Tecfidera Recurrent Side-effects (after initial side-effects

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.
TheBeckster
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Tecfidera Recurrent Side-effects (after initial side-effects

Post by TheBeckster » 3 years ago

I have been on Tecfidera for a little over 2 years. I had the typical GI side-effects for 2 months when I first started the drug, but for the most part (except for 5 days of nausea 6 months into it) it has been smooth rolling until recently. Recently I had three weeks with nausea and a bloated and hard upper stomach. That went away but now I have been having diarrhea for one week. During the last month I have played around with taking only one Tecfidera pill per day. It helped lessen the nausea and it also seems to slow down the diarrhea. Has anyone else experienced any Tecfidera side effects after the initial side-effects abated? My MS Physician Assistant said she doesn't have any other patients that have complained of this. I called Biogen and talked to a Nurse Educator for Tecfidera and she took my history and said it would be passed on to Biogen and the FDA, but when I asked if others have reported this, she would only say nothing is published regarding this. If you are taking Tecfidera and have experienced recurrent side-effects after the initial side-effects in the first year abated, I would love to hear from you.

Update 12/20/15:
Well the diarrhea continued for 3 months and got worse. I saw a GI doctor and had a colonoscopy with biopsy; it turns out I have lymphocytic colitis (http://www.niddk.nih.gov/health-informa ... facts.aspx). This explains the diarrhea but I do not know what caused the lymphocytic colitis. I am a woman over 50 with an autoimmune disease so this puts me at risk though I don't take any of the typical medications that can cause this. It is unlikely Tecfidera contributed to me getting lymphocytic colitis.
Last edited by TheBeckster 3 years ago, edited 1 time in total.

Bluebird99
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by Bluebird99 » 3 years ago

Starting it in a few weeks and you'll be the first to know

BadKittyCat
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by BadKittyCat » 3 years ago

After about a year on Tecfidera, I will still feel a little sick if I don't eat enough. Mostly it is no longer a big deal... I suspect you are not the only one; it is just a mild annoyance compared to a relapse...

mmpetunia
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by mmpetunia » 3 years ago

I don't get stomach upset too much. Sometimes if I haven't had enough to eat I will get some lower GI stuff. The one thing that has stuck around for me is the flushing. The first dose of Tec was AWFUL flushing and since then it has gotten better. It seemed to get better to a point and now if I don't have enough to eat I will get the flushing. Especially if I have forgotten a dose or two. It's like my body has to adjust to it all over again after even a short lapse in taking the medication. A few times I have been awakened in the middle of the night because I am flushing. I end up taking advil to relieve the symptoms so I can go back to sleep.
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
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GatorGirl
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by GatorGirl » 3 years ago

I have been on Tecfidera about two years -- and I still get have GI troubles. They are fairly intermittent. I can go a month just fine then out of the blue get socked with terrible stomach pain and nausea. It feels like I've been punched in the gut or gotten the wind knocked out of me. I can kind of feel it coming on when I get burpy and my abdomen gets a bit distended and hard. Then comes the vomiting or dry heaves depending on when in the day it starts.

The side effects don't seem to be related to how, what or when I eat. They seem to last about two hours but I have somewhat of a hangover for the rest of the day. It doesn't matter if I sit, stand, lay -- nothing helps me get comfortable.

This only happens once a month or so but when it does it's pretty bad. A few hours of yuck once a month is tolerable but still pretty miserable. This beats the heck out of the other drugs I've been on.

My doctor seems to be surprised that I'm having these side effects now. She offers to write a me a nausea prescription but I'm hesitant to add more to my already crowded chemical cocktail -- especially since this is relatively infrequent.

Meh.

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NHE
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by NHE » 3 years ago

GatorGirl wrote:My doctor seems to be surprised that I'm having these side effects now. She offers to write a me a nausea prescription but I'm hesitant to add more to my already crowded chemical cocktail -- especially since this is relatively infrequent.
You could try asking for just a sample dose pack to see if they help. You may not need them every day, but only on those occasions you've described where you can feel the trouble beginning.

