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I started Tecfidera about five days ago. I experienced flushing and itching all over within one hour of taking first pill. I called the number on Tecfidera paperwork and they transfered me to a nurse. She told me to take Benydril for itching and asparin for flushing. That really helped and took away side effects. I got non drowsy Benydril so I won't be tired. ( Don't need that added to my fatigue issues.)
Since the first pill the same symptoms have occurred rarely and much much less intense. So I am hoping that will completely be a non issue in future. No stomach problems yet. I am worried about low white blood cell possible side effect but I guess I will just keep getting blood checked regularly.
I've been on this drug since June, and I have stopped the diarrhea, and the flushing is minimal. But I seem to be hungry often, eat larger amounts of food, and have gained about 7 pounds! I can't find this anywhere in the side effects!!!
HAS ANYONE ELSE had this problem?
I started Tecfidera 2 weeks ago. I have had a lot of flushing and redness, a bit of itching. I also have had a bit of nausea and stomach upset but not as bad as many others. It's funny that the redness and flushing happens within the hour then goes away. It comes back when I eat lunch which is weird, then goes away again until my evening dose.
I haven't taken any over the counter stuff (Benadryl, aspirin, etc) because I don't like to take drugs to counteract drugs, but I will if it is any worse.
I am keeping my fingers crossed that I am tolerating this drug pretty well. If this is the worst of it I will take it over monthly infusions or daily injections any day. I almost don't want to say that I tolerating well out loud....don't want to jinx it!
Hi, I just wanted to add my experience with Tecfidera. Please, this is not to scare anyone, just to make you aware that there can be a light part way through the tunnel.
I have only recently been diagnosed and started Tecfidera 5 weeks ago. The first day I started I had some brief stomach pains. Then the next few days it was mainly the flushing and a bit of a bloated feeling. On the 4th day the flu like symptoms started and for the next 2 1/2 weeks I had a hard time eating much, my body ached, my stomach was constantly surprising me, and it was terrible. I even woke up with an ear infection, but don't know if it is related or not. As a result I was also put on antibiotics. Don't think those did much for my stomach. Two days after the antibiotics were complete everything seemed to get better. It has now been a week and a half and although I still sometimes feel bloated after a small meal, my visits to the washroom are relatively normal and I am close to what I was before I started the meds. My neurologist has told me that some of these symptoms could come and go while on Tecfidera, but knowing what to possibly expect is half the battle. And with any luck, what they say in the information package will be true. That in time the discomfort will lessen as the body gets use to the the medication.
Hope this helps all of you. We are all different, but in some ways we are all the same.
Just posting an update. I was off tecfidera for two weeks and started up again at a 1/4 dose last Sunday. This past Saturday the itching and hives came back worse than before along with stomach pains and more dry retching. I am not off the meds again and will meet with my neurologist tomorrow and consider other meds such as Copaxone and Gilenya. I was dx in Jan of 2003 and had been on Rebif since April of 2003. Just had a 2nd MRI this year (after 10 yrs) which showed a new lesion and I had relapse in Feb of this year. Other than that, I had been healthy with very few issues and no side effects whatsoever while on Rebif. My doc decided that it was time to switch meds as the relapse and new lesion seems to show that Rebif was not working as well as it should. Now, and I am not trying to be dramatic, I have felt worse in the past few weeks than I have every really felt (relapse aside) in 10 years. Now, I face daily injections (at least Rebif was only 3 times a week) or Gilenya - which sounds a bit scary with all the side effects.
Like everyone else I was very excited to give up injections and just take pills. But I have to say, I felt depressed when I first started tecfidera and the two weeks I was off felt like I had a new lease on life. I did not realize how much it had effected me.
When I started up again last weekend I felt that same depression.
I wish everyone luck on this medication and I am glad it is working for so many and the side effects are tolerable for most. I just can't tolerate the itching and the hives (my skin was bluish between the hives/welts) and being so irritable. I will move on for now.
Best wishes to all....
Just a foot note. I met with the nurses today at my local MS Clinic to go over my options. I was told as of yesterday Tecfidera is no longer being offered as a 1st line drug but is now a 3rd line. So patients such as myself will not be offered this drug unless they fail on both a 1st and 2nd line. The nurse did not give me any more details other than that...out of the 10 patients on tecfidera at my clinic 2 of us had the same symptoms and were told to quit the meds. So I will likely go on copaxone and hope it works for me. At least I had a nice 2 month break from injections.
