This Is MS Multiple Sclerosis Knowledge & Support Community

I'm astonished by the time delay flushing occurs to some of the Tecfidera-people. Whenever I experience a flush, it's always about half an hour after taking the dose and half an hour later the flushing is away.

Thank you, Ladymac for your insightful post. I am starting Tecfidera tomorrow and I am going to follow your protocol. Although I start with only 120mg for one week, I will take a breakfast dose soon. I also can apply the same principles for dinner. Yes, it would be nice not to have to use the shots. After practicing Medicine for 32 years, I find myself on the other side of the fence. MS since 1999. Reminded to check the lymphocytes and rest of the WBC's in a month.

Hi everyone. After starting tecfidera my pulse was over 110. My symptoms also came back. I did get a virus, which my doctor said that is why my symptoms came back. I was scared to take the double dose since my heart was racing. Went to the er and they told me to stop the meds. Doc switched me to copaxone. Has anyone else been on that and if so what were your side effects? Thank you for all of the info.

momoffive wrote:Hi everyone. After starting tecfidera my pulse was over 110. My symptoms also came back. I did get a virus, which my doctor said that is why my symptoms came back. I was scared to take the double dose since my heart was racing. Went to the er and they told me to stop the meds. Doc switched me to copaxone. Has anyone else been on that and if so what were your side effects? Thank you for all of the info.

There's an entire forum dedicated to Copaxone.
http://www.thisisms.com/forum/copaxone-f4/

To: xpsychiatricmd

I am confused. The starter pack is the 120mg pill twice a day for 7 days then the 2nd bottle is for the 240mg twice a day. Did they not put you on the starter pack?

Yes they did. I was scared to take the double dose. If the single dose was doing that to me what would the double dose do.

Hi Y'all.

I've been on Copaxone, Avonex, and then we put a port in my chest and did monthly infusions of solumedrol 3 days first month, then 1 day next then 1 day then back to 3 days. I have been on nothing for the past year until I started the Tecfidera. I've been around the block for awhile and have learned from some great doctors and mentors about MS as well as the side effects of different drugs.

The things I have learned and passed on I will offer here. It is up to you what you like or not like what I say, but here goes:

1. While taking any MS drug(s) or treatments, my doctors have told me to not partake in any herbs, vitamin regimens, bizarre diets, without talking to them. Since we don't know what causes MS and we don't have a cure yet, we also don't know how things we eat or take will react with the medication regimens we are put on by our MS doctors. When it comes to our brain, we need to know this is relevant and important advice. Many well-meaning friends, relatives and collegues have heard of and suggest this that and the other thing to take, or some Kabuki juice and we have to politely decline!

2. If you do not have a Board Certified Neurologist whose specialty is MS connected with an MS center, get one! You can guarantee that you will get the latest and greatest information and advice and connections. My Center is about 1 hour drive away (without traffic ) But you can work with your PCP to work with your specialist for things locally, but the Driver of your Bus needs to be their specialty!

3. Not everything, every symptom, reaction, etc., is MS. With that said, some things that are not MS (like a urinary tract infection) can affect your MS if not diagnosed quickly and treated aggressively. Back to #2 above, a partnership with an MS specialist and a Primary Care Physician who is willing to work with you and your specialist is very key to having great care.

4. When we go on new medication of any kind, it is hard with having MS and any of the complications from MS to not be looking under every rock to find something wrong or to blame it on MS or the drug. Researching your medication, like Tecfidera is easy with the Internet. You can read the papers from the drug trials as well as the information that is available from the drug company and the FDA and talk to your MS specialist. My docs told me right from the beginning to stay away from unsubstantiated claims that are put out there on the internet that causes needless stress. For those that didn't know, one of the other drug companies tried to stop Tecfidera from passing the FDA! A competitor....As patients, we want to be informed, but we can also be our worst enemy by believing things that are not officially substantiated. All adverse reactions have to be reported to the FDA, and they have in the past taken meds off the market and then put them back on with warnings. Tecfidera did not come out with a "black box" warning. The side effects are mild and go away in time and I am dealing with them like many others by making sure that I am not messing up my program by not following the advice and tips from my doctors by taking other things he doesn't know about or going on some crazy diet or something.

5. Tecfidera has a website where you can sign up and get a login for the latest information and can also call a number to talk to a special advice nurse if you have any questions. http://www.tecfidera.com

6. Five years ago while on the other ABC meds for MS, I was also suffering with depression and trying to figure out what this meant for me and my life. The best suggestion I got, and I did, was, I found a Psychologist who worked with me as a "life coach" to not make my life as MS. Every 6 months or so we get together for a catch-up, but I have used this as an opportunity to learn how to say "no" to doing things I think will wear me out, and to say "yes" to planning new activities and interests that I have never done before and to reach out to others to look at this new Medication as a golden opportunity to move ahead and to have HOPE!

Finally, I am very grateful that in my lifetime we can take a pill and the studies are amazing compared to anything before this med. I dreaded every shot, infusion, etc. every day, week and month and am going to suck it up and deal with the side-effects as long as I don't have some allergic reaction like any med. I am waking up every day with the same routine (earlier message from me gives my routine as recommended by my MS Neurologist at the MS Center of Atlanta) and then I am living my life the best I can and giving myself the rest when I need it and enjoying life instead of consuming it with this crappy disease.

