Tecfidera and Me

[abck05]

Hello Everyone,

I am starting Tec today- 120mg for the first week. I am nervous, but I am also hopeful. I was inspired by so many people on here to plan and be ready for this part of my MS journey. First, a little background. I was diagnosed in 1999 and was on Avonex since 2000. My neuro new I hated the needle and the flu-like after effects, so he suggested Tec, so here we are.

After ready all the blogs, I started today with a Zantac and aspirin an hour before breakfast. For breakfast, I treated my self to an egg mcmuffin and hash browns since some suggested that to take the pill with something a little fatty. I was doing okay then about 45 minutes after, I felt a tingling at the top of my head then it slowly started to spread down my face. I wondered if this was the itching or the flushing, but I did not have to wonder very long. After the tingling went down my face, i started to get warm, very warm. I quickly rolled down the window, since I was in the car and cooled down. The flushing went away after about 20 minutes. I felt better then for some reason I could not get warm, I felt so cold in my hands. Cold to the point of where my hands were shaking. I warmed myself up with my coffee cup and after about an hour, I was okay. That was it for side effects after my morning pill.

I took my evening pill after a full dinner about 30 minutes ago. Cross my fingers, it won't be like this morning.
Hugs to all.

[abck05]

Day 2

Last night went well. I felt a little tingling in my face and then a little flushing. It went away after about 20 minutes and had a good night sleep.

Today is my second day on Tec.

-6:00 - pre-medicated with Zantac and aspirin
-7:00 - ate full breakfast (homemade breakfast burrito and a pear) and took the pill
-7:44 - rut-roh (scooby doo reference) the tingling started from the top of my head to the rest of my face and the flushing began. I also noticed that I felt some flushing on one arm. hmmm. But overall, it wasn't as severe as yesterday, whew!
-8:00 - most of the flushing went away and my hands are again freezing. I can't figure out why this is happening. Has anyone else had this side effect?

[hope32]

Glad you're off to a fairly good start! I haven't had flushing so I can't comment on that but I hope it clears up soon!

[abck05]

Day 2 Continued and the start of day 3

Thank you Hope!!

I had a long commute home yesterday and could not take the Zantac and aspirin until 7:30. I should have planned better so that I had the pre-meds with me to take on the way home. I know better now. And since I did not want to eat too late, I shortened the time between the pre-meds and taking the pill.

Anyway, I should also add that I have had bowel and bladder issues like others. To help with the bowel issues, I had been taking fiber pills and it was working (I have not figured out the bladder issue yet) But when I started Tec, I stopped taking the fiber pills just in case I had the runs as a side effect. Now since I had not had the runs, I decided to go back to taking the fiber pills. So here is how the evening went -

- 7:30 - Zantac and aspirin
- 8:00 - Dinner, water and fiber pills and the Tec pill
- 8:45ish - Slight tingling in face, very little flushing (cautious yeah!)

Day 3 -

I thought since last night went so well, I would repeat my routine with a slight change. For the last two mornings, I had been having an egg and either sausage or ham. I wanted to see if I could change it up a little. Its about 9:15ish now, so far so good. Here was my morning routine:

- 6:30 - Zantac and aspirin
- 7:10 - Breakfast (multigrain toast w/butter, banana and white cheese), fiber pills, coffee and the Tec pill.
- 7:50 - slight tingling in my face but no flushing (yeah again)

I hope these are good signs with taking Tec. My left leg continues to drag a bit, but with cane I am set, so I am hoping that Tec works. I am keeping a journal to track everything so that I am read for my new Dr. appt.

Hugs to all,

[abck05]

Day 3 continued and Day 4

I am lucky in that my mother lives with us and she is my rock. She made dinner so that it would be ready by the time I got home. Here was my routine for last night:

- 7:00 p.m.- Zantac and aspirin
- 7:30 p.m.- Dinner (stew), fiber pills and Tec pill
- 8:45 p.m.- I started to feel tingling and flushing on my face. It lasted for about 20 minutes.

I was surprised that I started flushing after 90 minutes, that is longer that the first few times.

Today is day 4 and I got fatigued all of a sudden. I haven't had that in over a year. Here I how my day has gone so far:

- 6:30 a.m.- Zantac and aspirin
- 7:15 a.m.- Breakfast (same as day before), fiber pills, coffee and Tec Pill
- 8:45 a.m.- Tingling but no flushing. It lasted about 20 minutes.
- 10:30 a.m.- Tingling came back, crazy, but it went away in about 10 minutes
- 3:00 p.m.- Fatigue started. I drank ice water to perk myself up.

- 7:30 - Zantac and aspirin
- 8:00 - dinner (stew again), fiber pills, water, and Tec pill.

I am the fatigue was a one-off episode. I have a long commute home.

Hugs to all,

[AlaskaAnn]

Thank you so much for your notes here. I am due to start next week some time and am glued to your page. I wish you all the best and thank you for all the details. I will be going through all of this on my own as my husband will have to go to work, long days and an hour away. So having your daily notes is like having a game plan. At least it is something. So thank you for putting it out there.

[eliden3]

hello to AlaskaAnn

Thank you so much for your notes here. I am due to start next week some time and am glued to your page. I wish you all the best and thank you for all the details. I will be going through all of this on my own as my husband will have to go to work, long days and an hour away. So having your daily notes is like having a game plan. At least it is something. So thank you for putting it out there.

Hi AlaskaAnn, I saw your post and wanted to reply. I'm in Southern CA. This is all new to me and I just finished my first week on tec. It's going ok I have had flushing that was a bit scary, uncomfortable. I was very concerned about taking the increased dosage. That was today, and it's ok. It's been 8 hours and very little flushing. I noticed yesterday, last day on the lower dosage, all the flushing was subsiding. So I'm relieved about that. Now I just want to see how it's going to work, going forward. This is the only med I've taken as I was just diagnosed recently. It sounds so interesting to live in Alaska! I'm sure it's beautiful. I hope we can keep in touch, and I hope I gave some information that might be helpful. Have a good weekend!

[eliden3]

hello again to AlaskaAnn

Thank you so much for your notes here. I am due to start next week some time and am glued to your page. I wish you all the best and thank you for all the details. I will be going through all of this on my own as my husband will have to go to work, long days and an hour away. So having your daily notes is like having a game plan. At least it is something. So thank you for putting it out there.

Hi again...I'm sorry for saying it was "scary and uncomfortable" being that you haven't started it yet. I felt that way but was able to have a conversation with my doctor's P.A. (physician's assistant) and she gave me good detailed information about the med and the effect of the flushing. Then I understood what's happening and it's not so scary. She explained that all the blood vessels are dilated, and this causes the redness, and warmth, etc. It's a known effect so it's not a problem, and it will pass. It helped me just to get this little bit of understanding. Also she said you can take a baby aspirin and if you like, a benadryl with it to help with the flushing and itching. I also noticed several people in these posts here are doing that and it seems to work. I have been doing that for two days now and I think it helps. Hopefully this is helpful to you also. Have a good evening.

[abck05]

End of day 4 and the beginning of day 5

Hello Ann,

I'll admit that I do get scared sometimes. At work, I am a project manager, so planning next steps is what I do, but with MS that is hard and frustrating. So while I am scared I balance that out with trying to be smart. Smart about my body and what it is telling me, smart by researching how others are doing, smart by remembering to take care of me. I have a young daughter, so I am doing this for both of us. You are not alone here. The MS World community is full of so many great people.

I saw on another post that some had experienced a noticeable increase in hair loss. I noticed that about 3 months ago on Avonex. When my neuro suggested I go on Tec, he ordered a blood test to get a baseline. He called me as soon as it came in and said my vitamin D was very low and that I should go to the doctor. I went and they did some more tests and concluded that I was post menopausal. I never noticed. I needed to go on at least 2000IU of vitamin D for a month to get to where I needed to be. The timing was good since I had to wait for the insurance company to approve me going on Tec. All this is to say, that I noticed my hair loss subsiding after taking the extra vitamin D. So now as part of my routine, I include one of those vitamin D chewables with lunch as extra measure. Every little bit helps. And on that note, last night's routine was:

- 7:30 - Zantac and aspirin
- 8:00 - Dinner, lean beef, rice, carrot/beet salad, fiber pills and Tec pill.
- 9:30 ish - A little tingling, it lasted no more than 10 minutes.

Now for today. I tutor elementary kids on Sat mornings, so I wanted to make sure I gave myself time with any Tec side effects before I went to meet the kids. Also, I have started to carry a just-in-case pack like I did in the summer. In my little just-in-case pack I have the zantac, aspirin, benedryl (for itching), crackers to settle my tummy, tums, extra clothes (for accidents- never had to use, but...) and water. So far for today:

- 6:30 a.m. - zantac and aspirin
- 7:15 ish a.m. - Breakfast (multi-grain bread with butter, some brie cheese, grapes, orange slices, coffee), fiber pills and Tec pill
- 8:20 ish a.m - slight tingling, no flushing

I had errands to run today. I started to feel very tired around 1:00, I can't say it was due to the Tec pill, it might just be that I did too much. Even now, laundry is calling my name....

Hugs to all,

[AlaskaAnn]

Thank you both....it helps so much

Honestly, even hearing the bad makes it sound doable for me. I need to know the good, the bad and even the ugly to make my plan. When I started the Betaseron I knew nothing and ended up one very sick lady. The break in period was 6 months and I never got over the flu symptoms. I want to go into this one one with as much info as I can, good and bad.

My doctors (md &nuro) are at odds for me to go on it but are in agreement to work together for me. So where I am now...I eat very low fat natural as I am a serious juicer. My BMI is at 20 so I am right on target with no fat to spare - made those shots impossible to bare. I take protein, fiber, probiotics, amino acids, as well as biotin, inositol & choline additives to my juicing due to other medications I am on for chronic migraines and now other head issues that have popped up. Neither doctor wants me to stop any of those when adding the Tec and the both want me to have baby aspirin, Benadryl and Zantac added. Neither have mentioned vitamin d for hair as the pure carrot juice and biotin I am on has been working well so far.

I do have weight concerns, don't have any to lose. I can't afford to trigger my migraines more then I do and my juicing has reversed my crohn's to the point I take nothing for it at all. I don't want to mess that up. I was even concerned adding the fiber and probiotics this week and probably only did so to make my md happy. Did I mention I currently only eat one solid meal a day?

So yes, please as much detail as you are willing to share...I promise as soon as I start I will return the favor...I have so much to learn.

As far as work goes I am a photographer and I am my own boss. I love living in Alaska.....thank you again

[hope32]

Thanks so much for sharing your experiences in detail! It's nice to read others' experiences as well. I'm glad it's going pretty well for you overall and hope you continue to do well on the 240mg!

[AlaskaAnn]

Hope, Abck, and Eliden what is your schedule or was as far as going 120 to 240 if you don't mind me asking?

[abck05]

Hello Ann,

Not a problem. I went off Avonex for two weeks before starting Tec, then one week on the 120mg. I start with the full dosage on Tuesday.

[abck05]

End of day 5 and day 6

I am getting into a good pattern with the meds and food. Tomorrow I begin the 240mg dosage of Tec. I am cautiously hopeful. The end of day 5 went like this:

6:30 - Zantac and aspirin
7:00 - Dinner (roasted veggies, rice, a small portion of kielbasa, fiber and Tec pills)

No side effects. Yeah!

Sunday (day 6), I had so many errands but I felt a little tired. I don't think it was fatigue. I think I am just mentally tired thinking that about starting the full dose on Tuesday, work and the recent loss of my aunt. Today (Monday), it is lovely out so I will go an enjoy some of it while out. But before I go, here was day 6

-7:00 am - Zantac & aspirin
-8:00 - Breakfast (multigrain bread, brie, fruit, coffee)
-10:00 - slight tingling in the face, it only lasted a few.

- 5:30 pm - Zantac & aspirin
- 6:30 - Dinner (veggie Thai, I wanted to try eating a meal without a lot of fat), water, fiber pills and Tec pill.
- 10:00 - slight tingling in face, but again it only lasted a few minutes.

I was reading another thread about walking and taking Tec. While on Avonex, I was getting a little stiff if I just sat for long times, especially at work. My knees and left leg would be stiff when I got up. So I started to do small exercises at my desk when I could remember. By small, I mean leg lifts, twists in my chair and standing&sitting about 10 time each. It helps a little. I will keep an eye on my walking, etc as I start the full dosage of Tec.

I hope all are doing well.
Hugs to all,

[AlaskaAnn]

Big hugs Abck for tomorrow . I hope you do well on your increase. So sorry to hear about your Aunt.