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-   -   Finally got an arrival date for Tecfidera (https://www.neurotalk.org/multiple-sclerosis/190253-finally-arrival-date-tecfidera.html)

karilann 06-21-2013 09:57 AM

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.

Sparky10 06-21-2013 02:46 PM

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.

karilann 06-24-2013 10:53 AM

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:

My3sons 06-24-2013 12:11 PM

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

Sparky10 06-26-2013 09:36 AM

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!

jprinz99 06-29-2013 06:56 AM

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;)

Sparky10 06-29-2013 11:44 AM

Quote:

Originally Posted by jprinz99 (Post 995975)
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.

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!

SallyC 06-29-2013 12:32 PM

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

Sparky10 06-30-2013 10:08 AM

Quote:

Originally Posted by SallyC (Post 996057)
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*

Kitty 06-30-2013 10:19 AM

Quote:

Originally Posted by Sparky10 (Post 996226)
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. :)


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