Comments on: Biogen Tecfidera Update…Full of Shit

By: Multiple Sclerosis and Constipation – BBHwithMS

Multiple Sclerosis and Constipation – BBHwithMS — Sat, 01 Dec 2018 18:32:09 +0000

[…] Back in 2013, when I began taking Tecfidera, the one and only “side-effect” that I experienced was constipation. Back then- mere months after it had come to market – “constipation” had not yet been listed as a possible side-effect, which meant I was told by both my doctor and the nurse on the helpline for the pharmaceutical company, that my constipation could NOT be from the new foreign substance I was putting into my body daily. I was told it must be something I changed in my diet, my exercise routine, or perhaps as they suggested I wasn’t drinking enough water. But let me assure you, I was drinking PLENTY of water. Seriously, like excessive amounts of H20 because I just KNEW that drinking water and staying hydrated is the very first rule in NOT being constipated. So as the days ticked by and my body failed to make a bowel movement, I drank water. I drank and drank and drank until I was constantly and chronically at risk of peeing my pants (which in this case would have had NOTHING to do with my disease). But whether or not it was listed as a possible side-effect is irrelevant, because I know my body best and I knew that it was the start of my issues with chronic constipation. Those issues were then compounded by the opioids and pain pills I took when my chronic pain became severe–especially after I returned to work and spent 40+ hrs a week sitting in front of a computer and stopped hitting the gym and swimming daily. […]

By: Meg

Meg — Tue, 31 Dec 2013 19:30:23 +0000

In reply to Meg. EXACTLY - use preemptive moves to avoid blockage!:) Let me know how it goes!

By: Meg

Meg — Mon, 30 Dec 2013 23:14:33 +0000

Hi Ann,
Sorry it took so long to post you comment and respond, no matter what I do (or don’t do) the holidays are ALWAYS super crazy around here. As I just told another reader, I did go off of Tecfidera for a very short bit (to cleanse out my system, which happended pretty quickly) and then started back up with only one dose a day, then slowly bumped back to full. I am still struggling with the constipation stuff, but not a severe as before, and at least NOW I know to pay attention:) I hope that your “contractions”have gotten better. I know that as with any meds, there are those that have NO problems (which is what I thought was the case for me, UNTIL the shit hit the fan) those that have such severe problems that they can’t continue and those that are somewhere in the middle. I think that in some ways, those in that middle group have the most difficult situation, in trying to decide whether or not the side-effects and discomfort are worth the payoff of hopefully warding off the dreaded progression.
As I have written, my WHOLE situation has changed drastically over the last three years, as I went from having flair-ups pretty frequently (seemed I was averaging about one every three months) to having only ONE in the last three years. SO, NOT having flair-ups NOW, I can’t say whether it has anything to do with Tecfidera, or not, but at least for the time being, I am willing to believe that maybe it is….who knows. Oh the joys of the whole MS – not knowing crap:) Fun times:)

By: Meg

Meg — Wed, 04 Sep 2013 20:15:47 +0000

In reply to Estizer A. Smith.

ARE YOU KIDDING ME? I LOVED TANG! (and definitely NOT too young:) I tried metamucil, but it didn’t do anything. I am now trying something else, that does seem to be helping a bit. Of course it WOULD be helpful for me to TELL everyone what it is, so that they can try it, if they are suffering from fecal compaction (sorry, just cracks me up every time I say/write that now.) BUT I can’t remember what it is called. I will look when I get home and reply with the name then.

Cheers!

By: Meg

Meg — Wed, 04 Sep 2013 20:10:49 +0000

In reply to sheracar. Hope the increase dosage went well. I have a number of friends that are nutritionists as well as getting some training myself when I got my personal training certification, but certainly a GREAT suggestion, for anyone, MS or not:) Cheers!

By: Estizer A. Smith

Estizer A. Smith — Wed, 04 Sep 2013 19:38:47 +0000

LOL! Hi Meg, of course we want to know 🙂 I recently did a post on constipation. I don’t remember, in the end if I thought it was my Tecfidera or not. Maybe I blamed my Wellbutrin. None the less, a lot of my day goes into thinking about this. Now I actually count my glasses of water. I’m currently drinking a glass of metamucil every other day. It’s cool, it takes like Tang! Do you remember Tang?? You might be too young. It was the drink of the Astronauts :))
http://msopenmic.com/2013/08/04/constipation/

By: sheracar

sheracar — Wed, 04 Sep 2013 02:03:29 +0000

As far as I can remember, if I used the bathroom at least once for the week then it was considered a good week. That was my norm sooo I actually thought that was normal. Since changing my lifestyle (post MS) I am eating much better i.e. a more balanced meal. Def more veg and more fruits. And things got much better. Not great but better.

Today makes 2 weeks on Tecfidera and I still experience the itching and hot flashes (well at least I know what awaits me when that time comes). But the best part is that I go at least 1X daily. Ohhhh sooo happpy. Tomorrow I up it to the higher dosage and of course a bit nervous to know if my body will dislike me which will lead to side effects.

I had a smoothie this morn and took my Tecfidera with no stomach issues. Maybe check with a nutritionist because it might be time to adjust your diet as a long term plan.

Good luck!