charlotte123 23/12/17
Last reply 3 months ago
Tecfidera Stomach Pain

Hi Guys, I’m 22 and got diagnosed with RRMS in October this year. Can anyone help me? I’m transitioning into week 3 of Tec and on Thursday I started developing the most severe and intense stomach cramps. It wakes me up in the night and I am brought to tears with how much pain I am in. Last night, I almost rang the out of hour hospital because the pain was unbearable and I honestly felt like I was dying. I’ve been taking Anadin Extra as a painkiller (doesn’t seem to be doing anything) and I’m now going to try Rennie tablets (for upset stomach and indigestion) But does anyone have any tips on dealing with the pain. Right now, I just wanna give up and throw the towel in, considering it’s Christmas Eve tomorrow and I haven’t been able to enjoy anytime with my family, as I’ve spent the majority of my time in bed. Please help me! Xx

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adamski
3 months ago

Hi @charlotte123, I didn’t get the pains and cramps after my morning pill. But the evening one was a different story 😔
What worked for me was washing the pill down with a yakult in the evening. It stopped the pain and bloating I was getting. Hope this helps, good luck…
Adam 😆


charlotte123
3 months ago

@adamski Thanks so much for getting back to me. I will get some Yakault first thing tomorrow, did you eat as well or just simply have the Yakault on its own with the Tec? My pain seems to be lasting throughout the whole entire day and I’m struggling to eat anything because it hurts SO much! I know I need to eat but I’m struggling.


adamski
3 months ago

Oh yes @charlotte123 I’ve never risked not eating before a pill. I’ve done a lot of changes to my diet when I started Tec and have managed to change a lot back as my body has got accustomed to it. Another key thing I found was don’t let your stomach get empty. Smaller meals and more often. I have 2 smaller lunches each day and always have raw walnuts that I snack on throughout the day. The protein helps. The other key thing is keeping hydrated 😊
Hope this helps, but remember like ms we are all different, you will find what works for you. Ì also kept a food diary when I started Tec to help work things out. Adam 😉


stumbler
3 months ago

@charlotte123 , you can find all the previous conversations regarding Tecfidera, including gastric problems, by following this link:-

https://shift.ms/category/treatment/tecfidera


bernadette
3 months ago

i started Techfidera in june, on the second week when i increased to the higher dose tablet i was poleaxed, could hardly get out of bed, felt like i had the flu except knew i hadn’t, after 5 days of feeling rotten i contact the hospital who immediately said STOP taking them. i had no gastric side effects btw
the hospital contacted me a couple of days later after speaking my consultant who said to go back to the lower dose 120mg. until i collected the meds i took nothing and after 9 days lost to my life restarted on lower dose.
if you are in pain i really think stop for now, and contact your hospital after christmas.

over the a number of weeks i returned to the higher dose – once again i felt awful and the hospital now prescribe me one of each dose ie 120mg + 240mg daily
its not ideal as it doesn’t fit the literature and what is advised but i’m over 55 and there is no evidence in my age group to say its going to help me anyway. sadly.


californiadreamin
3 months ago

@charlotte123 My wife had a very similar sounding issue on week 3. The first weeks were totally fine. Does it feel like a tennis ball pushing up into your rib cage/heart area? It comes on 3 hours after taking the medicine and after a few days she was to stop (we actually did stop) for a while. We started again and almost gave up, where we ran across a study biogen was doing that was taking Singulair with the Tecfidera. It took 72 hours for it to work and then everything went away. Now she doesnt even know if she has taken it. I might have posted on this in the past but Singulair is one of the most common medicines in the US but it needs a prescription. Our dr was willing to let us give it a try. The generic name is: Montelukast. FYI my wife found the pain got worse not better as she continued taking it. She found that walking and staying upright helped. It would wake her up with unbareable pain in the night. Quite scary.

https://clinicaltrials.gov/ct2/show/NCT02410278


potter
3 months ago

Charlotte are you taking your Tecfidera in the middle of your meal, if I took it after I finished eating I would get terrible stomach cramps, felt like I was going to vomit. I am going on my 5th years on it and I still take it that way. The smallest meal I can take it with is a bowl of cereal with nut milk on it. Sometimes I finish my dinner and realize that I have forgotten to take it, my husband gets up and makes me a piece of toast so I will have some food on top of the pill. I don’t eat bread with dinner, so I don’t feel like I am getting to much bread in my diet. Some people are unable to take Tecfidera and some have to be on the lower dose longer. But if you are that miserable I would stop taking it until you talk to your MS nurse. Potter


bensdad
3 months ago

I don’t have ms but I would not put my body through this, if I did have ms… .Listen to your body. Nobody knows your body as well as you do ( FACT) ….Change your meds?


californiadreamin
3 months ago

Quick question. Do you feel like you have to burp and have a lot of air trapped in there ?


charlotte123
3 months ago

@bernadette I’m calling the hospital today and getting some advice. I think I’m going to have to stop taking them. I was woken up again at midnight, 3.5 hours after I had taken my last Tec of the day. Then again around 2pm, this time.. projectile vomiting. The pain is constant as well, it’s not like it comes and goes.

