Side effects

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

Re: Side effects

Postby GottliebJA » Sat Jun 15, 2013 7:48 pm

Hi Everyone! I am on week 3 of Tecfidera and have been feeling fine until today. I was busy getting ready for a child's birthday party at my house and forgot to have anything for breakfast except coffee. About 2 hours later, I felt so hot that I put ice on my face. Then I got lightheaded and finally vomited horrendously for about 15 minutes. Then I felt back to normal for the rest of the day. From other people's postings, it seems like this was flushing and vomiting from not eating before taking the Tecfidera. Does this sound about right to people? Tonight's dose was taken with a hamburger and a full stomach! I would do anything to continue taking oral medication and not going back to injections.
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Re: Side effects

Postby Ladymac » Sun Jun 16, 2013 5:22 am

Greetings,

Sorry you felt bad. Please read my Topic on this forum: tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html

It is a How to minimize or Eliminate Side Effects that has worked for me and many others. It is all about the diet and timing of taking Tecfidera, nothing funky, it will make all the difference in the world for you.

Blessings,
Blessings,

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

Postby joesoldlady » Mon Jun 17, 2013 11:55 am

Hello I am so thankful all of you are here to share your stories it has helped tremendously in our case. So my bf who has been diagnosed with MS for almost twenty years just started tecfidera about three weeks ago and at the start we were so happy because no SE then it hit hard and we thought must have been bad sushi but the stomach cramps and vomiting are just so bad I want him to stop taking the meds but it is his only hope all of the other meds he has had bad SE. Is thier light at the end of the tunnel if he keeps taking it? Will the SE get better in time? I have read about the diet recomendadtions and will follow those but he is so sick I hate it. It seems like his MS syptoms are also flaring up. I had him yesterday cut back to once a day and not take last night so maybe he could sleep and not be sick all night which seemed better but the anxiety in the middle of the night got the best of him. Has anyone had bad SE and they have gotten better? Thanks so much to you all!
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Re: Side effects

Postby GottliebJA » Mon Jun 17, 2013 1:00 pm

After my bad experience with flushing and vomitting on Saturday, I am following the advice of taking a coated aspirin when I wake up. An hour later, I have been eating a good breakfast including some protein and then taking the Tecfidera. No side effects since then.

Any advice on how many grams of protein would be recommended per meal? Is Greek yogurt with 14 gr. of protein work o.k. for breakfast?
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Re: Side effects

Postby Ladymac » Mon Jun 17, 2013 2:19 pm

Hi there, nope, Yogurt alone won't cut it. It is the combination of fats, proteins and carbs. Please check out my New Topic about diet and How to minimize or Eliminate the side effects on this site: tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html

The Yogurt is great, but it will be short lived for the absorption and balance.
Blessings,

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Tecfidera Started April 2013
:)
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Re: Side effects

Postby Baileygirl » Mon Jun 17, 2013 5:38 pm

I just finished day 30...I feel so bad. I have tried eating, not eating, fatty foods, protein you name it. Nothing seems to help. Several days I woke up feeling great, thinking I made it over the hump, but within an hour or two, I would get that sick feeling again. I have had all the symptoms mentions above and am ready to call it quits. I now have what feels like a ball stuck right below the breast bone and have no desire to eat. I don't think I can physically give it much longer, prefer to go back to Rebif shots 3x/wk.
What is the average time frame of getting over the sickness??
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Re: Side effects

Postby Ladymac » Tue Jun 18, 2013 5:59 am

Hi Baileygirl,

I am not a doctor, I am just like you, someone who got the short straw and have MS in my case for a long time.

Question for you, do you get indigestion, they call it GERD? That is that feeling too like you said, the ball stuck in the breast bone. When I get it bad I swear I can point with my finger to the exact spot.

Over the counter, you can get Prilosec OTC. It is a proton pump inhibitor. What does that mean....well, in our stomachs there are mechanisms that produce the acid and we need some to digest food but sometimes things go over the top. It won't hurt you, you see it on TV, I would pick up a box and try it, or better yet, your doctor can order a prescription strength so your insurance covers it and if you take it in the AM with any other pills EXCEPT the Tecfidera but also take your full strength coated enteric aspirin and then wait 1 hour and then try the Jimmy Dean breakfast sandwiches (my favorite is the croissant with egg, cheese and sausage) they are in the frozen food department, 4 to a box. They are individually wrapped. You take it out, wrap in a paper towel and put it on a plate in the microwave 1 1/2 minutes on defrost and then turn it over and give it 45 seconds on full power and then you take it out and wait one minute to cool and it is small, easy to eat in the car, or walking around the house, whatever and ok with coffee or milk (I had to stop OJ in the AM because gave me an acid stomach) and Take your Tecfidera while eating it.

