Tecfidera How to minimize or Eliminate Side Effects

[Ladymac]

Greetings,

I thought I would restate part of another post I have responded to some folks and give better detail so anyone considering taking Tecfidera or getting on it and having gastric issues might benefit by some suggestions that is working for me and several other folks that were in the first wave of getting on the new med. I received most of my tips from my MS Specialist at the MS Center of Atlanta and his Team and some I figured out in the timing of the meals and meds myself and reported my success to him this week. He is very pleased with these practical suggestions.

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 a 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.

Note: In the Frozen Food Section of your grocery store, check out the Jimmy Dean Breakfast Sandwiches. 4 to a box, already cooked, just needs 1 1/2 minutes on defrost then turn over (wrap in paper towel) and then cook on high for 45 seconds. There are many selections. Sausage egg & cheese on English muffin, My favorite is the Croissant with sausage and egg and cheese, you can get with Bacon, turkey sausage, etc. Easy to even take in car on way to work.

On the weekend, I cook breakfast.

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, and 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).

My regimin which many people are doing is as follows:

Get up in the AM take all my regular meds PLUS a full 325mg (not heart strength of 81mg) coated aspirin. In my case this includes my medicine for GERD, prevacid.

1 hour later have breakfast (as outlined above) WITH the Tecfidera.

Lunch, have normal lunch.

5 pm which for me is 1 hour before dinner, take another 325mg enteric coated aspirin AND for me my evening Previcid for my GERD.

6pm eat Dinner AND take my Tecfidera.

Bedtime take the remainder of my evening pills.

Once I was finished with my first full month on Tecfidera I was able to DROP the evening aspirin.

DIETARY LESSONS LEARNED: Soup at dinner (supper) even if "chunky" soup was too much liquid for me. Many of us PASTA with RED Spaghetti sauce OK at lunch, too acidic at dinner (supper) time. OK with salad any time, While starting this med, I cut back on raw veggies beyond salad and stayed away from Broccoli or Cauliflower or Beans for Dinner time too gassy.

The few times in the afternoon when I got a little nausea after about day 3 or 4 of being on full strength at 240mg twice a day, eating a few crackers and of course while on a new med making sure I drink plenty of water. Coffee has not been a problem, I don't drink soda but I did get in trouble with acidic stomach after having yellow lemonaid at dinner, so won't do that again.

With this regimin I have not had any severe side effects they were mild and then totally gone.

Good Luck everyone. I am very HOPEFUL.

Blessings,

[joesoldlady]

First thank you so much for taking the time to help others in need. My bf is having such horrible gastric issues so we are sticking to your diet tonight! I am curious what does the asprin do? He has only had one episode of flushing so that is not an issue but the vomiting and stomach cramps are killing him, he cannot sleep because of the severe pain. This is week three for him and the first two weeks no issues. He is so hopeful after hearing your story. I had him cut out one pill at night but maybe he should start taking two 240 mg per day I just hate him being so sick but he so wants something to work. I will keep you posted. Thanks again!

[Baileygirl]

I have been taking this drug for 30 days now. STILL am sick and afraid to leave home.... I have tried eating and when I do I am sick almost immediately. Dr. wants me to stick with it, but boy am I discouraged and depressed. I am on a daily dose of "stomach" relaxer to help but even tat has side effects. Any words of encouragement ???

[Ladymac]

First thank you so much for taking the time to help others in need. My bf is having such horrible gastric issues so we are sticking to your diet tonight! I am curious what does the asprin do? He has only had one episode of flushing so that is not an issue but the vomiting and stomach cramps are killing him, he cannot sleep because of the severe pain. This is week three for him and the first two weeks no issues. He is so hopeful after hearing your story. I had him cut out one pill at night but maybe he should start taking two 240 mg per day I just hate him being so sick but he so wants something to work. I will keep you posted. Thanks again!

Please don't change the dosing regimin the doctor has him on. Whatever the doctor has ordered is what he needs to be on (times per day).

The only thing I am recommending is the balance of eating and the timing of the meds and food as described in my post.

It is always a No No to change around dosaging on these heavy duty meds unless ordered by the doctor because they rely on the levels in your blood to stay constant and it could take days to get back to where you need to be; it's not like over the counter medicine, this like all the DMD (disease modifying drugs) have specific purpose and timing. I wouldn't want to mess up what I agreed I would do when I go on a medication with my doctor without his/her expressed direction. We don't know how that can affect other things. The key to my suggestions is the timing of the food, the type of food to assist in the absorption and to minimize any GI effects as well as the timing of the medicine with relation to other medications and taking it at the same time every day (as close as possible) and during the breakfast meal and the dinner meal.

