@Robean 

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Robean

2 months on Tecfidera - my experience!

Hi everyone, Hope you are all doing well in the lead up to Christmas! Thought I would do a little update post as I have been taking Tecfidera for almost 2 months now and when I was considering DMTs I found it useful to read other experiences! I can say now that my experience hasn’t been completely smooth but I think I am now coming out of the other side and I’ve got to say I think Tecfidera is great. I had some intense gastro side effects in week 3, severe diarrhoea lasting for about 5 days, I also felt generally unwell with terrible headaches and feeling feverish. I took the week off work (I work in a hospital so not allowed in with D+V symptoms anyway!) and I’m still not sure if it was a coincidental stomach bug but my MS nurse seems to think it was the Tecfidera so we’ll go with that m, I’m just glad it didn’t last any longer than a week! The following week, once I’d recovered, I went for my first monthly blood test. Unfortunately, the results showed raised liver enzymes and I was told I might have to stop taking Tecfidera but to get them rechecked in a week and see. I was honestly gutted as I chose Tecfidera for its effectiveness and convenience and (relatively) mild side effects compared to some of the others! Really didn’t want to have to stop so I was relieved when the following week my liver enzymes had gone down and after another 2 weeks they were completely back to normal so I have been allowed to continue! So all in all not a bad start! Since the diarrhoea in week 3 I’ve had no other real side effects. I’ve had a few episodes where I’ve felt extremely hot and itchy, looked in the mirror and had a bright red face and neck so I’m assuming this is the “flushing” symptom that people talked about but honestly it hasn’t happened often and when it has, it didn’t last long! I’m finding taking the tablets really easy to slot into my routine - 1 with breakfast or lunch (I sometimes skip breakfast) and 1 with dinner. I’ve worked out that it’s fine to be a little flexible with timings which is great because it fits perfectly into my life. So to summarise, my first two months on Tec have been up and down but so far I am happy to be taking this drug and thankful that it is being supplied to me by the NHS! Only time will tell if it’s working I guess which is hard to explain to other people as the first thing they ask is “do you feel better” but that’s not the point of this drug! I will try to update as the months go by for the benefit of people just starting out and choosing DMTs as I know how hard it is being newly diagnosed and faced with An overwhelming range of treatment choices!!
@Stumbler

@robean , I'm glad it's going well for you. Thanks for sharing your experience.

@Soph93

Thank you for sharing! I am starting Tecfidera in January (hopefully). Newly diagnosed so trying to take all the information in...