10 months on Tecfidera

[PositiveMS]

I just thought I'd drop in with my Tecfidera experience. I started mid November 2013, and have been on it ever since. Besides some mild fatigue and a runny nose/flushing at the beginning, things are great.

I find being on Tec has done something to make me feel more normal again, and I have been relapse free since. Before switching I had about 3-5 relapses of varying intensity in the previous 2 years. Knock on wood, but I really feel confident now.

I just wanted to offer encouragement because I clung to ever word on this board when I first started.

[frosty123]

Thank you.

Starting first dose on Wednesday, your post gave me a boost!

[PositiveMS]

I'm glad That's what I wanted to accomplish today.

[erinnn]

I start in a week and was really happy to read your post today too!! I'm participating in an after market study, I'm just anxious to get on something, while i was only diagnosed a couple weeks ago. This whole roller coaster started almost a year ago with symptoms which led to MRI and the rest is history. Everything I have read is get on a med as quickly as possible. I hope my experience is as good as yours!

[PositiveMS]

I hope you have a great experience as well Let us know.

[0lala0]

Thank you for posting. This is exactly what I was seeking out tonight. I've been on Tec for about a month and a half and most of the comments you can google are from people in early 2013 complaining, before people knew all the tricks to avoid bad side effects. I'm glad Tec is working well for you after all this time. It's reassurin to read.

[MallyCT]

That is great, Positive!

I have been on tec for just over a year and have been feeling great as well. Great energy, clear head, not as fatigued as I had been on Avonex. I hope we all of great luck with Tec!

Be well, be strong!

[Naty15]

Starting Tec this week!

Thank you for your feedback! does give me hope that I'll be okay I'm just nervous about the cost since I'm only receiving biogens 14 day free trial and we are still working with my insurance to cover it afterwards. If you don't mind me asking how did you get financial assistance?

[PositiveMS]

As far as how I got Tecfidera covered, I waited for my insurance to cover it for about 6 months. My company was the last holdout to cover it!

I got lucky in the end because I was chosen by Biogen to be part of a study for Tecfidera through my MS clinic, so I get it for free. It just requires me to give blood for the study every 3 months or so for a year.

I hope it goes well for you and that you get coverage

[Naty15]

Thank you!

Thank you! I'll keep that in mind.

[daraslyte]

i have been on tecfidera since about the time you started it last november and i have to say i still get alot of burning, flushing, itching skin and i have had a relapse about 3 months ago and my doc said if i have another onehe will switch meds' But do you get hair loss also ? everytime i shower or brush my hair i pull out gobs of hair. It concerns me to no end about the hair loss. if you can get back to me i would appreciate it. thank you

[PositiveMS]

Hi Daraslyte I'm sorry you're still having relapses on Tecfidera. Not every DMD works for everyone. I had relapses every few months on Copaxone and I know how frustrating that was.

About the hair loss, no, I personally haven't had any on this med, but I have noticed a few threads here where others report hair loss, so I don't think you're alone in that.

[0lala0]

i have been on tecfidera since about the time you started it last november and i have to say i still get alot of burning, flushing, itching skin and i have had a relapse about 3 months ago and my doc said if i have another onehe will switch meds' But do you get hair loss also ? everytime i shower or brush my hair i pull out gobs of hair. It concerns me to no end about the hair loss. if you can get back to me i would appreciate it. thank you

I have hair loss. I have always lost a lot of hair since I also have hypothyroidism, but recently noticed that my hair is super thin now. For now Tec is still worth it to me. I've heard others on here talk about supplements and Rogain to counter act the hair loss. That might be helpful, I know I'm going to look into them. Good luck!

[rsinger]

tecfidera

Just wondering how your lab work is looking after 10 months on tecfidera. How is the WBC and the liver enzymes? Been on about 4 months. No new blood work yet.

[football-mom]

Just wondering how your lab work is looking after 10 months on tecfidera. How is the WBC and the liver enzymes? Been on about 4 months. No new blood work yet.

I started in December, so I am at 10 months now. My blood work was great at the 6-month mark and in December I will take my one year blood work and MRI.

I hope my MRI looks good because I weathered the side effects and don't have them anymore and I would really hate to have gone through all that and it not be an effective treatment. But I really think it is working for me, fingers crossed.