Blessings to everyone,

I've been taking B12 for a couple of weeks now (after 7 yrs of Copaxone). I didn't have any side effects other than flushing after the first couple of times on the lower dose, but I am experiencing quite a bit of stomach pain, heartburn and bloating now on the higher maintenance dose. I get full really quickly and have less of an appetite. Maybe we can all get together and market it as a weight loss tool for millionaires? (still cannot get over how much they are charging for this!)

Hi Ladymac, my neurologist wants to go very slow. It is not uncommon for physicians to do this, specially when it is a new drug and there are reported side effects. This will improve compliance.

I had the burning and redness when I first began using tecfidera in late May. Met with my neurologist and tecfidera rep. Was told to take 325 mg aspirin once day each morning 30 min before taking tecfidera and eating. It has helped. at times feel a little burning, though not as bad as before.I was told to take it with food . Not sure now. Also, I'm on twice daily 240 mg tecfidera, and have started experiencing joint pain and swelling, most severe in my right jaw, ear, and side of head. I was told by doctor's assistant this isn't known to be a side effect. I am also taking supplement of calcium, magnesium, and vit. D combo; as well as probiotic, and gentamicin injected in bladder 3 times weekly to help prevent recurring utis. Now I don't know if they could be interacting with one another or not. I had checked with neurologist, who told me there should be no problem. My urologist's assistant also told me the joint pain wasn't a side effect. I'm not sure what to do; or if its worth continuing. I just could not take it today. The pain is so severe. Not sure what to do.

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?

As an update, the stomach pain only lasted a day, some general discomfort for the next 2 days, now all is well again. Ginger ale was the best remedy. Fingers crossed this will continue.

Hello! I am new to the forum, but wanted to share my side effect experience with Tecfidera. As a bit of background, I have been diagnosed with RRMS for two years and have been taking Avonex since my diagnosis.

While I was hoping Tecfidera would be a good fit for me, unfortunately that has not been the case. I was on the drug for three weeks. (I stopped taking it on Saturday evening.) I was doing well with it and not experiencing any side effects beyond some mild diarrhea that began as soon as I started the medication. However, this past week, I became violently ill with stomach aches, vomiting, and severe diarrhea. Approximately 3 to 4 hours after taking the Tecfidera these symptoms would begin and last a few hours. I did take my medication with food. In should also say that I do have a fairly sensitive stomach to begin with, so I only share this is my experience in case anyone else suffers to the point that I did. After three episodes of being violently ill, I just couldn't bring myself to take it again. Therefore, I am returning to the Avonex.

On that note, for Avonex users, I have found that taking two Aleve (not Tylenol or Advil, but Aleve) at the time of my injection (which I do before I go to bed) has eliminated the flu-like symptoms. If I forget to take the Aleve, I know it because the side effects do return.

While my experience with Tecfidera was not a pleasant one, I feel fortunate to know that I have options with other medications.

The pharmacist advised me to take Tecfidera with protein. If I do that then I get zero side effects. Otherwise the side effects vary in intesity depending on the food(or lack of food) that I take with the med. But for me protein makes a world of difference! Hope this helps you!

Good morning to all. I am new to this site but not new to life with MS (my next best friend since 1984). I started Tecfidera on May 9th, ramping up to full dosage over two weeks as recommended. I have done well with zero side effects of note until this week. Nausea has kept me up at night in the 6th week of the meds. I take Tecfidera only at meal times and ensure protein is a component of each meal. Last night, nausea appeared 6 hours after dinner and drank a glass of milk that seemed to help.
Since I'm a 48 year old ole timer and have been on 4 other treatments over the years, I am not swayed by a little nausea. I appreciate the posts that retell your experiences with Tecfidera and plan to incorporate new ideas. At least the side effect of this new pill pales in comparison with the other injections in the past. Blessings!

The initial recommendation was Tecfidera could be taken with or without meals. Most of us are having great success with making sure we are taking an enteric coated full Aspirin along with our Tecfidera and a full meal. It needs to have protein, carbs, fat. Not a big meal, but we were told by those in clinical trials that toast and peanutbutter or a bowl of oatmeal won't do it. Example if you could eat s Sausage, egg with muffin along with your coffee or beverage, you would be giving yourself enough of what was needed to help absorb and minimize any gastric side effects.

On the weekend, I cook breakfast. During the week, a Jimmy Dean egg/sausage and croissant or you can get it with bagel or biscuit; frozen already cooked, 4 to a box. 1 1/2 minutes on defrost then 45 seconds on cook and let sit 1 minute works great.

Waffle or pancakes as long as you make with eggs and add bacon or ham or sausage on the side, juice, coffee...good to go.

Dinner, I have learned to not eat late (not to lay down for a couple hours to allow food to process). I have better success not eating spicy or acidic foods, but some type of meat/chicken/pork along with a salad and rice or potato is great. For a few of us (me and some friends with MS all on pill same time) we can't eat pasta with spaghetti sauce for dinner because too acidic, but ok for lunch. mac n cheese with meatballs, etc., good.

I am now in month 2, saw my MS specialist today, I am doing great and as long as I eat properly I am not having any more side-effects. Dropping off the 2nd Aspirin tonight (the one I have been taking with evening meal and pill).

BTW, I have severe GERD anyways, and have Prevacid prescribed twice a day. I take the AM one with all my other meds plus aspirin when I get up and then wait 1 hour before having breakfast with the Tecfidera. Instead of taking my 2nd Prevacid at bed-time I take it at 5pm and then wait 1 hour before having dinner with the Tecfidera. I discovered this by trying it myself and it is working great.