27 is down - When I went in I told the nurse I wanted the drug River posted in prior. I had it written down. I was told no. "I don't think we stock that and if we do it takes an hour to work." I got lucky, this nurse was more experienced and found a good one. Minor pain and got all blood for tests. She said she hit a gusher and not to look - so she cleaned my arm and all went great. I can't look or I get sick. I'm dead tired so not going into the drive, but I'll have to tell you about it later. Drenched clothes, clocked by cops, drive home took 4 plus hours.....Fun not.
The only important part - every 2 mos I am not just tested for liver. Per the nurse - I am tested on function of every major organ in my body, Her list was extensive and I can't remember. I did not know that could be done and I sure didn't know it was being done to me. Yes, this is good, but now I am more scared then ever that I will not pass. I guess I have to do it - one thing is for sure - the facility I go to intends to stop any possible PML there fast. I don't know about the JC virus now. I'm sorry but I did not ask. Too be honest, I have seen too many freak out over this and I can't deal with it. I don't want to know. Just me - not you:hug:

Pink, I'm sorry you had another bad experience!!!!!!!!!!!!!!!!!!!!!!!!!!!

I wish the facility I go to for my infusions would test my blood for everything....LOL I have to beg them to test it at all. If they don't do it every couple of months I have my PCP do it to test my liver. I don't know what else to ask for or I would ask he test for more than that.

My neuro said it would be at least another month before all of the paper work is done and her patients on Ty can be tested :( It's been 3 months already and I'm getting impatient. I want the darn test!!!!!!!!!!!!! I know it takes 4-6 weeks to receive the results. It will probably be some time this fall before they actually do the testing. Every few weeks they were telling me it will be soon but, I think they're sick and tired of my calling the office so this time they said at least another month:(

In 18 months I'll be eligible for Medicare. I'm waiting to see which will come first.....Medicare or that darn blood test from my neuro for PML and my test results!!!!!!!! I hope Medicare covers Ty :) I'm keeping my fingers crossed that we all test negative!!!!!!!!!!!!!!!!!!!!!!!!!!!

My daughter, sil and 3 of the 5 grandchildren are arriving today. They're going to celebrate my older granddaughter's b'day here as well as the 4th of July :) I can't wait for them to arrive. We go back to California every 6 weeks or so to spend time with them but it's such a long drive that I'm thrilled they're doing it this time.....even if they only stay for a few days. We normally stay there 7-10 days.

hugs,
Shayna

Price of Tysabri increases by 19%!!
 

WOW. The price of Tysabri has increased by 19%. That's unbelievable. I have a few suppositions. It went up because 1) fewer people are signing up given the PML risk and once that antibody assay comes on the market the roughly 50% of people who test positive won't be candidates for the drug 2) Gilenia (fingolimod) will be arriving in Sept. most likely and as a pill with no PML risk it may prove to be more appealing than Tysabri.

I would like to say I am shocked, but I guess I'm not. I find this just totally disgusting. Money, money, money. You can't tell me the cost to produce this drug went up that much?

http://www.automatedtrader.net/real-...abri-raised-19

Just cking in to see how all are - working with my meds for sleep here.

More information:

Biogen passed an 18% price increase for Tysabri in the US, effective June 30, 2010. Biogen said it's based on the improved efficacy of Tysabri relative to ABCRs, which have also had recent price increases. Biogen notes that if the JCV assay is successful there could be another one-time price increase in the future. Reimbursement is not expected to be an issue.

The new cost for Tysabri 300 MG/15mL is $3,076.03. The most recent previous price increases were Dec 17, 2009 (for 8%), Jun 30, 2009 (for 1%), Dec 23, 2008 (for 3%), and Jun 30, 2008 (for 3%). I believe the cost is for wholesale price. :eek:

Tysabri goes through a central distributor, who sells to the supplier (who adds their cut) who then sells it to your infusion center (who adds their cut) who then sells it to you/your insurance company. :confused:

I just got a copy of my last bill and the infusion center charges over 3X the wholesale cost, of which my insurance company pays a negotiated fee of more than 2X the wholesale cost. That's for the drug alone, not the infusion costs. :cool:

Guess what? I don't care. It works and my insurance pays for it. My premium did go up 15% July 1st, but so did the crappy plans we have available through my employer, so I don't feel singled out in this plan. Watch what happens after the study that they are doing head to head with the ABCRs. Betcha it goes up again.

Just checking in with my Tysabri twin and the rest of you here. Hoping you're all doing fabulous and enjoying your summer... :grouphug:

Btw, Copaxone went up a lot too, my insurance has to pay over $8,000 for a three month supply. :eek:

RW, hope you're getting some boating time in. My youngest would live on a boat if it were an option. :D

Can I say "ForChrissakeshowdidIevermissthis???" on here?

http://www.sciencedaily.com/releases...1202072009.htm

This is a validation study on JC virus.

I was under the impression that it was NOT known how JC was transmitted, caught, etc.

This 2002 study says different. It also says more than I ever wanted to think about. This guy who wrote this is no fly by night medico. He's got stats as long as my arms and they are LONG!

I hope you can all picture me shaking my head and wishing I had time to follow up on later developments but I just DON'T have time right now.
Perhaps someone could see what they can find out?

I'll be away for a week or so, time for a well deserved vacation. I'm having #41 tomorrow so I get it before I leave and don't mess up the schedule for th next 5 months!

I'm getting infusion #22 right now. Almost done...just waiting the hour. Overall it was pretty mellow although I'm already feeling crappy so I know this is going to be a rough post-infusion one. Blah!

I'm a little irritated though. 2 other women were with me getting infusions. I got up to pee and of course took the IV pole with me. When I came back the nurse said, "well we decided that you are not sick enough to be here. You just move too fast." That really bummed me out--what about all of those MS patients who have invisible symptoms? Everyone's MS is their own MS. Ergh. I just said "well I have other issues I deal with "

Natalie, I'm glad the infusion itself went well. I know what you mean about feeling crappy after an infusion. If possible sleep as much as you can after the infusion. That's how I try to get through the post infusion headache, aches and pain all over, the abdominal pain and nausea.

Is there any chance to nurse was joking??????????????? Otherwise, that was a very rude comment and she needs to be reported and given some sensitivity lessons. How dare she say that. A nurse dealing with MSers should know better.

hugs,
Shayna

Natalie8, I've seen u're posts often enough to know to trust, your word and am so very sorry this happened to you. I am one who has invisible symptoms thank God.
I would not recommend fighting their system - let it go. One rude nurse is nothing compaired what could happen. You don't need the stress or drama.
Just take care of yourself and let it be. All My Lov Pink