Tecfiera - Dont be afraid!

[stephledo]

Thank you so much for visiting my post. I am sure you're reading this right now with some reservations and fears about taking Tecfidera. After reading all the horror stories online I was so insanely scared I was going to be on my bathroom floor rolling around in abdominal pain, nausea and diarrhea for a month. However, I am actually quite surprised at how the last two months have turned out. I listened to LadyMac's advice and a number of other suggestions online, and I would love to share my experience in how "so far" I have taken Tecfidera with minimal to no side effects. Upon beginning the starter pack, I took 320mg of enteric coded aspirin one hour before I took my first pill. I also started my day with a full breakfast- sausage egg and cheese breakfast sandwich. I take my pill between 8 and 9 am. I did feel some flushing and was red in the face and arms for about an hour....but it went away. There were times in the first week that i felt full and bloated right around lunch time, but that went away as well. Then after eating a healthy dinner, I take my 2nd pill between 8 and 9pm. I followed this regiment for the first week. During this time, after doing some considerable research, I decided to go gluten and dairy free as well. However, it hasn't adversely impacted the absorption of the medication...of which I am so thankful. Again, I was so extremely terrified to take the full dose of 240mg. I remember feeling slightly flushed around 12:30 pm...4 hours after I took the pill- and that was it. Since starting the full dose over three weeks ago, I have felt pretty normal. Before I started Tecfidera I was having an MS flare up- which included tingling, numbness, and weakness- and all of those symptoms have nearly disappeared. I still have great trepidation about the medication in general - like risk for PMI, high liver enzyme levels, proteinuria, and low white blood cell count...but for right now I hope it is reducing inflammation and stopping the progression of the disease. Please don't be afraid of Tecfidera and all that you read or hear about. Please let me know if you have any questions about my experience and hopefully you can and will have a positive experience too.

[rancholulu]

Hi Stephledo, thank you for sharing your Tecfidera story thus far!

I just want to echo your sentiments. I too, read a bunch of scary stuff posted by the unfortunate ones who suffered horrible reactions with Tecfidera (and if anyone whom I just described is reading this, I am so sorry you had those side effects ).

When I was on the starter dose, I experienced mild flushing a few times, always about 4 hours after my morning dose. Maybe once after the evening dose. I'm now on day 6 of the 240mg dose, and so far I've only had mild stomach cramping and flushing of my arms, chest and neck about 6 1/2 hours after the morning dose (which seems like kind of a long time after, right? My boss sent me home yesterday because he thought I was having an allergic reaction. I tried to explain that no, it was just side effects from my medication! But then I was like, well, it's a chance to leave early, so I took it!). Of course the flushing/cramping is uncomfortable while it lasts, but it seems to only last about 30-45 minutes and then I'm okay. I just hope it continues this way, I'll take it compared to what my fears were.

I'm super new to MS, was diagnosed only a little over a month ago, so as far as I can tell, I'm feeling pretty good with the meds so far. I have days that I feel like my legs struggle with gravity more than others! But that might not have anything to do with MS!!

[ElliotB]

I certainly wish you success but wonder why you would consider this particular medication with the issues you list (risk for PMI, high liver enzyme levels, proteinuria, and low white blood cell count) when there are other medications that do not have these risk factors.

[Greenmachine]

Thanks for the low down and great news for you to have minimal side affects. I am about to start Tecfedera on Thursday and I hope my experience with it is as good as yours as I have also been a bit worried reading about others nasty experiences with it. I have also read the positive stories so I think it will be a great DMD as long as my body accepts it.