The "Positive" Tecfidera/BG-12/Fumaderm (modded) Thread!
 

Since i'm expecting Tecfidera to shine, amongst a HUGE portion of MS'ers, it's time for a positive results thread for the soon to be success stories.
I'll reply after my 1st week on & yes, i'm hopefull it'll be positive.

I thought about it briefly but I am doing ok on Copaxone. I hope you'll have great results and I look forward to hear how it works for you Eddie!

Eddie, you are one of the most positive people ever. If BG-12 was approved for PP, I'd try it. Keep us informed about your journey. Hope it helps you. You make me feel better with your positive attitude. Thanks.

I'm with you, Eddie! Waiting on financial assistance approval from MSActiveSource. Neuro's nurse says it takes about 20 days, so May 4th is 20 days from when she sent in the paperwork. Had my baseline MRI and bloodwork done on the 12th.

Eddie,

I hope it works for you- even better than you can dream!

ANN

I wish you only the best results..:hug:

:Good-Post: Im with you on that one Sally! :)

I'm still waiting and I can't wait to get the ball rolling. I will let everyone know how I am doing too. I did okay on Betaseron, but I just can't deal with the shots anymore. My skin has about given out after 11 years!

Received my 1st month's supply. I'm really excited. From initial call to neuro to receiving med, exactly 1 month. My hold up was bcbs. They rejected so had to use financial assistance. I'll start tomorrow and keep you posted. I didn't see any side effects with Gilenya so I don't forsee any with this oral. DMF, the active ingredient is something my previous employer used to sell. If FDA ever allows generic, price should be greatly reduced. I can't recall the exact wholesale price but I think it was less than a month's supply per kg. Don't know what other meds it is used in but I do recall that a big pharma did purchase it. May have been for psorias too in the U.S. but in injectible or infusion form.

1 week down
 

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!

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.

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!

Waiting for the other shoe to drop
 

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!

called Ms active source today and they have my application for the BG12! Said they received it April 20. They told me to wait for the pharmacy to call!

Just called, and again, they don't have my application. Tomorrow I'll make sure my neuro's nurse has the right fax number. It won't be such a new med by the time I get it.

keeping with thread title...
 

Good news!! I pick-up starting dose 120mg 2x/day for 1 week tomorrow!!!
Next week I get the full 240mg 2x/day dose!! Hurray!!
Do I look forward to flushing, pooping, and possible headaches? No, but ..Hurray!!!

Started the 120mg twice a day for 1st week dose last night & no side effects at all..yet! Just tell yourself no problem and think of bright side.

Just finishing my 2nd week. So far a little flushing and headaches. When I take ibuprofen or aspirin at the same time no headache. Neuro appt. next month will try to get ampyra and see if that will lessen impact of ms. Reaction better than what I had with rebif. Pop the pill and go. Flushing could be heat related, 90 degrees yesterday.

day 4 starting dose - tecfidera
 

To my amazing astonishment, its been better then i had ever anticipated- im knocking on wood as i write. Flushing mild, but again this is half a dose, twice a day for now. Immediately, within 3 hours of swallowing the tightness in my left arm disappeared (there is anti-imflammatory effects). Mild headache this evening (1 advil seems to work). Other then that i sooooo cant complain after having the flu from avonex once a week::D

Just Enrolled
 

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

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.

As of May 31, I have not received Tecfidera.
I have spoke to MS Active Source about 8 times and it seems they keep faxing the script to Medco mail order pharmacy....but when I call the pharmacy, they have not received it.

I verified the fax number with my pharmacy.....what a mess.
Finally I called my doc's office and asked why they couldn't just fax the script to the pharmacy? Apparently there is more to it than that with a brand new drug....so
Doc's office told me that out of 17 of their patients who applied for the Tecfidera in April, only 3 are currently taking it. The process has been slow with lots of confusion.

So I guess I keep waiting and calling...waiting and calling.....calling and waiting:rolleyes:

Interesting timing, Karilann. I just got off the phone with MSActivesource. The latest update they have was entered just today. The 'script was sent to the specialty pharmacy for insurance coverage confirmation (Medicare only - no $10 copay for me:().

Karilann, be sure to move your hand around on the table you're tapping your fingers on - don't want to dig gouges!