"Just a foot note. I met with the nurses today at my local MS Clinic to go over my options. I was told as of yesterday Tecfidera is no longer being offered as a 1st line drug but is now a 3rd line. So patients such as myself will not be offered this drug unless they fail on both a 1st and 2nd line. The nurse did not give me any more details other than that...out of the 10 patients on tecfidera at my clinic 2 of us had the same symptoms and were told to quit the meds."
Fifer44 where are you located that your MS center is not offering this as a 1st line med? I am in Boston ....home of Biogen and am curious if your center is farther away.
Thank you for posting about itching. I have been on Tecfidera for over 2 months and had that happen this past week. I bathed myself in pink stuff and took a Benadryl, but never thought of calling my doctor.
I have some flushing, and stomach cramps on this the 24th day of Tecfidera. The first ten days were at the starter dose with a baby aspirin each pill. The symptom most unexpected was constipation, starting four days ago. I have had that in the past, but not for over a year, and I feel like this is a real setback. Today was the second dose of Miralax, which hasn't worked yet. I had stopped that over a year ago and had been very stable. Going off Miralax took awhile. It was making me feel like I had to 'go' all the time, and even after stopping I would go three, then two, than once a day like clockwork after three weeks or so. I am not happy about this coming up again, and can't help feeling I am poisoning myself. These symptoms are uncomfortable and weren't there before. The constipation was unexpected and only after it began did I find out others were bothered by it too. Just ranting -- this has affected my stable, upbeat mindset and I'm not happy at all about it.
So I start week 5 of Tecfidera tomorrow and my side effects (flushing, heat, stomach cramps) gave been mild so far. (*knock wood*) What I am feeling is happy, I mean really happy. I'd been a little depressed before I started the treatment but now that seems to have cleared. Has anyone else felt depression lifting while on Tecfidera?
I just finished the lower dose and am now on 3rd day of higher dose. I've had some flushing but not real bad and no gastointestinal probs like diarrhea as of yet. [Maybe that's because I also have IBS-C and, according to gastroentrologist, something called small intestine bacterial overgrowth--SIBO] I spoke to a nurse at Tecfidera hotline who told me that to minimize side effects to take the pill with 'fat'--nuts, whole fat yogurt, cheese. I do take the drug with food, and it says in info I have that doing so could lessen side effects.
Jumper wrote:I find it hard to believe anyone in the medical industry would tell an MS patient to just go off the meds...
Perhaps my phrasing was a bit off. I was counseled about the side effects, told to stop taking the meds for two weeks to flush out my bodies then start up again to figure out if it was indeed the meds I reacted to and even at a 1/4 dose of 1 pill before bed I was in extreme stomach pain, so much so, that it woke me from a dead sleep. So, the advice I was given was after talking to the doc, the nurses, the pharmacy and the nurse from the drug company - it was not a simple, oh well, just quit! Sorry if I gave that impression but I thought it was perhaps understood that it was not just a flip decision on the part of the people in my MS clinic. Believe me, I wanted this drug to work and endured for as long as I could and sought out answers from everyone who said "call with any questions".
I am sure you were not questioning the validity of my post or my experience with this drug or maybe you were! Believe me , it is an experience I hope never to endure again. It was not for me and I usually tolerate medication really well so this really surprised me.
KDGO wrote:Fifer44 where are you located that your MS center is not offering this as a 1st line med? I am in Boston ....home of Biogen and am curious if your center is farther away.
I am in Manitoba, Canada. The nurse as my clinic just said it was no longer offered as 1st line and did not shed any light on why they made the change but that was a message coming out of the US. Sorry I can't add more as she didn't tell me more. I just found it interested given I see posts here from newly diagnosed people being offer Tecfidera right away.
Myself, I have moved on to copaxone and have no side effects to speak off other than the odd tiny bruise and stinging feeling right after the injection that does not last long at all. But in all, I am happy with my treatment for now and doing well again.
I'm in New Brunswick, Canada and my MS resource nurse also said it was not offered as a first line anymore but she did not know why. My neuro, however, did perscribe it to me and it is the first MS medication I've ever been on. I think though that my neuro perscribed it to be as I've gone 5 years without any treatment as I would not do the needles.
