BBHwithMS

"Inappropriate Momma, Recently Diagnosed REDNECK, MS Survivor, Keeper of Spanky

I have said that I will continue to update all of you on my experiences with taking Biogen‘s newly released disease modifying drug (DMD) for MS, Tecfidera.  I believe that this is week four, but I honestly apologize, time just seems to fly and days get clustered up together and I truly don’t have a fucking clue….but it’s been a while.  As I have said in prior posts, I have no side-effects and I no longer need to take it with food (although I do try to be conscious about this, because it does help me to eat.)  In my last post about Tecfidera: Tecfidera (Biogen) – A “NEW” BETTER? I mentioned that I did feel as if my symptoms might be improving.  BUT, as anyone with this stupid disease knows, who the hell knows.  Is it the meds?  Is it just a good day, or a few good days strung together, as a gift from the MS GODS?  Is it that FINALLY I might be experiencing some of the REMITTING part of the Remitting/Relapsing MS, that I have heard exists.  Although my walking and balance has GREATLY improved over the past 2.5 years (no cane or SEGWAY!!!) the pain and burning  and altered sensations have been there each and every day, just waiting to “kiss” me good-morning and tuck me in at night.

I view this as my “remitting part,” the time that I had always hoped I would feel a bit better, BE a bit better.  I had come to understand and accept that the pain and burning and altered shit was just going to be there, that it wasn’t part of the “deal” of having “better times.”  BUT I am beginning to have moments, little brief pockets of time, that the THING that hasn’t budged an inch since it started back with my DX in 2007 (the pain and burning and fucked up altered sensation thing) feels a little bit BETTER!  It is not an ALL the time feeling of improvement; it is fleeting and if I am NOT focused on how I am feeling, what I am experiencing, it can very easily go unnoticed.  With my life, and all that I do, taking note of myself and ANYTHING I am feeling, is an unlikely moment.  I have been trying to be more “conscious” of all of it, because I really would like to be able to answer people’s questions.  If I am going to put it out there that this medication IS helping me, I want to do so with a great deal of confidence.  I only want to endorse that which is worth endorsing.  BUT the other thing that is a tough call on this one, is that it doesn’t CLAIM to help with any of this SHIT, it’s JOB is slow down the progression of the disease, a “disease modifying drug (DMD),” and with THAT, I have another problem.  I DID go and have an MRI for the first time in three years; The Results are In and although I am super lucky that there has been no progression, no new lesions since my MRI in 2010, the fact that I haven’t been on a disease modifying drug, makes me wonder.  How am I going to be able to say that Tecfidera IS working, doing it’s job?  Is it warding off the disease?  Stopping some of it’s attempted “advances” on me and my body?  It seems that I was doing just fine all by myself, without “team Tecfidera” backing up my ass.  So why join the team?

Shawn and I talked about his quite a bit before I decided to start the new medication.  What it came down to, for me, is that IF I take it and the disease progresses, I can be mad at IT, Tecifedera and THEM, Biogen, for letting me down, not slowing this stupid thing down.  BUT, if I don’t take it, and the disease progresses, I will be made at ME, for not taking the drug, giving it a shot.  I realize that it can be argued that if I am taking the drug and the MS progresses, that it might just be that it would have progressed even MORE had I NOT been on it and so therefore it WAS still doing something.  This is all the shit that drives me absolutely ape-shit crazy.  It almost reminds me of some of the arguments that took place in my college philosophy class.  “To be, or not to be?”  “To have MS, or NOT have MS?”  BUT there isn’t that option.  I can’t “uncheck” the apparent MS box I checked when selecting MY life options out.  You all can call me crazy (or fucked-up if so inclined) but THERE is a part of me that doesn’t regret selecting that box on the life form.  Over and over in my life, it has been proven that EVERYTHING HAPPENS FOR A REASON, and so I would be foolish to not look at this disease, and the changes that it has made in my life, and look for the good.  The REASON.