That’s my only concern. I don’t want to stop taking them, be put back on them and then go through ALL of this all over again.

Thanks for your advice and sharing your story with me.


charlotte123
3 months ago

@californiadreamin That’s exactly what it feels like. It feels like I’ve been winded in the gut area or like my intestines are being pulled left right and centre. Unfortunately because I am from the UK, London, I’m unable to get that medication I think. And YES, I agree with her, walking helps with the pain more than laying down! Which sucks when it comes to bed time.

How many days did she deal with the pain for? Before she got a second opinion? This is my 4th day..


charlotte123
3 months ago

@potter Hey, yes I am. I have spent 3 nights researching everything and looking for advice, tips and tricks on how to manage the pain and how to take Tec correctly. I take it half way through my meal, I drink a full glass of water, I make sure I’m eating Carbs and Protein. I don’t know what else to do. In the booklet that I was given, it had an example of a lady in there who said that her stomach cramps lasted for 5 days and then it was all over. This is Day 4 for me.. but it’s also Christmas Eve. Do I try and get through one more day and if I don’t feel better, then stop taking it? Or just give it up now because the pain is excruciating and it’s not guaranteed that it will be gone by tomorrow (Christmas Day) ?

Thanks for messaging me and sharing your story. Because it’s the holidays, I can’t get hold of my Nurse, I emailed but no response so I’m going to ring the hospital in about an hour and see what they suggest.

Argh, I’m so frustrated and upset. X


charlotte123
3 months ago

@bensdad I know right.. but unfortunately Gastro issues are a side effect, it’s just that I never knew that it could be this bad. Nothing prepared me for this LOL. I will stop, if they tell me to ride it out… I will tell them to try it for a few days and see how they like it. It’s ruining Christmas for me!


charlotte123
3 months ago

@californiadreamin Yes, like I’ve been winded in the stomach. I’ve even taken indigestion tablets, made homemade ginger tea as it’s an anti inflammatory etc. I burp all the time and I’m not never a gassy person and then at 2am, I threw up everywhere. I give up 🙁


californiadreamin
3 months ago

We followed all the same advice to no avail. We gave up as well as if kept getting worse. She also threw up several times. I found the medicine because 4 people had the same problem and Biogen (the company that makes tecfidera) tried singular with it and all four got over their problem in 72 hours. That’s exactly what happened to my wife.

My wife was diagnosed last October. By this time of yesr last year she gave up as well. We started again on Jan 5th and she started on 120 tablets again. The pain was just as bad on the small dose. So we stopped and used singular for several days and started again on the lower dose. She never had a problem again.

There aren’t a lot of choices so we wanted to give it a real try. We were thinking gilyena next but we really wanted to give tecfidera a shot if we could get through the first 8 weeks or so.

Is there no dr that will give you the medicine? 2 years olds take it for asthma as well? It’s super safe. We started with the 10mg dose and gradually tapered to smaller and smaller doses by cutting the tablets.


californiadreamin
3 months ago

By the wife my wife compared the pain to childbirth but lasts a lot longer. Seeing her like that really made it hard to imagine continuing. There was no way she could have contUnited as it kept getting worse.


californiadreamin
3 months ago

also to answer your question we got a second opinion after day one of the pain. The system is probably a little different in the US then UK. They basically advised to give up and try something else. It’s esiser for them to say that I think then when you are the patient and there are different consequences with each drug. We were pretty close to driving to the hospital several times.


