Scared to start Tecfidera...

[kak3893]

I've been on Copaxone for almost 3 years now and it has worked wonders for me. My neuro prescribed Tecfidera, and of course I was all for it because it would mean no more injections. But after reading a lot of people's personal experiences with Tec, I am afraid to start tomorrow morning. I have a history of GI issues and have Rosacea and fair skin, so I am very worried about the stomach and flushing side effects. Is it worth it to get off of Copaxone to take a chance on the pill? Anyone not had any symptoms with Tec at all?

[Marco]

Unfortunately, there is no way of knowing how YOUR body will respond to Tecfidera until you start taking it. I had side effects for weeks after starting Tecfidera, but not anymore.

I was in the kitchen last night and saw my red sharps container and was so thankful that I may never have to inject myself again. There is nothing wrong with Copaxone, but there is something just better about not jabbing myself with needles 1 to 7 times per week.

If you decide to take Tecfidera I hope you do well on it. For me, the biggest thing was to premedicate and to eat prior to taking the medicine.

[tracibk]

I don't want to jinx myself but I have done very well on Tecfidera. After my first pill I got a flushing and a full body rash but that was it. I got itchy arms one night, my nose runs a little and my stomach was gurgling for a couple of days after starting the 240 (which has stopped). I took Rebif for years which left me with hard lumps under my skin on my stomach. Plus, the Rebif stopped working and I had NO desire to start Copaxone if I could take pills. It is a hard choice though if Copaxone is working for you and you don't mind the shots. I also make sure I don't take it on an empty stomach. Best of luck!!!

[TLC_31]

If Copaxone has “worked wonders,” why would the neuro prescribe something else? Does the potential upside of switching really outweigh the potential downside, even if the downside is negligible? (And there are great people like those in this thread to help you endure any downside.)

I think the negatives of Tecfidera (or any drug) tend to be amplified in a forum such as this. Nevertheless, there is no free ride. I learned that from my 19-day experiment with Gilenya, which works fine for many others but didn’t for me. I changed back to Avonex, which I hate because of the needles, even though it has served me well. Similarly, you can always change back to Copaxone, so I don’t think you should be “afraid to start," but do you really need to switch in the first place?

[Alicious]

I've been on Copaxone for almost 3 years now and it has worked wonders for me. My neuro prescribed Tecfidera, and of course I was all for it because it would mean no more injections. But after reading a lot of people's personal experiences with Tec, I am afraid to start tomorrow morning. I have a history of GI issues and have Rosacea and fair skin, so I am very worried about the stomach and flushing side effects. Is it worth it to get off of Copaxone to take a chance on the pill? Anyone not had any symptoms with Tec at all?

I don't have rosacea, but I am incredibly pale and have sensitive skin. I've been on Tecfidera for about a month, and I "flush" maybe one in 5 times I take it. The flushing is like an intense blush, lasts a couple of minutes, then nothing. For me it's no big deal.

I also have a history of GI issues on various meds (I was even nauseated on Copaxone, which is a very small group of people), and the diarrhea on Aubagio was just awful. On Tecfidera, nothing. I did have some burning sensations in my stomach once I hit full dose, so I take half a Zantac with my pill and now I don't notice a thing. So, minimal flushing and no other side effects. So far, so good!

You and your doctors are the only ones who can decide what is right for you, but I vote you give it a chance, If you hate it, you can always switch back.

[Jrtkahle]

Tecfidera switching

If Copaxone is working for you, I wouldn't switch. I was doing well on Rebif but wanted to try a pill, had bad flushing and constant nausea, but worst of all, I had a flareup, which I never had on Rebif in 8 years. Just had to do a 5 day course of IV steroids. Now I am back on Rebif, so sorry I ever left!

[Torn]

The tecfidera is not without side effect and I've had a lot of bad ones. However, for me I want to keep trying. If your nuero thinks its time to switch it can't hurt to try. There are so many other drugs I'd be afraid to try.

[bree2013]

I've been on Copaxone for almost 3 years now and it has worked wonders for me. My neuro prescribed Tecfidera, and of course I was all for it because it would mean no more injections. But after reading a lot of people's personal experiences with Tec, I am afraid to start tomorrow morning. I have a history of GI issues and have Rosacea and fair skin, so I am very worried about the stomach and flushing side effects. Is it worth it to get off of Copaxone to take a chance on the pill? Anyone not had any symptoms with Tec at all?

This is a tough decision. Discussing the pros/cons with your neurologist is your best bet.

I understand wanting an oral over injections.

I just started the tecfidera last night -- so (3) 120mg and so far so good....KNOCK ON WOOD!

Still too early to tell if I'll slide by without any major side affects.

If you decide to try tecfidera and it doesn't work out, you can go back to copaxone.

