Terrible Time on Tecfidera

[becstarr]

Hello to all, I was wondering if anyone else experienced severe side effects on Tecfidera. I have been on this medication for six weeks, suffered with severe GI events to the point of tears, and my bottom teeth on my left side started aching for some reason.

Finally gave in and called the Nurses to see if I was able to stop taking this medication, I physically couldn't take anymore. I had lost over 10kgs and spend most my days visiting the bathroom.

I was instructed to get a new script for the lower dose which I'm now on, and given an appointment to see the Neurologist tomorrow. I don't have severe side effects on the lower dose, but really don't want to continue down this Tecfidera road, I have had enough.

I'm hoping I will be able to try something different as there is no way I'm willing to try the higher dose again. I really feel like my body was rejecting this drug.

I did my best to try and tolerate the side effects from peanut butter, apple sauce, nausea medication, aspirin, Zantac, and another pill to line my stomach, but nothing helped.

I was diagnosed 24/06/14 so am not to familiar with other medication available. Any advice would be greatly appreciated.

Thank you xo

[jersey4ever]

Don't Give Up!

Don't give up - go back to the lower dose for a few weeks and give your body more time to adjust. I also had pretty severe stomach pain - I remember just being in tears as my husband was close to calling 911... then it just passed - I just got over it - after a few weeks of that.

Tec is the only drug that has worked for me. I had back to back MRI's - 6 months apart - while on Copaxone with enhancing lesions on both... I just had my first MRI while on Tec and it was "All Clear" - this is the best drug on the market right now with the excpetion of Tysabri - and that drug has severe risks.

My neuro has said they are starting to lean toward doing at least 2 weeks at the lower dose to help the body adjust.

[Tawanda]

Hello to all, I was wondering if anyone else experienced severe side effects on Tecfidera. I have been on this medication for six weeks, suffered with severe GI events to the point of tears, and my bottom teeth on my left side started aching for some reason.

Finally gave in and called the Nurses to see if I was able to stop taking this medication, I physically couldn't take anymore. I had lost over 10kgs and spend most my days visiting the bathroom.

I was instructed to get a new script for the lower dose which I'm now on, and given an appointment to see the Neurologist tomorrow. I don't have severe side effects on the lower dose, but really don't want to continue down this Tecfidera road, I have had enough.

I'm hoping I will be able to try something different as there is no way I'm willing to try the higher dose again. I really feel like my body was rejecting this drug.

I did my best to try and tolerate the side effects from peanut butter, apple sauce, nausea medication, aspirin, Zantac, and another pill to line my stomach, but nothing helped.

I was diagnosed 24/06/14 so am not to familiar with other medication available. Any advice would be greatly appreciated.

Thank you xo

I am just curious if a lower dose has any value. If it did, why do we step it up? I had very few problems at the lower dose...but once I upped it, it was game over!

[Marco]

Only you can decide if staying on Tecfidera makes sense or not. I tend to be sensitive to medications and have failed a number of them. I spent a whole month at the 120 mg dose before going to the 240 mg maintenance dose. Since then, I have been able to tolerate and do well on this medication. All of our drugs have a number of patient drop outs. This happened even during the trials. The start up periods, especially for Tecfidera, can be rough. It's still a TON easier to take than the injections and generally performs significantly better. We are starting to get 1-year information results for Tecfidera patients. They are finding that for patients who start on Tecfidera (no prior MS medication) they are seeing even higher benefits for patients. If the numbers are true, Tecfidera may be roughly twice as effective than Avonex, Rebif, Plegridy, Betaseron, Extavia and Aubagio.


What doctors do not want you to do is have a rough time with one, jump to another too soon and then quit that one too. Some patients go through 3 or 4 medications in a year and that's just too much. Your body has to have time to adjust to the medications for the side effects to go down. Several MSWorld members have spent years trying medication after medication until they finally find one that works. The process is frustrating, but being on a medication has long-term benefits making the pains generally worth it. Again, only you can decide what is best for you. I just hope your neurologist and you can find the right medicine for you. Please keep us informed.

[rsinger]

tecfidera

Sorry to hear you are having such a tough time. I personally never had any trouble with GI issues. But I do take benefiber and a probiotic daily. I used these products before the tecfidera so I'm not sure if they are the reason I do not have any stomach issues. I do try to consume some fat at breakfast and dinner but generally speaking my diet is fairly low in fat.

My only problem is skin issues. I think tecfidera may dry the skin out and I have sun damaged skin from too many years on the beach. So my skin may be more sensitive than most.

I tried Copaxone in 2012 but had unexplained elevation of liver enzymes.
In 2013 tried gilenya but had shingles.
Now I'm hoping to stay with tecfidera. It's true as Marco points out often we do try several of these medications.

We have to keep in mind that these are serious medications for a serious disease. None of these will be an easy ride.

Hope you will improve.
Keep us posted.

[becstarr]

Thank you for your replies

Yesterday I was taken off Tecfidera. I tried the lower dose and became very sick again. I wanted it to work so badly but this wasn't the case. I have heard great things about this drug but everyone is different, my body just wasn't going to tolerate it.

I had an ECG, blood tests and urine test yesterday to see what's going on and to see if my body is doing ok to eventually try another drug.

I am very greatful my Neurologist understood what I had been going through these last six weeks, my body was severely stressed out. I have spent most of my days in the bathroom sick or curled up in a little ball in bed hoping it would all end.

Today I'm looking forward to a nice breakfast as this will be the first day without Tecfidera I'm hoping it will stay down, all up I have lost a total of 12 kg.

Before focusing on any new drug I'm going to focus on replenishing my body.

Thank you for all your replies and encouragement, I wish my experience on this drug ended in a more positive one. Just remember our bodies are all very different and just because I have had a horrible time, your time maybe a very pleasant one and one of the best choices you have made. Xo