Overcoming Tecfidera

[momoffour]

Alphasig1514, just saw your screen name. Are you an ASA?

Just curious.

[PhiSiggyro]

So did anyone go off of tysabri and take anything during their 2 month wash out period before they started Tecfidera

[dlarson]

On my 3rd week of Tec. Started the meds on a Sunday.

1st week on the starter dose was smooth sailing! Got a little flushed with the first dose but then nothing.

2nd week was pretty good until Friday night. I was woken up in the middle of the night with some of the worst stomach cramps i've had in my entire life! Since then every day has been a battle between me and my stomach. 3-4 hrs after I take Tec I feel like I'm either going to vomit (which is explosive when it happens) or have diarrhea. I am not enjoying this one bit.

I have tried different things...no food with med, food with med nothing seems to work.

I ended up calling the specialist today and he recommended the following for me to try:
*1 hr prior to taking Tec take one enteric coated aspirin with a glass of milk
*eat a full meal(with fatty protein) and then take the Tec at the end
*also take a swig of Pepto with the Tec just as an added precaution

Gonna give this a try tomorrow and see if it makes any difference. I told him that if this keeps up into the 2nd month I may want to try Copaxone. I've had to miss a few days of work due to the severity of the stomach cramps and never knowing if i'll make it to the bathroom.

If anyone has any other suggestions or has tried the method the dr gave me please feel free to chime in.
Would much rather deal with flushing/itching then the stomach issues.

Zofran (prescription) has helped with the nausea. I have not conquered the diarrhea yet. Neuro said to try pepto or imodium when I take the zofran.

[Alphasig1514]

Momoffour -
I am an ASA. Beta Kappa chapter from WIU.

[Alphasig1514]

dlarson -
thank you for that info. i'm trying the 'swig of pepto' like my dr said to try.
last night i did the aspirin; wait an hour then eat and take pill at end of meal.
didnt have any vomiting or diarhea (woot woot)
stomach got a little rolly-polly but nothing major
trying the same regimen again this morning
crossing my fingers it works!

[momoffour]

Alphasig1514, I thought so!! My daughter is an ASA at Loyola in Chicago. She loves it!! Small world.

I can't do the liquid Pepto, I have to take it in the pill form when I need it. Luckily that has only been once. I don't really get nausea, but I get abdominal pains. I wouldn't really call it cramping, but it is painful. My back hurts some days, too. I don't want to jinx myself, but the past couple of days have been ok. Just a couple bouts of pain here and there.

I do still need to take my probiotic and Metamucil today...

[ladybug162]

So after being off of Tec completely for 2 days, my stomach feels so much better!!

I could not stand it anymore and just had to give my stomach a break. The cramps were some of the worse I've ever experienced!

Called my neuro again yesterday who wants me to start with the 120 again and to ramp up even slower this time. I had to order more of the 120's since I only have a few left. I'm just going to wait until I get the new order before starting so I wont have to start, stop and then start again.

I'm also going to try some of the suggestions mentioned on here by others this time around. I will update on how round 2 goes for me. Keeping my fingers crossed that things will be better this time around!

Good luck to you all!

[dlarson]

So week two on the low dose. Still taking zofran and pepto. This morning woke up with severe itching. Sent my hubby for benadryl. What are the chances of getting every side effect. I am really praying for some positives soon or I don't know that I will make it on this med. I am so grateful that I am not working right now. I don't know how people are coping who are working with all these symptoms

[momoffour]

It might just be me, but I've found that ginger tea also has been really soothing. I'm not a huge tea drinker (although I do love my sweet tea!) but the ginger tea really did seem to help, and it tasted good. Also, maybe it's the cooling effect, but the smoothies from McDonalds (I usually get the blueberry pomegranate) makes me feel better, too. This isn't a commercial for McDonalds, I'm sure any cold smoothie would do! I am about to start my sixth week of Tec. (fifth week at full dose). It's definitely getting better for me. I'm still taking the probiotic and metamucil as well.

I do still get stomach pains now and then, but otherwise it's been ok. Good luck to you all!

[Alphasig1514]

Since I started the aspirin/eating/pepto regimen I haven't had a single tummy issue! Everything in my gut seems to be back to normal! (crossing fingers)
I even cut out the pepto last night cause i didnt want to stay on it for too long. Still no tummy problems.
Which in the long run I guess this is for the best as i have a bad habit of not eating on a regular basis.
I'm also going to start my vitamins & priobiotic again now that I can keep stuff down and dont feel miserable.

[durgastiger]

For everyone

I think everyone with MS should try probiotics, russian kefir or make your own. I but Russian Kefir, take a cheaper protandum and juice everyday and I'm on a tricked-out swanks, gaps 5-2 diet and I'm still vertical taking tecfidera.

[Alphasig1514]

Well it seems that eating something with protein in it (hamburger, sausage, etc) and then taking Tec is working for me.

I haven't taken the aspirin at all this week or the Pepto.

No tummy issues as we speak! So very glad I found something that works.

And big thanks to everyone who put ideas/suggestions out there as I was so miserable I almost wanted to stop the meds.

Im also taking my probiotic & vitamins again so I should be somewhat back to normal routine shortly.

[diane louise]

GI problems on Tecfidera

I started Tecfidera several months ago. I did fine on the 120 mg dose. I followed the instructions which stated that it could be taken with or without food. I took my evening dose at bedtime.This was a BIG mistake. After starting the 240 mg dose, I was waking up at 4 AM with dull upper abdominal pain. After a few days, I woke up with really excruciating upper abdominal pain and almost went to the ER. I managed to lessen the pain with 40 mg of Prilosec and some Maalox. I stopped the Tecfidera and the pain resolved in about a week with the continued use of Prilosec. I contacted my neurologist who suggested returning to the lower dose and then slowly increasing back up to the full dose over several weeks. I am currently on 240 mg in the AM and 120 mg in the pm. I take the meds with a full meal and preceded by 20 mg Prilosec. So far, having some mild GI distress but it is tolerable. It will be interesting to see if I will be able to take the full dosage. I think they need to change the medication instructions to state that it should only be taken with food and avoid taking at bedtime!

[Brandyml]

Lovely side effects

I have been on the 240mg 2x a day dosage for about two weeks. I started the medication at the 120mg 2x a day and my very first dose made me very shaky, nauseaous, I was sitting around the toilet waiting to puke it was so bad.

After that I listened to my neuro and took aspirin before and ate a full meal. Eating a full meal first thing in the morning has been the hardest but when I do I don't feel nearly as cruddy.

To help with stomach issues I take a few tums before/with my dosage that seems to keep the burning feeling away along with the nausea. Recently I have noticed the nausea will last almost all day (waxing and waining) if I don't eat a fuller meal.

Now that I am at my full dosage I have notice more balance issues. I keep bumping in to cubicles or barely missing them while at work. Luckily my supervisors know I have MS and I warned them my balance gets off at times.

The other thing, not sure if anyone experiences this or not, but my head feels like it's burning. Not just my scalp, but the inside of my head! I have a lot of pressure and headaches but haven't figured out what to do to help. I also noticed that about 2 hours after taking my morning dose I want to nap. If I nap I have less side effects.

Any one else notice this stuff?