Last reply 3 months ago
Stopping tecfidera?

Hi everyone, hope you’re all having a happy holiday season

I just wanted to ask, has anyone here been on and gone off of tecfidera? I’ve been struggling with stomach pain since starting it about 8 months ago and have finally had enough and think I will be switching to something else. Just wondering how long they made you wait before starting another drug? My next neuro appointment isn’t until mid February, but I’d really like to hear from anyone else who’s had experience with this

Thanks!

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james7
2 years ago

Hi Melissa, I started Tecfidera last August I struggled with stomach and nausea at the start and stuck with it. It does get better. I am very happy with it now. The days where I skipped a dose, I noticed on resuming the side effects got worse. My advice is stick with it, never miss a dose (takes determination and persistance). I try to eat balanced meals: plenty of protein and some fats seems to help, (scrambled eggs work well).take tablet 12 hours apart and just after a meal. I hope it gets better for you soon.


yassyg
2 years ago

Hi Melissa I have also experienced awful stomach pain on tech. It has gone now and I think that’s because I make sure I am eating regularly. Have you tried eating certain things? My consultatant recommended me eating it with avocado or buttery toast. Thanks Yasmin


potter
2 years ago

I have been on it for almost two years and recently my stomach upsets got unbearable I tried changing my diet it didn’t make any difference. Then I realized that I hadn’t had any probiotics for several weeks, I kept forgetting to buy them. I started taking them again and started getting better after a couple of days. I haven’t tried the avocado but the buttery toast does work. Denice


Anonymous
2 years ago

@melissa-g I participated in the tec clinical trial and I just don’t remember anyone having these problems for so long. And even if it is ok, why do it? Treating your MS should not be this difficult. There are several of us that are taking newly approved Lemtrada that’s much more effective than tec and can halt the progression of MS with just 8 infusions in 12 months for life. There are several testimonials at shift. I had the first round 17 weeks ago and have started seeing improvements even though I probably was a worst case candidate. Do some research and advise your neuro that you would like to switch.


melissa-g
2 years ago

@yassyg @potter I’ve tried all kinds of food with it, sometimes it’s not so bad, but other times my stomach is just killing me all day. I also have IBS, so maybe that’s why I’m so sensitive to it. Not sure! I’m also on a high dose of probiotics every day. Not much luck there either

@orlando27 I have been fighting my neuro on this. I want lemtrada, but he refuses to give it to me saying he doesn’t have experience with it, and that he thinks it would be “escalating” my therapy. Basically he said to me maybe if I progress further I can then have it. I’ve been trying to get in to see someone else about it but so far haven’t had any luck with that. I haven’t given up, but it’s not looking like it will happen for me any time soon


potter
2 years ago

I’ll do some research on Lemtrada but my doctor probably wouldn’t let me take it. I was allergic to the carrier in the Rebif shots and tend to be allergic to most drugs. We just changed insurance and the pharmacy wanted to know what I was allergic to. The list was too long to give to them over the phone. Sometimes I will skip the evening pill when my stomach bothers me for several days. That seems to help and I have permission from my doctor to skip when I need to. Denice


Anonymous
2 years ago

@melissa-g Your neuro sounds like an idiot! Any neuro that recommends waiting until you get worse and doesn’t want to try something approved as a first therapy in the UK speaks to his gross incompetence and utter laziness for not doing his job and learning about the newest therapies. Billions of $s are not spent and scientists devote their lives to cure these terrible diseases so that close minded lazy neuros can decide not to give them to their patients because they don’t have any experience. It would not be escalating your therapy. It would be possibly ending your years of therapy with a cure! Move on! I traveled 1000 miles to change neuros. It was that important to me to stop getting worse and maybe even get better! 🙂


melissa-g
2 years ago

@orlando27 I’m trying to find someone else. It’s a lot harder than I thought it would be! I can’t seem to get anyone to agree to see me, but I’m willing to travel if I need to, fingers crossed I can find someone. Hopefully
I won’t have to go out of province (I’m in Canada) as I don’t think it would be covered at all by our health care if I do that, but we’ll see!


stumbler
2 years ago

Have you tred to see if the MS Society can offer any advice/assistance, Mel :-

https://mssociety.ca/ ?


sonia1984
2 years ago

Melissa-g are you seeing someone at St. Michaels hospital? I was told about Lemtrada by my Ms specialist but am currently on Gilenya. She seemed willing to try the Lemtrada next but I think I have to try a couple treatments first before insurance would step up. I am also a fellow Canadian girl. How many treatments have you been on since diagnosis of you don’t mind me asking?


melissa-g
2 years ago

Hey @sonia1984, yes I do see someone at St. Michaels, I’ll PM you to talk more about it!


