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Ongoing tecfidera gi issues

Hi, been on Tec since beginning of June 2015. Had bad gi problems during week two; chronic pain, nausea, diarreah and exhaustion that kept me stuck in bed for 5 days. On the 6th day all symptoms had gone! Delighted.

i had followed my neurologists advice re fatty foods, spacing the tablets apart and drinking plenty of water. All was going great, and felt a real improvement in mental and physical stamina and clarity.

towards the end of July I started to notice an increase in tiredness, but put this down to little one being home for school holidays, and few afternoon naps. Nothing Tec related.

In mid September, my gi problems started to return. Aching and bloating a few hours after tablets, waking once or twice a night needing the loo. Fast forward to today (19 weeks on Tec) and the gi issues have increased practically daily until I am at my wits end. I have no recollection of the last time I slept more than 3 hours straight, my appetite is non existent and I’m having to force myself to eat and drink so I can take my tablets. Through the night I am either pooping or heaving over the toilet bowl! The pain is so bad that pain relief and maximum dose buscopan are having no effect, neither are my trusty hot water bottle and heated pad. Last night I was shaking uncontrollably from the cramping.

So, my question is this: has anyone else experience of such extreme gi problems, and when did they go?

I have spoken to my nurse, who just says to persevere. Right now I cannot see a light at the end of the tunnel.

Thank you for reading.

Personally, I feel that if you have really severe side effects from a DMD, that’s a good reason to stop it and change to another. If the benefit you potentially gain does not outweigh the side effects, then it has a massive impact on daily life. We now have a wider choice of DMDs so you could swap to Tysabri, Gilenya, Plegridy or even one of the old ones, Copaxone, betaferon etc.

I’m on Tecfidera and for me the GI problems stopped within a few weeks, bizarrely I’ve had a bit of a resumption this week (diarrhoea etc) and I also am waiting on my blood test results to see if my lymphocytes have gone up from 0.5!

Sue

Hi Bitzymum

Sorry I have no experience with dmd’s but my advice would be to ask to change to a different one.

When sides effects are worse than the original problem, I don’t think it’s worth persevering with any medication.

It maybe worth asking to see your neuro again and explaining this to him.

Wishing you all the very best iin whatever you decide.

Pam x

Thank you Sue and Pam for your responses. I haven’t taken my tablet this morning, and though still a bit of cramping and exhaustion it is definitely better than the last few days.

I’ve left a message with my nurse and neuro, asking for a call tomorrow so hopefully they can offer up a workable solution.

Thanks again, bitzymum

Update:

spoke to my nurse, who has spoken to my neuro. Both agree that Tec not working for me and to stop immeadiately. Prob means going back on to Copaxone, which I was on for years, but infinately happier prospect than having to try and tough out any more GI probs.

Good luck to all on Tec, when it did work for me it was fabulous

i am going to be a pain in the arse right here but…

i think you should stick with tecfidera. you acquired a tolerance for it and it is much better than the drug you are reverting back to as an alternative. i would suggest you need to only change your behaviour.

Please do not get me wrong; i am not suggesting you are crap at taking drugs; i merely suspect you received poor / inadequate advice when starting tecfidera. For example, anyone who expressly specifies the need to eat fatty foods, has limited insight. It is not the type of food that you eat which is of importance, but the amount of any food.

clearly you have a sensitivity to the drug and for that reason, you should simply take less of it, but increase your dosing very gradually, up to the 100% daily amount.

I am willing to bet that the sickness seen in week 2 correlated with the start of taking 2 x 240mg capsules per day.

If you have already resolutely decided to forget the tecfidera option, than fine; 'tis understandable; good luck!

if not, then pester me and i can explain further if you’d like :slight_smile:

