Sharing this info for people wanting to hear others' experiences with their first dose of Tecfidera. Keep in mind I'm very sensitive to medications. (i.e. Copaxone tried to kill me by putting me into anaphylactic shock; Avonex gave me terrible flu-like symptoms for 36 hours each week even after 7 years of it; Rebif gave me a full WEEK of flu-like symptoms.)
10:35am: Took 324mg aspirin (4 baby tabs) with a few crackers.
11:25am: Took first 120mg dose of Tecfidera with a bowl of steel-cut oats.
1:15pm: Face feels a bit warm, but I just finished my violin lesson that took a lot of effort.
1:30pm: Definitely flushing. Face and ears burning. Looked in mirror and face, ears, upper chest are very VERY red.
1:55pm: Feeling dizzy, but might be slight panic. Also, shoulders and upper back are red and burning.
2:05pm: Arms red, too.
2:25pm: Hot burning in face seems to be calming. Still feel it in my ears, back of my neck. Arms are itching a bit.
2:45pm: Ate a piece of toast with butter per Krista's recommendation. Some of the flushing is receding.
3:15pm: By the time shower was done, most of the flushing from my face, ears and arms was back to normal levels of red for me. Upper chest was still splotchy. Face and ears still *feel* warm, but the redness isn't really there. Also feeling very tired now.
3:50pm: Stomach a little queasy but haven't eaten all that much today. Took one Tums tablet. Going to take a nap now. Most of the redness is back to baseline, but skin still feels warm and itchy.
5:00pm: After nap, stomach was fine, and flushing was gone. Still feeling very tired though.
Now I'm just waiting for my next dose.
Oh, and about the PML risk: I am not reading too much into the "news" articles that have come out. They've known this information for a long time, even through clinical trials. Fumaderm is NOT the same drug as Tecfidera, and even though they're "cousin drugs", I'm still not worrying. I had a discussion with my neuro about it, who says he does not believe is the dimethyl fumerate that caused the PML, but the other medications the patients were taking (which were also immune modulators or more often, suppressants). For me to be comfortable enough to take Tecfidera is saying a lot, because not only am I JCV+, I had a friend who was on Tysabri develop PML and saw first hand how terrible it was. Just my thoughts. Talk to your doctors! Get all the information you can, not just "news" articles that leave information out, and make your decisions based on that! Good luck!
10:35am: Took 324mg aspirin (4 baby tabs) with a few crackers.
11:25am: Took first 120mg dose of Tecfidera with a bowl of steel-cut oats.
1:15pm: Face feels a bit warm, but I just finished my violin lesson that took a lot of effort.
1:30pm: Definitely flushing. Face and ears burning. Looked in mirror and face, ears, upper chest are very VERY red.
1:55pm: Feeling dizzy, but might be slight panic. Also, shoulders and upper back are red and burning.
2:05pm: Arms red, too.
2:25pm: Hot burning in face seems to be calming. Still feel it in my ears, back of my neck. Arms are itching a bit.
2:45pm: Ate a piece of toast with butter per Krista's recommendation. Some of the flushing is receding.
3:15pm: By the time shower was done, most of the flushing from my face, ears and arms was back to normal levels of red for me. Upper chest was still splotchy. Face and ears still *feel* warm, but the redness isn't really there. Also feeling very tired now.
3:50pm: Stomach a little queasy but haven't eaten all that much today. Took one Tums tablet. Going to take a nap now. Most of the redness is back to baseline, but skin still feels warm and itchy.
5:00pm: After nap, stomach was fine, and flushing was gone. Still feeling very tired though.
Now I'm just waiting for my next dose.
Oh, and about the PML risk: I am not reading too much into the "news" articles that have come out. They've known this information for a long time, even through clinical trials. Fumaderm is NOT the same drug as Tecfidera, and even though they're "cousin drugs", I'm still not worrying. I had a discussion with my neuro about it, who says he does not believe is the dimethyl fumerate that caused the PML, but the other medications the patients were taking (which were also immune modulators or more often, suppressants). For me to be comfortable enough to take Tecfidera is saying a lot, because not only am I JCV+, I had a friend who was on Tysabri develop PML and saw first hand how terrible it was. Just my thoughts. Talk to your doctors! Get all the information you can, not just "news" articles that leave information out, and make your decisions based on that! Good luck!
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