Please consider that and then have a normal lunch and if you are still having that pain in the upper stomach, many of us that have GERD take our afternoon Prevacid or Prilosec an HOUR before our evening meal and then eat our evening meal with the Tecfidera and then our evening meds we take at bedtime. This seems to keep us from going into the spasms and gastric distress overload because we already have GERD anyways.

If you don't normally have an acid stomach with indigestion, reflux, aka GERD, then I would do the following:

1. Get up and take all other meds EXCEPT Tecfidera but also take the full aspirin (enteric coated).

2. One hour later either do the Jimmy Dean breakfast sandwich thing OR make 2 scrambled eggs, toast (which can be regular toast or english muffin, biscuit etc) and either bacon, sausage, turkey sausage, whatever your choice and take your Tecfidera during the meal. This includes you can have your beverage of choice, for now I would stay away from OJ or grapefruit.

3. Lunch, have a normal lunch; soup, sandwich, etc. I would be careful about any soda

4. One hour before evening meal take your full enteric coated aspirin or Tylenol. If you need crackers or something, go for it.

5. Evening meal. I would stay away from acidic but I am able to do salads, some type of meat, chicken, pork, steak with a starch (potato or rice) or one of the stir fry meals that has pasta and chicken whatever you like but take the Tecfidera during the meal.

6. Bed time go ahead and take your other meds.

The main thing is that you have to eat. Not much (I am not hungry on this either maybe it will be a weight loss product :))

One your stomach is messed up, it will take a day or two to get things in order. OK to chew TUMS good for calcium and that should help. Please give it a try to get on a specific schedule and don't deviate for 3 days and you should notice the difference.

If you have suffered from GERD and it has gotten out of control, please call your doctor and have them order you one of the Proton Pump Inhibitors (Prevacid, Prilosec etc...) prescription dose and ask them to let you go on it twice a day for now until things settle down.

My GERD is so bad that I get esophageal spasm that makes you feel like you are having a heart attack. I take Prevacid twice a day and as outlined on the schedule above. I have other MS friends on this new med that were on something once a day and their doctors increased them to twice a day and they are doing great.

I am about a month ahead of you and I have noticed in the past 2 weeks that everything was settling down and I dropped the night aspirin and as long as I eat so that I have the proper FATS, CARBS, PROTEIN and something to ABSORB the acid in my stomach with my meals I am great. As soon as I mess up and skip lunch or have a protein shake or just a yogurt at lunch I get that ball in the stomach feeling and I know I have to get something like crackers or a muffin or something to help absorb.

Good luck. Please let me know how you are doing. You can PM me if you want.

Blessings,
Blessings,

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

Postby xpsychiatricmd » Tue Jun 18, 2013 7:32 am

Hi all,
I am on my second week now. Taking 240mg. at dinner and eating a whole meal with it. Following the protocol as described here. So far, I have been very lucky with the G-I side effects. Diarrhea, only the first night! Flushing not a problem.
I just hope that the med stops my progression. I have deteriorated this year. I enrolled in the Tcelna trial earlier, but had to stop it as I saw that I was not doing well. No double blind placebo control trials for me! That meant that I had to stop Rebif for several months.
Even though I may be early secondary progressive, I still have relapses. I am using the wheelchair more. Next is consulting a nutritionist and checking with a chiropractor (CCSVI). Can't wait for the Medicare next March. Spending $2,500 a for family insurance monthly. Yet, I can't complain, at least I have insurance, (even though with a high deductible), some people have nothing.
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Re: Side effects