It took me a dozen calls to all links in the chain. And even when I thought I had it done, next denial was CBC needed which can be drawn no more then 30 days prior. Lucky me, I had doc take blood & mri for my own ref that week. Have a recent CBC ready to fax just incase & for your own good. I'll get a cbc in a week or 2 to see if Tecfidera's lowering what it should.

No magical results to report, no side effects either other then very slightly sweaty. I take a generic Advil every morning & 1 adult aspirin at night for a yr? or more so maybe that's why headaches are non issues.

CBC and MRI were current back in April when this process started. With only Medicare the MRI cost me around $200. If it's out of date, I'm out of luck. No way am I paying for another round anytime in the next year.

Worth noting:
While talking with MS Active Source, they wanted to enroll me in the QUICK START PROGRAM to get things moving along more quickly. This would give me a 30 day supply until my regular pharmacy/insurance get their act together.

Well, I did not qualify for the QUICK START due to the fact that I had Medicare A & B. If I had only had Medicare A, I would have qualified.

I didn't even realize you could have Medicare A alone.:confused:

3 weeks and doing great!
 

I've been on Tefidera for 3 weeks now (just starting week 4) and doing great. Outside of some minor itching and flushing for the first couple of weeks, I have no other side effects. I take this with my breakfast at 7am and then again at 7pm, and I think that even though they say it doesn't need to be taken with food, it has helped because I've had not stomach issues whatsoever. It is probably good to note that I did start this after being off of meds for 2 years (many years of ABC drugs), so I had nothing else in my system. Unsure how long I will continue to use it, but for now, it has been great!

Now, if someone can come up with something that will help me to stay asleep and not catnap throughout the night, I'll be an extremely happy camper!

Have been following this intensly as I want to get on Tecfiderea, but I have a Humana Medicare Advantage plan and a slim income. Any tips for those of us on how to afford this?

Good luck to all of you who have/are getting your Tec soon. Am looking forward to great results :)

Only tip I have is to call MSActivesource, Biogen's patient support people. Doubt they can simply hand you a price over the phone but can tell you where to start their financial support process. 1-800-456-2255

The process is time-consuming. It seems things sit and wait until someone (you, me) calls and prompts action. I called them yesterday to see where my application stood. Seems it was waiting for "prior authorization". They have the prescription - why the "prior authorization" is needed separately I'll never know. But apparently it was waiting for me to call and prompt...something...to move.

Good luck! I've been at this since April 4th.

Tec might be helping me. Sudden leg jolts have reduced slightly.
Eyesight yesterday seemed slightly sharper.

Affording it, I have no advice atm. Wish I did.

Finally! Today the script got to my pharmacy. Took from April 26 to June 4 to get things going!
Now lets see who else throws their hat in the ring to screw things up!

my tecfidera journey - bg12 musings
 

so far so good for me - *admin edit*

Okay........here we go! Meds will arrive on Tuesday!

I hope this is your magic bullet, Peeps..:grouphug:

Not sure there is any such thing as a magic bullet, but I'm hoping this drug does its thing without making me feel sick! Its the shots I really want to be done with.

Its still very scary for me to switch. I was doing okay on the betaseron. But my skin was begging me to stop!

lib825 has a tecfidera blog that I'm going to follow. We who take the tecfidera should stick together and let everyone know how this new drug is doing. ;)

Well, my white cells actually went up a point & red's down a tad. Didn't eat lunch before blood draw as I usually do so?

Tec seems to be holding me at week 3 feeling when I was on Ty, maybe going downhill a bit each week. I take it soon as I get up with a handful of other meds & 16oz of 1% milk which has been my quick breakfast for yrs. I take the other dose after dinner. Biogen said schedule sounds perfect. I no longer get any side effect as I did 1st month which was pretty much just the slight red face as others said, slightly sweaty, no headaches really.

I'll stick with Tec for 2 more months, check blood counts & if no improvements in blood or MS, i'll go back to Ty. Staying hopefull though!

Just took dose number 13, and have had the facial flushing twice. Tomorrow starts the full 240mg doseage. *fingers crossed*

One troubling thing...my neuro does not feel the need to monitor my bloodwork. Thought that was part of the protocol? I should call his nurse.

I don't agree with your Neuro, Sparky. I would ask that you have a blood draw every other month for awhile. After all, a lowered white blood cell count is an open invitation to PML. Cautious monitoring for a while would enable to catch anything going awry. I would just ask for it. He can give the lab a standing order so you can just walk in.