Tecfidera making me feel so ill...

Everyday living
1

Hi,

I am on week 2 of Tecfidera and so on day 6 of the double dose.

The first week (lower dose) was fine. But by day 3 of the double dose I began to get severe stomach aches and feeling very sick, also overwhelming tiredness.

I phoned MS nurse and asked if it was OK to take buscopan as I have had IBS in the past and this worked for me. She said it was fine and they like you to take Tec for 6 weeks before definately deciding its not for you.

Day 4 and 5 has been unbearable, sick feeling, stomach ache, no appetite and tiredness. Last night I didn’t even take it because I just could not face it.

Took it this morning though and now feel so sick again, just did the school run and had to stop to reach in the hedge!! not very nice but not actually sick. I have a 15 month at home so its impossible to rest.

Does everyone get this and you just have to go through the pain barrier??

My MS is not that bad, i’m only 38 and wondering if all this is worth it. I was on rebif before and that was ok just unsightly red marks on injections site. Its always been the drugs that make me ill not the MS I havn’t had a relapse to two years.

Really fed up…

2

6 weeks is a long time to give it a go if it’s not agreeing with you. I lasted 10 days on Tecfidera, I got really poorly and I ended up being off work due it. You do need to eat well but I had one morning where I couldn’t face food so I didn’t take the tablet, that’s roughly when I came off the drug. It’s up to you if you want to keep going but I know I was ready to come off it. You should still be able to live your life relatively normal. There’s a good facebook page & they give some good advice, sadly didn’t work for me. So many people are saying that Tecfidera is working really well for them & they haven’t had unwell side effects.

3

hi vicky

have you actually vomited?

i did for the first 3 days on the higher dose.

by trial and error i found that if i eat something substantial before taking it followed immediately afterwards by eating something else, it stays down. kind of trapping it between 2 courses. so morning dose is taken after porridge and before toast.

a happy outcome is that i need a pudding after dinner!

now i’ve done 5 weeks and the nausea has died down.

i only had the flushing twice and it was just a hot face and bright red skin.

it is a powerful drug so that’s why it takes some getting used to.

but ms watch out, my tec is coming to get you!

carole x

4

Dear Vicky. I would recommend the following tips for a happy tecfidera co-existence:

  • Take only on a full stomach.
    • If this means dose one comes with lunch instead of breakfast, then fine.
    • If possible, take it mid-meal, eg. between main course and dessert.
  • Take an aspirin half an hour before dose one.
  • Take a paracetamol if a stomach cramp begins.
  • Reduce the increase of tecfidera you take; for example:
    • week one - 1 x 120mg capsule once a day
    • week two - 1 x 120mg capsule twice a day
    • week three - 2 x120mg capsules for dose one, 1 x 120mg capsule for dose two
    • week four - full dosage.

Basically, you are introducing a strange chemical into your stomach and your guts wonders what the flock is going on!? You cramp up and it tries to use the emergency eject button (hence your getting friendly with a hedge during the school run!)

Dilute this strange chemical within the familiar confines of something your stomach knows and loves. Using ‘a spoon full of sugar to help the medicine go down’ is not a new concept :slight_smile:

There are two rules underwriting the success of effective DMD use:

  1. Find one asap
  2. Do not stop taking it

If a pill makes you feel so bad that you cannot bring yourself to take it, you need to find something else and quickly. there is a period of time required to let your body get used to something like Tecfidera, but i personally do not think that period of time is as excessive as six weeks of puking!

Good luck!

5

Great, thanks so much for your replies.

I feel a bit more positive about it all this evening. I spoke to my MS nurse who said she will try and get me a lower dose. I only have 240mg tablets, so I can’t do the regime Paolo describes at the moment, but I do think this would have been a far better way to do it and wish they’d have introduced it like this. I will try the aspirin and paracetamol thing!. The MS nurse’s answer was to just take one at tea time for now and hopefully sleep through the worst of the sickness, cramps, she’s arrangeing for me to get the lower dose.

It’s the tiredness this week I have found so hard, I am lucky not to work but have young children which don’t give you a break. Lovely husband but he works hard too. Had to cook his own tea and put kids to bed all this week and house is a total tip but were trying not to care!

I really want Tecfidera to work for me and don’t want to give up yet. Hopefully this is just something some people have to ride out.

Anyone else get the tiredness?, i am hoping it’s not proper fatigue and just the tec?

Will keep you posted.

