My Experieince with Tecfidera

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.

My Experieince with Tecfidera

Postby Bytemi » Sun Jun 09, 2013 3:07 pm

I am new to this board so I would like to start out by saying I have never been able to take maintenance drug for MS because of the sever reaction that my body has to the drugs. I watched Tecfidera through the FDA and watch in amazement when the only major side effect reported were flushing and food poisoning. I was so excited that there was finally a drug that I could take.

I started Tecfidera on May 12, 2013 (mothers day) and I was so excited and hopeful. The first week filled me with such joy. My ears got burning hot a couple times and felt uncomfortable and my skin was itchy, but nothing that I couldn’t deal with. However after the first two days a co worker suggested that I eat a yogurt and an aspirin with the medication, which was a great solution and life continued as normal.

On May 19th, I increased my dose. The aspirin and yogurt seemed to continue working other than some nausea that I started experiencing. Still I was so excited and everything was great. On May 23rd my world changed. The nausea was replaced with diarrhea and throwing up. But still it was totally manageable. I started replacing the fluids so I would not dehydrate.

On May 24th, I went to work after following my now new routine and about 2 hours later a sharp almost debilitating pain started in my intestines. The only relief I felt from the pain was after massive diarrhea which was occurring every 40 minutes. Basically, I had 10 minutes of relief and then the pain would start building again and then I had would loss a enormous about of yellow fluid (gross, I know) in the form of diarrhea. I had no choice but to push through the rest of my day at work, which was mixed with hysterical crying and being doubled over in pain. I finally went home and spent the night the same way I spent the day, pain, bathroom, pain again. I ended up taking a Zanax that night so I could sleep and get some rest.

On May 25th, my husband and I quickly realized that there was no way I could ride in Rolling Thunder like this and we cancelled our plans for Sunday. The rest of the day with spent in pain or in the bathroom and no meals were consumed.

On May 26th, I woke up took my pills, ate my yogurt and the entire process started all over, a lot more crying from pain. Around 2:00 I got up to go to the bathroom and I passed out. My husband picked me up and took me to the ER. He explained that this was an expected side effect to the Tecfidera and he was pretty sure I was just dehydrated. All of these while I curled up in a chair, crying from pain and feel disoriented. I was scared. The ER doctor (Dr. Lucky, I’m not joking) was very nice and tried to find a cause not related to the medicine. After three more trips to the bathroom and some blood test, my legs started to seize, then my back and then my arms. Now I am laying a hospital bed trying to massage spasms out in every inch of my body while doubled over in pain from my abdomen. Dr. Lucky told me that all my blood test came back normal and started me on saline (2 bags), valium, morphine and a muscle relaxer. Unfortunately, due to all the meds I continuously loss control of my bowels and made a huge mess! No I am embarrassed and scared at the same time. No a good feeling.

Dr. Lucky told my husband that I needed to eat something and sent me home with Oxycodone. I had a couple bites of rice and then I was done. The Oxy knocked me out nicely other than the continued trips to the bathroom.

On May 27th , I spent the day drugged out and in pain and visiting the bathroom. My husband said that he would stay home with me on Tuesday so we could call the Neurologist and figure out how to deal with these side effects.

On May 28th, I called the patient help line and I was told that they would not fit me in until Thursday so I spent the next 2 days in pain, drugged and visiting the bathroom. Still unable to eat.

May 30th, I visited the Neurologist finally and I failed all the standard tests to see how the MS was doing. Not surprising I had been in bed for week, unable to eat, I was drugged on Oxy and I couldn’t think. The doctor gave me Levsin to the intentional spasms an send me home more Oxy for the pain. I started taking the Levsin immediately but it did not seems to help.

May 31st, the Levsin started working and the pain was decreased enough to stop taking the Oxy. The diarrhea continued but the pain was relieved a little so I considered it progress. That night I ate my first 9 year old size meal for the first time in 8 days and I thought I was on an upswing.

