Side effects

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

Re: Side effects

Postby xpsychiatricmd » Thu May 30, 2013 11:47 am

Received the welcome kit today! I believe that I am going through a flare-up. I am scheduled for solumedrol on Monday. Has anyone used both at the same time?.
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Re: Side effects

Postby momoffive » Thu May 30, 2013 2:30 pm

Hello everyone. I am new to this. Was just dx with ms in april. I just started tecfidera 6 days ago. I had flushing on day 2. But on day 4 I didn't feel right. I feel as if my ms symptoms are coming back. It has been a crappy year. Started off with dizziness which was bpv then I had eye and face paralysis. My eye was finally better and I wasn't dizzy anymore. I have not been able to drive either. Being a mother of 5, that is pretty hard. Also I got a virus now. It started in my head and is slowly going into my chest. I don't know if it is the virus that I feel this way or if it is the tecfidera. My symptoms are my eye is wierd again, I have slight numbness in my mouth, slight tingling in my left leg and foot and I feel a bit dizzy. I am hoping it is the virus!!!! But I have read that others had their ms symptoms after starting tecfidera. Do you think I should call the neuro? Any advice would be helpful. Thanks.
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Re: Side effects

Postby lyndacarol » Thu May 30, 2013 4:55 pm

Welcome to ThisIsMS, momoffive.

Since one cannot know the reason for your new symptoms – virus, MS, or medication – I encourage you to start with a call to your GP. Since you started tecfidera only six days ago, I would suspect that as the cause. BUT check with your doctors – maybe they will want you to take a short break from tecfidera in order to confirm it as the source of your symptoms.
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Re: Side effects

Postby CureOrBust » Thu May 30, 2013 6:22 pm

momoffive wrote:I don't know if it is the virus that I feel this way or if it is the tecfidera. My symptoms are my eye is wierd again, I have slight numbness in my mouth, slight tingling in my left leg and foot and I feel a bit dizzy. I am hoping it is the virus!!!!
Welcome. I personally find that a virus causes a relapse of my MS.
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Re: Side effects

Postby momoffive » Thu May 30, 2013 6:28 pm

Has that always been your experience? Have you had alot of viruses that caused you to relapse?
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Re: Side effects

Postby CureOrBust » Thu May 30, 2013 8:50 pm

Yes. Every cold/flu has triggered a relapse. However, not everyone experiences the same.
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Re: Side effects

Postby cattibrie » Fri May 31, 2013 9:17 am

I started Tecfidera about two weeks ago. I had the flushing and a slightly yucky stomach for about three days and then it was gone. I was super excited thinking I was done with it. But now, on day 12 and 13 my stomach hurts. I don't feel like I am going to throw up but my upper stomach feels bloated and painful. When I wake up in the morning it is going, before I take the morning pill. Does anyone else feel the same way?
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Re: Side effects

Postby KClay » Fri May 31, 2013 11:26 am

Yes. It is very random for me. My appetite has been poor since starting. I've lost 12 lbs now. Quite often I seem to be feeling fine and a small meal brings on that bloated feeling, often along with pain. I'm still going to continue longer on tecfidera, though. Right now, I prefer these side effects to those of avonex.
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Re: Side effects

Postby elysium » Fri May 31, 2013 1:11 pm

Today was my second day of the full dose. About three hours after the first dose I had the intense flushing. Because I have general redness I hadn't been sure if I was reacting by flushing. Well, when I knew boy did I know! The flushing looked like a really bad sunburn and was very splotchy throughout my hands, arms, neck, face, and even on my feet. It came with a lot of itching that I couldn't scratch because it was also burning. It kind of felt like poison ivy. It seemed to settle down after about two hours but I still feel a little residual itching/burning in random spots. This was not fun! I'm gonna stick with this med and hope that this reaction won't be the norm.
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Re: Side effects

Postby ShaunaCann » Mon Jun 03, 2013 6:42 am

After starting Tecfidera this weekend and experiencing symptoms I was happy to find this page with other peoples experiences. I am on day three of the 120mg dose and have had bad "flushing" after all but one dose. I took the first dose on Saturday after breakfast around 8:30am and it wasn't until 3:30/4:00 that it came on. All of a sudden it felt like my face and ears were on fire. I was caught of guard because I didn't think that was what was meant by flushing of the face. I got a cold cloth and kept moving it around on my face, ears, neck, arms and chest - and that helped a little. It lasted about 45 minutes then cleared up and I was fine. I did not have any stomach issues. I took another pill before bed and woke up without having the being on fire feeling. Day two I took the dose around 9:00 am and had the fire feeling again around 3:00 pm. While sleeping last night I had another episode that woke me up. It seems like the episodes aren't lasting as long but I'm wondering if it is going to get worse once I go up to the higher dose.