So, I decided to give Biogen‘s new “miracle” pill, Tecfidera, a chance, and that decision was based SOLELY on the hopes of it slowing down the MS BUT these first few weeks have brought about another possible perk; improvement in symptoms (the SHIT) that I have come to just accept.  I was NOT expecting this, but am certainly NOT complaining.  I have made other “friends” from this blog and my new introduction to the world of Twitter (I am now a TWIT!) that have decided to give Tecfidera a chance.  One has had a super tough time with stomach issues, and has had to drop down to half dose again for the moment, and others have had hot flashes and flushing that don’t seem to be going away.  This makes me feel sad, and guilty.  I want EVERYONE to be able to feel better, to have a small glimmer of hope for some improvement.  I know this is NOT realistic, it is NOT going to happen, but I am hoping that maybe by putting some of my funny shit out there, that maybe I can at least give everyone a smile every once and a while.  I am NOT a cheesy, corny, hokey person, who is into group-hugs and singing Cum-ba-ya songs.  BUT I already feel I have made a connection to a bunch of AMAZING people through this blog, it it gives me encouragement that I SHOULD go out and tell my story, help people laugh and smile (even it it IS at my expense!)

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18 Responses so far.

  1. Nadja knauss says:

    Hi Meg,
    yesterday I have been at my doctor and he told me, Tecfidera won’t be avilable bevore Spring next year. That is Not really Soon, otherwise I Wonder if it will really do a better Job than Gilenia, the DMD I Take at the moment. My Main Problem is the walking and Gilenia is Not able to improve this. Do you think Tecfidera will be? meanwhile the only little chance I have Is doing my Physiotherapie workout every Single day.
    Sometimes I am in the mood to stop all this stupid Training an just… let it be.
    Well, that is not a really funny storry, I am Sorry for that.
    I am Looking forward to the next storry you will have to tell.
    Cheers!
    Nadja

    • Meg says:

      Hey Nadja!
      Welcome back! I honestly don’t know whether there is a chance that Tecfidera could help with the walking. I DO know that it seems to be helping me with my ever present symptoms (mostly pain, muscle spasticity, numbness and altered sensation) but since my walking improved drastically about 3 years ago, I wouldn’t know if it might have helped with that too. When people comment on my lack of using a cane and comment on how well I am getting around, I joke that I got a divorce. Although STRESS is a huge factor in everyone’s health and it definifly played a big role for me, the truth is that I began taking Ampyra (Biogen.) I am not completely sure what they claim it helps with (I think balance is what they say) but I call it my walking pill. I credit a LOT of my improvement, mobility wise, to it. Have you ever looked into that one?
      I hear you on the some days and stopping the stupid stuff and just letting it be, BUT I think for me, I would rather that I go down fighting….meaning if it DOES get worse, but I have tried what is available, then at least I tried. If it gets worse and I didn’t give the new medications a shot, then I am pretty sure I would be pissed off at myself.

      And although Spring may SEEM like it is a LONG ways away it seems (at least in MY life) that time just FLIES by!!!
      Take care & keep in touch!

  2. Nadja knauss says:

    I am living in Germany, and heared lately about this in Germany Soon avilable med “tecifidera”. So it is pretty interesting for me to hear about every experience anyone had made. Thank you for sharing.
    Nadja

    • Meg says:

      Nadja,
      HI! Thanks for reaching out! When will Tecfidera be available? So far, it has proven to be a great fit for me. I will continue to post updates, and I actually have been talking to the Biogen reps here in my area, about becoming a patient advocate for them. I would love to have the opportunity to go out and speak, to not only tell people about MY experience with the drug, but about everything that has come along with having this “oh so wonderful disease.”
      Cheers and stay tuned for more updates and stories.

      • Nadja knauss says:

        Hi Meg, I was glad to find a comment so Soon, thank you! The Way you are Talking abaut “this Wonderful disease” is really amazing.
        To answer your question, I don’t exactelly know, when Tecfidera will be avaiable, I will ask my doc…but it is so expensive, isn’t it?
        Cheers and I will stay Tuned for more Updates!
        ( Sorry for all the misspellings)
        Nadja

        • Meg says:

          HA, and I was mad at myself for not responding earlier when I first read your comment, but was on my phone and haven’t figure out how to do that from the phone. Ask your dr and let me know.

