Side effects

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

Re: Side effects

Postby Ladymac » Tue Jul 16, 2013 5:47 am

Hi vynderma,

Sounds about right, the 2 times I had the flushing I saw in the mirror, but that was it.

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
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Re: Side effects

Postby Cchday » Wed Jul 17, 2013 5:26 am

Hi

I started Tecfidera two weeks ago and a few days ago I had an exacerbation, which I have not had one since 2009. I have been very nauseated and servers stomach problems along with hot flashes.
I read that several other people on this sight had exacerbations while taking Tecfidera . Did you stop the medication? Would like to know how you proceeded.
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Re: Side effects

Postby Ladymac » Wed Jul 17, 2013 9:10 am

Hi Cchday,

Sorry you aren't feeling well.

First, please read my blog on the Diet and timing of when you take your medicine suggestion while on Tecfidera. I am not a doctor, I have RRMS and like you am on Tecfidera. Hundreds of people have contacted me with enormous relief following this simple diet plan while taking Tecfidera.

It is on this site: tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html

You will see others that say that within 2 days it was like night and day. I hope you will find it helpful. It is worth a shot.

Exacerbations: There is nothing that I have been able to find that this medication causes an exacerbation. I think that in some cases people were going to have one anyways. What I can tell you is the research of the people on Tecfidera have shown incredible positive results in not only decrease in number of exacerbations but also the severity compared to all other meds. We also see many people like myself (on month #3) who are having HUGE improvements in our quality of life. All MEDS have some side effects. This medication has the least, believe me I have been on most.

Exacerbations are caterogorized as a new symptom or a worsening of an existing symptom over a period of time (I don't know the "official" but usually 24 - 48 hours is when I know I am in trouble). Pseudo Exacerbations are when new symptoms or worsening of existing symptoms happen when there is a CAUSE like being over heated, exhausted, dehydrated that when the person resolves the environment by for example going inside airconditioning, cooling down, re-hyrdrating, resting, that the symptoms resolve. This is regardless of any medication for MS. It is part of MS.

Out of the millions of people going on any new medication, and websites, generally only a small percentage report issues and then we mostly don't hear if they resolve. We have to take what we read in context and we don't really know what else is going on with anyone. For instance, if they also have other health issues like diabetes, blood pressure issues, kidney problems, etc. I have a humorous (my attempt) blog about the fact that "Not Everything is..." Also on this site: tecfidera-bg-12-dimethyl-fumarate-f52/topic22419.html

Please feel free to PM me, I can be supportive and only share in your experience and mine.

Hope you find these posts helpful.

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Side effects

Postby Cchday » Thu Jul 18, 2013 9:33 am

Thanks, I cannot eat eggs or sausage so Jimmy Dean won't work for me. I did try turkey bacon on toast with cheese and my doctor said to take two pepto tablets with a one Pepcid ac before I take Tecfidera .
So I ate breakfast took the pepto Bismol and my other meds waited an hour took Tecfidera. Waiting to see how this goes and hoping it works.
Thanks again for all your advice.
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Re: Side effects

Postby Ladymac » Sun Jul 21, 2013 9:54 am

Cchday,

How are you feeling? Any better? There are egg subsitutes. Pancakes, Waffles, french toast are working for me too, omlettes, and many more creative ways to get the protein, fat, carbs, absorption.

We are all trying to get creative. Anything else working for you that you can share?

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Side effects

Postby Jspinnerlamar » Wed Jul 24, 2013 10:54 am

I've been on it for 14 days. Got bad hives first week twice after getting sweaty at physical therapy. When stepped up dose the nausea and diarrhea hit . Am now in detective mode trying to see what makes it tolerable...tums, pepto, eat ? Don't eat? When? With or without other Meds?

Seems like waves of stomach problems shakiness etc hit two hours after taking and last 2 to 4 hours min. Pepto seems to expedite diarrhea recovery but not prevent it. Eating fruit drinking fluids makes it worse. Good news ... Bread and in and out cheeseburger was consumed
Two hours before nite dose and NO PROBLEM!!!

