MS Society UK | Forum

Tecfidera - skipping a pill

Hi guys,

I’m on week 2 of Tecfidera, day 6 of 240mg twice a day (week 1 was 120mg twice a day with very few side effects).

On day 4 of 240mg, I started to get HORRIBLE stomach pains, basically all day and all night. Constantly clutching my stomach.

My question is have any of you ever skipped a pill? I don’t think I can handle taking one tonight.

I’m going to book an appointment with my neuro this week to see if I can reduce the dose.

Sunflower

This is a problem that lots of people have faced. It’s the reason for starting slower than the drug company want you to.

(Nb, I took it quite a few years ago so it’s not like I’ve exactly got recent relevant experience!)

Why not phone your MS nurse on Monday and see what h/she says? Meanwhile, personally I’d not take something that made me feel that bad. This is just an opinion - not from experience.

Hope you get it sorted.

Sue

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Personally, i’m not a great believer in missing doses of any prescribed medicine, it’s designed to be delivered in a certain fashion for a reason.
That said, you can’t go on feeling so bad on it. In my 3 years on Tecfidera, I did once manage to take an extra dose, so x3 240mg pills in one day…long story…lol. I called the MS nurse who told me not to worry and fortunately I had no issues. I think on the face of it missing one dose probably wouldn’t cause any issues but may only succeed in kicking it into the long grass for now.
You really need professional advice imo.
Good luck.
Retro.

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I’m not a believer in missing doses either per se. But it’s Saturday. No contacting anyone till Monday earliest.

Feeling that crappy shouldn’t be a sensible option. But I don’t think missing a dose of ‘Tec means it’s curtains for the drug. This is the reason people have successfully argued for a slow start.

Cutting the dose in half for a few days (ie just one dose in the am) then maybe getting a half dose to take in the evening for a week or two shouldn’t be a problem. That’s how I’d propose it to the nurse/doctor.

Sue

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Not really possible to split a Tecfidera capsule. You could attempt to split apart remove some (not sure how you would safely dispose of the tiny balls). The capsule casing presumably ensures the medication gets to the right place to be absorbed. On a few occasions the casing was damaged and on a few occasions forgot when away from home.
I was lucky and never had any digestive problems. However, had to stop because of low lymphocytes that didn’t bounce back. There is a Facebook site for those on Tecfidera.

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Ooh, I didn’t mean split a capsule - just badly worded!

I meant split the quantity of the drug you take in one day - so just take the morning dose for 2 or 3 days till properly advised by a professional.

Don’t, please try and split a capsule :pill:!!

Sorry.

Sue

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I realised half way through that I had probably misread your intent. I think missing a capsule occasionally is not ideal but people do not need to get too het up about it. Ideally to keep the medicine at the intended level the capsules should be taken 12 hours apart, but because they are better taken with food and they are less likely to be forgotten most people take them with their meals. I sometimes forgot when out but had it with cheese and biscuits when I remembered. Only took without food once with only minor consequences.

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@Ssssue @RetrovirusUK @crd

Hi guys, thanks so much for your replies, I started to recover from the severe stomach pain only around 4 days ago. It was really bad (I was basically in bed clutching my stomach all day everyday/night).

After talking to my doctor, I ended up stopping the Tecfidera altogether for 4 days and took pantoprazole and mebeverine to help my stomach/colon.

He said I need to go back on the 120mg for a while now and then try 240mg again at a later point. I really want to be able to tolerate this medicine because I’ve heard a lot of good things about it plus I’m scared of the side effects of the other treatments.

Fingers crossed!

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Hello Sunflower,

I have found your story so so useful!
I took 120mg and now on the 240mg and I know exactly what you are talking about HORRIBLE stomach cramps and pains last around 1 hour and then they disappear but it’s so hard to explain to people when you have a disability and you look normal that you are in pain! I have wanted to stop but I just keep saying to my self I’m glad it goes heard brilliant reviews about the 240mg and it will eventually go away once the pills are used to your system. I’m just greatful it’s just the cramps and no dorihea or vomiting as that will be a nightmare! I wanted to skip 2 tomorrow so I can have some alcohol but I don’t think it’s worth it as this is a desease not some headache which goes and comes back the course of there for a reason and your have to be thick skinned against people! You got this and your a warrior mate you have done well but yeah side effects are nothing compared to some people out there!