bernadette
3 months ago

charlotte123 sorry to hear that you are still struggling. i would urge you to stop the Techfidera until well after xmas. what you describe is too serious to carry on taking it ifor now. After all it is only a DMT, some people choose not to take ANY of these.
there are other drugs to choose from if you do want to take DMTs, or as i have done take it on the lower dose or a combo dose regime. Drs will know about these options.
Your medical team would not want to hear of anyone having such a struggle. I do not think they will tell you to ride it out. Your body is telling you NO !!! Acute gastric pain and vomiting such as you describe are not to be taken lightly.
Please give yourself a rest over the holiday and spend the time recovering with things you have been looking forward to.
in case you haven’t come across it yet i would recommend the OMS website as a hopeful source of information. i found it positive in the face of an overwhelming lack of information that i could relate to. Leave it until Boxing day though xxx


vixen
3 months ago

hello @charlotte123, so sorry you’re suffering like this. I take Tec but am one of the lucky ones with no side effects. You know what, your quality of life is the most important thing now, you need and deserve a relaxing Christmas so although I’m not an expert, you need to give yourself and your body a break. I think if you’d been taking Tec for a year I could see why you wouldn’t want to give up on your investment. But you gave it a try, now you can focus on next year and trying another DMT. A decade ago there weren’t these choices, so there will be one for you out there. This has been a rough couple of months for you, look forward now to switching after Christmas. Lots of love x


californiadreamin
3 months ago

@charlotte123 I wanted to make sure I was clear in my response that I totally agree with @bernadette and sharing our experience that it was not getting better but worse. We stopped and restarted with a new strategy and carefully ramped up again from 120’s (in fact we did 120’s once a day for a week, then twice a day, then 120 followed by 240 each day and then did 240s only on the forth week). I do believe there is a very good chance Singlair will solve your problem but its worth talking to your doctor.

Please share the following article with your doctor and try to see if they will let you give it
a shot:

Gastrointestinal side-effects of Tecfidera may be managed by common asthma and allergy drug, new study shows

Its been a great option for my wife so far with no issues at all once she got past this issue.


hmcampos
3 months ago

Hi @charlotte123 !

Had the same as you, even stopped the treatment. Doctor convinced me to restart it and I did, the only thing I changed was my approach to the treatment, meaning I didn’t let my fears stop me. Now I know from experience it can cause severe stomach pain and for that the only thing that works is eating…a lot.

You will eventually get better, pain will go away and medication will settle in.

Best of luck.
H


evie2017
3 months ago

Hi, do yourself a favour and stop taking it. I had to come off of it within a month. It was worse than my ms, even had time off work. Please speak to your ms nurse or consultant. Best of luck 😀


kitty369
3 months ago

Hi I got to week 3 then had to come off then I was so ill stomachs cramps and upset and indigestion.

The tecfidera nurses that u can phone were brilliant might be worth calling them good luck


sylvanna
3 months ago

@charlotte123 I feel your pain, literally. I have now tried to tolerate Tec 3 times and on each occasion it has ended with unbearable stomach cramps and quite spectacular vomiting. I was okay on the lower 120 dose and I will be trying this again shortly and having another consultation with my neuro about ways forward.

It is one thing to have terrible cramps – I am expert at these as a sufferer of both IBS and endometriosis – but vomiting is a sign of serious rejection. I tried Buscopan for the cramps, which was laughably ineffective and went back to vaping cannabis. The latter helps bring the cramps down from a constant ache to an intermittent, and less painful, sensation. I appreciate that this puts me on the wrong side of the law but whatever helps.

Being a methodical kind of person, I am determined to see through every permutation of taking Tec, including with other drugs, before I give up entirely. That way I will know I have explored every option before moving over to another DMT, where I will possibly repeat the process but hopefully not. 😀

@californiadreamin – you are the second person to recommend Singulair so I will most definitely look into it. Thanks for posting the link to the study. I will show it to my neuro.

@charlotte123 just remember that you are not alone with this problem. I hope you find a way of taking Tec and that side effects subside. If the symptoms get worse then before giving up altogether have a short break and then try taking Tec on a lower dose for at least a month. As it is a powerful drug it makes sense that the body will take time to acclimatise. If like me you only had a week on the 120s then it probably wasn’t long enough.

Something else to consider: if you are already sensitive to drugs or have a lower body weight (I am only 5’2″) then you might ask your neuro whether the higher dose is actually appropriate. All drug guidelines are based on averages and if you are far from that average you might be taking more of the drug than is required. Problem is all the efficacy studies are based on the standard dose so you will be heading into uncertain territory but it might be that a lower dose Tec is better than nothing.

Good luck.


joker21jacob
3 months ago

i have been taking tecfidera for 2 years now and i had these symptoms a lot. i am currently taking singulair at night when i take my other dose. singular helps out alot with the side effects. but you can also eat some applesauce when you take your tecfidera. eating applesause helps i forgot what exactly in the applesause that helps but it dose help.

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