It appears that your MSWorld session has not been initiated or has expired. To renew your session, please click here, then click 'Logout' on the right hand side and log back in again.

Go Back   MSWorld Forums > MSWorld Message Boards > Medications & Treatments > Gilenya
Register FAQ Calendar Guidelines Mark Forums Read Login

Gilenya For discussing the first oral disease modyfying drug, Gilenya.

Reply
 
Thread Tools Display Modes
  #31  
Old 01-12-2011, 08:23 PM
sjpaddock's Avatar
sjpaddock sjpaddock is offline
Registered Member
 

Join Date: Dec 2010
Location: South Carolina
Posts: 165
Question Washout?

You mention a three month washout. What is this? I had my last ty last Tuesday and have not heard anything about a washout.
__________________
I may have MS but MS does not have me!
Reply With Quote
  #32  
Old 01-13-2011, 07:46 PM
Just a small town girl Just a small town girl is offline
Registered Member
 

Join Date: Dec 2010
Location: Indiana
Posts: 373
Quote:
Originally Posted by Scooter24 View Post
People- please contact the drug co for co pay assistance, I keep hearing people complain about the costs, from what I understand you are covered for copay assistance with an income of 5 times poverty level which is well 60,000 per year. All drug companies offer this and will help you, I pay 10.00 per month for my ty and 40 for Ampyra with a household income of over 50,000. Please call and check the most they can say is NO. Novaris has a a copay porogram as they want this drug out there to as many people as possible.
Just to clarify, here's the story with Novartis' co-pay program. If you DO NOT HAVE INSURANCE and make less than 500% of the poverty level then you will get the drug for free. (I'm not sure if there's a time limit on this.)

If on the other hand you have insurance, then you will get up to $800 of your co-pay through December of 2011. So if your co-pay is $900, you'll pay $100 but if it's $500 then you'll pay nothing through December of this year.

I don't think they deviate from this, but it'd be worth a shot.
Reply With Quote
  #33  
Old 01-16-2011, 09:17 AM
Kara10 Kara10 is offline
Registered Member
 

Join Date: Dec 2006
Posts: 34
The information is located in the Copaxone Prescribing Information at the Shared Solutions website. If you look at the graph entitled "time to second exacerbation" under the Clinical Studies (Section 14), you can compare the Placebo Line to the Copaxone Line. Up until 180 days (six months), they are almost identical. At 180 days, you can see the efficacy of Copaxone begin to significantly diverge from the Placebo. Prior to 180 days, the Placebo Line and the Copaxone Line are virtually the same. If you look at figure 2 entitled "Median Cumulative Number of Gd-Enhancing Lesions", you see a similar pattern between Placebo and Copaxone although not as strong as in Figure 1.



Quote:
Originally Posted by Redwings View Post
There doesn't seem to be any reliable information that supports that, putting it into the realm of urban myth. None of the documentation for Copaxone mentions anything about a "build-up" period, let alone the 6- to 9-month figure floating around the Internet. I've never been able to find anything in the medical literature that supports this theory, either. If anyone can cite a reliable source, please speak up because a lot of people would like to know.
Reply With Quote
  #34  
Old 01-16-2011, 09:26 AM
Kara10 Kara10 is offline
Registered Member
 

Join Date: Dec 2006
Posts: 34
The use of chemotherapeutic agents increases the risk of developing PML by four times. I got this information from a Medscape article:

http://www.medscape.com/viewarticle/730736

According to the article, from the STRATA trial three of the 4 PML patients had immunosuppressive pretreatment, which increases the risk for PML about 4-fold over patients without immunosuppressive treatment.

Quote:
Originally Posted by JavaJunkee View Post
Kara, my history is the same. Have you come across an actual statistic regarding how much the past Novantrone use increases the odds of contracting PML?
Reply With Quote
  #35  
Old 02-23-2011, 05:10 PM
laurasari laurasari is online now
Registered Member
 

Join Date: Nov 2003
Location: N.J.
Posts: 247
I was wondering how long the wash out period was. I am going tomorrow for my 32nd Tysabri infusion. I just learned to day i am JC virus positive from the nurse doing the study. My neuro says if i am positive we need to think about Gilenya. I am waiting to hear from him. He said he needs to find out how long you need to be off one and also who administers the first dose amd watches you for 6 hours. I think he had some other questions as well said he would look into it if i was positive.

