[jfcincy56]

I had to re-start the high dose after experiencing the bad side effects. But the second go around I made a lot of changes to my diet, took only 1 240mg pill a day until I felt "good" again, and aggressively treated every side effect.

When I added the second pill at night, I went back to the changed diet, aggressively treating every side effect, etc., and within three days, I felt good again.

The only side effects I feel now is a light "sun burn" feeling on my legs from time to time, and a little heartburn (nothing like the fire in my digestive system the first go around!).

I had been going downhill rapidly before I started Tecfidera. I've now been on the full dose for a month and I feel better than I've felt in years. I hope it's the drug and not a coincidence! I would think I would have to be on the drug for a year at least to know if I really am stabilized, or maybe getting better (I know that's a dream, but I can hope, right?)

Has anyone else out there felt better on the drug? Has anyone else seen improvement while on the drug?

[Sparky10]

Originally Posted by jfcincy56

The only side effects I feel now is a light "sun burn" feeling on my legs from time to time, and a little heartburn (nothing like the fire in my digestive system the first go around!).

Yes! I've been calling it "flushing" because I really do turn red but it also feels like a sudden sunburn (mine is on face and arms/shoulders). Thank you for mentioning that.

Glad you are feeling good on the med. I cannot say I feel better on it, because I never felt bad before.

[karilann]

jfcincy56

I think we will find in the near future that the dosing schedule needs to go slower for this drug. Most people are fine until they hit the full dose. I think they start the full dose a little too soon. So happy you are tolerating TEC! I pray you see real results soon

[EddieF]

Between installing new cpu, ram, ssd harddrive & reinstalling Windows, I didn't make NeuroT a fav & email notifications from NeuroT didn't come in anyway here I am!

Tecfidera- been taking it 4 months now.
I never have stomach issues,
Mild flushing (if it was even flushing- was hot at night sometimes) lasted maybe a month or 2 but absolutely no problem,
Muscle loss or strength compared to Tysabri's about the same.
Spasms were always severe when I move after sitting still for 1/2hr or so, I can't say they've worsened much on Tecfidera.
Spasms/sudden sharp strong jolts after lying in bed for an hr watching tv at bedtime or making up med supplies possibly reduced - let me explain...
After 3rd week of Tysabri infuse, i'd get the jolts in bed often till my next infuse. Ty worked excellent for 3 weeks, wish infuse was every 3 weeks.
Tecfidera- i'll say the jolts i'm speaking of are slightly less frequent & more consistant since Tec is taken daily.
I have 65 more laps to go in my 28' long pool for a 2013 total of 3,000
Swam 2,100 last yr & yr before as well on Tysabri.
Same muscle strength Tec vs Ty, I just wanted to reach 3,000 this yr and pushed harder.
I take 140mg's of baclofen/day plus 20 other meds & vitamins combined.
Eyesight- maybe it's a bit worse over the past 4 months? Haven't taken medrol either in 6+ months which seemed to help eyes. I forget to ask for script cause neuro appt is short & too quick even for me. I'm fine w/o it though or i'd get it.
Yes I took medrol dose pack maybe 4 times on Ty and all it did was help not hurt but that's me.
WBC- for 1st time in 5 yrs it's FINALLY going down. 11 it's at now from 15, 16, 17 which is thru the roof for past few yrs.
Yes the Tec lowers white cells BUT- after 1st month they actually went up a point which ****** me off heh.
I'm staying on Tec for a couple more months, then i'll decide if I want Ty back. So far so good.

Lunch break over.

[ANNagain]

Eddie- We were worried about you. Thanks for reporting in and being specific.

ANN

[dmplaura]

So, I went to see my neuro on Monday. He didn't push the CRABs, nor Tysabri. He did give me documentation/printed material about Tecfidera.

He didn't write me a script, which I very much appreciated. He "gets" me, although I don't think he'll ever come straight out and admit so.

In any case, he wants me to read about Tec, and see if it's something that I'd feel comfortable taking (!). He did take my blood pressure, it was 110 over 70 (excuse me if these # are different than those in the USA, or else... I'm in Canada).

The last time he saw me, I was 80 over 50. I've always had quite low BP, so he was concerned about putting me on Tec because of this, but more so he's concerned about what Tec could do to me, as I have digestive (long term) problems.

I have the info from Biogen, now to decide if Tec is something I want to try. Everything we take, of course, has side effects. I may wait on this one and see how things go with my MS heading into Winter. If I'm stable, it may not be time (and I could wait a bit to see how others are doing on Tec).

I am curious to explore this option though, if the time to medicate comes for me. Yeah I can argue that the time is now, I am diagnosed for 5+ years with MS (probably had it for over a decade based on my neuro's findings). My hubby and parents are no so happy with the thought of any of the MS therapies. I have my own hesitations about taking these powerful meds. Perhaps some day though.... thanks for the information everyone has provided!

[Pbouley06405]

After reading all the stories on the internet (I need to stop!) I was pretty worried about starting Tecfidera, but I am happy to report that I am tolerating the drug fairly well. First dose I had a little flushing in my arms and my wrists itched for about a half hour, but since then it's been fairly smooth sailing (slight nausea this morning).

I'll post again when I go to the double dose, but I just wanted to give some positive feedback for those considering this drug.

p.s. I have been taking a low dose aspirin and taking it with food.

Best of luck to everyone!

[SallyC]

Hi Pete. I hope you continue to do well on TEC, with the dbl dose..

[skcullers]

I switched to ARRP medicare RX plan d this year and it said it was covered for secondary progressive and I believe primary too. Good luck!

[skcullers]

How has the Tecfifera worked for you?