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Hi everyone recently diagonised and started Tecfidera Treatment. Wondered if you could help or advice whats best. I started of taking 120mg for a week was absolutely fine. Then when I had to change to 240mg I have been awful on it. I have bad tummy pains, im in bed cause of the pain, crunching my stomach, sickness and diarrhoea. I have just had a call back from 111 as its unbearable I called them for advice but she doesnt really know what to suggest. She said there isnt a neurology team member on, so she spok to the on call doctor and he advised to stop treatment then call my consulant Wednesday (Due to the bank holidays?). Do u think this is wise? As its the Christmas break no one is back for 4 days. Seems along time without treatment. Can you give any advice as it sounds like im not the only one experiencing it.

Anything I can take or do to help nove forward as I want to carry on this treatment of I can.

HI, might be wise to drop back to 120mg till you can speak to your MS team. Least that way you still have some in your system. Maybe Omeprazole would help too. I’ve been on Tec 3yrs with no side effects at all aside from some flushing way back when I just started. Maybe some solid heavy carbs when you take the meds might help. Best of luck, it is such a good medication, worth sticking with if you can.

And if you don’t have any 120 mg capsules, try just one 240 cap for a few days, maybe at night rather than in the morning. If you have anything like Omeprazole, take one of those to cushion your stomach. Otherwise, Gaviscon (other indigestion type remedies are available - I don’t want to get in trouble for advertising!)

Sue

Hi thanks for your reply. I can’t drop down to 120mg as I don’t have any unfortunately. So thinking of taking one tablet (240mg) a day rather than 2 until I can Speak to someone. Hoping this will help. Think its to strong for me. Im hoping I can stay on this tablet as heard good things.

HI sue thanks for your reply. I tried having one with my dinner last night and at 1am I was up it was all out my system. I am going to get hold of my nurse who is in tomorrow apparently but just working from home. I have had 5 days of sickness and diarrhoea :frowning: its not good. Cant even keep water down. I have taken no tablets today and feel better already just got stomach pains. Thanks for your advise.

How are you taking them? Sandwiching between stodgy food (eg bowl of porridge, ‘Tec, toast with peanut butter)?

If you’ve not tried the stodgy food sandwich, then take a few days off and try again.

Or if you’ve tried it and have a stomach that’s as bad as this or just can’t stomach the stodgy stuff, then just stop.There are other drugs that won’t do this.

Just my opinion.

Sue

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I haven’t tried that. I normally have porridge then take my tablet.

I haven’t taken todays and this is the first day in 5 days I have been able to keep food down…

I may skip tomorrow as still have bad tummy pains then try your idea.

I appreciate your help this is all new to me.

It’s very annoying that many people do have similar trouble getting used to Tecfidera. Why the doctors don’t start people off much slower I don’t know!!

The other thing is that initially, you probably should have been told to sandwich the drug between two stodgy foodstuffs. Even if you have two smaller bowls of porridge. But definitely try to take the pill in between two things. The idea is that your stomach needs protecting from the drug.

It’s probably better to give your tummy a couple of days at least time to recover from the trauma it’s had. Better than just giving up on the drug altogether. If you can get hold of your MS nurse on Wednesday, do.

Otherwise, were you given a number for the delivery company? If so, try them for advice. It’s possible that between the two you could arrange for another supply of the 120mg capsules. Then start again, much slower, and protect your stomach better.

It’s so hard to be wrapping your head around the diagnosis, let alone having a severe upset stomach from the drug. Sometimes all you want is for someone to say ‘there, there’, give you a big cuddle and say ‘don’t worry’!

Sue

Sue

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Sue I cant thank you enough for your help, support and advice. When ive been feeling so low all your helpnand suggestions have been great. I am going to take a break like you say, give my body time to heal and then try again. Why they dont start you on 120 for longer than a week I will never know… I was also not told about the sandwich idea. Unfortunately with covid all my correspondence have been thro letter or telephone calls.

I will let you know how I get on.

@Mama_to_Freddie how are you feeling now?

@Mswarrior I should be completing 1 month on the 120mg in a few days and will attempt the 240mg again (once a day at first, for 2 weeks).

I’m worried/scared that I will get that horrendous pain I got when I tried the first time but I’m praying that it will be better this time since I am better prepared this time with the pantoprazole/mebeverine and porridge/peanut butter advice from Sue