Hope your decision serves you well.

[talulah]

I am wondering if we post our negatives more than our positives? I too just started Tec today but I put it off for a month because I read people's posts about the side effects and was scared.

I was on Rebif for 3 years and loved the 8 months I was off it. The relapses started up and the solumedrol seemed to do less and less with each relapse.

So today I begin a new chapter with my MS (multiple symptom hypochondria I like to call it). I hope I remember to post the positives so others aren't scared off!

[Michelle883]

I recently switched from copaxone to tecfidera. I " failed" the copaxone so my neuro put me on tecfidera. I was super excited because I had heard such wonderful things about tecfidera. Plus it was a relief not to have to take shots everyday. Aside from some mild flushing, my first week on tecfidera was wonderful. Then I went to the 240 mg dose. I have never been so sick in my life! I had severe GI pain, vomiting, diarrhea. My neuro told me to stop taking it immediately, so I did. I got so severely dehydrated that I ended up in the ER twice getting IV fluids. Neither phenergan nor zofran worked for the vomiting and nausea. Finally after 6 days of this I was able to drink water and actually keep it down. Has anyone else had side effects this bad?

[dkakavas]

I too had horrible side effects with tecfidera that landed me in the ER as well. Some folks can tolerate this med while others can not... I am back on Copaxone again with no complaints. I didn't need my MS medicine being a catalyst for another relapse. Kind of defeating the purpose. Enjoy the day!

[Alicious]

Oh my goodness, that is just awful! I am so sorry you two had such awful reactions to the med.

[MSer]

I am so sorry to hear that you both ended up in the ER. It was posts like that - that made me fear taking Tec. But I started it anyway. Week three. I did everything people posted about on this web. Taking a Good probiotic every day, taking prilosec and baby aspirin in the morning, Drinking 16 ounces of water before breakfast (and dinner) then taking the Tec after I eat. I do drink a lot of water during the day to stay hydrated. I am praying I keep having a good record of no reactions. I actually am noticing I have more energy and less pain. I think some of the pain came from Rebif's achy flue like systems.

You just have to try it - do your best to pre-medicate, hydrate, and take it with food. All I can say is it is SOOOOO Nice not having to inject three times a week.

I figured for every negative reaction to the drug that you read about here on this site, there are 20+ positive reactions that are not recorded here. Maybe more.

[wheeliegirl]

I AM SCARED TO BUT GOING TO START THIS SUNDAY. ONE BABY ASPIRIN 30 MINS. BEFORE ,BENADRYL & ANTI-NAUSEA MED . ON STAND BY. I HAD A BAD ALLERGIC REACTION TO COPAXONE OF ALL THINGS A 2 YEARS BACK. LOL COULDN'T BELIEVE IT .SO NOT TAKING CHANCES .
STILL TECFIDERA IS HAS A WHOLE LOT LESS POTENTIAL SIDE EFFECT THAN THE OTHER DMDS . ITS ALWAYS A GAMBLE THEN SO IS NOT TRYING THE DMDS.
I'VE GOT A LOT OF ALLERGIES TO MEDS . . I GET THE FEAR OF TAKING A NEW ONE. WHEN I SERIOUS DOUBT I WAIT TILL I'M MENTALLY ABLE TO HANDLE TRYING A NEW MED.. JUST NOT TO LONG OF A WAIT. JUST BECAUSE YOUR NEURO . SAY THIS IS WHAT I WANT FOR YOU DOESN'T MEAN YOU ALWAYS NEED TO FOLLOW HIS WANTS. IT YOUR BODY AND YOUR CHOICE. YOU NEED TO BE COMFORTABLE WITH WHAT YOU TAKE FOR YOUR MS.
FOR ME I'LL BE I'LL PROBABLY TAKE THE ASPIRIN AND BENADRYL THEN THE TEC.. ALSO GOT IMODIUM ON HAND JUST IN CASE. PLUS TOLD EVERYONE THAT UNTIL MY BODY GETS USED TO THE STUFF DON'T COUNT ON ME TO BE GOIN NO WHERE . TRY NOT TO GET TO STRESSED OVER THIS. THERE'S TIME TO DECIDE .

[Landshark]

Ive been on Tecfidera since late April and experienced very mild side effects. flushing occasionally (3-4x total), mild runny nose. Most of the time I have no side effects. It's been extremely manageable. In case you are looking to hear something positive. I don't pre-medicate anymore, I do eat before meds- but nothing specific. I've been at the full dose since week 2. I have not struggled with this medication. No changes in my symptoms. I'll be interested to see how my yearly MRI looks-which won't be until March. It's not guaranteed that you will have awful side effects. I was really scared about that as well- and it hasn't happened.