Blessings,

[Rebeccakris]

I started tecfidera about a month ago. I had no problems with the lower starter dose. However, since starting the higher dose, I am experiencing severe constipation. It feels like I'm pregnant

I've had previous problems with constipation and have worked for years to get the problem under control. I had finally gotten things figured out, but now that I've started tecfidera, I feel like I am back to where I started with constipation. At its worse, I can go a whole week without a BM. I also have some cramping and gas. I'm afraid to take Mylanta or something similar because I've heard that, with some medications, antacids can reduce the effectiveness of the medication (an absorption issue I think). Can anyone recommend something I can take to reduce the constipation and/or gas? I thought I was finally done with laxatives (which I try to stay away from since they aren't good long term).

[Ladymac]

Hi Rebecca,

Sorry, I've been out of pocket for the last week. I would recommend you talk to your MS Specialist and have him/her consult with a GI specialist for recommendations.

I know that others and I are drinking a lot more water since the heat wave and that helps. For about 3 days in the beginning I took 1 colase (stool softener) at evening meal (not 2 as the bottle directed) along with more water and that relieved the symptoms. I didn't want to take 2 because I didn't want to go the other way. Since then I have not had any issues. I however did not have the problems before you described before you started the new medication.

Good luck and let us know how you are doing.

[Ladymac]

HOW IS EVERYONE DOING after trying the diet and timing of the meals?

[candycoffey]

Thank you for taking the time to post this. I'm on day 16 and was ready to throw in the towel yesterday. I have been experiencing the nausea, vomiting, severe abdominal pain and diarrhea. Instead of getting better with time, or at least staying the same, it has become worse each day. I called MSAS and they had no advice to help me minimize these effects and all my neurologist said was take it with food, no diet or timing suggestions. Very frustrating! I have a 3 yr old and 9 month old that can't have me in the bathroom constantly and unable to walk. I'm giving your suggestions a try starting today and hoping for any improvement. Thank you again, all I wanted was suggestions and I'm so glad I found some.

[Ladymac]

Good Luck!

[candycoffey]

Was it still a little rough when you started the diet change? I considered yesterday almost a success. I felt great all day then woke up about an hour after I went to bed due to the vomiting and diarrhea. It probably lasted about 2 1/2 hours It's so hard to take another dose after that.

[Ladymac]

It took 2 - 3 days to adjust totally but definately noticed a difference like you did. You should call your doctor and get something for the nausea and diarhea. It may be something else that is causing that, everyone is different, but the timing of the meals and medication is important as well as have snack, crackers and cheese or something in the afternoon so my stomach wasn't empty. My doctor gave me Zofran for nausea which I put under my tongue and it dissolves and then within minutes I feel better. I have not had diarhea at all being on this med. I always keep Immodium in the house, the pills, just in case for my family; I don't know if you can take that, you should check with your doctor.

I drink Gatoraide G2 (less sugar and calories) when I am sick to replace electrolytes and to rehydrate. I always keep some in the house. I love the orange, grape and the blue one. This is just part of my MS protocol because when I get overheated I sweat rediculously and need to rehydrate or I end up getting sick.

Good luck, please give your MS Doctor a call and let them know about the gastric issues and ask if they can give you something for the nausea and/or diahrea.

Good Luck, I hope you feel better!

Blessings,

[BaileyC]

If any of you take thryroid medication - wait until you have all research updates. I could not find any on the subject matter and should have waited in retrospect.

I tried it for two weeks ... and while I am not a Doctor I was beyond exhausted by the end of week two. No one could verify if there was a conflict with the synthroid but I know what it feels like when that does not work (I once switched to the generic version and felt the same way).

The stomach issues were minor for me as long as I ate a full meal but at two weeks, I had horrible stomach cramps and started to read all these postings and asked myself why I jumped on the drug so fast???

Needless to say, I quite taking it and am going back to my previous meds. I truly regret even trying it now. The overall statistics are that Tefidera is a better drug but I am going to do what works for me until there are other reasons to purse alternatives.

[Ladymac]

Sorry it didn't work out for you. We aren't doctors either, we all have other medications that we have to work through with what conflicts with what regardless of going on any kind of new medication.

Luckily most people are able to work through things and then to having the side effects being minimized or absent; in my case I am not having any, any more. I am in the beginning of month 3.

Good luck,

[travis842]

Better than injections by far. EAT A MEAL, and not just veggies, SOME TYPE OF MEAT,BREAD, FRUIT, yogurt, AND OR Vegetables>>> then in this order*****2 tablespoons extra strength Pepto Bismol>>>Tecfidera>>> then three+ Beano pills chewed up of course.
I am, "practically" vegan now, but eat meat cause it works. I think that's the most perfect, safest, effective, and affordable, remedy. Gasx and several other gas meds have limits on how much is safe to take which isn't enough to do the trick anyways. Good luck.

[Ladymac]

I don' t know if taking pepto with the pill would render some compromise of the medication. Pepto contains Bismuth which is a very strong neutralizer, I would think the pill with the meal and then after a couple hours if you need something like pepto it would help settle the stomach and not inactivate some of the ingredients. Just my opinion, I am not a doctor.