Biogen Tecfidera Update – Still FULL OF SHIT!:(

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I realize that it has been a while since I gave an update on my experiences with Tecfidera (Biogen Idec‘s new MS DMD.)  I believe that when we were last together, talking about this…I was in Shawn’s bedroom, in middle of the night, COVERED in shit and sobbing.  The good news is that it’s ALL cleaned up (amazing what some commercial rug cleaner and a steaming machine can do….maybe I should try and get an endorsement from a rug cleaning company!!!)  The bad news is that I still have not figured out how to resolve my issues with constipation.  I want to share what I learned yesterday; according to the nurse on the “Tecfidera Helpline,” constipation is NOT a known symptom of the drug.  I was informed that to date, NO ONE ELSE has reported this problem to their database of symptoms….no patients, no care-givers,no nurses, no doctors.  That means there are NO records of this being a symptom….none, nada, nein, nyet, nie.

BOY, don’t I feel special!

I am NOT implying that the nurse was rude, or intending to be unhelpful.  She was EXTREMELY kind, and polite, and as helpful as she could be; but at the end of the call, that “help” didn’t do shit!  Because even though my DOCTOR suggested that I call the Tecfidera Helpline, the nurse ended our conversation with this….”maybe you should call your doctor.”  Huh, ya think?  It’s the circle of life….around and around, I go.

BUT that is the problem, I don’t GO!!!  I need to figure out something, and fast.  In the post I wrote this morning, I talked about my experience with buying Depends.  I mentioned that it wasn’t because I was peeing my pants more often, and that it was just an “experiment” to see what they are like…BUT full disclosure is…I bought them as a precaution to what MIGHT happen as a result of this HUGE back up, and all the remedies I am trying.  To date, I have NOT had a reason to be wearing a diaper, but let’s be completely honest (as if THAT is a new thing for me!)  Let’s remember what Shawn’s house went through…and knowing THAT…one can only imagine WHY I might feel it necessary to have a “back up” plan on my “backside.”

I have left another message for my doctor (or at least the nurses there in the clinic) and will wait for a call back.  For those that are following this blog BECAUSE of an interest in Tecfidera and what it is like to be taking it – I guess that for the moment I am supposed to be telling you that all this talk about constipation and being full of shit it NOT Biogen’s fault – that it is NOT Tecfidera that is causing me to be full of shit.  The most truthful answer that I can give you is that I don’t know.

WHAT I DO KNOW:

1.) I DO know that I have NEVER had problems with irregularity or constipation before.

2.) I DO know that there is nothing else significant that has changed in my life – NO other new meds, no eating differently, stress levels about the same as usual.

3.) I DO know that they have had reported problems with “GI” issues, heartburn and “stomach problems.”

4.) I DO know that it seems to me that IF taking it can cause such problems it doesn’t seem a huge leap to say that it may cause problems with fecal compaction…BUT, I am not a doctor, so I guess I end this list of things that I DO know, with saying

I DON’T KNOW!!!

THAT is one of the most annoying things about MS – ALL the unknowns.  NOT KNOWING how I am going to feel this afternoon – will my legs be strong enough to participate in the birthday bowling Shawn has planned?  NOT KNOWING what tomorrow will be like, or WHEN the next flair up is going to hit.  NOT KNOWING what life will be like next year, or five years down the road.  NOT KNOWING when I will have to pull the cane and Segway out of storage.  NOT KNOWING if I will be confined to a wheelchair someday.  NOT KNOWING if the day will arrive when Shawn has to worry about diapers and changing me.

This all seems SO distant at the moment, because other than the “poop problem” (as my kids have named it) I am doing well.  MOST days are good days, and it does not go unnoticed or unappreciated that I CAN walk without the aid of a cane or walker.  I am grateful that the pain IS better and that there are actually now moments in my life when the voice in my mind STOPS the constant and repeated mantra “I have MS, I have MS” and I have brief moments of “forgetting.”

I could choose to sit here and worry about the “whens” and “what ifs”, but there is NO WAY IN HELL I am going to do that.  It’s a waste of time.  After all, the truth is, maybe if I hadn’t “checked the wrong box on my life application” and I didn’t have MS; maybe I would have been in a horrible car accident, that instantly left me paralyzed and unable to care for myself, or even THINK about what was lost.  Maybe instead of me “getting” MS, one of my children was struck with disease or sickness, and all I can do is sit helplessly by, wanting more than anything to make it better, to take the pain away; to desperately wish that it was ME instead of them living through such a terrible thing.   But none of that happened.  Instead, I got MS.

That really doesn’t seem SO bad, when I look at the alternatives.

For those reasons, as I sit her on my 43rd birthday, I feel lucky!  Lucky that I AM doing better; that I was strong enough to move forward with my life, and leave behind a situation that left me sad and lonely to find a new life that is filled with happiness, love and support.  Lucky that I have three of the MOST amazing children, that will continue to grow and drive me NUTS with their confidence and ability to argue; which will lead them into roles in this world, where they will do great things, and be kind and sincere and empathetic.  Lucky that I have great support and people that love me and will be there for me when the chips are down.

I will continue taking Tecfidera, because as was the case when I first started, I believe that I need to take an active role in trying to slow the progression.  If I choose to NOT take a drug that is available and “works” for me (meaning no flu-symptoms or allergic reactions or unbearable side-effects) and my MS progresses, I will be pissed at myself.  IF I choose to take the drug and my disease progresses, I can at least feel that I did try and prevent that progression, I did what I could do.  I suppose in a “worst case scenario” I could blame the drug, rather than myself, if I needed to vent anger and frustration.  But for the moment I am good and I am optimistic about the future (AND looking forward to my NEXT birthday, 44 has ALWAYS been my lucky number!)  I am not going to allow a little “poop problem” to get in the way of fighting back.