6

My neuro (Royal Hosp in Belfast) has recommended the 120mg for the first 28 days before moving up to the 240mg but it hasn’t been too bad until today when I turned bright red and have an upset stomach, think I need to take it at lunch rather than after a bowl of rice crispies in the morning, but i will persevere and see, as jabbing everyday with copaxone was getting to me…

7

I’m also on first week of double dose and I’ve been so I’ll. I was taking with a good breakfast, followed with a good lunch and heathy dinner but day 2 of taking double dose in the morning by lunch time I wasn’t sure if my stomach was going to be sick or no 2 with bad stomach bloating and pains. I am violently sick, I can’t even keep water down. M.s nurse has asked me to persevere but at the minute I can’t eat or drink. :frowning: Im also getting motion sickness so I can’t go out. I can cope with the burning rash but for 3 days I feel worse than ever. My partner wants me to come off it if its making me this ill. We have 3 kids. There has to be more to life than this. I’ve been unwell with m.s since Nov and last week I had one day where I felt the best for a long time, me again but it was short lived. I don’t want injections, is this going to get easier? I can’t take the pm dose as nothing is staying down long enough but I am still taking am dose. Ms nurse advised no point going to 120mg as they are not effective enough but surely some medicine is better than none? Any help would be appreciated…not sure I can take this any more.

8

hi arti

your ms nurse says that the 120mg are no good because they aren’t effective enough?

seems she is missing the point. you want to take the drug but the side effects are making you miserable.

look at what paulo writes.

seems that in canada they are TOLD to increase the dose very gradually.

if you could just have more of the lower dose you could sort your problems out.

try talking to her again.

good luck

carole x

9

Hi Paolo, I was taking mine half way through my meal but since they’ve doubled my dose I have been violently sick but i will try your suggestion. Will taking aspirin before I eat to take tec reduce me being sick? At moment I can take am tec but by lunch time the sickness starts…Please see my previous thread. X

10

I just think that there’s some people that can’t tolerate Tecfidera. I was only on it for just over 3 weeks but started to get ill shortly after taking the higher dose. Started with stomach cramps and feeling nauseous, then day 3 into the higher dose I started being violently sick and also had diarrhea. I did everything you’re supposed to do but I just got worse.

I was tending to be sick about 3 - 4 hours after I’d taken the tablet. I coped for four days until (this isn’t nice so I apologise in advance), I couldn’t keep even water down and my diarrhea has turned into black water. I ended up ringing 111 as I just couldn’t cope anymore, They sent the paramedics who took me straight to Adult Emergency where I was told I was severely dehyrated, tachy cardic and my wcc was really high.

Maybe I should have persevered with the medication but I really couldn’t cope going through that again. I’m still feeling nauseous nearly all the time ( it was easter Sunday that I was taken to hospital and I haven’t taken a tablet since - back on copaxone). I was wondering if anybody knows how long Tec stays in your system as I just want to fell normal(ish!) again?

11

I have every confidence that MS nurses are generous and caring individuals. But sometimes, some of them make me want to give them a slap.

DMDs are incredible. All of them. Even the ones administered via a needle. My mum had MS diagnosed in the late 1970s and had nothing. Just a cocktail of drugs to manage the symptoms. Her’s was a hopeless and tragic descent.

We live in an enlightened age and although no cure is here, we are offered DMDs to buy us sometime, in the hope of a cure being found before we are ‘too far gone’.

But what the hell is the point of a DMD if it provokes dehydration, nausea, or a life bereft of joy and good humour?

MS nurses know the monster they are supposedly ‘specialist’ in helping people to contend with. They know the onset, severity, prognosis and symptoms are as diverse as those enduring it. And yet when a DMD or some other form of therapy is met with some misfortune, the blanket statements of flaccid reassurance rise up.

Dear arti73, i would suggest to your MS nurse that despite their ‘wisdom’ that dictates that Tec 120mg is too weak to be worth it, i would go to great pains to illustrate how the current regime of 240mg is too *****ing powerful to be worth it!!!

Clearly you are having a tough time dealing with something that should be seen to be a blessing, a privilege. And yet you are being fobbed off.

There are two things i know…

  1. the method of taking up the tecfidera habit, as described in my post above on March 5th worked and i think it worked well.

  2. methods being employed by others are seemingly not so plain sailing.

I have nothing but the utmost sympathy for you and i genuinely share your disappointment. We have been handed a burden already heavy enough in the form of MS. We have been given a helping hand in the form of MS nurses, but when they fail to step up meaningfully, i fear that simply compounds the anxiety of the situation.