DiannaG
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by DiannaG » 3 years ago

I have been on tecfidera for i think a year and a half. My memory fails me but know that I am experiencing flushing pretty severe. Along with itching and just plain wanting to rip my skin off. It seems like the side affects are becoming more and more frequent. When I started the treatment I had very little of these annoying side effects, now I am getting them every few weeks. I have however not had a relapse in 8 months and was previously having three a year. So that's what keeps me going. Sounds like this treatment has similarity in the disease itself being just a tad different for each of us.
Thank you for sharing your experiences. It's nice to hear from people that know as people in my world don't. I wish you all well!
Dianna

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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by NHE » 3 years ago

DiannaG wrote:I have been on tecfidera for i think a year and a half. My memory fails me but know that I am experiencing flushing pretty severe. Along with itching and just plain wanting to rip my skin off. It seems like the side affects are becoming more and more frequent. When I started the treatment I had very little of these annoying side effects, now I am getting them every few weeks. I have however not had a relapse in 8 months and was previously having three a year. So that's what keeps me going. Sounds like this treatment has similarity in the disease itself being just a tad different for each of us.
Thank you for sharing your experiences. It's nice to hear from people that know as people in my world don't. I wish you all well!
Biogen suggests that taking aspirin with Tecfidera may help reduce the flushing side effects. http://www.tecfidera.com/ Have you tried this yet?

Dangermouse
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by Dangermouse » 3 years ago

Hi everyone, I have been on Tecfidera for exactly a year today! Side effects flushing (bright red, itchy, burning for two hours about an hour after each dose), stomach pain, diarrhoea, etc. they started with the first dose and continued for the first ten months. Slightly tailing off. It was great for the diet I lost ten kilos :smile:. I was really happy when they finally seemed to have stopped....however in the last two weeks it has been like starting all over again, intense red itching, doubled up with cramps (both hard when I'm trying to interact with co-workers), diarrhoea etc. I have changed nothing else at all. Just happy to find I'm not the only one. Also makes me think...woo hoo Happy New Year :?

mandymathews
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by mandymathews » 3 years ago

Hello! My name is Mandy and I started Tecfidera in July 2014. I have been on every other medication for MS in the last 6 years with this disease with no relief of relapses. When I first started Tec, I also had the horrible gut wrenching stomach pains, vomiting, and diarrhea the first month until I found research on it and the research saying to go on Singulair with the Tecfidera. All stomach problems then stopped immediately. Well 16 months in, I all of a sudden started reacting again, but this time with bad flushing, hives, and itching. About two months ago i started to hate this medication. I like the description above of wanting to rip your skin off. Sounds exactly right. I plan to call the Tec nurse and ask why since nobody else has found out why. I am miserable! I am also, now this last week, to be starting my first relapse since I started Tec. Any insight or others would be great, yet horrible, to hear!

Mandy

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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by mandymathews » 3 years ago

TheBeckster wrote:
Update 12/20/15:
Well the diarrhea continued for 3 months and got worse. I saw a GI doctor and had a colonoscopy with biopsy; it turns out I have lymphocytic colitis (http://www.niddk.nih.gov/health-informa ... facts.aspx). This explains the diarrhea but I do not know what caused the lymphocytic colitis. I am a woman over 50 with an autoimmune disease so this puts me at risk though I don't take any of the typical medications that can cause this. It is unlikely Tecfidera contributed to me getting lymphocytic colitis.
Hi there!

I'm not sure if this applies, but Tecfidera has studies out with the FDA of several patients having all stages of lymphocytes. I copied that part of the article for you to see and research more into.

"More seriously, grade 2 leukopenia or grade 3-4 lymphopenia was detected at month six in 25%."

I hope this sheds a light on things for you!

Mandy

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lyndacarol
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by lyndacarol » 3 years ago

mandymathews wrote:
TheBeckster wrote:
Update 12/20/15:
Well the diarrhea continued for 3 months and got worse. I saw a GI doctor and had a colonoscopy with biopsy; it turns out I have lymphocytic colitis (http://www.niddk.nih.gov/health-informa ... facts.aspx). This explains the diarrhea but I do not know what caused the lymphocytic colitis. I am a woman over 50 with an autoimmune disease so this puts me at risk though I don't take any of the typical medications that can cause this. It is unlikely Tecfidera contributed to me getting lymphocytic colitis.
Hi there!

