Hi, Meg. No one has tried this drug per prescription, since it has just been approved recently. I don't think anyone here was in a trial for it, or at least no one has posted about it.
I have MRIs scheduled for Apr 22, and these will serve as a baseline for the new med, which I will start in early May. I hope you and everyone else who tries it will come through with flying colors. From what I know, the side effects are pretty minor and quite transitory.
Tecfidera said the fastest way for docs to get it to them now (it has to come from the specialty pharmacy) is that the pt has to sign the forms and the doc has to write his script on same form and fax it to the specialty pharmacy where they do the insurance paperwork to see what is covered. They then will Fed Ex it to you and you have to sign for it.
They told me (Tecfidera) yesterday when they called me that they will have mine to me before I leave here on the 28th of this month, which means by the 27th, since I don't think they deliver on the 28th.
Hope this helps. But don't know anyone who was on the trials. I guess we will be the first "out of the gates" after the trials on our site to report follow u
I'll keep you guys posted and hopefully everyone else will. I know several are going to take it.
You don't absolutely have to sign for drugs delivered from specialty pharmacies, as I learned from my experience with Avonex. It was a real hassle, though.
I could sort of understand this when the drug comes packed in ice, because retrieving it and refrigerating it promptly is important, particularly in hot weather. But at the same time, this can mean staying home all day and being sort of hypervigilant if you live in anything other than an ordinary house. I live in a condo.
After a few fiascos, I got them to switch delivery from FedEx to UPS. This worked out a lot better, as they were willing to just leave the package, and it was up to me to find it and take it in.
Now I'm getting Ampyra, which is also a specialty pharmacy product, and meanwhile my insurance has changed carrriers. Ampyra comes as just ordinary pills, but they refuse to send them by USPS. Luckily I was able to arrange for UPS delivery without a signature, so this means one less problem to deal with.
If all this stuff were not hideously expensive, I'd think these pharmacies were totally nuts. But still, no one in my building is remotely interested in intercepting packages of rather weird pharmaceuticals that offer nothing to tempt a recreational drug seeker.
My specialty pharmacies, including this one, always gives me an option whether to sign for it or not. I always assume in case someone steals it but I am not in a high traffic area....and also my UPS man will sign for me.
If I don't sign for it and someone takes it, I might have to pay for it again. Also, there has been times when UPS leaves my pkg's at another house.
I get my Copaxone too the same way. On May 3rd I see my neuro and at my last appt we talked about me switching to Tecfidera. So I assume I will be on it real soon too! My MS is stable but I just have the feeling copaxone isn't working for me...only had one good MRI on it. I guess I just want to be on DMD with best statistics before I have more serious health issues. I will keep you all informed how it goes if I do start it!
I am wanting to take it and my Dr is all for it however my insurance co hasn't caught up yet and it is not on their prescription plan yet so have to wait let us know how it goes for you - side affects - etc...
check with Tecfidera, they have a "no cost" period while they work out insurance and then they tell me (without commiting themselves specifically) that they have "help" programs in place but would not elaborate..........
I just read that you have received your tecfidera. I received mine yesterday but haven't started it yet. Have you started yet? How is it going for you? Hope you don't mind me asking. I'm just a little scared of starting something so new.
I started Tecfidera a week and a half ago. I was using Copaxone. I like that I no longer have to have an injection, but I'm still waiting to see in my RRMS symptoms are better (diminished). They start you on I/2 dose for the 1st week and the full dose (2 x 240 mg) the next week and so far, my research says I have to be on it (the full dose) two weeks to get the 'full effect'. I'm hoping my symptoms are diminished with Tecfidera.
Please everyone trying tecfidera, keepn us posted on how it works for you and any side effects you have. Its really helpful for those of us waiting in the wings to see how you "Pioneers" do with it. I have heard glowing reports on how some people's symptoms get better but since that is not what they tested, its not on the pamphlet. ;)
I guess it depends on the individual and their severity of MS but please let us all know! This is an exciting new drug with real potential I think. :)
Here is a high five to all of you who are going for it right out of the starting gate!
I am almost finishing my first week on Tecfidera..No side effects so far, and I am sensitive to meds. I was on Avonex for 14 yrs. and always had a crappy day after my shot. I am hopeful and will keep everyone informed. Luckily I have been fairly well in the past
So how have you both coped with the initial side effects? I started tecfidera today and broke blood vessels in my arms from scratching. Tonight my face felt like it was on fire. Good thug is it doesn't last longer than an hour... But that hour is soooo itchy. Any tips?
Thanks for your reply. I ended up contacting CuraScript and spoke with the pharmacist. He said the only thing that will work, unfortunately for me, is Benadryl. So I've been experimenting with dosages. This morning took 1/2 of 1 pill and am doing fine. Glad this is now working out. I had to convince my hubs not to take me to the ER bc my entire body was extremely red.
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