Finally got an arrival date for Tecfidera
 

It's been 2 and a half months since this process began. What a hassle! You really have to stay on these people. I should be getting my delivery Friday, 6/21.

Delay after delay...they don't have my signature, yes they do...talked to the right people but didn't ask the right questions, goodness knows they aren't going to prompt...got a pharmacy, $2300 copay...back to right people with correct questions to ask...got another pharmacy, med is FREE til end of this year.

Don't let that "$10 copay doesn't apply to those on Medicare" scare you. Talk to MSActivsource and ask specifically for the financial assistance department. That was one of my biggest delays; didn't know I had to ask for that department.

Good luck Sparky..:)

Good Luck, Hope all goes well for you!! :hug:

Sparky- I am doing the Snoopy happy dance for you and also thanking you for the advice re: Medicare ;)

persistence pays off once in a while, eh? Good for you for figuring out the unneeded delays!!!

Glad to hear it!
Week 2 for me on Tecfidera......so far so good! No issues so far.
:hug:

Great news.. hope it works well for you.
Just got blood work done today and signed papers to start the ball rolling for me.

Were you able to get help using my experience, Jane? Oh, that's great! That's one reason we are all here.

Today's the day. *tapping fingers* My Ampyra comes today also. It would be sweet if they both come from the same delivery company. But not my kind of luck.

My Neuro really wants me to try this med. I need to do some research on it but it sounds like it might be a winner. Judging by how long it took some of you to get it I'd better start now!! :)

I hope everyone has great results with this. It's about time they presented something that will work.

In my search for more info I happened across this blog of Wheelchair Kamikaze! It talks about BG-12 and PML and other things.

http://www.wheelchairkamikaze.com/20...2-and-pml.html

Kitty,
If you belong to facebook:
Search for Tecfidera and there are almost 800 people in the Tec support group. They are taking it and chatting about their experiences.

Yay! Arrived on time. Took the first pill at 1130am (on an empty stomach); it's now 240pm and no side effects.

And here comes my Ampyra delivery. Nooooo...couldn't possibly be with the same delivery company...that would be good luck, and we just can't have that! :D

From April 4th (or 8th) til June 21st for something that was supposed to take 20 days. Perseverance pays off.

Sparky,
Keep a log of when you take it and how you feel.
People seem to notice some side effects in week 2 or 3 which makes sense with the build up in your system.
Side effects then can start to subside, but how long it takes is very individual.
Week 2 I started getting a weird headache with a feeling of dizziness. I'm going to push through and stay with my symptom log and hope it starts to dissipate soon. I take an aspirin to alleviate the flushing too. (20 mins b4 the Tec)

Good Luck!:hug:

Sparky,
How has it been going? Any side effects so far?

That first day, later in the day I happened to look in the mirror and saw my face was red. BF said it had been red most of the day, he thought I'd been doing something strenuous. I assumed the flushing would be accompanied by a heat feeling, but not this time.

Yesterday, in the afternoon, I felt the sunburnt feeling and yes, my face was red. Funny thing...my BF said only half my face was red. I said that's ok, I'm only on the half dose. :rolleyes:

ETA: Karilann, I'm starting a journal as we speak!

haven't started the process yet, as I am going to get the Rx from my neuro at my next scheduled appointment. His nurse suggested that unless I wanted to see one of his partners (uh, no thanks it's no emergency) she thought the backlog/mass rush to aquire the drug would smooth out in a few weeks. She said thier drug rep said they are simply slammed with folks clammoring for Tech/BG 12; they honestly did not anticipate the sheer numbers of requests.

Waiting a bit might make the process faster and simpler - seems like a reasonable approach. Since I haven't taken any of the injectibles my husband and I figure we are in no massive rush. In the grand scheme of life, what is a few more weeks, eh?

Will read all your threads and follow along with all of you. Can't wait to have the conversation with my neuro (I suspect he will be pleased I am doing some type of Rx for the MS).

Sparky- thanks again for the tip to ask for financial asst dept at MS Active Source;)

Personally I don't believe this. I think they just didn't, or it's not part of their work ethic, add extra people to help when new meds come out. Of course big pharma knows when they have a winner. Learning how many people expect to start a new med is, I would think, part of research and development.

Jane, I hope your 'script process is smoother than mine!

Today was my 3rd dose of the 240mg. No flushing as yet!

How long before you know if it'S actually helping you?

From what I understand about it Sally, it is only supposed to slow progress. I have not progressed in years. So, for me, I could take it forever and not ever know if it's working. *fingers crossed*

I'm assuming that if it slowed progress you'd notice less exacerbations?

My neuro really wants me to start this med. I'm following these threads of all you who have started this medication and I'm really hoping that each one of you tolerates it well. I go back to the Neuro in October and will try to get started on it then. :)

I just got a call from Shared Solutions. I have not tried to call them, because my Humana turned down the request for Tecfidera, because it is not a medicare covered drug. They sent me a letter that I could not appeal their decsion. My Doc sent my info to Biogen, and they are sending me the drug "Free" until the end of the year, then will reevaluate me.

So when I had given up all hope, I get that phone call out of the blue. So those of you on medicare, and a low income have a chance to get the drug free as well. Hope it works, been on Copaxone for about 6 years. I wlll follow along with the good and bad side effects when I start. Hopefully all good!!!:D

Good luck Bluenurse..:hug:

No problems for at least a week now. Been on it 2 weeks now; so far so good.

Lets hope it lasts. Karilann didn't do so well past 2 weeks.:(