whuggs1
10-10-2005, 03:29 PM
Hello,
I have a few questions..
(1) I’m 37 year old male and have just been diagnosed with MS. My neurologist wants to start me on Copaxone soon. He is offering me to participate in a clinical trial that will last 3 years and will include taking steroids and MRI’s both at no cost to me. Should I do the trial? I know my last set of MRI’s cost me $700 and INS paid the rest, so free would be good and my MS would be monitored (not that my MS is sever) Also not sure if taking the steroids is good or not.
(2) Can MS make you tired? And will taking Copaxone help? Just seems that I use to sleep more than I use to. Can sleep to 12pm on most weekends and use to always get up around 9 or so, also feel tired some days at work for no reason. Feel fine to :bouncing: day
Thanks,
Wayne(not looking forward to the shot thing)
jbozz
10-10-2005, 04:51 PM
Hey Wayne!!! I'm 33yrs old, diag. at 25, and also take copaxone and steriods. i would LOVE to be in this study!!! Free med. care??? WOW!!! DO IT!!! also...i'm tired alot too...it sucks,and i HATE the shot! steriods keep you awake, so be sure to ask for sleeping pills as well. MS makes you sleepy,and steriods keep you up....fun huh? good luck, and be sure to tell us all what you decide!!!! Bye Wane!!! jennifer b.
whuggs1
10-10-2005, 05:28 PM
Since I'll be on the copaxone anyways it's not gona be free,but hope the INS picksup most the tab. They also metioned something about compensation $$$$ :)
jennifer, do you use the auto inject ?
orngcrayon
10-10-2005, 08:59 PM
I am now on copaxone, I did the steroids too. Whuggs - I use the autoject for the backs of my arms (because they're hard to reach) but otherwise just do regular injection. I notice that I have more pain at the injection site when I use the autoject... I think because it's spring loaded.
But some days I just hate having MS so much that I don't like the idea of pressing the plunger myself - I use the autoject on those days too ;)
iluvsiamese
10-11-2005, 07:23 AM
I use copaxone daily and am on IV steroids for a 3 day stint right now. The Copaxone is great, but what is up with the steroids?(I'm assuming Prednisone) I've only used the steroids for flare ups... not on a regular basis. Steroids can be nasty business and you have to take short stints or be tapered off them when you quit. Many people have died from just stopping their steroids. It causes extreme heart damage if you just quit, and some people that are on long term steroid use for some reason their bodies seem to have a necessity for them after long term use and they can't be successfully weaned off of them, so I would question the steroid issue carefully, and find out how much and how often, which type, etc. Better safe than sorry, but with MS it's sad to say, but we all have to be Guinnea Pigs, lol. If they are saving you the 700.00 cost of MRI's though, that sounds like a definate plus. Good Luck and let us know what you decide!
whuggs1
10-11-2005, 12:16 PM
iluvsiamese,
The steroids (Prednisone) or similar are taken for 5 days and then not again for 4 weeks, then 5 days again. The company that makes the Copaxone is doing the study to see how well both work together. Both the Copaxone and steroids can be bought separately and taken for MS , but they want to make it A package deal where you get both if it works well. I'll know more when I get the paper work to look over.
For thoes of you on Copaxone how much is your co-pay for it ?
I'm gona go ahead and do it ! oink oink :D
whuggs1
10-13-2005, 02:29 AM
Ok got the paper work on the study, there will be 2 groups.
group 1 will take regular Copaxone shots daily and get 1250 mg a day of pred for 5 days and then off for 4 months.
Group 2 will be the same as group 1 except will get a placebo instead.
You will not know what group you will be in or what you are getting, neither will the study doctor. Only the company funding the study will know (Teva Neuroscience)
After reading how much pred you have to take (not knowing if it is pred or not) and reading all the things that can happen while taking the drug
(I know they have to list everything by law) but is scary, I'm not sure I want to do it. Just the first screening to see if I even qualify is a lot...
If anyone is interested in finding out more about clinical research study here are a few web sites.
www.clinicaltrials.gsk.com
www.findclinicalstudy.com
www.clinicaltrials.gov