bourbonrose
2 years ago

Melissa-g,
I’ll get straight to the point. Tecfidera wrecked me. Shortly after I began taking it, I ended up getting hit with the worst virus, that felt worse than the flu. I was scheduled for a surgery a week after that for some oral surgery (jaws broken, and wired shut again), I was terrified that the virus was going to keep me from surgery, luckily, it did not!
The Tedfidera from day one made me feel terrible. My insides felt like they were being pumped with poison. Food was an enemy, and I lost my sense of taste. The hives, and flushing was terrible. Imagine, being in a business meeting, and being red as a beet out of no where.
The other thing that was the hardest to explain is that I felt exceptionally puffy, and swollen. I was retaining an inordinate amount of water and if I pressed down on an arm or a leg, it left the layer under my skin feeling like it was almost filled with water. Hard to explain.
Bottom line, after my mouth was wired shut, I couldn’t take the meds. But then after I could take them again, and when I re-started, it didn’t take long to make the decision to get off of them.
I went without any DDR for several months, and now am on Gilyena. I’m hesitant because of the fatigue that can be terrible most days. I’m on Nuvigil, which can help.
My Neurologist is very aggressive, and it is because of him and his methods, that I am overall “pretty good” given the big tomato of having M.S.
I just joined today, and I’ll fill out more of my profile so folks can learn about me as soon as I get a chance.


melissa-g
2 years ago

@bourbonrose it sounds like you had some extreme reactions to tecfidera. I luckily didn’t have too much trouble with flushing, only on occasion, and mostly in the middle of the night for some reason. My neurologist seems to be understanding that it’s causing me pain still, after so many months, when it usually eases up for most people, but he just keeps making it seem like I should keep trying. Right now I haven’t been taking it for almost a week, and will decide if I will try again after a bit more time. I still have stomach issues, I just dont know how much is because of the tecfidera at this point, or if its done any damage. It’s all very confusing!

@stumbler sorry I’ve only just seen your comment now! The MS society here doesn’t seem to want to involve themselves in recommending doctors or anything like that. The most they would do is maybe tell me the name of other neurologists who see MS patients, I don’t think they would get any more involved than that.


Anonymous
2 years ago

@melissa-g I have never heard of a more serious case of malpractice. Your neuro must own stock in Biogen. It is the only possible reason other than insanity that he would insist that you take tec despite the severe reaction over several weeks that you have had. We are blessed to have several good DMTs now. There is not one good reason to stay with one that causes painful SEs. Do me a favor and find a private neuro. If your Canadian plan will not pay for it and you can’t, then I will. Be smart and put this guy in your rear view mirror!


melissa-g
2 years ago

@orlando27 unfortunately thats not really an option in Canada, I would if I could. I’m just going to see how it goes without the tec for a bit, and decide if I want to give it one last try or ask to be put back on Gilenya. As long as I’m fairly stable I suppose I can live with out lemtrada for now, though it does sound really promising and I won’t give up entirely, but I guess I just have to wait and see how it all goes!


sistersami
1 year ago

I also had that terrible stomach pain. They said to take tech with food so I interpreted that as taking it at the conclusion of a meal. I found that if I waited a while (an hour ended up being the right timing for me) after I eat before taking tech, the stomach pain and intestinal issues are dramatically reduced. I set a timer. If I eat a smaller meal then reduce the waiting time. The best food I have found is Greek yogurt. I added a probiotic and that gave some relief, but the magic bullet was the addition of an apple cider vinegar tablet. I take those every day now. My theory is that the intestinal issues in the beginning really get your system out of whack. The probiotic and apple cider vinegar tablet help to restore balance. I also learned that I should also wait a bit (at least an hour) after I take tech before I eat anything. When the pain does occur, club soda or anything with bubbles works really well. My personal belief is that the pain is trapped gas. Burping (and forgive me, passing gas) really helps to relieve the pain.

I was on rebif before. It took me a year to figure out the secret handshake for tech but it is worth it not to have those rebif side effects or the pain of shot-site reactions.


leighlincoln
8 months ago

Hi Melissa

Came off Tecfedira a month ago and had 1st half of 1st infusion of Ocrevus yesterday. 2nd half in 2 weeks time then nothing for another 6 months. So far no side effects. Nursing staff all very kind and helful not leaving me on my own all day. Someone near me all day to answer any questions.

feel free to sent me a p.m. if you want to.

Take care

Pat


makaylab97
8 months ago

I’ve been on tecfidera for about 7 months now and also have really bad stomach pain/sickness almost everyday. I was told to take it with food but that doesn’t really help at all. I talked to my neurologist and she pretty much said my stomach problems could be caused by everything other than the med. And that she wanted to keep me on it a little longer to see how its working for me. She prescribed me nausea medication (which has minimal effects) and told me to take tylenol or aleve with it. I’m still sick almost every day. My neurologist says that she does not want to switch me because I haven’t been on tecfidera very long (I’ve been taking it for about 7 months), but I want to switch to something else soon. I hate feeling like this every day.


stumbler
8 months ago

@makaylab97 , I’m wondering how long the Neuro wants you to continue to suffer this side-effect.

It’s your body, so you should have a say in the matter. Suggest that you take a break from the Tecfidera for a month, or fortnight. If this stomach pain stops, then you should be able to assume that the pain is caused by Tecfidera and not something else.


melissa-g
8 months ago

Absolutely agree with you @stumbler.

