First Dose

[durgastiger]

pharmacy & BCBS

Let the game begin! 3 weeks in the making. Stuck in claims and my pharmacy said that if they don't know by noon tomorrow most likely BCBS will request a different pharmacy.
Been using the current pharmacy since the beginning. Hope BCBS will accept my pharmacy.

[Marco]

Been taking Tecfidera almost a week now.

About 3 hours after my first dose I was eating bbq with spicy sauce. I started flushing for about 15-20 minutes and the last 2-3 included itching arms. My wife was shocked how red my left ear got, but the ear didn't bother me.

Like any Texan, I got a refill of the sweat tea, chowed down on Texas toast and some watermelon until the flushing passed. Then I finished my brisket with mild sauce and was fine.

I have never had flushing with that BBQ sauce before, so that was odd. It was similar to eating the "homicide" sauce at another hotwings place. For the moment I am laying off the spicier foods, but maybe that was just a coincidence.

On all remaining doses I have not noticed any side effects at all. I had SERIOUS side effects on copaxone, beteseron and rebif so this really is a great start.

[JerryD]

Marco,
All of this sounds great ! I am happy that you are not having any extreme side effects.
Is it your understanding that Tecfidera does the same thing that the injectables did ? I guess what I want to know: Is it your understanding that Tecfidera is the replacement for Avonex or whatever injectable you are currently using ?
I am sure it is an easier to administer delivery system. Good luck to you

[zoysia]

hello! fellow Tecfiderans!

Just took my first dose! And like others, it's Christmas AND Birthday presents rolled up into one, and am starting a very Very VERY hopeful process, for me!

I'm so happy I could cry! (pssst, did for a bit!) Was quite overwhelmed that this is finally here and I can, after five-and-a-half years of pretty much no MS therapy that I could tolerate, say "I'm going to fight this thing, so help me God! Starting TODAY!"

That feels so good to say.

Bottom line: my prayers are I hope, for all of us, that this little capsule will improve our lives, our quality of living. And that big pharma continues to improve on this so that we ALL beat MS into submission, remission, a cure! Amen.

[MSW1963]

According to my MS neuro yesterday, the new JCV+ blood test ranks those on TY who are at greater of developing PML.

MS neuro and I discussed my MS improvements since starting TY, my JCV+ status, horrible Ty rebound, the new JCV+ screening, and the possibility of starting Tecfidera. He's recommending it. Like all of us on TY who are JCV+, I'm scared. My rebound from TY about a year ago was terrifying and I haven't completely recovered.

During my appointment, the neuro called for my JCV 'rating' but my last blood draw was not included in the new screening and JCV rating method. I have orders for blood work specifically for the JCV+ rating.

I'm just weary and worn out by the years spent hopeing for recovery based on all the hype around the latest and greatest meds, only to have hope for recovery replaced with side effects and progression.

TY was the only med that I experienced real improvement, but being + JCV and a frightening episode of rebound that I'm beginning to think I may not recover from, I'm pretty torn about what to do about TY, and what to expect from Tecfidera once the hype settles.

[msesq]

I just took my first dose; my meds came this afternoon. I waited until after I had dinner. So far I just feel a little weird. Maybe its flushing, maybe its nerves.

[oliveroliver]

Tecfidera

Wow this is the first time I have ever posted anything ever was dx in 1997, Avonex untill 3 years ago, started copaxone, saw my neuro on the 19th and she signed me up for the BG12, they have not called yet, so I am waiting and wondering, looking for posts from persons who have started it. I am a 57 year old female and still doing pretty good. I will be reading all of your posts and will post when I get started on the pill. Good Luck to all of you taking BG12

[Sunshine]

Bill Hick..please read!

Bill, what pharmacy have you been using and where are you getting your Tec. From? I have BCBS which uses Medco which uses Accedo to fill my Copaxson. This past week Caremark has been calling we saying they were waiting on approval. I have gotten a complete run around with BCBS. Anyway, Caremark called to say that Medco wants Accredo to fill it or thst they would charge me a Huge copay. I told Caremark that I couldn't deal with a higher copay so they are sending the script to Accedo. I never have understood how caremark got the script unless that is who Biogen sends it to. Do you know? And how did you get Copay assist? Did the pharmacy set it up for you? I am reaching out to you because I know you have been dealing with similar issues. Thanks!