          Cheers!
          Meg

          • Meg says:

            Oh and Nadja,
            Thank you so much for the kinds words about my blog. Have really been enjoying writing, wondering what the heck took me so long and desperately want to find time to pull the damn book out and get it published!

            Cheers and keep in touch.

  3. Teri says:

    I have been on tec for a little over two weeks and other than a bit of flushing the symptoms have been o.k and an occasional stomache ache, just wondering if i will ever experience improvement in my ms symptoms. Sick and tired of being sick and tired.

    • Meg says:

      Hi Teri,
      Well, I just spent almost 20 minutes writing a reply to you, and then seems I managed to hit some damn button and it all went away!!!! AGAIN, technology can be GREAT and other times it can suck! What I said, was that I feel very fortunate that I had VERY few issues with side-effects with Tecfidera, and super happy to hear that it has been bearable for you. I feel as much of what I read, and those that I have heard from, are having severe problems and many are ready to give it up. I just want it to work for everyone. When I choose to start it I had not been on any DMD for about 3 years, and my hope was simply to try and curb future progression, and NOT to resolve ongoing issues with symptoms, but as my blog indicates, I am BEGINNING to think that there might be an add PERK to going on this medication. I THINK that my betters (the times when the pain is at lower levels, and my energy lasts) are getting better (meaning even LESS pain than in the past and MORE time before my energy leaves.)
      I don’t know what your symptoms are, but for me, what my MS life consists of at the moment is a constant pain in both feet and legs (burning and muscle fatigue/spasms/cramping) BUT at the same time I have VERY limited feeling in both feet and legs and altered sensation. It is SUPER difficult to explain that I have a TON of pain, almost ALL the time, and YET I don’t feel my legs and feet….WTF, even I can see that it doesn’t make sense. Pain, but no feeling!?!?
      I am so glad that I did start my blog, as it is making more accountable for what is happening with my body than I have been in the past. For the first 3 years I had issues with walking and balance and needed a cane (or my Segway) to get around. I did start Ampyra and I do credit that for a LOT of my improvement, but there is also something to say about STRESS. Two months after my divorce began, I put my cane away and have NOT used it since (and last month I took my “disabled parking pass” off my rear-view mirror! I plan on continuing to write about how I am feeling and my experience with Tecfidera (and EVERYTHING else.) I am hoping that these NEW BETTERS continue (and maybe even get BETTER!) If that does happen, I will definately give Biogen credit. I realize that it MIGHT just be that my body has decided it is time for a bit MORE of the remission part that I was feeling left out of, but there is just NO way to know. SO….IF I and IT is better, then I am not sure I really CARE that much WHY, just want to keep it that way!

      I hope that it works for you as well! Keep in touch!
      Cheers
      Meg

      • Sharon Pighet says:

        Hello Meg,
        My name is Sharon and I am a newly diagnosed patient (10 months ago). Would you mind describing some of your MS symptoms to me. I am feeling some kind of way all the time. Just want a little feedback on how other patients with MS are feeling. Thanks a lot for sharing.

        • Meg says:

