Tecfidera side effects: I started... - My MSAA Community

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Tecfidera side effects

Sadieschafer profile image
21 Replies

I started Tecfidera 2 weeks ago. The first week or so I was fine, no side effects on the low dose. I switched to the regular dose 5 days ago, and have terrible nausea and stomach pain! I wonder if anyone has stayed on the low dose for longer to alleviate the side effects??

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Sadieschafer profile image
Sadieschafer
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21 Replies
ssdw1958 profile image
ssdw1958

Did you call the phone number they give you to let them know what is going on and are you eating something before you take it oh are you drinking enough water with it. If you are and still having problems and you can’t get through to the company I would call your doctor.

Good luck and I hope you feel better soon.

Sadieschafer profile image
Sadieschafer in reply tossdw1958

I called both, and yes- eating and drinking plenty. My doctor is out of the office until Monday. 🙁

Birdymom3 profile image
Birdymom3 in reply toSadieschafer

I have been on the 120 dose with good results on mri for a couple years because the full dose caused progectile vomiting so my doctor and decided to do the starter dose so far so good.

Sadieschafer profile image
Sadieschafer in reply toBirdymom3

Your doctor agreed to keep you on the starter dose? So glad to hear you are doing well and no new lesions!

Kenu profile image
Kenu

Sorry for the outcome of side effects. Call the company and your doctor. I had the same problems and unfortunately it did not get better and had to switch 🤨. I tried for two and half months 🤢. Don’t stay miserable 😖 Call 👍🐾 Ken

Sadieschafer profile image
Sadieschafer in reply toKenu

I could never make it like this for two and a half months! I can barely get through the day. The company said it is a common side effect. My doctor said if I still had trouble in a few days, he may put me back on the lower dose for a while...I just want to feel better!

rjoneslaw profile image
rjoneslaw

I have been on it for 2yrs now with on side effects. Call the company they always ask if you are having side effects or if you have concerns.

Peruzzot profile image
Peruzzot

I've been on it since December and only had sharp stomach pains once because I forgot to eat something first. I drank it down with some apple juice on my way out the door to go to work. Trust I don't think I'll ever take it again without food first. I was on Avonex before and reacted very badly to that. If food doesn't help, call the numbers you were given and your doc to let them know.

Sadieschafer profile image
Sadieschafer in reply toPeruzzot

Thanks! I did take it with food, and sadly still had bad stomach pains and Nassau on and off for over a day. Did you start out by taking one week on a low dose and the regular dose after that?

Peruzzot profile image
Peruzzot in reply toSadieschafer

I started with the low dose then started the higher dose. I had the flushing for about a month, but after that I've been good with it after that.

Sadieschafer profile image
Sadieschafer in reply toPeruzzot

Were you on the low dose for a week?

Peruzzot profile image
Peruzzot in reply toSadieschafer

Yes. Just a week.

Klclippert profile image
Klclippert

Hello- I’ve been on Tec since it was approved by FDA. My doc at the time didn’t have any other patients on it so he didn’t know much about it. he started me on low dose for 2 weeks then up to higher dose and I had major stomach pain like you. At the same time I was switching to a new doctor at university hospital and they knew a lot more about the drug and immediately took me back down to low dose. I think they may have even had me stop entirely for a few days or a week or two to let my system settle before starting a low dose again and then it was a month before I went back up to higher dose. If you’re system doesn’t settle going back down to low dose you might need to stop for a bit and start over. Since then I’ve just had flushing and some mild stomach discomfort every once in along while and I think it could be brought on by something I eat like ice cream. I’m 42 , female 140 lbs if that helps. I hope it works for you. In my opinion a pill or two is much better than injections. God bless!

remedy4paws profile image
remedy4paws

I was on Tecfidera and had the same, stomach pain and nausea. I carried barf bags in my purse and car. I am now on Aubagioand no more nausea. But, I'm am getting the hair loss and an interesting thing. My hair is getting curly. I have always had some curls but now I'm beginning to resemble Shirley Temple. Any one else had this side effect on Aubagio?

Kenu profile image
Kenu in reply toremedy4paws

I have been on Aubagio for sixteen months and no side effects. I thought my hair came back curly because of cancer 🤷🏼‍♂️ But I started Aubagio just after cancer treatment, maybe it’s from Aubagio for the curls 😂🤣😉🐾 Ken

Sukie427 profile image
Sukie427 in reply toKenu

So funny you should say that! I was born with very curly hair, and went I went to kindergarten in the 1950s all our moms gave us girls "pixie cuts" and my hair grew back straight! I lost most of my hair when I had liver cancer at 19, and it grew back straight but really wavy! Now that I live in a dry climate, it's straight again with a little help from keratin!

Linda3579 profile image
Linda3579

Hi Sadie, I had the same experience as Ken. My stomach just couldn’t tolerate it. I was so relieved to get off of it. It’s best to talk to your doctor. It’s really awful to be nauseous and vomiting all the time. Wishing you good luck. 🙏Linda

Juleigh21 profile image
Juleigh21

I did fine on the low dose and was very ill on the higher dose. I asked to go back on the low dose but was told I couldn’t. That was about 2 1/2 years ago. Then I had a miserable relapse and my new neurologist changed my DMT. I’d be asking for help first thing Monday morning. There are a lot more DMT choices every year. Good Luck to you!!

YLGram profile image
YLGram

My Dr, kept me on low dose for 2 weeks then 1 regular (240mg) dose for 2 weeks then full dose. He said he wished he had come up with in the beginning. No problem, and I kept a journal. Always after a good meal.

Some flushing when starting and hot flashes. On it for 1yr, 5months, all is fine but very occasionally some flushing on arms still. Metabolism has seemed to increase a little bit; have a bit more energy and have dropped a bit of weight (5-8 lb.).

hairbrain4 profile image
hairbrain4

I took Tecfidera for two years & went back on copaxone. It wasn't keeping the relapses down. It did make me nauseated if I didn't eat or drink enough water. I I would suggest you call your neuro & tell him/her your problems. You can also call the drug company or even the pharmacy that you get it from. They should be able to help you.

Sukie427 profile image
Sukie427

I have been on Tecfidera since it went on the market. The only side effect that I have ever had with it has been an occasional flushing upon taking it or sometimes I begin to itch. I have never suffered the symptoms which you describe. You should let your dr know ASAP and you should also call Biogen to speak to a nurse. The number for Biogen is 800-456-2255. Just follow the prompts. They and your prescribing dr will want to report these symptoms to the FDA. I had very similar symptoms while on Gilenya, which I thought was a great drug, until it tore my stomach apart; hence, the switch to Tecfidera. Good luck and feel better soon.

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