NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   Clinical Trial(s): CDP323 (oral) anyone? (https://www.neurotalk.org/multiple-sclerosis/48426-clinical-trial-cdp323-oral.html)

Dejibo 06-21-2008 07:39 AM

Clinical Trial(s): CDP323 (oral) anyone?
 
I was doing some research because I truly believe Copaxone isnt turning out to be a good drug for me. I have a July MRI and will find out soon. So, I failed interferons, and was kind of panicked about what to do next.

I found Clinical Trial(s): CDP323 (oral; inhibits VLA-4, a protein that allows immune cells to enter the brain) RRMS AND SPMS

http://www.connect-to-ms.com/

It is a pill. it is supposed to work "Like Tysabri" according to the nurse who finally called me.

I answered the questions a couple of weeks ago. On Thursday a drug company rep called me to apologize for taking so long to get back to me. That they had not forgotten me, and Becky from Dr. so and so would be calling me in the next couple of days to get me started. She was a clinical co ordinator for this drug trial in Rhode Island. Becky called not 10 minutes later. RUSHED as all get out. Speaking in a machine gun fashion, she was ready to pop a pill in my mouth that moment. I said WAIT! You are rushed. I am in the middle of 12 things at once. Lets schedule a time to talk on the phone, and lets answer each others questions. She thought that was great, as she was drowining in things to do, and I could feel her buzzing through the phone. I dont want her distracted. I want her paying attention. She agreed to call back Friday between 1 and 2 pm EST. I waited and waited. NO call. Grrr...

I have TONS of questions for her. I want to know LOTS of things. I understand that she is probably very busy, but dang! at least call me when you say you are going to and reschedule.

So, I am frustrated with the response I am getting from these people. IF I cannot take Copaxone, what will I do? I cant do interferons, nor ty itself. Fingolomoid is out because I had a pre cancerous mole removed. I also have a history of breast cancer. so, I wanted to be VERY Sure all those questions were answered by these people, but so far, I cant get anyone to call me to talk about them.

Anyone else doing this? have a better response?

mom23angels 06-21-2008 08:55 AM

Sorry I can't answer any of your questions. I am in the process of waiting back from the Fing. study about my MRIs and records and see if I qualify to have testing..then I'll have 2 more months till the Betaseron completely leaves my system and I can take the pill. So the only thing I can say.. is you'll need a 3 month window (at least in my case) to have the current DMD meds out of your system before they'll give you the oral stuff. I guess so it doesn't skew the results. I wish you the best of luck!! :)

Dejibo 06-21-2008 09:26 AM

that did make me feel better. I was worried that they would be in a hurry to get me to take those pills NOW. I am glad to know there is a wash out period.

ewizabeth 06-21-2008 12:34 PM

I was going to enter this trial but I would've been off meds too long waiting for the trial to begin so I passed. My neuro also said it's like Tysabri, but in a pill form. If it gets the same results as Tysabri it should be a landslide hit! :) It would be cheaper since it's a pill and have a shorter half-life in case there were problems!

And yes, the hurry up and wait is common for clinical trials. If you decide to participate, let us know!

mom23angels 06-21-2008 12:49 PM

Wiz,

Know what the sick thing is.. I asked Dr. Ben Thrower at the MS Expo about the Fing. study and what he thought the availability and financial aspect would be of these oral drugs when they come out to the general public. He thought because it's supply and demand and MS'ers really want an oral medication that they could be just as expensive as the shots...wtf.. I was hoping it would be on Walmarts $4 list :D

ewizabeth 06-21-2008 12:57 PM

Well I hope Dr. Thrower is wrong. :mad: That just wouldn't be right. You know that the production wouldn't be as expensive for them. I can see them being expensive to make up for the R&D expenses over the years, but not THAT expensive.


All times are GMT -5. The time now is 12:14 PM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.