For Ladymac and others kind and brave enough to share

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.
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Joined: Sat Aug 10, 2013 10:11 am

For Ladymac and others kind and brave enough to share

Post by Baloneysmom » Fri Sep 20, 2013 7:59 am

Dear Everybody who posted their initial and continued side effects,

Thank you so, so much for taking the time to share your experiences. Tecfidera is a scary drug with very ugly side effects. When my neuro prescribed it in June, my research led me here. I read every single post. And then I read them again. When my insurance company called to tell me I was approved, my first reaction was “crap”. And then, after one more read of every single post, I found the courage to start the 120’s.

No, that’s not when I found the courage. After I printed Ladymac’s plan (link copied below) and hung it on my refrigerator THEN I was ready to get started. ... ml#p210942

After the first week of flashes and almost cartoonish rashes, I thought, “Phht, I got this.” Mmhmm, enter 240’s. Again, thank you ladymac for your advice. I cannot imagine how uncomfortable life would be without the antacid (I chose Zantac), the aspirin (ibuprofen for me) and the protein-rich meals. I have the GI stuff, but I wouldn’t call them “events”. I do not have rashes anymore. Well, occasionally if I’m already warm. That’s it. I even kept Dramamine on standby but I haven’t used it yet.

I’m only in my 4th week, but so far, this has been such a blessing. I know, as time goes on, things can change. And then where will I get my next dose of courage if things get ugly? I read today that Ladymac had her MRI and after 4months on tecfidera, no new lesions!?! I mean, really! I may hang that on the fridge, too! (just in case).

So my most heartfelt gratitude to everyone who shared. And, in return, my breakfast strata recipe. I make this Sunday night and Wednesday night to eat the following mornings. Sometimes, I switch frozen hash browns for the bread or crumbled sausage for ham. Enjoy!

PREP 15 min TOTAL 1 hr 35 min
• 8 servings
12 slices bread
2 cups cut-up cooked smoked ham (about 10 oz)
2 cups shredded Cheddar cheese (8 oz)
8 medium green onions, sliced (½ cup)
6 eggs
2 cups milk
1 teaspoon ground mustard (I use 2 tsp Heinz yellow mustard)
¼ teaspoon red pepper sauce (no, thank you)
Paprika, if desired

1. Trim crusts from bread. Arrange 6 slices in baking dish. Layer ham, cheese and onions on bread in dish. Cut remaining slices diagonally in half; arrange on onions.
2. In medium bowl, beat eggs, milk, mustard and pepper sauce with fork or wire whisk; pour evenly over bread. Sprinkle with paprika. Cover and refrigerate up to 24 hours.
3. Heat oven to 300°F. Spray 13x9-inch (3-quart) glass baking dish with cooking spray. Bake uncovered 1 hour to 1 hour 10 minutes or until center is set and bread is golden brown. Let stand 10 minutes before cutting.

1 Serving: Calories 350; Total Fat 19g (Saturated Fat 9g; Trans Fat 0g); Cholesterol 215mg; Sodium 920mg; Total Carbohydrate 20g (Dietary Fiber 0g); Protein 24g Exchanges: 1 Starch, 3 Medium-Fat Meat, 1 Fat

Adapted from Betty Crocker Cookbook: 1500 Recipes for the Way You Cook Today. Kindle Edition.

RRMS Diagnosed April 2002
Tecfidera started August 2013

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Re: For Ladymac and others kind and brave enough to share

Post by Ladymac » Sun Sep 22, 2013 4:12 am

Dear Baloneysmom,

We are all here to support each other! And your recipe sounds delicious. I am going out for ingredients today! Thank you for your contribution!!

I just received my 6th month bottle of Tecfidera shipment on Friday. End of next week, I can't believe will be 6 months! I am doing GREAT. I have several people that have stayed in touch while they are all doing well as well.

Some things to look forward to, I hope:

1. During the 3rd month several of us noticed that the "brain fog" had lifted, our cognition, memory, reasoning, all got clearer and we "felt better."

2. Once we started to "feel better" in my case, the best in 10 years, it was my body that was weak and out of shape. Having to recondition myself is an ongoing process. I had muscle loss, tone issues, strength in legs and arms. It took a while to get like this, I have to be patient and most of all, NOT OVERDO. Pace myself. I have gotten myself exhausted or hurting by the brain is willing but the body is weak. It will take a while to get stronger.

3. In the 4th month I was able to introduce back in fruits and vegetables without getting indigestion, acid stomach, and I was able to cut back on the breakfast I started with and I am able to enjoy Yogurt, oatmeal, toast, protein bar, etc., without having to eat a big breakfast.

4. Some of us have experienced being sharp and having good energy until late afternoon, then we felt as if a plug was pulled out of an electrical socket, we had no more having a full tank of gas in the morning, and as the day went on, by 3 or 4pm we were out of gas. Personally, I have converted complaining about that to realizing I didn't have the energy and stamina mentally for any time of the day, so this is considered a HUGE IMPROVEMENT.

5. I have learned that supplements and be good but they can interfere with the whole picture. Getting too much of one thing and not enough of another can cause problems. When we are on a Treatment Plan, we need to only take what our MS Neurologist Specialist tells us to so that we don't mess up things on our own devices. This way, it is easier to sort out what causes what and what can and needs to be done. I am not saying for those that aren't on MS Disease Modifying drugs and are trying supplements, I am specifically calling out for those that have agreed to the plan and taking of Disease Modifying Drugs.

Finally, Tecfidera is a very important medicine. It is having remarkable outcomes for many people, including me. It is a new medication, for me not scary, we are all learning as we go. I thank you for your recipe, and hope you continue to share all your achievements with it and any concerns. I am not a doctor or nurse, I am a patient, like many, who find it a wonderful blessing to be able to see other people's experiences and share mine and feel like I am part of something.

Good Luck!

RRMS diagnosed 2006
Tecfidera Started April 2013

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Joined: Fri Feb 26, 2016 8:42 am

Re: For Ladymac and others kind and brave enough to share

Post by JoniJohn » Fri Feb 26, 2016 9:01 am

For Ladymac and for Baloneysmom,

I am newly diagnosed (Jan 12, 2016) and I began Tecfidera yesterday. I was dreading having to eat lots of food to avoid side effects and stomach issues. I was really happy to see your posts. I put both of your posts on my refrigerator. I am especially happy to read about the improved condition especially in regards to brain fog and congnition. Thank you both for sharing. :smile:

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