The next few days other than returning to work, went about the same, limited pain and diarrhea and able to eat really small meals, which appeared to make the pain worse, so I ate what I had too, then stopped. On June 5th, I woke up with a terrible headache, which I instantly recognized as a dehydration headache. Dang it!!!! I called the infusion center as directed by my Neurologist and drove out to get fluids and return to work. When I got there I was told that I was dangerously dehydrated and I had lost 17 pounds making me 10 pounds underweight, 8 bags of saline and a bag of magnesium later, I was told that it was possible that I had a C Diff infection (results are expected tomorrow). I was told to stop taking the Tecfideria for Wednesday night and skip Thursday all together so I could eat a normal size meal, then start taking it again.

So I followed the instructions. On Thursday, June 6th, I felt off. It was like I wasn’t thinking normally, but the pain was gone for the most part, the diarrhea stopped and I ate 3 full meals. About half way through the day, a new pain the back of my head developed which was easily treated with Alieve. On June 7th, I took the Tecfidera again in the morning according to my new routine, the pain in my head was still there but I didn’t think much of it. About 3 hours later the debilitating pain in my abdomen returned and I was hysterically crying at work. I called the neurologist office and I was told that the side effects were too sever and I was to stop the Tecfidera. What a disappointment.

June 7th, I woke up with the same pain in the back of my head, but again Alieve seemed to fix it so I tried to continue with my day. My husband and I took our 15 year old daughter to CarMax to look at cars. While we were walking through the lot, my vision went blurry and there were white lines streaking through my vision. Then the center of my right eye went white and I couldn’t see out of it at all, that is when my hand went numb and my speech got messed up and I could not form thoughts. So off to bed I went again.

Today, no pain my head or abdomen! My vision is still not right. I think I figured it out. My right eye is blurry and not seeing colors. I don’t know if this is from the Tecfidera withdrawal or if this is MS, but I’m not liking it very much.

So this is my story on Tecfidera. If you show signs of any of these please don’t wait as long as I did, that is a lot of pain to suffer through for no reason.
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Re: My Experieince with Tecfidera

Postby Ladymac » Sun Jun 09, 2013 4:37 pm

I am sooooo sorry to hear about your terrible start on the meds. I learned that it had to be a full meal with each pill and an aspirin with each.

UPDATE: After reading your post, I created a topic regarding taking Tecfidera that has minimized and eliminated my and others side effects. Please check it out and let me know if it helps you. tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html


I will be starting my 2nd month of Tecfidera Tuesday. I did experience the nausea (took Zofran under the tongue) but the full meals with the pills helped absorb and didn't get the big gastric disturbance.

Any major disturbance (illness, vomiting, diahrea, fever) can send MS into an exacerbation or a "pseudo" exacerbation.

It really stinks that we all have to walk those fine lines. Please feel better soon.

Blessings
Last edited by Ladymac on Sun Jun 16, 2013 6:06 am, edited 1 time in total.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
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Re: My Experieince with Tecfidera

Postby xpsychiatricmd » Sun Jun 09, 2013 4:40 pm

Bytemi, I am sorry for your terrible experience. What it has worked for me is the protocol as described by Ladymac.
in that, you need to eat first food that contain starch, protein and fat. She was suggested by the drug reps, a sausage egg mc muffin. I then take an enteric coated aspirin, a Zegerid for the stomach and wait 30-60 minutes and then the Tecfidera. I started lower than suggested, and so far so good. But some people may not be so lucky.
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Re: My Experieince with Tecfidera

Postby Bytemi » Sun Jun 09, 2013 5:13 pm

I was so sure, this was going to be the drug that I didn't react too. I was so hopeful. I'm tired of feeling bad. As I'm sure is the case with everyone on this board, I am a fighter and I push until I can't push any further but I am tired of pushing.
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Re: My Experieince with Tecfidera

Postby NHE » Sun Jun 09, 2013 6:32 pm

Bytemi wrote: While we were walking through the lot, my vision went blurry and there were white lines streaking through my vision. Then the center of my right eye went white and I couldn’t see out of it at all, that is when my hand went numb and my speech got messed up and I could not form thoughts.


