Tecfidera and vitiligo

[Kgerber]

Hello. I am new to this website. Thank you for all the valuable information. I was diagnosed with RRMS 10/13. My neurologist immediately put me on Tecfidera. I was so lucky with the start up of Tecfidera. I had very few side effect and thought I can handle all this. I have been on Tecfidera now 18 months and recently my vitiligo which has been stable over 10 years has exploded all over my body. My skin burns and it is constantly red. Where there are red marks a few days later I will have white patches. I have lost most of my pigmentation in my legs in about 2 months. My neurologist wants me to change medications because it's still so new that I could be one of the rare cases of such a reaction. However my dermatologist said not to go off the Tecfidera because it may have benefits for vitiligo. The dermatologist is going to treat the flare up with steroids and light therapy but it will be a long long road to re pigmentation. Also seeing a second doc for 2nd opinion. Scared to go off of the Tecfidera because everything else seems so toxic to me, yet I am now scared to stay on it because of what is happening. Anyone else out there suffering with this as well? I know there are cases on different websites discussing hair loss but nothing with loss of skin color.

Karen

[carolsue]

I have never heard of this, but I am so sorry for what you're going through. Best of luck.

[scottmpls]

I am also experiencing this same issue after about one year of use. My vitiligo was also stable for about 10 years. It was originally only in one area. Now this original area has grown and starting to get spots on my hands now. Did you end up going off tecfidera and did it help? Thanks

Scott

[Froggie]

Scott and Karen,

I'm so sorry to hear of the exacerbation of your Vitiligo while on Tecfidera! That must be extremely frustrating to you both. That being said, I just happen to be friends with the world's expert on Vitiligo and I will ask him if he's aware of potential flare ups with this drug. He knows I take it, though I don't suffer from Vitiligo myself. I will post a more detailed answer when I talk to him.

[Kgerber]

Thank you for your comments. I am seeing one of the top vitiligo experts as well. Dr. Pearl Grimes. She recently ran an extensive blood panel on me and my T cells are way off. She thinks I am too suppressed and should consider other medication. I am undergoing light therapy and steroids to try to repigment but nothing is working. It has to be the Tecfidera because it is just constantly spreading with new spots daily. I think I fall into that less than 1% and the real bummer is that I have no other side effect with this drug. Not sure what drug to take now but I will most likely be stopping it soon to see if my skin color comes back. Scott, keep a close eye on the vitiligo and don't wait to seek help if it really takes off like mine did.