Good experiences on Tecfidera?

[Curly Girl]

Hi all. Considering a switch to Tec in the future, but perhaps to a diff. DMD. I read a lot of negative remarks about this drug, but also wondering about good things that people have experienced on it.
Choices at this point would be Tec, Gilenya, or Aubagio. Any advice or encouraging words?

[emrf2b]

Been on Tec for 9 months...

Hello,

I was dx a little over a year ago and have been on Tecfidera for 9 months. So far, my experience has been better than average from what I've read elsewhere.

I must say though, the first month for me was rough. At the time I was in my last semester of graduate school and I started Tecfidera the first week. If you can help it, try not to do something like that lol I was VERY sick (nausea, vomiting, feeling like death warmed over) by the third week. The first two weeks were fine and I mistakenly thought I had gotten away without side effects. Wrong! Worst week ever!

Since then, I've only experienced the flushing, which is not like "flushing" when you are exerted or embarrassed... To me, it feels like warm, dry hands wrapped around your neck (where I usually experience it). It's not pleasant, but totally manageable.

As far as effects go, after being on the med for 6 months, a MRI showed my lesions had healed quite well and the only new ones where tiny, almost hard to distinguish from the white matter.

Oddly, today I'm going to my Neuro to get blood work to check for the WBC count, so I can't comment on that. Hope this helps your decision making process. I'd give to a try if nothing else. PS...The process to begin Tec is very long and requires a lot of paperwork it took 2 months for me to see the starter pack, which is why I started the first week of a semester. It is specialty RX only. I was placed on the zero copay program which has worked great.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[REG53]

Hello Curly Girl,

I have been on tec for 2 yrs. I have not had a relapse and no change in my mri. I had little to no side affects in the beginning. After two yrs. I sometimes have flushing, a rash with itching which last about 20mins. to a hour.

I hope you do well with your choice.

[Jessica0404]

Hi!

I'm about to start my third month of tecfidera. I was nervous when I started too because of all the scary complaints. However, I followed the recommendations of others to make sure I ate a full meal (protein, fat, carb) and I had little to no side effects. I had mild stomach issues in the beginning but nothing that affected my life. Keep some ginger ale and tums on hand just in case.

Overall though I have more energy and focus. I have not had any symptoms return since I was diagnosed. I haven't had any blood work or new mri but I feel so much better. Im very happy with my choice. Good luck whatever you decide.

[PositiveMS]

All good

I've been on Tedfidera for almost two years. Only side effect ever was mild flushing. It still randomly happens sometimes. I've been relapse free since starting. Nothing but good things to say.

[Devilinside]

Totally recommend it!

Hi. I was on Copaxone for 4 years since I was dx in June 2011. I started Tec on August 2, 2015 after having one relapse and a few new lesions on Copaxone. I too was SCARED to death to start Tec after reading all of the horrible things some people were experiencing. I just figured I had to do it as a justice to myself and my health and worse case scenario I could go back on C if needed. The first week off the 120 were completely unenventful. Week 2 I started the 240mg pills thinking "oh no, here we go". Well, no changes, still felt fine.

Fast forward to today where I am in my 7th week. I had NO diarrea or vomiting/nausea at all. I've had a couple of issues with hearburn, but each time it is when I take my pill with eggs. At which point I pop a Pepcid before and I am good to go. The only thing I have on a daily basis is flushing, but only with my morning pill. I take my pill at 8 am and each day like clockwork, I start flushing around 12:30 - 1:00. I'm flushing right now as we speak. I took an asprin the first few weeks which took care of it, but I don't even do that anymore. The flushing is a total non issue for me. I just look red and blochy around my neck and upper chest, but I can deal. No biggie. I didn't want to take asprin every day if I didn't need it. Like others, I ALWAYS take my meds with food and keep snacks in my desk.

So all in all, it's been great for me. My neuro suggested it a year ago and I put it off due to my fears of the side effects. Now I am kicking myself for not starting it a year ago. Just keep in mind, you never know really until you try!

Best of luck and let us know what you decide!

[gplibrarian]

It works for me

Hi all. Considering a switch to Tec in the future, but perhaps to a diff. DMD. I read a lot of negative remarks about this drug, but also wondering about good things that people have experienced on it.
Choices at this point would be Tec, Gilenya, or Aubagio. Any advice or encouraging words?

I was on Copaxone for 5 years before switching to Tecfidera almost 2 1/2 years ago. I switched because I needed a break from the shots. I have not had a relapse on either med, but my stress level is much lower now. (I dreaded those shots every day.) I just take it twice a day and don't really think about it the rest of the time. Once in a while I get flushing that lasts about 20 minutes, and if it happens at work, I just say I'm having a medication reaction and that it will go away soon. If Tec gave me some energy, it would be about perfect!