@makaylab97 I had existing stomach problems which is why I was unsure for some time, but it was really making things worse. I’ve been off of it since February and don’t have the pain that it was causing after taking it anymore. If you feel like that is the reason you’re having problems, sometimes you need to get pushy! I feel like some doctors put more priority on what the MRI results are after being on a drug for some time, and forget that we’re the ones who have to live with the side effects every day, so it’s not really working!


Anonymous
8 months ago

Yeah, I stopped when I increased the dose after two weeks, bloody horrible drug. Left me morose, without motivation and hallucinating, which was fun but no good, goodbye Tecfedera! Back on goo old, reliable, fathomable Copaxone!


pikilily
8 months ago

hi @melissa-g
We can all only talk from personal experience, I will get to my experience however want to just point out that this may not be happening to you.!!!?? and i don’t want to add to your stress!

I started Tec in January, and would find at every rise in the dosage (it was small by increments) I would have a pretty uncomfortable time with aching, crampy stomach, but after a week it would settle. My appetite just disappeared, so eating food with the doses became a real chore.
I took probiotics, which I believe really helped. And the aspirin.

Now, in March just as I got to the full dose, I became very unwell, everything got worse, I had some bloods done, and the eosinophils were ridiculously high. This was flagged by the haematologist as an allergic reaction to the drug.
The MS neuro decided given this result and the history of discomfort, that I needed to stop Tec. He wanted a months break before I started anything else, to give me a chance to recover. Within a week my bloods were returning to within the normal range.

Also I was bleeding, and that it triggered a positive result in bowel screening – so I also ended up having to have a colonoscopy..just to add insult to injury..LOL

Perhaps you could ask for a blood test, …….maybe you are sensitive to the drug too. This maybe enough evidence to support a decision to change.

Remember the choice is always for you, and you alone to make. As stumbler said . Its your body. 🙂
cheers, and take care. Emma T.


pikilily
8 months ago

Oh Crims, I have just noticed this OP was two and a half years ago!!
ET


krissy1983
8 months ago

hi!
I know this is an old post but I had to go completely vegan while I took Tecfidera. I went off it because I couldn’t deal with the pain no more. Doctors couldn’t find the issue on what was causing this. I told everyone it was the meds and they basically stated it was in my head. I then moved onto Aubagio and my symptoms of stomach pain lightened but the relapses happened. I have been on 3 types so far and nothing had worked with controlling the progression. I started off with copaxone and after 3 months, my body started to reject the meds.


imeinsask
5 months ago

I have been in Tecfadera for about 18 months and I have never had stomach issues at all. I get flushing on occasion sometimes worse than others but it all depends on what I eat…the worse and most annoying is the dry mouth…other than that it seems to be working for me…


mlgilber1
5 months ago

I just recently stopped taking Tecfidera because my MS symptoms were getting a lot worse, I could no longer lift my left leg! Did an MRI and had a lot more lesions and one in my spine was 3 times bigger than a normal MS lesion. I was in the hospital and received plasmapheresis which helped immediately, I just hope the effects last awhile since I finished my last treatment. I’m also waiting to see a new neurologist because she said I have a severe case and may have another autoimmune disease in addition to the MS called neuromyelitis optica, still waiting on results. It does take forever to get into another neuro. We are thinking of lemtrada. Hopefully we both won’t have to wait long before starting a new treatment and to see new neuros. Hope all goes well!


californiadreamin
5 months ago

@melissa-g

My wife stopped Tecfidera for a month more then a year ago but then we were able to make it work. During that time and since I have specifically asked her neurologist on how long to wait if we had to switch. His answer is that technically there is no known reason to wait it can be as soon as 24 hours. Just out of caution most people will wait two weeks. The exception to this is if you blood counts are low then they would like them to recover. That can take months potentially.

My wife’s counts started at 2.8 (high) then 1.6 then 1.2 and now .9. 1 is the low end of normal. At .5 and below for periods of more then 6 months there have been cases of pml. At .5 it could take months to get back to 1. If she drops much more we would look to switch proactively from Tecfidera to avoid getting stuck waiting for the counts to recover.

Hopefully that helps. We are at a good ms center in the US in that there are a number of ms only doctors who interact with each other frequently.


andreiac
3 months ago

Hi Melissa,

I live in France and I started Tecfidera 2 years and 3 months ago. I still have some stomach symptoms from time to time, but they’re rather marginal. Back when I started the treatment, indeed, the stomach symptoms were terrible. But I (almost) completely managed them by taking Aspirin. I began with 500 mg only in the morning, 15 min before Tecfidera. Than I decreased the dose to 250 mg Aspirin, after 2 weeks. After 2 more weeks I was taking 100 mg, only in the morning. I continued with this dosage for some months, and my metabolism started to habit with Tecfidera. Form more than a year I put Aspirin aside. And the treatment is completely mute, in terms of symptoms. Thus, Aspirin was decisive to combat side effects in my case.

Another advise is to thak the treatment of Tecfidera ~30 min after the meal.

I also have to tell that my lymphocytes never decreased below 1600/mm3 and 98% of the time remained around 2000.

I wish you all the best!

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