Last reply 3 months ago
Help disguising Tecfidera side effects

First time posting on here, so here goes…….

Hi all,

I got diagnosed last May and I literally just started taking tecfidera yesterday and it’s all going a ok so far…….

I just wondered if anyone had any advice (particularly men) from explaining to work colleagues (who don’t know about my diagnosis,) why my face is red?

It happened once yesterday (when I went from a cold room to a slightly warmer room,) so avoiding doing that as much as I can should help, it lasted for about half an hour yesterday and if it does happen today, what can I say to avoid raising suspicions?!!

(I’d just choked on a cashew nut yesterday is what I said 😂 but don’t think I can use that excuse every day!)

Also, anyone got any good lies they can share with me with for explaining why I’m taking a massive pill every morning with a huge pile of peanut butter toast? (Obviously I’m trying to be as discrete as possible, but it might get spotted.) The toast I can blag, but explaining why I’m taking daily medication; does anyone have any good excuses?

Sounds like I’m being very paranoid and sorry for the long post.

Thanks

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


grandma
3 months ago

Hi @ dougall17 If you don’t taking advice from a female on this I started Tec a year ago and the first few weeks were fun! Being a 62 year old female I couldn’t even get away with a lady of a certain age scenario but how about telling work colleagues that it’s a big vitamin pill, prescribed by your doc as short in something exotic, that’s why Its so big and has to be taken with food?😜🥊 don’t apologise for the long post or being paranoid, I had taken medication(Avonex) for 23 years and I must admit that taking a tablet twice a day was brilliant compared to sticking a big needle in myself once a week was great do the side effects didn’t seem so bad, and all my friends knew about it and watched with great interest as I turned bright red and started to itch👹But I didn’t have to deal with the not telling anyone scenario do I can imagine how difficult that is. If it helps, the side effects usually wear of in about 8 weeks, but you may have a couple of bad days tummy wise in week 3 but forewarned is forearmed🤞


dougall17
3 months ago

That’s really helpful @grandma thank you very much.
I can’t wait for week 3 now!!
😏


stumbler
3 months ago

Hi @dougall17 and welcome.

It seems @grandma beat me to it, but I was going to suggest blaming the flushing on the menopause. You’ll get some strange looks, but it should stop people asking!

You might want to have a look at some previous posts and see how others have dealt with the situation. A “Tecfidera” tag has been added to the foot of your post above. Selecting this tag will locate other mentions of Tecfidera.


dominics
3 months ago

Hello @dougall17 . I took Tecfidera for quite some time as I was on a trial.

Over time I discovered that the flushing – for me, this is no guarantee it will be the same for you – seemed to come for several days and then a few days off it. No explanation. The one thing that was predictable was the length of time. From the first tingkling – you know when it is coming – it would take 45 min until it was all gone. I would go beet red, as if I were very sunburnt. It felt just like that too, but you learn to ignore the weirdness.

Regarding others: I tried to get in front of it when I felt it coming on and just tell people I would go beet red. Worse looking when wearing a crisp white shirt! I used to joke that I must be having a menopausal flush. Nonetheless, if you are trying to conceal the fact that you take a regular medication then it may be harder as time goes on.

Is your concern that people at work discover you have MS?

Best,

Dominic

PS: As @grandma says, it can upset your tummy. Faecal urgency is the delightful term used by the medics. My advice: don’t ignore it if you think that may be what is happening. Sorry to be a bore but better to be open and honest!


grandma
3 months ago

Just had a thought, you could try booking a couple of days off work for wk 3, you could use half term or family commitments as an excuse if you need one🤞😜


bernadette
3 months ago

mostly people are too self-obsessed to notice what others are doing so no need to disclose or explain anything to anybody. I write this
generally and also as an ex-techfidera user
best wishes


grandma
3 months ago

Hi @bernadette I’m one of the old codgers, beat you by 3 years, and have been on Tec for a year but had 23 years of Avonex before. Was dxd 26 years ago before things started to get interesting. Still here, still fighting, the longer we keep going and keep enjoying ourselves doing whatever we can the better😜👏😍


dougall17
3 months ago

Cheers @dominics that all sounds like very useful info
Thank you
Just had my 2nd flush on day 2 & whilst no one said anything I did get a few odd looks (maybe paranoia)
Think I may book some time off work week 3
I work in quite a high pressured industry where ‘banter’ is at the max & if I’m turning tomato red every day for 45 mins (which seems like it’s going to be the case,) I’d better have some banter to throw back at them……

Yes, correct, I don’t want Work to know that I have MS……..(yet) as I will for sure be looked over for promotions etc…..