[msesq]

I had some serious issues with pharmacies and being bounced around, and I dn't have BCBS. Caremark was the first pharmacy that called me, even tough they are not the specialty pharmacy that my insurance uses. I wonder if Biogen just sends everyone there first.

I'm still getting the insurance run around. I haven't gotten apporved yet; my supply so far is the quick start two week pack.

I know that they wanted to get the meds out to patients sooner (and start making money, of course) but I wish that they had actually taken a bit more time to get things straight with insurance companies, instead of having so many of us deal with insurance issues.

[durgastiger]

Sunshine!

Hey Sunshine!
Good news. I use i-core. I qualified for the $10.00 a month for Tecfidera. I think my neuro was holding me to the wash-out for 30 days. I got a tracking #, everything is set and I should have it today. I was just freaking out because I was on no meds for almost 4 weeks.

Are you currently on any meds sunshine? I am guessing that my BCBS is pretty good so i-core helped me apply for the $10.00 co-pay per month. They took care of it all for me.

It was frustrating for sure. Tracking my form down because it wasn't showing up in claims with BCBS but I was approved and shipped 3 days ago. It is still not showing up in claims so I'm not sure what the procedure is.

I would say go on IBX login to your account and check your claims and also call your pharmacy that fills your MS meds.

Hope this helps sunshine.

[dann]

almost turou 7 days

Well, now been on starter dose for almost 7 days and then will start bigger dose. So far have seen no big improvement but as long as it does not make me worse, it's great! The only side effect is red cheeks with little like freckles but does not last long and experience mild nausea. Appreciate what everyone has posted. So many of us are on this exciting togethers..........faith, love and laughter....

[ms man]

Has anyone gotten their meds yet? I spoke with Bigen earlier today and my neuro put me on the Quick Start program, where they send you pills even before they figure out what your insurance covers.

The rep told me that I'm scheduled to get a delivery by Monday at the latest. I feel like a kid at Christmas! I'm excited both for the fact that Tecfidera is supposed to be such a game changer, and every time I went for a Ty infusion I was thinking about PML. Plus you never know how a med is going to impact certain symptoms. I'm hoping that it will help with some of my spasticity isssues.

Anyone else excited? Has anyone gotten their scrip filled?

I discussed T with my neuro.He told me that it's about only 50% as effective as Ty.The fact that there's no PML sides is worth switching from Ty to T.The convenience of taking a pill at home instead of an infusion at a clinic is a "game changer".

[msesq]

My neuro said the same thing, MSman. She really wanted me to get off Tysabri asap, end even though the purported efficacy rate for Tecfidera is lower than Ty, its still higher than Rebif which is what I was on before.

As far as my doses so far, I was doing extremely well (no real side effects at all) until this weekend. Then Saturday I had a serious bout of diarrhea and Sunday I had some flushing and itching. Both after my second dose of the day. Neither event was terrible, I was just a little caught off guard since I had been taking the drug for a few days and didn't feel anything.

[ms man]

My neuro said the same thing, MSman. She really wanted me to get off Tysabri asap, end even though the purported efficacy rate for Tecfidera is lower than Ty, its still higher than Rebif which is what I was on before.

As far as my doses so far, I was doing extremely well (no real side effects at all) until this weekend. Then Saturday I had a serious bout of diarrhea and Sunday I had some flushing and itching. Both after my second dose of the day. Neither event was terrible, I was just a little caught off guard since I had been taking the drug for a few days and didn't feel anything.

That'sinteresting.My Neuro didn't sugest comin off Ty.He just wanted me to know that T has been approved by the FDA.

Does your health insurance cover T?

[msesq]

My neuro didn't suggest coming off Ty, she demanded it!! LOL!! She wanted to make sure, among other things, that I had the chance to adjust to a new med before what is typically the hardest time of year (Summer) for me with my MS. SHe did say that in the worse case scenario, if BG12 was not approved that I could stay on it until the Fall, but at the end of the Summer if there was still no approval then we would have to look at another drug (she did not want me to go past 12 infusions under any circumstances. August would have made 12).

I got my JCV results in September or October. She told me to stay on it until BG12 got approval in the Spring. I had my semi-annual check up with her in March, and she told me that she would approve me for one more infusion.

4 days later Tecfidera was approved. The crazy thing about the insurance issue is that Tysabri is covered 100%, but from what I am hearing my insurance is not going to cover Tecfidera. Go figure.