          MS fog one of the symptoms?:) Sorry, that was only because of the two comments and one to Teri. Believe me, I know a fog:) Sometimes feel like I am living life a bit buzzed…ALL the time. And I worry that because of that, that I am missing out, not really being able to focus and enjoy moments that happen in my life. BUT…for the moment it is better, and for that I am thankful.
          Back to your questions, below you asked I was really feeling better, and I can NOW (after about 3 1/2 months) confidently say I am feeling better. BUT can I say that it is in fact because of the Tecfidera? NO, unfortunately I can’t, but I am going to just be thankful. I did not expect this drug to do ANYTHING for the day to day – EVERY day symptoms – the ones that have NOT left since I was diagnosed in 2007. That would be numbness in my feet and legs, often reaching up to my waist – accompanied by pain – which most of the time is a burning feeling but sometimes can be joined by massive muscle tightening and fatigue. BUT right now, it is better, I have mornings (and sometimes going into afternoons) that I can almost “feel” my feet.
          I will give an example, that is going to be in one of my next posts.
          I am currently on the East coast visiting with my family. It is an amazing island, and the kids and I spend our days vacillating between hanging on the beach, sailing, fishing, swimming, playing tennis and other “rough life” activities. One of my FAVORITE things to do while we are visiting is to go clamming down off the dock. A big part of that love is the fact that I LOVE eating clams, BUT the actually activity is SO much fun. As a young girl, my mother taught me how to stand in the water, about waist deep and shimmy and twist, to dig my toes/feet down into the sand, to find the clams, and to the dig the clam out with my toes, grab onto it and pull it up to grab it with my hand. NOT surprisingly MANY of those skills where lost when my MS set in. Certainly did not have the balance (was using a cane and my segway 100% of the time) so no shimmying or shaking for me. As for digging down and finding the clam, not a chance in hell, because I could feel a thing. BUT I am stubborn and so the first year, I went along with my dad and kids, down to the dock, determined to clam as always. I alligned myself next to a small boat that was moored off the dock and held onto it, while attempting a distorted (and pathetic) shimmy/shake. NOT surprising, I did NOT find a single clam that year, BUT I apparently DID find a large piece of glass, that as I flailed about trying to “feel” for clam, ripped the bottom of my foot apart, which I didn’t KNOW cause I didn’t FEEL until I was climbing back up on the dock (crawling actually because that was how I did it because I was scared I would fall) and my daughter, who was behind me screamed “what happened to your foot?!!” That was the end of clamming for me.
          UNTIL YESTERDAY….I went out, I STOOD…I SHIMMIED AND SHOOK….AND I found more clams than anyone else!!!! To me, that is better! And so I WILL credit Tecfidera.
          I would love to connect with you and I can tell you more about what I have had as far as symptoms and what meds I have tried, if you have any interest, please feel free to email me (if you prefer to NOT do this for the “world” to read:) meglewellyn@gmail.com. There is SO much that I still want to write up on my blog, just background info what, when, where, how stuff but there is never enough time in a day for everything I want to do:)
          Take care and PLEASE feel free to write with questions!
          Cheers,
          Meg

    • Sharon Pighet says:

      Hi Teri,
      I am currently thinking about switching my medication to Tecifidera. Are you really feeling better. Were you on a therapy prior to taking Tec? I’ve been diagnosed since October and still learning about my MS sickness. Please help! Thanks.

      • Meg says:

        Sharon,
        PLEASE forgive my delay in response, as you may have noticed if you read my most recent post, I am on vacation and although I REALLY intend to be on here blogging every day, it is proving to NOT happen that way. I notice that there are two comments here on my blog, one addressed to me, and one to Teri, wondering if the second one was intended for another blogger that you have found that is on Tecfidera. Just don’t want you to think a message was sent out to someone that never responds, because it accidentally ended up with me.
        SO, let me start by asking, what are you currently taking, and why are you thinking of switching? Is it not working? And is that determined by MRI or because of flair-ups and how you are feeling? There are many questions that I could ask, and although EVERYONEs MS is different, I am more than happy to try and answer any questions you might have. As I said, I see another comment, addressed to me just above and I am going to jump up there, to answer the questions you have asked already,
        Cheers!
        Meg

  4. Zara Gretti says:

    The 1st set of pills have not yet been sent. tempted to retry betaseron that almost killed me

  5. Grenglish says:

    you keep telling your story Meg and people will listen. You’ll be amazed how many people will stumble across your blog in the middle of the night, and read something that makes a difference to them or someone they know :-)

    • Meg says:

      Thank you! That is what I hope…to be able to help even one person; a smile at a moment when it didn’t seem likely, a story that rings true to someone else, or a bit of information that might make someone look at something in a new light. never going to claim to be knowledge-filled, but my life is certainly story-filled.
      Cheers and thanks so much for reading!

  6. Jodi says:

    I am still waiting for my month supply of the 1/2 dose to arrive. Some screw up w/ the shipping of it. . . ugh! I just want to get started to see if I’m going to get sick again.

    • Meg says:

      Fingers crossed for you that it arrives soon. Beginning to get a bit nervous, as I am down to just 3 pills left…mail order was supposed to arrive last Friday!!!!AAAAAGGGGHHHH


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