Good luck to all
laurie f
Reply With Quote
  #36  
Old 02-24-2011, 03:41 PM
shalimar shalimar is offline
Registered Member
 

Join Date: Jul 2005
Posts: 99
Laurasari - I am going on to Gilenya at the end of March, and have had to be off Tysabri for 6 months. Right now I am off of Ty since Sept. 29, 2010 and am really starting to feel it now, being off of any MS meds this long. I was on Ty for almost 3 years, and my doctor had one of his patients develop PML so he pulled everyone off of Ty and steered them towards Gilenya.
Reply With Quote
  #37  
Old 02-24-2011, 04:29 PM
laurasari laurasari is online now
Registered Member
 

Join Date: Nov 2003
Location: N.J.
Posts: 247
Thanks so much for respondiing. I've read 3 months and 6 months wash out period. I tried calling the people at the web site every thing i asked was thats up to your DR. There si no prtocol. I am used to Ty where everything is protocol. How many of the pre tests did you do? they told me EKG blood tests Eye exam and the others are all up to the Dr. I told them i have asthma is there anything i need to do, again its up to your dr some get an inspiration test i think i said that wrong but close.
Good luck hope it works oout for you . I think i would be afraid to go off meds for 6 months. I really am more nervous over this med than my present Tysabri.
Take care
laurie f
Reply With Quote
  #38  
Old 02-24-2011, 06:59 PM
laurasari laurasari is online now
Registered Member
 

Join Date: Nov 2003
Location: N.J.
Posts: 247
Shalimar i hope you dont mind i hae 1 more question where r u doing your 6 hours my neuro says he has no facility for that. That was ther only thing gilenya offered to help on. they said Dr should have access to infusion location if not they would help find one. Hopefully i would be able to go where i get my Tysabri.
Thanks again
laurie f
Reply With Quote
  #39  
Old 03-01-2011, 04:57 PM
laurasari laurasari is online now
Registered Member
 

Join Date: Nov 2003
Location: N.J.
Posts: 247
Spoke with the dr today. He told me he is very concerned about the washout period from Ty to Gilenya. He will put me on Copaxone from week 5 till its time to start the Gilenya. The dr said the washout time from Tysabri to Gilenya is 3 months so the end of may is our start date asumming i get all approvals. The gave me script for ekg and lots of blood work. I went to eye dr last week so had him seend in a note to include no macular edema.

good luck to all
laurie

by the way my nurse had never done the Gilenya before but another had and said approval from Gilenya took 1 week.
Reply With Quote
  #40  
Old 03-02-2011, 06:45 AM
04blackcobra 04blackcobra is offline
Registered Member
 

Join Date: Nov 2010
Posts: 100
my neurologist told me that it takes at least 3 months for the effects of tysabri to wear off so in my case we did a 3 month washout. I did not go on any other meds during the wash out. I have now been on the gilenya for about 3 weeksand doing okay.
Reply With Quote
  #41  
Old 03-02-2011, 01:58 PM
shalimar shalimar is offline
Registered Member
 

Join Date: Jul 2005
Posts: 99
Laura - I will be sitting in my doctor's waiting room for 6 hours (won't that be fun!)
Reply With Quote
  #42  
Old 03-11-2011, 03:37 PM
laurasari laurasari is online now
Registered Member
 

Join Date: Nov 2003
Location: N.J.
Posts: 247
Shalimar
The nurse that has other patients on Gilenya told my nurse i have to travel 1 hour to north jersey for my 6 hours. That means another hour back if no traffic that's a very long day. I tried to find out if there might b someplace closer but they wont talk to me because we have ot put the paper work in. That's a long ride back if you don't feel good.

Take care
laurie
Reply With Quote
  #43  
Old 03-12-2011, 05:28 AM
0485c10 0485c10 is offline
Registered Member
 

Join Date: Apr 2007
Location: XXXXX
Posts: 1,802
THANK YOU Kara10

Reply With Quote
  #44  
Old 03-13-2011, 01:27 PM
shalimar shalimar is offline
Registered Member
 

Join Date: Jul 2005
Posts: 99
Laura, everything connected with treatment for this disease is a total inconvenience. I finally got all my tests done, which took me to 3 different specialists in 3 different directions and now I have to wait for Novartis to get back to my neuro. Since not being on any MS med for 6 months I am really feeling the difference and hope they put this thing together soon. Will you at least have someone to drive you to and from the place where u get your first pill?
Reply With Quote
  #45  
Old 03-14-2011, 06:38 AM
laurasari laurasari is online now
Registered Member
 

Join Date: Nov 2003
Location: N.J.
Posts: 247
Shalimar

because it is so far i have noone i can get to drive me . If it were close i would have one friend drive me one way and another pick me up. My husband works out of state and i will go after first week on the med 2 of my kids are married and don't live near me the third works and goes to school.

My eye drs appointment had coincidently been done just 1 week before i new i needed it for this drug so i just needed a note sent. I have a schedualed appointment at my cardiologist so i will ask him to do the EKG. Usually he does it every Sept but that is to old. I will go to the lab in April for the lab work.
Good luck
hope you start soon.

The nurse at my drs office expects it to take 1 to 2 weeks so says i cant go 4 the blood till mid april. I sure hope she is right i need to be in Cape Cod by Memorial Day weekend.

please keep us posted.
laurie f
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT -6. The time now is 12:31 AM.