Nothing Worth Fighting for Comes Easy

I am trying to pull myself out of a sudden depression so I want to avoid saying “I was/am depressed” so instead, I will say I am disheartened. So where shall I start?… Well, from the beginning I suppose…

I was looking into my life options (we will say that) and whether or not I could move to Ireland. Everything was working out in favor of me moving there until I found out one small detail; I started reading about the “rebound Effect” of Tysabri. I am not fully educated on the subject yet so don’t quote me, but basically (from what I understand) if you are on Tysabri and you stop taking it you will have a horrible relapse a few months later. The better the drug works for you, the shorter the amount of time you are on it, and the more aggressive your MS was before Tysabri the harder it is likely to hit you. I had an aggressive case of MS, I have only been on it about 4/5 months, and it is working great for me, good start…

I was originally thinking I could come of Tysabri after a year and switch to Gilenya… Two problems with that… ONE: In the few studies they have done on the rebound effect of Tysabri, it was clear that immediately switching to any DMD, even Gilenya, did nothing to prevent the relapse. Steroids also did not help at all. TWO: Gilenya and Tysabri are both second line treatments for Multiple Sclerosis, that means, when all the other drugs don’t work they move you to second line therapies. I believe Tysabri and Gilenya are the only two medication considered second line therapies. Second line therapies are not covered under Ireland’s healthcare system, they are available, but they won’t pay for it. Some hospitals will pay for it but it depends on their budget and only a select amount of people get approved for it.

Since I can’t pay $7,500 a month on medication, I would have to HOPE I can get on the list of patients who get the drug, but what if I can’t? What if I go through all the trouble of moving there only to find out I can’t get the medication I need?  I talked to someone from the MS Society Ireland and they basically told me I should have my neurologist call “the appropriate people” so I asked what he meant by that because I am honestly not sure so hopefully I get a reply tomorrow as we are talking via email.

It’s depre- it’s disheartening because this drug I fought so hard for, this drug that has turned my life around, it let me see a life I want so bad with someone I really want to be with, and now, it has turned into a ball and chain stuck to my ankle trying to keep me from this new life goal… I know they say nothing worth fighting for comes easy but man, don’t you think I have fought enough? Apparently not… So now I am just waiting for that email and then I will try to set up an appointment with my neurologist to see what he says because no one knows more about this medication then this guy, so he will be able to confirm or disprove all my concerns and paint me a much more clear picture of my options. I just need to take it one step at a time because thinking about everything and all the options I can come up with on my own, it’s overwhelming me and shutting me down, so I need to stop and just try to go with the flow. I am usually pretty patient but right now it feels so hard, I was trying to set up some life plans here and it all came to a halt because of this one, tiny, little detail. MS.

If you live in Ireland or the European Union and you know anything about getting Tysabri reimbursed please email me at mattalleng@yahoo.com, thank you so much!

8 thoughts on “Nothing Worth Fighting for Comes Easy

  • April 13, 2013 at 2:00 pm
    Permalink

    if you move to ireland – maybe have ur mom or dad FedEx you the Medication.

    problems with that would be customs.
    and also, then your Rx expires – you would need to come back to the USA.

    It is quite a complex situation.

    Reply
  • April 13, 2013 at 2:20 pm
    Permalink

    yeah i though about that, main problem is i only have insurance here till I am 26, PLUS it looks like that rebound happens regardless of meds and my one friend came of Tysabrii and the only thing that helped her major relapse that came after was getting back on tysabri, pft!

    Reply
  • April 13, 2013 at 7:59 pm
    Permalink

    Hey! I was diagnosed a little over a year ago and just found your youtube channel and blog a couple days ago. I've been watching our videos and finding solace in knowing I'm not alone. I just had to take the time to say… you're a bit of a hottie, Matt. Keep your head up 😉

    Reply
  • April 13, 2013 at 8:03 pm
    Permalink

    *your videos* I meant. Darn typo…

    Reply
  • April 14, 2013 at 2:20 am
    Permalink

    Haha yes, I have yet to do a video with you or any other MS'er. But there are lots of us of all ages, guys and gals, I have a group on Facebook, private, so no one can see you joined except those who are already in the group, let me know if your interested, you can meet many others with MS from all over the world!

    Reply
  • April 14, 2013 at 11:52 am
    Permalink

    I would totally be down to meet others on FB. It looks like I have to add you first. Have a good one and don't give up on your dream. Where there is a will, there is a way. For realz, it's true.

    Reply
  • April 15, 2013 at 12:35 am
    Permalink

    Hello Matt,
    Just wanted to let you know what a great blog you have! I also wanted to see if you'd be interested in having me write a guest post for your site. I am a Certified Health Education Specialist and freelance writer. Some of my work on MS can be viewed at Healthline.com, FightMSBlog.org, Patch.com, and FitnessGoop.com. I thought a piece on secondary symptoms (conditions like depression, ED, etc.) of MS might interest your readers. If you would like, I can get writing whenever you like. I wish you all the best–including continued success on your blog!

    Thanks and take care,
    Katie

    Reply

Leave a Reply