Does maker say we have to wait a month for side effects to subside? Or how long?
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Re: Side effects

Postby candycoffey » Wed Jul 24, 2013 12:15 pm

Jspinnerlamar wrote:I've been on it for 14 days. Got bad hives first week twice after getting sweaty at physical therapy. When stepped up dose the nausea and diarrhea hit . Am now in detective mode trying to see what makes it tolerable...tums, pepto, eat ? Don't eat? When? With or without other Meds?

Seems like waves of stomach problems shakiness etc hit two hours after taking and last 2 to 4 hours min. Pepto seems to expedite diarrhea recovery but not prevent it. Eating fruit drinking fluids makes it worse. Good news ... Bread and in and out cheeseburger was consumed
Two hours before nite dose and NO PROBLEM!!!

Does maker say we have to wait a month for side effects to subside? Or how long?



It was the same for me, pretty much smooth sailing until about the middle of week two. I was absolutely miserable and wondering if I'd be able to continue it then I found the topic "Tecfidera how to minimize or eliminate side effects". I would definitely read that. I have found Imodium multi symptom to be more effective than pepto, definitely eat and try taking aspirin. I take my other meds at other times and I'm starting a food journal because I am noticing I can't tolerate certain foods now :( Milkshakes make me sick now and carbonated drinks really make my stomach hurt. I'm finishing week four a doing so much better! Best of luck to you!
RRMS Feb 2011
Tecfidera start June 2013
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Re: Side effects

Postby atlchik » Mon Jul 29, 2013 4:16 pm

I've been on Tec for about 8 weeks now, and I had a pretty bumpy start with severe hives and welts all over my arms, neck and chest after the second dose @120mg. Pretty scary but Bendaryl worked like a charm. My neuro kept me on the 120mg dose, only once a day plus aspirin 30 min before. I also took the pill with breakfast and never had any GI issues. In the second week I increased to twice a day, still at 120mg, and stopped the aspirin. I never had another bout of hives, just some mild flushing. I've now been on the 240mg dose for 5 weeks and the flushing is my only side effect. It hits like clockwork 2 hours after I take the pill and lasts for 30 minutes. Nothing too bad, just some redness and heat on my face, chest and arms. I am fanatic about taking my first dose with breakfast (oatmeal for me), and second dose with dinner. I think it has helped with the possible GI side effects, but I'm not willing to try taking it without food to test out that theory!

I won't have MRIs until September so I don't know how effective it has been, other than no relapses since I started. Copaxone didnt work for me, and I had subq scarring setting in after 2 years of Rebif injections, so I'm crossing my fingers that Tecfidera is the answer for me.
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Re: Side effects

Postby Omego2K » Tue Jul 30, 2013 7:54 am

I'm on my second week and started the 240 dose on Saturday. On my first dose of 240 I felt like my body was on fire about 4 hours after taking it and coincidently(or not?) right after I ate. Today I'm having my second weird reaction which is dizziness and prickliness on my arms and face. Yesterday I had a huge headache which may be related.
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Re: Side effects

Postby Ladymac » Tue Jul 30, 2013 12:15 pm

Greetings Omego2K,

Please see my Post on this web site that you may find helpful regarding diet and timing in taking Tecfidera tips that are helping many of us. tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html

Hope you feel better soon,

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Side effects

Postby thseattle » Thu Aug 01, 2013 11:04 am

Hi - I just received my first delivery of Tecfidera. In the 20 years since being diagnosed with MS I have never taken any medication for it. Managed it my own until now. So I'm a little nervous about starting.

I've read about the side-effects so I'm prepared for that. But not sure what else to expect in terms of feeling better...just want to set my expectation so I'm not disappointed and feel like stopping it.

