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Tecfidera

Hope someone out there can offer some advice because i am feeling absolutely awful.

Was diagnosed with RRMS in July 2014. My MS specialist gave me a choice of DMD’s that were available to mean and told me to go home read up on them and decide which if any i wanted to try.

Decided on Tecfidera but was told it hadn’t yet been approved by NICE but that it was highly likely that it would get the green light and should then be available for prescribing from November onwards.

Finally got confirmation that i was on the waiting list in December. Received my first prescription at beginning of January.

Am now on second week of the double dosage. Had some stomach pains and nausea on day 3 and 4 of first week of single dosage. Again had some nausea and stomach pain in first week of double dosage. Am now on week 2 of double dosage and been feeling really ill for past 2 days. Was sent home from work with agonising stomach pains, back pain and nausea on Friday. By Friday evening was feeling so ill didn’t know what to do with myself. Spent all day Saturday led down still feeling rotten.

Am now seriously questioning whether this new wonder drug is doing me more harm than good.

Hi Matt sorry u feeling so bad. I’ve been on tec coming up 10months. The first couple of months can be trying but it will get better. His ur Ms nurse recommended taking Asprin for stomach pain? That should help a lot as it will also help with any flushing u may have too? It would be worthwhile giving it a try. Please try to stay upbeat things will get better! You should join a fb group there’s a couple specific to tecfidera and we r all in the same boat. The best one is “tecfidera for MS support group” they have over 4000 members. A new one that has just opened should also be great it’s called “tecfidera MS UK-US and the world open to everyone” the second one is a joint UK & us admin to incorporate experiences from american tecfidera users who obviously are a great help as many have been on tec for a long time, with UK issues

Claire I got two emails from you today about this, are you trying to sell something?

the important thing with DMDs is that you are at least doing something, to skew your long term health towards a more positive outcome; ie less disability, slower progression.

to this end, it is important that you are at least able to take something. do not be shy of tecfidera. it is the most effective DMD out there without going for hospital based infusions and it doesn’t require a single needle.

like MS itself, how a person takes to a DMD is entirely individual. for me, tecfidera has presented very few, minor issues. i attribute this ‘good fortune’ to the following:

  • very gradual introduction of the drug to my body; week one - 1 pill daily; week two - 2 pills; week three - 3 pills; week four - full dose
  • an aspirin 30 minutes before every dose (for the flushes / hives / itches)
  • a full stomach for every pill (not necessarily fatty, protein rich or anything else. quantity over any form of quality)
  • taking the pill whenever i felt like it - the only dosing rules = two per day at least 4 hours apart from each other.
  • stomach cramps - cured with paracetamol.
  • itching / flushes - cured with anti-histamines.

there is also some suggestion that coffee and dark (eg 90% cocoa) choc help the medicine go down.

good luck and persist! each day your body grows more accustomed to this ‘dietary supplement’.