My partner got dx Nov15 with RRMS apparently he’s had it 15 years without even knowing! Anyway he’s had very little symptoms since dx just a little balance issues now and again and a couple fatigue days but all in all not terrible. He started tecfidera last week and even on the half does it’s like he’s been hit by a bus. He’s shattered all the time, he has this irritable little cough, his head is constantly thumping and he says his legs ache. I know the side effects say flu like symptoms and headaches along with some others which have luckily not arrived but he’s too much of a stubborn man to ask the dr/nurse or me for any help never mind even a paracetamol for his head. I just want to know is this normal? It’s his first DMD and he only started the full dose yesterday and he’s completely done in but his response is “I’ll just need to get on with” and off to work he goes! I’m just looking for some guidance as he would never come here himself and ask for help.
Hi, I do sympathise. I too am on Tec but unlike yor husband I have just had hot flushes and the odd itching. They do say that side effects can diminish after 3 months so if he is able to bear with Tec for this long things may improve. Just keep an eye on him once he goes onto full dose. Any concerns just speak to his MS nurse. You will also find very good and sensitive advice on this forum as did I.
just remember you are both not alone.
Trev
hi
i switched from copaxone to tecfidera.
the gastro issues were bad but settled after a month or two.
however reading your post made me remember something my husband said.
he said you always look knackered and washed out, you weren’t like this when you started copaxone.
i’m still taking tec and i’m surviving in a knackered, washed out way!
carole x
thanks for your replies. I hope this will settle down after he adjust to the medication he’s taking it hard feeling unwell. This is a man who never had a sick day until his dx in November!
Carole, does the surviving knackered and washed out get easier? It’s like he’s on autopilot and I’m doing my best to make it easier.
He’s emailed his nurse and tried calling her today. I understand she’s extremely busy but hopefully she gets back to him soon. I can’t imagine waiting weeks for his next appointment.
Steph x
Do keep pestering the MS nurse as this is important. Just re send the email a few times and call too. Hope it all settles down soon for him.
Trev
His nurse got back to him today saying that it should settle and just to stick with it. From everything we’ve read these symptoms will settle. It’s just not great for him to feel like he’s taking something that should prevent him feeling like this resulting in him feeling like this… If that makes sense!
Steph x
Being recently diagnosed and starting his first DMD is a big shock and it will take time to get used to a new life with MS. For fatigue he should try and take things easier, take regular breaks at work and avoid stress.
Can anybody help me? I am at my wits end.
I have been on tecfidera now for 15 months but am still suffering intense flushing. The whole top half of my body and my thighs gets red hot and blotchy, I feel like I am on fire and it is really uncomfortable. I’ve read online that it is important what you eat with the tablet and my neurologist confirmed that it seems to be fatty foods that are best. I was having some success by ensuring I ate a meal with carbs, fat and protein in it but I just can’t sustain that level of food for breakfast, I’ve put on so much weight. I find it impossible to eat nothing at lunchtime after a sizeable meal like that to start the day, especially when the smell of all my colleagues cooking their lunches starts to float around the office.
Recently I’ve been trying a bit of cheese or cured sausage as a fatty addition to my muesli with yoghurt and fruit but both of these experiments have failed miserably and left me sitting in work two hours after the tablet miserable and scarlet.
Aspirin 30 minutes before taking the table is the other suggestion but I thought that aspirin on an empty stomach was really bad for you. Is it really a toss-up between flushing or stomach ulcers? 15 months in, it looks like this flushing isn’t going to subside in a few weeks like every single online article claims it will. Other people claim to be able to deal with a “little bit of flushing” but I find it really painful and extremely distracting at work. I only ever seem to get it 2 hours after the morning tablet.
Linda, totally miserable.
Why don’t youv take your first tablet at lunch time? It doesn’t have to be at breakfast. So long as you leave the time gap, then have your second one with evening meal or a snack before bedtime. I take mine this way without problems.
I thought I had to take my tablets as close to 12 hours apart as possible so take first one at first tea break and then try to put off having dinner until a late as possible. I should try taking the second just before bed. May not notice any flushing then, if it happens.
Hey Steph,
I completely empaphise with what your husband is going through. I felt absolutely awful on it. I had to stop after the third day. I had all the physical symptoms and I felt completely disconnected too, just couldn’t think straight. I have been talking to someone who was in a similar situation, they have persevered and is now feeling better. Maybe he should try for a couple of months and see how he goes? I’m pretty good, so I am not going back on it. I hope your husband feels better soon.
Adrian
Thank you 
Took tablet 1 at lunch today. I really enjoyed being able to take my break with other people again and eating after the hunger enducing smells had been wafting round. I’d been munching on some fruit in the morning so chanced a lunch of muesli and yogurt without eating the cheese and bread I had brought with me and successfully passed the test of the day without any flushing, hooray I’ll try tablet 2 just before bed without snack to see if I can just sleep through any side effect, if any even happens. Thanks so much for your simple piece of advice that somehow I was unable to see for myself. Feel quite foolish but happy so don’t care about the foolishness. I think it also helped just to have a place to let off yesterday’s rant. A toddler-like screaming fit in the middle of the office probably wouldn’t go down well but was what I was increasingly feeling like doing every time flushing started yet again.
All good then Linda. I can’t take the credit for the advice though. Our friendly regular, Paolo, on here has shared this many times and is the guy who convinced me that Tec was the way to go. Any side effects can usually be sorted fairly easily.
My partner read Paolo’s thread and it was extremely helpful in explaining what you could eat to reduce side effects x
Dear Stefalop.
Your significant other sounds quite similar to myself; proud of the very few days taken off work as ‘sick leave’, disinclined to seek advice, or even take a pill for an ache or pain.
Sadly with an MS diagnosis, the rules for the game of life change. Pills will help; they are tools which will make a meaningful difference. and the exact same thing can be said, for taking a day off work.
A stress free life is (for me at least) apparently vital when attempting to live well with MS. The mental inclination to attend work, must be balanced against the simple unavoidable fact that adequate rest and relaxation are necessary.
There is a tremendous value to having the pig headed determination to carry on regardless. Future relapses are likely. Hopefully they will only require a sense of adaptation in order for life to continue as ‘per usual’. Try not to be too dismayed by their efforts to remain relentless in life.
MS is a perfect excuse to accept only the very best in life; the best foods, the best wines and beers, the best drugs, the best days of relaxation under the sun, and all the vitamin B12s and D3s one can get their hands on!
The side effect of being fatigued and run down, is not one i was aware of. Flu like symptoms i had thought, were not caused by Tecfidera either. For both of these complications, perhaps a week off work, at a spa would be a good ‘coping strategy’?
Having MS does not oblige us to become martyrs to an incurable disease; it should inspire us to treat ourselves, and those around us like royalty!
Good luck to you both!
Paolo I let my partner read this thread and it made him laugh. Thanks for the support.
Hopefully he laughed ‘with me’ and not ‘at me’…