What changes will I feel? FATIGUE is my main issue and throw in some cognitive stuff and now some arm pain.
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Re: Side effects

Postby Jspinnerlamar » Thu Aug 01, 2013 1:29 pm

Ladymac et al your suggestions have been wonderful! initially I had the flushing and hives, then the gastric problems and then started being lazy about taking the seond dose of the day...just didn't want to make myself sick. What a mistake! Now I've been following the diet suggestions and oing much better! Here's whats working for me:
late breakfast (i'm slow to arise in am) with the Tecf and the coated aspirin. Bfast is oatmeal, banana slices, milk, with slice of cheese and roll. Or a turkey meatloaf patty with mash potatoes/spinach ( in freezer case..and milk or watery tea. Key is carb and protein--and no fruit. Crackers mid morning w little jam/pb or cottage cheese and my other meds. Lunch around 2: a sandwich with cheese, ham, bread, salad dressing. 6pm. PB and crackers, avocado or cottage cheese, or mac and cheese or rice with some raisins/nuts added for texture/flavor. 9 pm grilled chicken breast slices, hard boiled egg, hummus, Things I've learned:
Don't let your stomach get empty
Avoid citrus/juice
separate meds
take imodium if stomach upset
Make sure you don't get overheated or exercise within 1-3 hours of taking the tecf

Anyone else extra extra tired duringday? But awake at night?
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Re: Side effects

Postby atlchik » Thu Aug 01, 2013 1:45 pm

thseattle wrote:Hi - I just received my first delivery of Tecfidera. In the 20 years since being diagnosed with MS I have never taken any medication for it. Managed it my own until now. So I'm a little nervous about starting.

I've read about the side-effects so I'm prepared for that. But not sure what else to expect in terms of feeling better...just want to set my expectation so I'm not disappointed and feel like stopping it.

What changes will I feel? FATIGUE is my main issue and throw in some cognitive stuff and now some arm pain.


Fatigue was my biggest issue too, and I always attributed it to the MS. The DMDs don't really help with those symptoms, so don't expect to feel immediately better on the Tecfidera, but it should help defray any additional scarring or relapses. I took Nuvigil if the fatigue was really bad and that helped a bit ... but, recently my neuro ran my B12 level and it was seriously low (106). I started on B12 shots plus a daily oral, and I could not believe the difference. Not only is fatigue practically gone, but I'm thinking more clearly too. If you haven't done so, I would highly suggest getting a full blood panel including B12 and Vitamin D (higher risk of deficiency in both has been linked to MS).

Best of luck with starting the meds!
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Re: Side effects

Postby Ladymac » Thu Aug 01, 2013 2:06 pm

deletdd
Last edited by Ladymac on Sat Aug 03, 2013 9:59 am, edited 1 time in total.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Side effects

Postby tckarchi » Thu Aug 01, 2013 3:05 pm

I have been taking Tecfidera for two weeks now. I had virtually no side effects until this past Monday (so 11 days into taking the medication- the first 7 days were the starter dose of 120mg, and the next four were the full 240mg). I say virtually, since a couple of times I had very mild stomach pain/ nausea- similar to being pregnant. Surprisingly, this wasn't right after taking the pill, but just an hour or so before taking the next pill (so about 10- 11 hours after taking the previous dose).

On Monday, things changed, the first thing I noticed was that I was really hot (sweating and couldn't get cool- which is really unusual for me, I'm generally the one who is cold when everyone else is too warm). That evening, nausea started coming in waves and the stomach pain became like someone kicked me in the upper half of my stomach. I thought maybe I had the flu or a parasite. Tuesday morning, I was in even more pain, and I stayed home from work. The pain would go away completely at times, and then come back in force with no discernible pattern. I was exhausted and ended up taking a nap all afternoon. As I crawled into bed around 11am, I was feeling dizzy and suddenly was getting chills as well.

Wednesday went similarly to Tuesday (same pattern of stomach pain, fatigue, nausea). By then, I'd found online enough other people who were taking Tecfidera that had similar symptoms to mine that I figured it probably was side effects rather than a parasite or flu.

I called my neurologist, who recommended I take a one-day hiatus from the pills, then start back up- at half dose for one week (one pill once a day rather than twice a day). I skipped taking the Tecfidera last night and this morning, and am feeling better, though I have had a couple of bouts of pain (more intense than mere queasiness, but less than the roll-into-a-ball-and-wimper that had characterized Tuesday and Wednesday). I'll start back up this evening- I plan on taking the one 240mg pill 20 minutes after the meal (as recommended by the ActiveSource RN I spoke with today). I'll also take an Aspirin 325mg at the beginning of the meal, to see if that helps at all.

I know each person is having a little bit different of an experience with this, but hopefully reading about my experience can help someone else....
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