Postby joesoldlady » Tue Jun 18, 2013 10:34 am

I wanted to let you know my bf did much much better last night after following your recomendations for diet, he ate salmon, baked potatoe, salad and even a glass of wine and he did not puke all night yeah!!! The severe stomach pain also seemed better. He was worried about taking the coated asprin because that often upsets his stomach what excatly is the asprin for? Last night I wanted to tell him to just give up on the meds and from a non MS person that made sense to me because you are getting so sick but to him this is his last hope . We have been together for only four years and he has had MS twenty so he started to explain to me about the shots and how absolutely horrid they were he also explained that this was nothing even though to me the side effects seem horrible I guess it is far better than all of the other MS drugs that did not work. He explained the future does not look good I want to stay where I am now able to walk and such. I guess it was enlightening to me because I cant belive they torture MS sufferers give them all of this horrible meds that make poeple so sick just for the hope that maybe it will help or stop the progression but dont look for a cure. So I am happy to stand by his side and tough this techfedira out and just hope and pray that it does something! I wish everyone the best and I hope I can keep posting promising news.
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Re: Side effects

Postby Ladymac » Tue Jun 18, 2013 1:22 pm

Hi there.

The aspirin was a recommendation from the clinical trial research team, enteric coated for the aches and it thins the blood. Obviously if someone can't take aspirin, even enteric coated, maybe Tylenol? A lot of the MS meds when you first get on it like Avonex, they recommended an Aspirin with it. Eventually we can drop the pain reliever/aspirin or Tylenol when we adjust to the new med.

Please stick to the diet. It works. Also, we all need to drink water to help with all our meds flush through. A squirt of lemon with ice water is nice :smile:

They are looking for a cure. I waited for over 4 years for this drug to come out of clinical trials and be approved. It is the most promising! Not only does it reduce the number of exacerbations, but when/if we get them, they have been much smaller and this new drug has been showing some promise of how it is handling the inflammation of the brain in total!

Let's keep reading the research papers on the National MS Society Website for all the updates.

I am already feeling better.
Blessings,

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

Postby Sprink » Wed Jun 19, 2013 6:58 am

I've been on the Tecfidera about 6 weeks and the only bad reaction I had, was the first time I took it I was beet red over my face, neck and arms up to my elbows....it all cleared up within about an hour of showing up. I had not eaten in over 12 hours though (and I believe it tells you to take with food and water). Since taking with food, I have not ever had that reaction again. I think I'm actually beginning to have a few less symptoms.
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Re: Side effects

Postby 12many » Wed Jun 19, 2013 3:39 pm

Hi everyone. I'm new to the forum. I started Tecfidera almost three weeks ago and other than one day managed with the side effects okay...until today. I had to have a colonoscopy done yesterday, so I had to go through the cleansing and all (all liquid diet the day before) and woke up in the middle of the night last night burning up and extremely nauseous. All day I have felt sick and have gone between chills and heating up. I called my prescription Rep nurse and my neuro and my internist. No answers. I feel like I may have been a guinea pig testing an Ms drug with sedation drugs. I have also had severe diarrhea all day (until about an hour ago). Before the no eating, flush, sedatives, I did have some flushing, itching and bouts of spontaneous diarrhea, but nothing like today. Please be more careful than I was if you need any new procedures done. I would kick myself in the but if it weren't so sore. :?
Blessings to all.
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Re: Side effects

Postby joesoldlady » Wed Jun 19, 2013 5:20 pm

I just wanted to thank you again for providing this information I went from three days ago begging my bf to get off tecfidera because the SE were so bad to us being so hopeful about this new drug. The protien diet really helps! I just hope it stays this way.
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Re: Side effects

Postby shaelee » Wed Jun 19, 2013 7:40 pm

I was diagnosed RRMS in 2011 and started treatment in 2012. Today is the end of my second week on Tecfidera. I switched after using Avonex for the past year and dealing with the unrelenting flu like symptoms every week. I suffered intense abdominal pain and bloating for the past five days until I stumbled across this site! The information that ladymac posted is good. My neuro only suggested to take Tums with the Tecfidera, it helped a little, but not enough. The aspirin taken about an hour before the Tecfidera worked like a charm. I've tried it twice today now and the stomach pain yesterday that felt like I had been punched hard in the stomach is just an achy memory. I am also chewing two Tums and taking my Amantadine with the 325mg EC aspirin, about an hour before the Tecfidera. I also eat just before taking it. I feel so hopeful about this drug and I think I'll be able to stick with it thanks to the advice posted here :)
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Re: Side effects

Postby Ladymac » Fri Jun 21, 2013 3:50 am

AWESOME!!!

I AM soooo glad you are feeling better.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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