I was on Rebif for four years but stopped 4 to 5 months ago because I just couldn't take the shots anymore. I didn't have any of the flu like symptoms with it, it was just the pain from the shots and the site tenderness that I couldn't do.
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Re: Side effects

Postby Lawmom02 » Wed Jun 05, 2013 11:06 am

The information packet said to take it with food if your experienced upset

Speaking of which, I am at the end of my second week. No issues with either dose (face flushing for a minute or so a couple of times excepted - not a big deal) until today. Stomach pain - has anyone figured out a way to lessen this?
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Re: Side effects

Postby lyndacarol » Wed Jun 05, 2013 6:51 pm

Lawmom02 wrote:The information packet said to take it with food if your experienced upset

Speaking of which, I am at the end of my second week. No issues with either dose (face flushing for a minute or so a couple of times excepted - not a big deal) until today. Stomach pain - has anyone figured out a way to lessen this?


Face flushing seems to be common to many people; I am not taking Tecfidera so I do not have the insert that comes with the medication – I assume the flushing side effect is listed there. If stomach pain is listed as a side effect, a call to the pharmaceutical company or your pharmacist might offer you a way to lessen this. OR your pain may actually be in the liver; many drugs affect the liver – perhaps your doctor should check your liver function.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Side effects

Postby ScrappinCrazy » Thu Jun 06, 2013 6:32 am

Hi, I'm new to the forum. I was diagnosed with RRMS in 2008. I am lucky that I have only a "mild" case. My neurologist suggested that I switch to this medicine because I hate doing the shots and missed doses too often. I am on day 18 of taking this medicine. I stopped the shots on April 16th thinking there would not be much lapse in time until starting Tecfidera. It ended up being about a month. What I was surprised to find was how terrible I felt while on those shots. I knew they caused flu like symptoms but did not realize that they caused me to feel so bad all the time until I stopped them. Since starting the new med on May 20th, I have had some flushing with itching and some stomach distress but nothing major. I felt really good after stopping the shots (had more energy, less fatigue) but now am starting to see the fatigue coming back. Was just wondering if anyone else thinks the medicines could be causing the fatigue issues. I know fatigue is an MS symptom but I was really surprised to find out how much better I felt being off the shots. Any thoughts? Thanks.
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Re: Side effects

Postby mikro » Thu Jun 06, 2013 7:46 am

I know fatique for many years now and it was the worst under Rebif. Same here, I felt exhausted and stopped Rebif after 7 months (should have stopped earlier but had no real alternative back then). Two weeks after stopping I became aware of how bad I felt with 'the poison'. I was on Tysabri for the last six years and could control the fatique much better. But still, fatique is part of my life. Now, I'm on Tecfidera for two months and don't feel more fatique than under Tysabri. I still struggle with nausea but this is an very old symptom which came back 12 months ago. So, it's sometimes hard to tell which comes from what.

I don't understand why doctors still prescribe the classic meds, it must have an economic cause...
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Re: Side effects

Postby Ladymac » Thu Jun 06, 2013 11:58 am

Just signed up today for this forum. I have a great MS Neurologist who gave me some tips before starting Tecfidera. I have talked to others following the same tips and we are all doing pretty well.

My Neurologist told me to take a full enteric coated aspirin with my Tecfidera. I stopped taking the heart aspirin and changed for the full 325mg dose.

I was told by the research group at my Dr Office that toast and peanut butter or oatmeal or both won't do it. Breakfast needs the proteins, the fats, and the absorption of the suggestion they gave me below:

Breakfast: If you could eat a sausage egg mcmuffin with your tecfidera you would have the food groups and absorbtion that helps with alleviating stomach pain and bowel issues. I bought the Jimmy Dean already made and frozen breakfast sandwiches. 4 to a box individually wrapped. 1 1/2 min on defrost in microwave and then 60 seconds on high and let sit for one minute. I had choices, the store had the same with croissants or biscuits. On the weekend, my husband and I make our toast, eggs, bacon and I a good to go.

Personally, I take all my other AM meds 1/2 hour before eating my breakfast with my Tecfidera.

We eat dinner around 6pm. At 5pm I take my GERD medicine, Prevacid, so I have that in me before I eat supper and take my Tecfidera evening dose during dinner.

I take the rest of my PM meds at bed time.

Things I have learned the hard way. A bowl of soup, even the chunky soup was a rough night for me. Too much liquid, even with crackers. I ended up having to make 3 pcs of toast and eating that several hours later because my stomach was not happy. Won't make that mistake again :(

Side effects I am feeling: About 5 - 7 hours after taking the morning dose is when I get some of the flushing along with light nausea. Only 3 times over the past 4 weeks have I had to take a Zofran under my tongue to stop the nausea. Interesting though, is all 3 times was after I went up to the 240mg twice a day dose.

In the AM I usually only have one bowel movement a day, since being on this med, I have noticed I am having anywhere from 3 - 5 all in the morning. No issues yet, but I am armed with everything I need if I need help with that.

I have talked to some friends that took their pill on empty stomach and they aren't doing that again. It seems that the complete meal at the same time for both dosages seems to help with the side effects not being as pronounced. I don't get any evening side effects as long as I eat well at dinner. Like I stated before, the mix of the protein, starch, carb makes it easier for absorption as I have witnessed and am hearing from others too.

I have severe GERD and Gastric Paresis too, I already know not to eat and then lay down all the way for at least an hour after I have something so I don't work against gravity. One member stated that they weren't hungry, I agree, my appetite is much less which wouldn't hurt me or my MS on a lot of other areas.

Blessings to everyone! I will keep reading and report any new developments.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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