8 Replies to “Biogen Tecfidera Update – Still FULL OF SHIT!:(”

  1. I’m with Kelly! Book stores – and libraries – do wonders for my bowel issues.

    I quit taking Tefidera a few weeks ago. I had a bunch of things happening that began with Tecfidera… shhh, many of them have never been reported to Tecfidera/Biogen as side-effects. I let them know that “I AM REPORTING THEM”… pft.

    I didn’t have constipation issues, maybe. I have always had constipation problems, as well as the other end of that spectrum… water poop.

    So why did I quit?

    My teeth HURT. Bad. Like they had no enamel on them. It was awful. About a week after I stopped Tecfidera, my teeth are fine.

    I had lumps of adipose (fat) across my belly… they too have gone away.

    Acid reflux – gone.

    From this point forward there will be no DMDs for me. No more. Niet. Nada. None.

    Since the beginning of time, people with MS lived full lives and managed just fine. When I read around the web and do the research, comparing new data to old… there’s not much difference at all. Richard Pryor’s MS (for instance) progressed in the same manner without meds as many people today progress with meds.

    I can’t reconcile putting a load of toxic man-made medication into my already compromised body when I see no real evidence of increased quality of life. Speaking of quality of life, I can’t remember the last time I read a post, article, blip or blurb from someone on any DMD that was positive with no complaints of side-effects or concerns.

    So I’m done with it all. Give me my Adderall and Verapamil and I’ll manage the rest 🙂

    All done rambling now

  2. Happy Birthday!

    I am on Tecfidera too and I’m pretty sure it’s making me constipated. Are you taking any magnesium supplements? I’ve found that NOW brand Nervous System Support Mag Caps 400mg, have been doing a great job of keeping things moving since I switched to them a week or so ago. I had to use an enema to get things broken loose but after that I’ve been having shit happen regularly. And I read your post about the shit explosion… I would recommend an enema over a pill because you KNOW when that shit is gonna happen. I had to break down and ask my hubby to help me because I can’t get my hand around back there anymore lol. Good luck and I hope shit happens for you soon!

  3. Happy birthday:)
    I was very constipated in the beginning when I got MS. I ate so much fruit and salad and drank lots of water. I slowly got better, now after 6 years with MS i am still constipated but not as bad. Most people I know who has MS is constipated. I hope you find a way to help it a bit.

    http://oddparent.blogspot.dk/

  4. First of all, happy birthday!

    Second of all, I have one simple word for the constipation subject; COFFEE. Constipation is a very common (but not talked about) issue for people with MS. It MAY be the Tecfidera, I am not at all defending it as I have voiced my issues with that drug before, but maybe it was just a coincidence that your bowl problems started when you started taking the drug? Maybe you would have started dealing with that issue whether you took Tecfidera or not? ANYways, I was dealing with bowl issues for almost a year, I had no idea what to do, laxatives barely did anything and its bad to take them often anyways because your body can become dependent on them to have a bowl movement. I finally made a discovery; COFFEE.

    I stopped drinking coffee when I was diagnosed, the caffeine was giving me really bad restless leg syndrome, but I knew that coffee is said to produce bowl activity (though they are not sure why) so I decided to try. Two scoops of instant Folgers, 2 brown sugars, and a little milk/cream and 30 minutes later it’s like I never had any kind of constipation in my life! The caffeine might be bad but this works better for me than laxatives and stool softeners! Would decaf work the same? I am not sure and maybe later when I have a little more cash I will experiment!

    Try it out and keep up that positive attitude!

    1. HHHHmmmmm,
      I drink coffee…every day. I actually STOPPED drinking after giving birth to my third child because for SOME reason it all of a sudden gave me really bad acid reflux, but I started drinking it again about 3 years ago (the acid reflux thing was NO longer.) SO grabbing a cup of joe isn’t going to cut it. Between your suggestion and others (some here on the blog and more via private messages on FB and a few emails) I feel like I am being Debbie Downer, just saying nope, nope and nope. BUT let me be clear. I SO appreciate ANY and ALL suggestions, public or private. Although I have obviously TRIED different things and have gone to the nurses and doctors I have available to me, I am open to trying anything and do NOT want my saying “tried that” to be construed as “I have tried EVERYTHING and NOTHING works.” Something WILL work, just have to find THAT thing, so PLEASE keep the suggestions coming. Perhaps I should do a quick list of what I HAVE tried:
      **increase fiber – tend to eat a ton anyway but tried MORE
      **prunes, prune juice
      **more exercise- certainly NOT where I was at three yrs ago when I worked out 2hrs/7days a week, I DO walk the dog at least an hour every day and started doing strength and weight work again about 2 months ago
      **Metamucil for more fiber – nothing
      **Miralax – have tried even bumped to 2xs a day (but that MAY have been what led to Shawn’s house shit issue)I actually DID continue the 2xs daily after that, in the hopes that was the start of cleaning out the pipes, but nothing significant since….and that was ALMOST a month ago.
      **laxatives in pill form; actually nothing happened but NOT something I want to continue on a regular basis anyway.
      **already drink coffee (and diet coke with caffeine)
      There may be other things that I have tried, but I am actually headed off to enjoy a little bit of birthday with Shawn, so will write more later if I think of something else.

      Cheers, and take care!

      1. Hmmm….. You listed….. everything I was going to suggest. So logically speaking (process of elimination) something in your diet/medication must be causing it because all that should do it…. I guess going the “blame the meds” rout leads me to say this; Just because they have not identified it as a possible symptom doesn’t mean it isn’t possible. Tecfidera is so new that they are bound to have not discovered something! Wish I had better advice but I am barely figuring this out myself haha… Hope you enjoy your birthday!

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