[nicolfe]

I started Tecfidera last Thursday and so far so good. I had minimal short lived flushing after the first dose. Days 3 & 4 some stomach upset a few hours after the morning dose (could have been anything though) and then today I started the 240mg and wow do I have a headache, but that's it. Not too bad at all, very excited!

[Sparky10]

This isn't very positive, but I just found out MSActivesource has no record of my application or prescription. It was sent on April 8. Oh joy, now I get to start the whole process all over again.

I plan to call MSAS at least once a week.

[EddieF]

lol Sparky. I haven't posted yet cause dr sent script to a co to help me get med from a co which would contact insurance co and contact my pharmacy co to setup shipment, to make it easy for me. Guess he forgets or doesn't know I can speak on a telephone.
1 call per day (at least) by me last week. I got script to pharmacy, was rejected as of now but that's good news! I accomplished the script to pharmacy, this week it's up to insurance co so pray it's in my hands 1 week from right now.
Yes they'll be more calls to make before it's said & done.

Swam 30 laps today, keep positive!

[Bethsca]

Originally Posted by EddieF

lol Sparky. I haven't posted yet cause dr sent script to a co to help me get med from a co which would contact insurance co and contact my pharmacy co to setup shipment, to make it easy for me. Guess he forgets or doesn't know I can speak on a telephone.
1 call per day (at least) by me last week. I got script to pharmacy, was rejected as of now but that's good news! I accomplished the script to pharmacy, this week it's up to insurance co so pray it's in my hands 1 week from right now.
Yes they'll be more calls to make before it's said & done.

Swam 30 laps today, keep positive!

Saw my neuro monday, and she wrote a script for it, but i decided to stay on Copaxone for now. I've gone quite awhile w/o relapse and i don't want to rock the boat. So i'll wait until i have a relapse (hopefully never) to make a change. Also, i already have financial assistance in place for the copaxone. But best of luck to everyone who tries it!

[sabendro]

I was enrolled last week in the Tecfidera program by my neurologist. He sent the script to my specialty pharmacy who is working to get insurance approval. Luckily, I work for a large hospital that is self-insured so I think it may end up being a very small copay if any. I do know Biogen has accepted me in teh $10 copay program if I need it.

I'm very excited about Tecfidera! My neuro and I have been watching it for the pat 18 months, reading everything, doing loads of research... and impatiently waiting for the FDA...

I look forward to hearing what you all think about it. New meds are always a a bit scary. I was on Copaxone for 18 months then quit. I haven't been on any DMD's for the past 18 months. I'm grateful there haven't been any major issues.

The real trouble with reality is that there's no background music. -Unknown

[karilann]

My specialty pharmacy told me to take aspirin 20 mins before the pill and then chew a couple Tums. This is just to help lessen the two most common side affects; flushing and GI upset.

The pharmacy just rec'd my script today.
I've been taking Chantix (for a relapse in my smoking) and it upsets my stomach a bit. I may wait on the Tecfidera until I am completely done with the Chantix. I just rec'd another month of shots anyway.

But as soon as I can....I'm going to the Tecfidera. After all, if I don't like it, I can always go back to the Betaseron....UGH

[EddieF]

After 1.5 days without because insurance denied the 240mg dose which follows/gets billed only 1 week after 120mg, I got it handled within 1 business day once I didn't take pharm's answer of "we're working on it". Don't tell me you're working on it, tell me what the problem is & i'll get it done! Done.

Side effects - honestly, i'm a little hot when I go to bed & lay there with fan on till I awake 3am & turn it off.
Stomach - maybe? a tad of ache for an hr or none at all. No bowel effect & I have a colostomy. I do take a low dose of iron to up my red blood count which, constipates so no change from tecfidera.
If it's giving any of you stomach aches, there's quite a few chemo med effect meds for that.
I urinate a good 1/2-3/4 gallon every day (drink much water during day) which also will keep most effects away.
Undocumented fact if you ask a Rebif nurse about drinkng 1/2 gallon of water per day to squash effects. Helped me a ton back then, drank all that water since dx.

[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!