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I am having a dreadful time with this drug. My gp knows nothing about it, I have had horrendous GI problems and some days I look at it and have to make myself take it. I think it should come with a Govt Health Warning :). The nausea and indigestion is something i have never had in my life. I am popping antacids and anti sickness pills like sweeties, I have had all the listed side effects but by far the worst has been the indigestion and nausea. How can fatty foods be good to take it with when that can cause reflux? I am at a loss and I feel if i stop now why have I put myself through the last 4 weeks. I have had a few days where I have managed to not be ill after taking it and it does seem to like a lot of food which I can’t sustain. I have no support from the medial profession, all I know about it is from the Internet and forums such as this. It has been awful and I keep taking it in the hope that in the long term it will be beneficial. The discomfort has taken me into another world!! Whoa. I have tried to keep positive and I am wondering how much longer I can go on feeling like this. I have not had any other DM therapy I had MS for 7 years undiagnosed and after three years this is the only treatment I have been offered other than tegretol for the spasticity i was having. I see the consultant once a year and the drs dismiss anything I have that I think is related to my MS. It has been very lonely and then the Tec Drug!!! I am at a loss as to whether to stick with it I read that some people were ok after a week or up to 6 weeks. I am seeing the nurse on the 10th December, I will see if I can hold out until then. I know we are all different and that it will affect others differently but …

test

I reckon that if a drug impacts your life very negatively then it’s not worth taking. However, with Tecfidera many people had awful digestive and gastric problems for the first few weeks then it got better. I think continuing until the 10th is a good plan, but only if you can bear it. If it’s so awful that you simply can’t take another week, then phone your MS nurse / clinic nurse, explain the extreme problems that you’re having, and stop.

They’ll have to get you in to see the neurologist in order to discuss, but ultimately they’ll have to offer you a different DMD. I don’t understand why this is the only DMD you’ve been offered in 3 years. Even if the only alternative is one of the old injectables, many people have been happy with copaxone, Rebif, Avonex or betaferon.

And you might be offered Tysabri or Gilenya or even Lemtrada.

I hope you either get over the side effects, or get something else sorted soon.

Sue

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It is true that if a DMD is more trouble than it is worth, then put simply: it is not worth it.

But again, i would reiterate my irritation of those who cite the need for ‘fatty food’. that is just not precise and thus, not good advice.

You need to take the tecfidera on a stomach full of food (whatever that might mean to you personally).

Stomach cramps should be quickly resolved with a paracetamol or two.

Anything else, such as flushing and itching etc would need an anti-histamine. Again nothing hardcore; just off the supermarket shelf.

Ultimately, tecfidera is one of the best and most convenient therapies out there at the moment. It is worth sticking to. However, i do not agree with the ‘tough it out’ attitude, where doctors might reasonably ignore a patient’s concerns during the first 6 to 8 weeks.

It is a serious pharmaceutical and your body needs a period of time to adjust. for this reason, instead of rushing to full dose and thus bombard yourself with this new chemical (and its side effects) take a more gradual approach. At the very worst, request a 12 month supply of only the 120mg capsules and take as many as you can tolerate without side effects per day (to a maximum of four).

the take home message is that even if you can only stomach taking one or two tecfidera (120mg) daily for the first month or so, it is still better than taking nothing at all or one of the lesser alternatives. to me, this is just common sense and why medical professionals are disinclined to suggest such a strategy is beyond me!

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I couldn’t agree more. Giving a new drug a fair chance is one thing: soldiering on indefinitely with something that is definitely destroying quality of life today in return for some ill-defined and uncertain future benefit is quite another. I have been on DMDs for most of the past 16 years and am very grateful for them, but I definitely wouldn’t have put up with that.

Alison

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Just occurred to me: have you tried any of the injectables? Sticking a needle in my leg was never the highlight of my week, but the side effects were mild indeed in comparison with the horrid things you have been putting up with!

Alison

When I was diagnosed I was told by the nurse because I was not symptom free I was not suitable for and DMT. The consultant informed me in September that I had RR MS for the first time. This was after asking him if he was sure I had MS as my GP is reluctant to attribute issues I have to MS. I am hoping it will settle and perhaps I should reduce the dosage. It’s been difficult as I have no one to talk it through with the nurse always has voicemail the consultant too busy and GP !!! This site has been most helpful. I call it taking my poison which is not good I know but it has just been so awful and thankfully my employers are very supportive. I have managed to go to work albeit in a bit of a fog. I remember very little of the last four weeks. I can’t keep taking antacids indefinitely and the GP is giving me 8 anti sickness pills if they stop I’d have to stop the Tec as they are effective . I can’t envisage if I didn’t have them.