Just looking for some advice. I just recently got diagnosed with RRMS, I’m 25 and this has come as a huge shock. I had an appointment yesterday with my consultant who would like me to start tecfidera.
I am completely needle phobic so when the consultant mentioned tablets I was relieved, but then he mentioned the side effects. I suffered really bad food poisoning as a child and I’m absolutley paranoid about being or feeling sick! I’ve read some right horror stories on here and I’m just looking to see how other people got on?
Hi. I’ve been on Tec for 23 months or so. No side effects at all. I take the tabs twice a day with food. Lympho count and MRIs all good. I really can’t fault them tbh. For most, side effects will be no more than flushes or an upset stomach both of which usually settle. There are much rarer but serious risks too so read the pages on this site to educate yourself. Stay safe. Retro.
I started on tec just over a week ago. So far a bit of flushing but nothing major - it usually settles down within half and hour and I’ve not had it more than once a day, some days not at all. No other side effects yet but am tapering up to the full dose - at the moment only taking a quarter of what it will end up being so we’ll see how it goes then!
Retrovirus do you drink alcohol? I like a glass of wine most evenings, normally just one but sometimes 2 or 3 It’s one of my main worries about tec as it’s a simple pleasure at the end of the day I don’t want to have to give up. The nurse said I could take my second dose with lunch, rather than dinner, as long as it’s 5 hours after my first dose, but I would’ve thought it would be better to space them out. Just wondered what you do in regards to this? Thanks x
Hi, I try and take my tabs around 12 hours apart give or take an hour or two. So generally breakfast and dinner. If I recall, the blurb says allow a minimum of 4hrs between doses and take with food so this works for me. Actually, on the medication box itself, it advises 12 hrs between doses and to take with food or a meal.
I’m afraid in terms of a glass or two of vino I can’t help, I virtually never touch alcohol and never since my diagnosis.
In the blurb I got when first starting Tec, it says ’ moderate alcohol consumption does not seem to impact the effectiveness of the medication or cause an increase in side effects, however drinking more than 50ml of strong alcohol within an hour of taking Tecfidera should be avoided as this can cause Gastritis’.
So with a bit of forward planning you should be fine.
I have taken Tecfedera for around 4 years now. I only get side effects if taking without food. I would recommend taking with something bulky i.e. not just a fruit salad. The good thing about these tablets is that they are labelled morning and evening and have days of the week. I very often stop and think “did I take my tablet earlier?”. The answer is on the packaging!