this into something positive. I see that now. Deep down, I've been wanting to try to find another job for a while. I don't like what I do and it's a stressful environment. I read an article somewhere (I can't remember where exactly) that states that stress has no real effect on MS. So, I've kind of just been sweeping my feelings under a rug. 

    As far as DMT's go, I guess I was hoping to hear people say "No, I'm doing just fine on Gilenya (Aubagio, etc.) No need to jump the gun just yet." Again, I was raised to try to get the least amount of help possible to be able to get through things, to be independent, if you will. I am also like you. I want the cold hard facts. Statistics on whether the benefits really outweigh the risks. I try not to take even over-the-counter medicine, if I can help it. Until last year, when I was placed on a hypertension medicine, I would've told you that people can control their own health and as long as they did what they were supposed to, they'd be fine. That was a humbling moment for me. And then this happened, now I know I was just being downright silly.

    In conclusion; I need a good cry, more research, a happier ME, and to find the best progressive DMT that works with my body and situation. Honestly, this might sound silly, but I think this has made me a little bit better, as a person. I'm softer and not as critical/in need of feeling in control. Thank you for taking the time to write you response. It was just what I needed to hear. 
  • MS_Navigators
    Hi there.  I wanted to let you know that the National MS Society has MS Navigators available to answer your questions, offer support, and connect you with information about MS and local programs and services.  Please feel free to call us at 1-800-344-4867 7am-5pm MST to speak with a Navigator if you'd like.  We won't be able to give an opinion on treatment options - but I know this is overwhelming, and we're here to help you with information and even just a listening ear if you need it. 

    *MS Navigator Carla