Help with Tecfidera and severe n/v

[sheli18]

Please help with first hand experiences please. I had been taking Tecfidera for 2 weeks on Thursday and had only minimal side effects (anyone can put up with a little flushing when they have taken avonex for 10 years). I have premedicated with Zantac with each dose and had had no problems, felt like my pre-avonex self again.

Thursday, however, I woke up at 1:00 am vomiting for 2 hours after which I felt better. I called my neuro later in the morning and also the drug company--they told me this could happen but should get better but to call my MD-- and my neuro never called me back. I did take my morning 240 mg dose and felt good until late afternoon when I proceeded to vomit continuously.

I ended up having to go to urgent care--they told me I had a virus (they wouldn't listen to me about the tecfidera side effects, I had no signs of infection, they barely checked anything at all, I'm an RN so I was really unimpressed). They ordered Phenergan which I can't take at all (knocks me for a loop). My son had some Zofran from a GI bug last year so I opted to take this.

It did help some, but I could not take my pm dose of Tecfidera or I would have thrown it right back up. Friday am I took another Zofran and Zantac prior to my Tech and actually did fine. Again my neuro never called back after another message was left (not happy!).

Took Zantac before pm dose of Tech and felt ok until once again awoken at 1:30 am with massive vomiting. I called the neuro oncall this am. This is what he said--several of his patients have been unable to tolerate tech due to n/v, says none of his patients have been able to stick it out to see if the s/e would ever go away, but that the drug company says it eventually will go away.

He said due to my hectic job he would give me two options, if I felt like I could handle the n/v then to try to return to the lower dose of tech for a while but he wasn't sure if I would be able to tolerate this and that a lot of his patients have even had to be hospitalized for the severe n/v. He said if I didn't think I could tolerate this, for me to quit altogether and call my neuro for appt. next week to discuss other options.

I was so happy with Tech, I have been through Betaseron, Rebif, Copaxone, and Avonex for the last 10 years. I don't really know what to do. I have actually been in tears this morning. If it would really get better, I could maybe handle it for a while. Has anyone actually gotten through the severe n/v and gotten better. I thought maybe about taking 1 Tech per day until I can see the neuro. Any help or advise would be appreciated. Thanks.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[emily06]

severe vomiting

I had the severe vomiting and I tried to look at it that I had wanted to loss a little weight so this surely would do that. But in the end I didn't loss any weight which I couldn't understand why because it was continued massive vomiting keeping nothing down. That a big mystery why I didn't loss any weight at all. But my doc took me off the Tecf saying that was too of a severe allergic reaction.

I do have to say for a brief period of this horror I was walking better - something I hadn't had in a long, long time. But my doctor said I couldn't continue to take it and he has hopes I'll find another one that will give me that goodness with out ALL THE HORRIBLE PROBLEMS I HAD!. so fingers crossing for the Aubagio but I'm still alittle leery if my insurance ever goes throught.
good look to you but it sounds like you should try another DMD.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Tom73de]

Many people in Germany that were taking the drug Fumaderm to threat their Psoriasis started with a much lower dose than what is currently recommended for Tec.

The active ingredient in Tec is DMF and this is also 1 of 3 ingredients in Fumaderm. DMF is known to be able to cause GI issues.

The recommendation is to ramp much slower to allow the body to get used to the drug. For example start with taking only one 120mg each day for the first two weeks. Then try to increase to one 240mg each day for the following two weeks.

If your body is not reacting well to the higher dose, stick to the lower one for a while and then make a new attempt.

This is working for some people in Germany taking Psorinovo or DMF very well (both drugs are dimethylfumarate) and GI effects are less severe or even avoided.

Good luck with Tec!

[brooks1teacher]

Ugh, sorry

I have just completed week one on Tecfidera and have had every side effect possible. The nausea has been terrible and I have had a little vomiting but mostly diarrhea.

My neuro's office did call in a script for Promethazine 12.5 mg twice a day (aka Phenergan) for the nausea and it has been helping. I can feel it if I am not quick enough with the second dose and as soon as I start to eat what little I do eat, I get sick to my stomach.

I also take Omeprazole (aka Prilosec) before I take Tecfidera because I have esophagitis and gastritis.

I have no other options besides Tecfidera at this time because I've tried Copaxone, Rebif, and Tysabri and I am in need of a liver transplant. The other oral meds all have significant liver damage side effects.

I'm pretty sick right now with other issues besides the MS but that beast is making me extremely weak in my arms, legs, and torso and I have in-home PT three times a week and OT twice a week. I also receive Speech services at home because I have problems swallowing food, pills, and now liquids.

I am on the way to Mayo Clinic in MN in a month so they can figure out everything wrong with me and hopefully get me on some sort of road to recovery.

Please let me know if your n/v issues improve and maybe ask your doctor for something for it. I hate popping another pill, especially one that's not great for my liver but the n/v issues were ridiculously severe and constant no matter what else I did.

I'm sticking with Tec and hoping that I see less side effects in the future and more benefits once I am past this rough patch.

Hugs!
J

[sheli18]

Thanks for the responses

Thanks for all the reponses and insights. Since Saturday the vomiting has subsided, but I continue to be nauseated practically all the time and not eating much at all which I cannot afford to do since I have lost 10 lbs over the last few months. Had TERRIBLE constipation on Sunday which finally resolved but at that time I started to have lower abdominal pain which continues to come and go. I opted to take the Tecfidera 240 mg once daily until I see my neuro this Thursday. I hope he will order some premeds to help me get through the side effects and that I will be able to continue the drug. However, it is 12:30 am and I had to get up out of bed d/t nausea. Oh well, just glad that I don't have to work tomorrow. Maybe things will get better. brooks1teacher I just said a prayer for you, hope things do get better and you find some answers.

[sunshine008]

hi

my nurse told me try eating apples, or the skin of the apple prior to taking the med, also as many here have said try fatty foods before you take the dose it'll help cushion the blow of the med once it enters the blood stream.

I"m sorry, that does bite though i hope it gets better.

[sheli18]

hi

my nurse told me try eating apples, or the skin of the apple prior to taking the med, also as many here have said try fatty foods before you take the dose it'll help cushion the blow of the med once it enters the blood stream.

I"m sorry, that does bite though i hope it gets better.

Thanks for your advise about the apples--I will try this. I had been eating mostly high fat meals with each Tech dose all along, not even a twinge of GI upset until 2 weeks on Tech. I had actually gotten some of my weight back before this n/v started last Thursday and I lost 3 lbs over the weekend. Now it is almost impossible to eat anything, but I am trying, especially prior to my Tech. I also have been trying to at least keep down Activa to help with colon health. Thank you again for your help.

[brooks1teacher]

Thanks for the prayer!

I hope you get some relief soon and maybe some meds to help you out.

I am seeing a new neuro on Thursday for a 2 hour appointment and I hope this will be helpful seeing as how in October I could walk and do everything normally and now I can barely wobble with a cane.

Let us know how you're doing and what your doc says.

Hugs,
J

[sheli18]

I saw my neuro yesterday, he changed my Tec back down to 120 mg twice daily for a month then for me to try to go back up to the 240 mg twice daily, he wanted to give it more time for my system to get used to it. He ordered Zofran 8 mg twice daily to be taken 1 hr before each Tech dose. I am awaiting the decreased dose from CVS/Caremark and am continuing the 240 mg once daily. I took the Zofran last night and I did not wake up vomiting. When I woke up this morning I was nauseated, but this got better around 10 am. Fingers crossed that this will work or he said he would have to change me to Gilenya.