I'm not sure if this applies, but Tecfidera has studies out with the FDA of several patients having all stages of lymphocytes. I copied that part of the article for you to see and research more into.

"More seriously, grade 2 leukopenia or grade 3-4 lymphopenia was detected at month six in 25%."

I hope this sheds a light on things for you!

Mandy
I highly recommend this 52-minute documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)

You might find the following interesting. In Part 4: The Story of Torri ( she describes @47:57 her visit to a gastro-neurologist who had diagnosed her with lymphocytic colitis, "which is a little sister to Crohn's disease."

TheBeckster
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by TheBeckster » 3 years ago

mandymathews wrote:
TheBeckster wrote:
Update 12/20/15:
Well the diarrhea continued for 3 months and got worse. I saw a GI doctor and had a colonoscopy with biopsy; it turns out I have lymphocytic colitis (http://www.niddk.nih.gov/health-informa ... facts.aspx). This explains the diarrhea but I do not know what caused the lymphocytic colitis. I am a woman over 50 with an autoimmune disease so this puts me at risk though I don't take any of the typical medications that can cause this. It is unlikely Tecfidera contributed to me getting lymphocytic colitis.
Hi there!

I'm not sure if this applies, but Tecfidera has studies out with the FDA of several patients having all stages of lymphocytes. I copied that part of the article for you to see and research more into.

"More seriously, grade 2 leukopenia or grade 3-4 lymphopenia was detected at month six in 25%."

I hope this sheds a light on things for you!

Mandy
Mandy - Thanks for your comment. Leukopenia (abnormally low level of white blood cells) and lymphopenia (abnormally low level of lymphocytes) are both different than lymphocytic colitis (lining of colon has increased numbers of white blood cells and lymphocytes). While I haven't seen anything stating a connection between Tecfidera and lymphocytic colitis, who knows what time will discover; all three do involve either white blood cells or lymphocytes.

TheBeckster
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by TheBeckster » 3 years ago

lyndacarol wrote:
mandymathews wrote:
TheBeckster wrote:
Update 12/20/15:
Well the diarrhea continued for 3 months and got worse. I saw a GI doctor and had a colonoscopy with biopsy; it turns out I have lymphocytic colitis (http://www.niddk.nih.gov/health-informa ... facts.aspx). This explains the diarrhea but I do not know what caused the lymphocytic colitis. I am a woman over 50 with an autoimmune disease so this puts me at risk though I don't take any of the typical medications that can cause this. It is unlikely Tecfidera contributed to me getting lymphocytic colitis.
Hi there!

I'm not sure if this applies, but Tecfidera has studies out with the FDA of several patients having all stages of lymphocytes. I copied that part of the article for you to see and research more into.

"More seriously, grade 2 leukopenia or grade 3-4 lymphopenia was detected at month six in 25%."

I hope this sheds a light on things for you!

Mandy
I highly recommend this 52-minute documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)

You might find the following interesting. In Part 4: The Story of Torri ( she describes @47:57 her visit to a gastro-neurologist who had diagnosed her with lymphocytic colitis, "which is a little sister to Crohn's disease."
Thanks for your comments. My B12 level was tested post-MS diagnosis and I was a higher than normal (1204, normal range is 207 - 974 pg/mL); Torri's was extremely low at 74.

swalsh
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Re: Tecfidera Recurrent Side-effects (after initial side-eff

Post by swalsh » 3 years ago

What an interesting thread to find. I've been on Tecfidera for a little over 2 years. I had started the medication in August while I was taking Zyrtec for allergies. When I stopped the Zyrtec in about November I started to experience the flushing/itching. Then the swelling occurred. I realized that the difference was the Zyrtec and started to take it again. The flushing was very infrequent and the swelling never happened again. In the past 2-3 months I have had significant bouts of the flushing and profusely itching. Yesterday was my 19 year anniversary of my diagnosis and as if I needed a little reminder that I still had it, I woke up bright red and my face completely swollen/distorted. I had only had this severe a reaction once in the very beginning. I'm now waiting on my doctor to call me back because it seems the Zyrtec is no longer cutting it and the swelling is a little too freaky for me. I'm wondering if anyone has switched back to another medication because of Tecfidera side effects. Besides being completely over the needles I did really well on Avonex and am trying to decide if I should go back.

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