Tag: ampyra

Waiting Game

this last waiting game I’ve been playing is over!  I was contacted by the MS Center yesterday and have scheduled my 1st Tysabri infusion on 6/4.  The most surprising news?  The insurance company claims that they will pay 100%…when I exclaimed in bewilderment, the chick said, “yes that’s what they said, but u can call me before u schedule the 2nd one to confirm that they paid in full for the 1st one if u’d like.”  WOW!  who woulda thunk it…not me!

So…before starting the infusions, i have to be off of the daily shot for 2 weeks…since this process started, i have been slacking off taking the shots – i cyah lie.  So, I missed last week Thursday and Friday (the legs are the sites i hate the most), took it Saturday and completely forgot Sunday.  Yesterday morning, for whatever reason, I decided to do the right thing and take it.  F*CKIN A!!!  because of that, I couldn’t go in on 5/21.  (Since this is new and I’m not sure how I’ll react (side effects and all!), I want to go in on a Friday for the 1st few times.) 5/28 is out – won’t be in town…so I have to wait all the way till June!  That leaves me a whole week to continue with the bloody daily shot – F*CKIN A!!!!

On aother news…the Ampyra continues to work; still no side effects and walking almost like a champ! 🙂

Got Mail!

so i got the Ampyra yesterday…let’s see what this shit can do!  There’s been a slight change of plans…I’m going to start taking it on Monday.  I decided that since no one can tell me how it will react to alcohol (altho as i’ve said before, the medication fact sheet does not specifically state “do NOT drink alcohol while taking this medication!), I’m going to LIME HARD this weekend and start it on Monday…that’s my way of dealing.

This has nothing to do with the new treatment mentioned yesterday; i’ll be taking them together.  The Ampyra has been proven to specifically improve the walking disability in MS patients, the treatment is what you take to hopefully slow down the progression of the disease entirely.

On another note, I have bitten the bullet and bought a pill organizer *GASP*.  I don’t let this disease slow me down too much so i’m still limin as usual/doing my thing, but if i go somewhere, of course i have to walk with my medication (remember i’m on medication for the Spasticity too).  Now I’ll have another pill as well (the Ampyra is a pill- YEA), so i got a very cute organizer thing that i can actually discreetly place in my pockets if I’m out and about.

What the?!?!?  has it really come to this???

SUCKS to be sick!!!

Ampyra Updates

So, I’ve found out a little more about the new medication.  Remember the last thing i discovered was that it would cost $1056 for a 30-day supply?  Well i was on the manufacturer’s site yesterday and found out that:

  1. Some patients meeting a certain income requirement may be able to get it at no cost! (i can dream on about this – i am almost positive that i won’t qualify)
  2. Other patients who are on Medicare Part D (as opposed to A, B or C?) may be able to get some kind of financial assistance
  3. Yet another subset of patients with private insurance (this is where I fall) may be able to get it for a copay of $40

WOOHOO!!!  I think that i can handle $40 a month for my medication.  The drug is also only going to be available thru specialized pharmacies and will be mailed to patients – it won’t be available at ur local CVS.  I already use one of those pharmacies so here’s hoping that mine will carry it and it won’t be too much of a hassle for me to get it.  Altho, i will say that NOT having to fork out $1K a month is plenty to be happy about even if i have to run around the place like a chicken without a head to actually get it mailed to me.

There is also a Webcast being held on March 17th that i plan on attending; hopefully some of my questions will be answered there.

Countdown is On!

the countdown to visiting my doctor to getting a prescription for the new drug – they say it will be available in March (no date – i figure i’ll go to him sometime in the middle of the month)…i wonder if he’ll agree with me that i am a good candidate for the drug.  Will he “fight” me with my decision to go on it?  Isn’t it ultimately my decision?

I’ve learned that the drug will a little over $1000 for a 30day supply!!  Whoa!  How much of that will my insurance cover?  UGH!  The good news is that my current medication (the lovable daily shot!) cost more than that as far as i know, so maybe $1k is small change and the insurance company will gimme a break..

Will the damn thing even work??!?!?!

Right now i have more questions than answers…hopefully these questions will be answered during the next month or so, but until then – fingers, toes, eyes, legs r all crossed and I’m hoping for the best.

Follow Me

Get the latest posts delivered to your mailbox: