Would like to hear from Tecfidera users

[bree2013]

with positive results so far.

I'm out of limbo and supposed to start Tecfidera this month.

I appreciate all the honest posts from Tefcidera users, but am looking right now to hear from those who have found BG-12 to be tolerable or have found ways to make it tolerable.

If you have little tips that make BG-12 tolerable for you, I'd appreciate hearing that also.

I know there are some who were in the trials and it would be nice to hear from you and how you're currently doing. Is BG-12 helping keep your flares in control? Do MRI's show improvement?

Thank you,
Bree

[Mkc3031]

Bree,
I am almost to month three, 240 2xday. Knock wood, I have had no side effects. I have many allergies to meds, and again, no side effects. I can't say about MRI yet as I've only been on this for less than three months. Good luck and God Bless!
Mary

[msesq]

I've been on Tecfidera for 6 weeks. I've tolerated it really well (knock wood) I haven't had major side effects at all. Just random little things that I've noticed:

-I have stomachaches occasionally, especially if I don't space out my two doses for 12 hours (also if I eat ice cream but thats another story).

-I have heartburn if I drink orange juice with my morning dose if I don't take tums.

-My ears itch everyday for about 15 minutes during the midafternoon(???). I also get these random itchy/ sensations throughout the day that last for maybe a minute.

Overall I'm really happy with my switch. I like the convenience of a pill as opposed to an injection or infusion. If this med didn't work I wasn't sure what I was going to do.

[durgastiger]

@Bree

Here are some pretty universal pointers for starting Tecfidera.

- Take AFTER your breakfast and AFTER your dinner.
- Juice 2x a day.
- follow a good diet SWANKS and or GAPS
- Do take your vitamins, minerals and herbs
- Flushing, itching bloated gut and gurgling stomach are common.
- runny nose is kinda common also as is irritable bowls usually in the beginning so develop a bathroom plan that works in relation to your eating habit and tecfidera dosing.
- I really think coating your stomach is important. I haven't had any major side effects just the flushing really. I have been juicing for a few years and while on Tecfidera I have stayed consistent with going to the bathroom after breakfast and taking the tecfidera. This is probably the hardest thing with starting tecfidera.

All the best and keep us posted.

[Leeaura]

Only on day 5 .....

But I'm doing fine. Doc told me to take baby aspirin and OTC acid indigestion meds about 1/2 hr before meals and take Tec after the meal.

I flushed to the point of sunburn on first day. No big deal. Went away quickly. I've had a runny nose a couple of times but it goes away quickly also. No other symptoms yet.

Hope larger dose goes just as smoothly. We'll see...

[penny70]

My Experience

I seem to be one of the luckier ones or at least I feel like it. I'm starting week 6 (I believe) and really no real side effects to remark.

I get a little flushing/warmth with each dose, bit only for a short time. 1/2 hr. maximum. However I'm almost 43 yo so not sure how much is meds & how much is mother nature. I only think this as was having the flushing a little prior to starting meds.

Not any real GI issues to speak of. A little indigestion once in a while but that too seems to pass fairly quickly.

I tend to take AM w/o food and evening either with or just after dinner. I take no pre-dose meds and only take a migraine pill when needed following.

Good Luck !

[whiskers]

Day 17

I am okay with so far. The side effects have been tolerable and have not stopped ANY of my daily interactions. I work full time, have a child, etc.

[VICKYT]

5th day of full dose

From day one, I had a flush (sunburn) on face, arms, neck, ears which lasted for a little over an hour. Not the most comfortable feeling but not intolerable, either. Since I started taking the pills with food, the flushing is much less intense and lasts very little time. I'm hoping that with time, even this will pass completely. Stay positive!

[ggnutsc]

I'm on day 3

Taking the 120mg and will start the 240mg next Saturday morning. So far I've had no side effects at all except maybe a little nose running, but it's so minimal, I can't tell if it's the Tec or just hay fever. I'm hoping that the step up to the higher dosage goes without incident. Not doing much but an aspirin, and some food with each dose...

I think your question is right on target!! I was gonna ask it myself. There seems to be a lot of info out there from people who are having problems, but you almost never hear from anyone who is crusing along with no problems. It's kind of like the mainstream media reporting disasters, but not reporting the good stories... I'd like to think with all of the people taking Tec, that there are a lot of success stories, that we're just not hearing about...

[dkakavas]

Tecfidera: Day 8 "PML concerns"

Hello,

New member but not new to MS.

OK, here it goes. First day, flushing of the face, abdominal pains. Not too bad. 2nd day, little flushing and since Tecfidera may be taken with food, I have almost no gastro issues or abdominal pain. Flushing is now minimal.

Based on all the clinical trial results, BG-12 appears to be the "leading" drug for relapse remitting MS patients. My Neurologist recommended this med and after due diligence/research all seemed fine. Until today....

OK. The big issue:

Dr.Gavin Giovannoni, “… I was the principal investigator on the Define phase 3 BG-12 trial at Barts Health, and sit on the Define BG12 steering committee, and I am co-author on several papers and conference abstracts in relation to BG12…” Says the following...

"PML as a complication of BG-12 therapy is a potential risk that is currently undefined. The risk is likely to be very low and limited to patients with lymphopaenia. We will monitor your blood counts for lymphopaenia and if your counts drop too low we would obviously stop the drug."

I talked to my doctors today about this and I will be getting a WBC count test every month. Should I show signs of a LOW WBC count, then I am going back to COPAXONE (which I have been taking for almost 4 years).

We'll see how it goes... If currently taking BG-12/Tecfidera I recommend getting a WBC test done regularly in order to stay proactive and hopefully avoid anything related to PML.

Recommended: WBC monthly for 6 months. Than quarterly.

Stay well everyone!

D.

[Debbie1756]

tecfidera

Hi, I'm new although I joined several years ago. I'm starting BG12 0n Wednesday. I had been on Copaxone since 2008 but the severe side effects became daily. I'm concerned about the long term effects. Also I'm not sure I'm posting correctly

[bree2013]

Nice to see the posts from those tolerating BG-12.

Debbie, good luck starting Wednesday. I received a call today stating the ball is now in my insurance company's court i.e. waiting for their approval. Will see how long that takes.

As far as possible PML -- yes that is a concern and I'll make sure I get WBCs done to check for drastic drop.

I hope all who are taking this new medicine (or any DMD for that matter) have insignificant side effects.