I want to control when I tell them

Thank you again all, that is all useful information and has given me some ideas

I may update this thread with how I’m getting on if anyone cares……

Thanks


ash33
3 months ago

OMG is techfederia a huge pill? I’m starting it soon. I’ve been open with my coworkers about what’s going on… It’s hard not to be when you come in screaming hysterically about ms. But I’m a very open person. I can totally understand someone not wanting people to know. Really you shouldn’t have to explain yourself to others. But I’d probably go with the vitamin idea.


mtvesuvio
3 months ago

I was considering Tec too – how big is this pill??


potter
3 months ago

Do you take a aspirin or antihistamine right before you take your Tec? That is suppose to help with flushing. I have been on Tec for 6 years, I didn’t have much flushing. I had the stomach cramps and diarrhea for the first month. I had Rebif shots for 5 years previously that made me feel like I was getting the flu, so it wasn’t a big change for me. After I got through my first month I felt like I had been set free. I had been dealing with side effects for 5 years and now I had a treatment that didn’t make me sick. Potter


mamawals
3 months ago

This isn’t Tecfidera specific but when I’m having issues with MS I generally tell people that I have an autoimmune disease. You could tell them you’re on medication for it and sometimes the medication makes your face red but it’s no big deal.


arbee
3 months ago

I told my work as soon as I was diagnosed (it was hard to avoid as I could barely walk during the last relapse) so I never had this issue but I totally understand why you would not want to mention it.

The good news is that this shouldn’t last for too long, I only ever had a couple of flushes but I was feeling pretty rough and had really bad guts for about 8 weeks after starting tec so you should be able to pass it off as some sort of temporary bug but I’m not sure what exactly. Things should get much easier after that though, I think I’ve only had one flush in the last year so get through these first couple of months and it should be much easier to hide.

Regarding taking the pills, can you not do this before going to work? I have one in the morning before I leave the house and another when I get home in the evening but I do a standard Mon-Fri, 9-5.30 job, I imagine this would be more difficult if you are working shifts or random hours.

Good luck with it though mate, get through these first couple of months and things should get much better. I’ve been on it for nearly 18 months now and so far have remained relapse free and apart from the odd tummy grumble, I don’t notice any side effects.


dougall17
3 months ago

Thanks everybody really appreciate that this community is here and you have all already really helped me a lot……

Sorry I was slightly exaggerating @ash33 when I said it was a massive pill it’s really not that big……bigger than an aspirin, about an inch long (maybe smaller) but comes in a nice pack with the days of the week on it…..

I do fairly long hours, have breakfast at work (because I get up & get ready & leave with zero minutes to spare…..) yes I know I could get up earlier & have breakfast at home……

Like the sound about taking aspirin or antihistamine before I take the tec, I’ll give that a go tomorrow


vivien
3 months ago

@dougall17 I will have been on tecfidera for a year on Saturday and my latest mri showed no disease activity in my brain – woohoo!

I take an antihistamine at night as I’m allergic to aspirin. 1st 8 weeks are when you get the majority of the side effects. I still get burning flushes 2 or 3 times a week, usually 4 to 5 hours after my morning dose, not usually at night.

I take the antihistamine at night as they make me too drowsy to drive, maybe you could take them before your early dose if they don’t make you sleepy? The more protein and fat you have before taking the tecfidera, the less side effects you will get.

Good luck and keep us posted!

Vivien xxxx 🤗


doubleo7hud
3 months ago

Tell em a fart slipped aht as you bent over comes with age 😂


lynnew
3 months ago

I found the flushing eased off after a while but I would still get random attack’s across my upper chest that would itch like hell and last around 15 minutes…
I’ve come off it now though as I had a relapse and two new areas in mri after 18 months treatment … good luck with it… the side effects do settle but I would consider saying you take medication for an autoimmune disease… my last relapse happened out of the blue at work when I stood up to wash up my lunch things before going back on duty… I couldn’t get back to the sink ! Luckily my colleagues were aware of my diagnosis so it didn’t take much explaining other than confirming yes I think it’s back 😢


Anonymous
3 months ago

Hey @dougall17 I know what it’s like being a young dude and dealing with flushes from Tec, I’ve been taking it for 2 years and have no side effects at all now. In the beginning though, first 3 months or so like clock work my face would go red, at work serving customers, dealing with colleagues… I would sometimes excuse myself and go to the bathroom and splash some cold water on my face, I tried aspirin too and it seemed to work alright… Luckily it was during the summer I just told people I had sun burn 😆 but in general, no one really cared, I was just really paranoid haha! All the best 💪

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.