Sorry… i am starting to rant a little… i stop now :slight_smile:

12

i understand that tecfidera has a very brief residency time; a matter of hours, certainly not more than a day!

i’m sorry as i suspect this is not what you wanted to hear, seeing as you are still feeling crappy.

but the fact that you are able to resume a different DMD supports this; no one has ever tested the interactions of multiple DMDs as far as i know, and so as you are back on copaxone you must be free and clear of Tec by some significant and safe margin of time.

13

They seem to think that’s it’s still the after effects of the Tec, but it could be that my body was so battered by the experience it’s just taking time to recover, I mean we are also coping with the day to day symptoms of MS, never mind the effects of the medication so I guess it would make sense that it’s taking a bit of time to get over. I came off Tec and was allowed back on copaxone in less than a week after stopping Tec. But as for coming off copaxone and changing to Tecfidera originally, I injection my last needle on the Monday morning and took my first tablet on the Tuesday morning but I was told that copaxone stays active in your system for quite some time (months) so maybe I shouldn’t have been switched so quickly without taking a bit of a break?

14

as mentioned in my other post I am just starting week 3 and feeling really rough and bad… my stomach just feels awful all day, feeling sickly and I feel no energy… (first 10 days were not bad occasional flushing!)

My MS nurse is going to order me the 120mg for 1month (I asked for this originally but she didn’t agree)

I wanna keep on with this and even after a really bad night I swallowed another tablet today (suffering!)

If someone said you gotta put up with this for x days and everything will be fine I would feel happier - I know i cant go on for this for a while - its so tough…

15

Theory (as i understand it) is that the aspirin doesn’t really affect the nausea, but the flushing / blushing / itching aspect of the side effects.

For me, the nausea was mitigated by having a full stomach. I would typically neck the pill when 80-90% done with my plate of grub. I don’t over eat, but i ensure i feel full up. You want more than a snack.

It might be (and given your current sensation of pukiness this might not be palatable but,) you just need to eat more?

Your body perceives the Tec as poison and wants it gone. Your body essentially forces the chemical to the nearest exit. If you introduce this new dietary supplement to your system on a bed of something tasty that your belly knows and loves however, your guts might just forgive you for long enough, that it forgets it ever hated you for swallowing it :slight_smile:

Interestingly and as mentioned by others, although i have been on Tec for many months now, i do occasionally get a sense of a side effect. It is very mild and short-lived (i take nothing to remedy or manage it) but it will consistently occur 3 hours after my morning dose. I estimate that with 100% consistency, it comes due to an inadequate amount of grub in my belly. It also illustrates how Tec is a ‘delay release drug’ into your system. The thing to perhaps take away from this is, if you get to the fourth hour following a dose, side effect free, you are in the clear :slight_smile: If things start to come on… a bit of cake perhaps?

The absolute very best of luck!

16

Dear spluff… you started Tec and it all started well? But then you upped the dose and things went pear shaped?

This is a ‘success’ in that you have identified your tolerance level.

I would get the lower dose 120mg caps and start taking them up to the point of this tolerance threshold. Give it a week or so, and then take a step up. Continue until full dose has been reached and then lead a long and happy life!

And try to forgive the MS nurse who initially resisted your request for the 120mg capsules… they are burdened by a sense of insight and no doubt, too many patients on their books.

It is just another one of life’s little challenges that before taking even the 120mg caps, you will probably suffer a sense of nervous anxiety… it will be okay though. It was before and it shall be again!

The best of luck!

17

Hi Paolo and other tecies.

Well, Paolo I just want to say a huge thank you for your advise. I am now back on Tec 240 mg 2 tablets and the porridge idea is the best. I trialed taking in the morning and at lunch…Thank you :slight_smile:

I did have some intervention by my GP but I wanted to put my experience for anyone who may find it helpful.

Definitely take tec on a full stomach, I found a bowl of porridge, take tablet then followed by a waffle, slice of toast etc to be easiest. Originally, I too would feel sick around 3\4 hours later so I started to eat crackers - I prefer water crackers on their own with a glass of lemonade or orangeade. As soon as I started to feel that heavy yuk feeling in my stomach or the cramping, I knew I had to eat…daft as it may sound. I then have a good lunch, light but filling as in pasta, more porridge, even McDonald chips, food that I liked. I then again would have a few more crackers through the afternoon until tea. I had a small healthy tea, took second tec followed by a nice treat. I did however, on my days where I didn’t think I could carry on and was sick even with water I did see my GP. She was brilliant, prescribed anti sick tablets and I only took these for 2 days but not all the time it was just when I had that sick feeling and to get me back up to 2 tec a day. I’m still not 100% side effect free as occasionally, if i haven’t eaten to my regime, I get stomach cramps and the sick feeling back but I’m more confident and I eat crackers which helps. I am still bloated and I do still get burning sensation and itching but its not as bad.

