Any Tecfidera Advice?
Greetings,
I’m new to the site so this is my first post. A little history on myself, I was diagnosed with RRMS in 2013. I’ve tried treatments such as Gylenia (which was short term due to complications); Aubagio (which I had to end due to stress upon my liver). I began seeing a new Neuro whom has scheduled me to begin Tecfidera. My previous Neuro (whom I love and miss) wanted to place me in the six month infusion treatment which I after extensive research I was anxiously looking forward to beginning. However the new physician wants to table infusion and in its place Tecfidera.
I tested positive for the JC virus a few years ago (which I informed the new Neurologist) and a positive JC virus screen leading to possible PML is one of the major side effects to the Tecfidera.
I was wondering if anyone could provide me some feedback on your experiences with the medication. I’m due to begin treatment this week. Any personal advice, and or input would be greatly appreciated.
Hi @ladymummy82. If you type into the search box, there re lots of posts about Tec. We have to have bloods and urine tested every 3 months to monitor levels. Tec can have some nasty gastric side-effects but I have been taking for over a year with no effects at all. The most important thing is to take it with food, and that should be a mix of high fat and protein. It’s two tablets a day and you should ideally space them out as far as possible. As with other DMDs there is a risk of some hair loss and of weight gain. I didn’t lose much hair, and others that do tend to recover from this over time. I put on weight but have lost it all on a successful Keto diet. So, I am very positive about it. An mri last month showed no new lesions. Good luck! X
I've been on Tecfidera for just over 6 months now, first couple of months were quite tough going on the stomach and I either had bad constipation or the complete opposite but once my body got used to it and I learnt what foods to eat and what not to eat (baked beans are very bad for me) it hasn't been too bad. My stomach does still occasionally play up, it just feels like trapped wind but it only lasts for an hour or two and it only happens once or twice a month. Everybody is different and there's no way of knowing how you will react for sure but searching on here for Tecfidera will show that it's mainly positive responses, once the first 6-8 weeks is out of the way at least but even that was manageable for me (I was able to work full time during this period).