Tec - what to expect?

Everyday living
1

Hi, approaching the final hurdle in the quest for Tecfidera now - apparently the prescription has been done - but I have a few questions about how it will affect me.

Firstly, has anyone experienced hair loss?

I thought I had read that someone had, but can’t find it now. I had significant hair loss along with the start of my big relapse last year, and now have a halo of new hair, but as the anniversary of that lesion approaches I am getting anxious (silly, I know) that I am about to have another relapse and am watching out for signs. If my hair does start falling out again, I know I will panic, so if this is something that also happens because of the Tec, I’d like to be forewarned. I’m past the point of worrying what I look like btw so not bothered from a vanity point of view.

Secondly, will I start getting infections as my immune system is damped down? Should I start avoiding people with colds and being more careful about food poisoning risk etc?

Finally, can someone give me a suggestion for a hearty breakfast that doesn’t involve bread or fried stuff? I suggested muesli and a banana to my MS Nurse but she didn’t think that would be enough to counter the effects, at least in the beginning. I always do eat breakfast, but bread makes me actually ill and fried breakfasts make me feel ill, so it’s a bit of a challenge.

Thanks to everyone, particuarly Paolo S, for bolstering my resolve on the Tec vs Plegridy issue. Once I said that Tec was what I wanted, I didn’t meet with any oppostion, maybe it was a cost thing after all. Now to see if my notoriously sensitive stomach can hack it - it would be so embarrassing to have to give up because I can’t keep it down!

1 Like
2

no. in fact quite the opposite; i swear my legs have gotten hairier since starting Tecfidera. Being a bloke, this is of no consequence.

Secondly, will I start getting infections as my immune system is damped down? Should I start avoiding people with colds and being more careful about food poisoning risk etc?

no. in fact quite the opposite. my missus has historically, always been able to shrug off coughs and colds in a day or two, even though i was blighted for way over a week. since the start of tecfidera, this trend has been reversed!

now… in reality, this might be a result of my healthier eating habits which started around the same time as my Tecfidera taking. But it still shows that immuno-modulation doesn’t carry with it a vulnerability to seasonal lurgy.

I am also very lucky in that i can continue to play sport; my sport of choice invariably sees team mates hacking and spitting. I was therefore concerned like yourself about additional risks of infection. My neurologist assured me that there was no concern, and after several years of testing this, he has thus far been proven correct.

Finally, can someone give me a suggestion for a hearty breakfast that doesn’t involve bread or fried stuff?

Why? Eat whatever you want to eat. laugh

Your starting this drug affects you in no discernible way; It is merely a life enhancement and so you do not need to change anything to accommodate it.

It is correct that to minimise / avoid gastro-based side effects, you need a belly full of grub. But if this doesn’t usually occur until lunchtime, then simply take daily dose #1 at that time.

But with that said, if you eat a bucket of muesli and a bunch of bananas for brekkie and feel full, your nurse was out of line to suggest it would be inadequate. There are no specific food types; there are not even specific food quantities; it is entirely subjective; YOU need to feel full.

For example, I eat nine slice of bread for breakfast; no marge, no jam, no marmite, just dry tasty whole grain bread. nine slices of them. For me this works. For me, i would eat this even if i were not taking Tecfidera. if i were a MS nurse, i would not dream of instructing you to consume the same amount / thing to dodge any pukey sensations.

Thanks to everyone, particuarly Paolo S, for bolstering my resolve on the Tec vs Plegridy issue.

You are more than bloody welcome!

Good luck! I bet the only ill-feeling you suffer will be from nervousness. but should anything else crop up… you know where to find us!

3

Thanks Paulo, it really does seem to suit you!

I think my nurse was looking at the very skinny woman in front of her who is always nauseous and has complained of total lack of appetite since April last year and she, quite rightly, assumed that I don’t eat big meals, so I think she was suggesting food that would help prevent side effects without me having to eat a lot of it.

However, from what you say, I get the impression that it is the amount that matters. I’ll have to work on that.

4

I am convinced that is the most important factor.

But then maybe because i am such a gluttonous bloater, i eat so much of anything, it never matters what it actually is?

I guess what i am trying to say (in too many words) is that Tecfidera is a nice choice, because it really doesn’t require you to do anything different to normal.

And that is what this fight against MS is all about… keeping things nice and ‘normal’.

All the best.