Sorry this is a bit long but I really want to help by passing on my personal experience.

My ms nurse said to me; to persevere when I was at my lowest and sickest, that the medication wouldn’t be worth taking the lower dose. Well my GP advised this is a trial drug, they don’t know much about it, the medication has to be taken within certain guidelines, hense I was advised the lower wouldnt be beneficial but as my GP pointed out it is a trial, if I can only manage to take 1 tablet as I didn’t have any lower dosed tablets, then so be it, and if you feel better then discuss it with your consultant and don’t feel a failure. I didnt want to not take the tec as i didnt want injections. This is my GP’s option to my circumstances and of how I was feeling. I had every intention of only managing 1 tec but I did take the anti sick tablets which gave my stomach that bit of a boost and now I take 2 tabs of the stronger dose and have done so for 2 days without support from my anti sick pills. This time last week I was in a real mess. Today, I actually feel good, my partner has even said I am starting to look and be back to my normal self.

So, in a nutshell, with a bit of help from anti sick pills, support and perseverance I am hoping I have reached a turning point so I can start to see and feel the benefits of this drug - which is a positive.

I really hope any of this helps xx

18

Hi Paolo and other tecies.

Well, Paolo I just want to say a huge thank you for your advise. I am now back on Tec 240 mg 2 tablets and the porridge idea is the best. I trialed taking in the morning and at lunch…Thank you :slight_smile:

I did have some intervention by my GP but I wanted to put my experience for anyone who may find it helpful.

Definitely take tec on a full stomach, I found a bowl of porridge, take tablet then followed by a waffle, slice of toast etc to be easiest. Originally, I too would feel sick around 3\4 hours later so I started to eat crackers - I prefer water crackers on their own with a glass of lemonade or orangeade. As soon as I started to feel that heavy yuk feeling in my stomach or the cramping, I knew I had to eat…daft as it may sound. I then have a good lunch, light but filling as in pasta, more porridge, even McDonald chips, food that I liked. I then again would have a few more crackers through the afternoon until tea. I had a small healthy tea, took second tec followed by a nice treat. I did however, on my days where I didn’t think I could carry on and was sick even with water I did see my GP. She was brilliant, prescribed anti sick tablets and I only took these for 2 days but not all the time it was just when I had that sick feeling and to get me back up to 2 tec a day. I’m still not 100% side effect free as occasionally, if i haven’t eaten to my regime, I get stomach cramps and the sick feeling back but I’m more confident and I eat crackers which helps. I am still bloated and I do still get burning sensation and itching but its not as bad.

Sorry this is a bit long but I really want to help by passing on my personal experience.

My ms nurse said to me; to persevere when I was at my lowest and sickest, that the medication wouldn’t be worth taking the lower dose. Well my GP advised this is a trial drug, they don’t know much about it, the medication has to be taken within certain guidelines, hense I was advised the lower wouldnt be beneficial but as my GP pointed out it is a trial, if I can only manage to take 1 tablet as I didn’t have any lower dosed tablets, then so be it, and if you feel better then discuss it with your consultant and don’t feel a failure. I didnt want to not take the tec as i didnt want injections. This is my GP’s option to my circumstances and of how I was feeling. I had every intention of only managing 1 tec but I did take the anti sick tablets which gave my stomach that bit of a boost and now I take 2 tabs of the stronger dose and have done so for 2 days without support from my anti sick pills. This time last week I was in a real mess. Today, I actually feel good, my partner has even said I am starting to look and be back to my normal self.

So, in a nutshell, with a bit of help from anti sick pills, support and perseverance I am hoping I have reached a turning point so I can start to see and feel the benefits of this drug - which is a positive.

I really hope any of this helps xx

19

I am surprised a switch from one DMD to another was allowed so quickly (but what do i know?)

i wonder if anyone else has enjoyed such a quick change?

20

Good news Arti73. I am glad to hear you found a winning formula for helping the medicine go (and stay) down. :slight_smile:

Hope everything continues on the up and up!

It just goes to illustrate that we are all different and need to exploit variations to a common theme to determine our best path; for example, you will NEVER find me consuming McDonalds chips / porridge / crackers with lemonade :stuck_out_tongue: