Tecfidera and Erica

[erica1000]

Hi guys I am starting this thread to share how my experience goes with Tecfidera. I have been on Copaxone for 3 years and really have had no issues but I am ready for a change. I received my starter pack a couple days before Christmas but decided to wait until after the holidays just in case the side effects were rough.

I started Tec today. About 30 mins before breakfast I took a baby aspirin and Zantac. I took my first dose of Tec with my breakfast of cereal and milk. (I am not a huge breakfast person so I will need to work on eating a little more)

About 45 mins later I was warm from the neck upward and the top my head and ears were burning. Itching started few minutes later. It only lasted about 30 mins and was not terribly uncomfortable. It kind of felt like I had been in the sun a bit too long. A couple times during the day I was extremely hot while others were fine.

When it was time for the second dose I repeated my pre-medications and then ate and took the Tec. There have been no noticeable side effects so far. With the 2nd dose I had substantially more food than with the 1st dose and that may have something to do with the lack of side effects.

I think DAY 1 went very well and give it

[Roamerwithroots]

Thank you for sharing.

My tec is supposed to come today and I'm going to start this weekend. I find myself getting pretty anxious about it...so I'm glad you've posted the order in which you took the pre-med meds! I know I've read it 100 times on here, but am glad to see it again without having to search for it.

Good luck and keep us posted.

[SA_Ken]

Best of luck to you Erica!

Thanks for sharing your experience. I am considering Tec but have not yet made up my mind. Sounds like you are off to a good start.

Ken

[erica1000]

DAY 2

I had no overnight issues from Day 1. I am happy about that.

Day 2 has been uneventful. I pretty much followed the same schedule and saw no side effects.

Day 2 =

[erica1000]

All is good

Hi guys,

Well I am on DAY 5 and all is good. I have not had any side effects since the brief flushing on DAY 1.

I forgot to pre-medicate once and expected to have issues but did not. I am going to continue to pre-medicate for a while longer until I see how I do with the higher dosage.

I hope things stay on this positive track and so far I give it

[Cindybridgeman]

Erica--Great job! Keep going! I'm on two weeks of Tec and haven't had any major side effects. Just keep going and it will all work out for you!

[erica1000]

Day 6 - so so day

Today has been a little different. I have had some mild stomach pain of and on throughout the day. I ate some crackers and it gets better.

Also I really did not sleep last night. I was wide awake until about 3:30 and back up a 7. I don't know if it is related to the Tec or not because I have had other episodes of insomnia in the past so will keep an eye on it and see if a pattern develops.

Even with these things, my experience has been positive.

[SA_Ken]

Thanks for the updates. All in all it sounds that you are doing very well with Tec.

Ken

[erica1000]

Week One Wrap Up

I made thru week one with some minor ups and downs. Here is a quick summary of my side effects.

Flushing - mild for about 30 min and only with first dose. It felt like my ears and top of my head were on fire.

Itching - very mild for less than 10 mins only with first dose. This was so minor I had forgotten about it until I looked over my notes.

Stomach pain - mild to moderate - started on day 6 and happened daily since. I have a small bite to eat and it goes away. It seems to only happen when my stomach is empty (usually after morning dose) so I am going to eat more at breakfast and have mid morning snack.

Insomnia - Through out the week I noticed a slight issue with sleeping but did not link it to TEC. But Day 5 I only slept for about 2 hours all night. This caused Day 6 to be a rough one but that night I slept 10 hours. When I woke up on Day 7 I had all kinds of energy.

Of the side effects that I had for me the worst was the insomnia because of the impact it had on the next day.

All in all I feel like my first week went pretty well given what I was expecting. I had convinced myself that it would be a bad experience and that I would not be able to tolerate the meds. I know it has only been a week but I am glad I decided to give it a try.

I have started the 240mg dose and so far all is good.

[hope32]

Glad you had a pretty good first week overall!

[erica1000]

Week Two Wrap Up

I moved the 240 mg 2x days this week. I did see some minor increase in some side effects. There were no new side effects.


Flushing - This was the biggest increase. Toward the end of the week I ran out baby aspirin so thought I would try to go without. It was not pleasant. About 45 mins or so after the after taking the Tecfidera I started getting hot and got hotter and hotter. I felt like I was going to burn up from the inside out. Spontaneous combustion came to mind several times. I bought some more baby aspirin today, so hopefully I will see some improvements.


Itching - No repeat episode

Stomach pain - mild to moderate - A little increase but I just grab a bit to eat and it settles down. The difference is that it seems to happen in the afternoon. Not sure why since I eat a pretty good size lunch.

I feel like things are going fairly well even with the increase in symptoms. I really want this to work because I am totally over injections.

[Roamerwithroots]

I found that baby aspirin did nothing for my flushing. I take a full strength aspirin and that is what works for me. Even the neuro nurse told me to take full strength. I'm now on week two - and I'm just taking 3 baby aspirin and will lower it a bit at a time and see how that goes.

[erica1000]

@Roamerwithroots - thanks for the tip. I will give the full strength a try.

[erica1000]

Week 3 wrap up

Sorry to be so late with this.

Week 3 was not good. Side effects were AWFUL and pushed me to consider dropping Tecfidera. But toward the end of the week things started to settle down and are back to an acceptable level.

Flushing - The flushing barely seemed to die down before I had to take the next dose and then it would ramp back up. I was hot from head to toe. It was so bad that I told my husband that if he came home from work and I was sitting naked in the garage to say nothing but hi and go into the house because the extra body heat would not be good. I tried full strength aspirin and that was no help. My pharmacist suggested I take an antihistamine and that worked well. However, after a few doses I started having a reaction to it so had to switch back to baby aspirin. Right now the baby aspirin is working and the flushing is minimal.

Itching - Had some itching but the antihistamine took care of that.

Stomach pain - Pain was constant and was making it hard to eat. My Nuero told me to switch from Zantac to Prilosec and after a few days I could feel the difference. I also added yogurt to help coat my stomach and that helps as well.

Week three really hit me hard but now things seem to be back on track. There are still some minor stomach pains but it is manageable.

[erica1000]

Week 4 wrap up

Week 4 was really good. The side effects calmed down and I got back to feeling good.

Flushing - only had a couple mild episodes. I continue to take coated 81mg aspirin before each dose of Tecifdera

Itching - On a couple days I had some itching of my hands and the bottom of my feet. Kind of odd but not a big deal. When it bothered me I used some anti-itch cream and all was good.

Stomach pain - back to being very minor. I am still taking the prilosec before each dose as well.

At this point I have completed a month on Tecfidera. I had some rough moments but they have past and right now I am feeling pretty good.