Welcome to ThisIsMS. What you describe sounds like the symptoms of a stroke. It may be best for you to go back to the hospital ASAP.
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Re: My Experieince with Tecfidera

Postby Bytemi » Mon Jun 10, 2013 2:35 am

No not a stroke as a general rule this is how the ms presents itself.
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Re: My Experieince with Tecfidera

Postby NHE » Tue Jun 11, 2013 3:31 am

Bytemi wrote:No not a stroke as a general rule this is how the ms presents itself.


OK. It's good to hear that these symptoms weren't stroke related. I'm sorry to read that Tecfidera put you through such an ordeal. I encourage you to file an adverse event report with the FDA.

http://www.fda.gov/Drugs/GuidanceCompli ... efault.htm
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Re: My Experieince with Tecfidera

Postby Ladymac » Tue Jun 11, 2013 10:38 am

NHE wrote:
Bytemi wrote:No not a stroke as a general rule this is how the ms presents itself.


OK. It's good to hear that these symptoms weren't stroke related. I'm sorry to read that Tecfidera put you through such an ordeal. I encourage you to file an adverse event report with the FDA.

http://www.fda.gov/Drugs/GuidanceCompli ... efault.htm



Sound Advice. :-D
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
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Re: My Experieince with Tecfidera

Postby Cece » Tue Jun 18, 2013 2:53 pm

Bytemi wrote:My right eye is blurry and not seeing colors. I don’t know if this is from the Tecfidera withdrawal or if this is MS, but I’m not liking it very much.

That sounds like how my optic neuritis presented itself. Blurry vision and a difference in how red looked through my right eye compared to my left eye. What did your neurologist think? It might be an attack brought on by the dehydration etc that you went through.
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Re: My Experieince with Tecfidera

Postby hlsuderlund » Tue Jul 09, 2013 9:50 am

Are you still recovering from the tecfidera side effects? How long did you have abdominal symptoms after stopping the drug?
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Re: My Experieince with Tecfidera

Postby Bytemi » Tue Jul 09, 2013 11:21 am

hlsuderlund wrote:Are you still recovering from the tecfidera side effects? How long did you have abdominal symptoms after stopping the drug?


The abdominal symptoms subsided with 2 days of stopping the Tec. I was off it for 2 weeks and now I have restarted it on a lower dose schedule. I just started my third week and I am doing OK so far.
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Re: My Experieince with Tecfidera

Postby Ash3 » Tue Jul 09, 2013 4:53 pm

Hang in there. Every drug affects us differently. I went through every side effect and listen to what Ladymac has recommended it definitely saved me. Ash3
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Re: My Experieince with Tecfidera

Postby Ladymac » Mon Jul 22, 2013 11:46 am

Hey Ash,

Call me when you get a chance, I am signing out for the last time.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: My Experieince with Tecfidera

Postby trapper » Wed Sep 25, 2013 12:37 pm

Was very interested in your post. I, too, am new to this board. I had very similar side effects from tecfidera. After two and one half days of tecfidera, I wound up in the ER with dehydration from all the vomiting and diarrhea and with a seizure. I spent 2 night in ICU and one night on the neuro floor. I would like to know if you have reported your adverse side effect to Biogen and to the FDA. My doctor does not seem to think that the seizure would be related to tecfidera. My adverse side effects have been reported to both Biogen and the FDA. If we do not report these adverse side effects, then nothing will be done about the use of the drug.
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Re: My Experieince with Tecfidera

Postby Bytemi » Wed Sep 25, 2013 12:47 pm

My body does not react well to medications. I have filed so many FDA reports, I can't keep track any more. I did not report Biogen or FDA, if you provide me with the contact information I will do so.
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