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Papa_Bear
Regular Member


Date Joined Feb 2006
Total Posts : 93
   Posted 3/16/2007 6:51 PM (GMT -7)   
Hello all,
 
 
   First thank you all for your response to my last rant about injection. I post toninght seeking your input. A few weeks ago while I was struggling so with my injections, I now am back on them, 6 in a row, I came across a clinical trial for an oral ms drug.
 
   I heard from them today. They are interested in me. Here is where it gets tricky. First I have to stop my current treatment for 3 months. Then I can start theirs. I may get one of two different doses of the drug or possibly a placebo for the next two years.
 
    Doing this, no matter which pill i got would provide data that could not only help me but all of you as well. That of course seems like a good thing. However if I got a placebo, or the drug was no good, the personal ramifications for me and my family could be devistating.
 
   So I am torn. I don't think it would be selfish not to do but at the same time I would love to do something that could have possative benifits far beyond myself.
 
   So there it is, what do you think. What would you do? Thank you all in advance for your input.
 
   Take care - Pete
"If you don't talk to your cat about catnip who will" - CCL 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/16/2007 7:26 PM (GMT -7)   
Hey Pete!

Congrats on 6 shots in a row!!! Wow...what a predicament, but u know, u have a whole family u'r taking care of. U'r already some way into this disease and two years is a long time to be without med potentially. Putting myself in u'r position, there's no way i'd risk further progression and loss to u'r family by doing this. I think it's fantastic that u want to make an impact on the ms community, but i would never want to see u do anything to u'r own detriment. Take good care and let us know what u decide.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Papa_Bear
Regular Member


Date Joined Feb 2006
Total Posts : 93
   Posted 3/16/2007 7:30 PM (GMT -7)   
Thanks for the input Rhonda,

I hear what you are saying and I agree, I am leaning away from this since I would never want to endanger my family. Though it is a tough call. Someone has to do the reserch. If it is any help to anyone, here is a link to the National MS society where I found the trial.

http://www.nationalmssociety.org/Research-2007Feb16.

Thanks again - Pete
"If you don't talk to your cat about catnip who will" - CCL 


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 3/16/2007 7:33 PM (GMT -7)   

Hi Pete,

    First off, congrats on getting past the injection problem!  That's an interesting dilemma you got there.  How exciting to be part of a potentially great option for MS patients.  I don't know though, not knowing if I would get the actual med and not knowing it would even work would frighten me a bit.  If I had a family and was sole provider, had the insurance and all I definately wouldn't do it.  The potential of the new med and being in the study would be exciting to me, but I don't think the risk of progression during that time would be worth being in it.  Just my opinion though, since you asked :-) Good luck with your decision and I wish you the best no matter which path you decide to take.

Kimber


 
Co-moderator for Multiple Sclerosis
 
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tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 3/16/2007 7:35 PM (GMT -7)   
I asked my neuro abou this and he said at my age he would not recommend it (I am 29). He did not think the risk of coming off my meds and possibly getting a placebo was worth the risk to me. However, what if you get the right stuff?? it would be worth it then... He also thought that being a mom to a toddler does not work well with these trials. I think you have to make a list of pros and cons and decide if it is worth it to you.... i think that is is a very brave and scary thing to do and whatever decision you make you have to decide what is best for you! good luck and let us know what you decide!!

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 3/17/2007 11:08 AM (GMT -7)   
I wouldn't do it! That is my opinion. I have a family, like you, that needs me! If I didn't have a family or I was older and my kids grown then I might do it.

I know how loving and selfless you are and you know how selfless you are! Let others out there do the trial that don't have as much to risk! I know this is a hard decision to you because you would like to help people and help find a cure or better drug. Just think of your family and how much you can help them by taking your injections.

Take care Papa Bear and I will be thinking of you!

Lysha
When everything's coming your way, you're in the wrong lane.


LadyEMT
Regular Member


Date Joined Feb 2006
Total Posts : 109
   Posted 3/17/2007 7:19 PM (GMT -7)   
hey Pete,

I was offered 2 studies. One was this new pill form of drug. My thought was, i just got diagnosed ms, and have an opportunity to put a road block in the way. Why take a chance on a phase 1 drug or placebo. so i elected the 20mg/40mg double blind copaxone study. im scared as heck to have ms, why would I make myself worry even more with a new test drug, or a placebo that wont help anything. i love to volunteer, but now that it comes to me, my health, my 2 boys, and a supportive hubby, I didn't take the chance. Just my thoughts. take care.

Hugs
Bonnie

P.S.
Happy St. Patties Day
Life Can Be A Challenge.... 
 Expect The Un-expected....
Live Everyday As If It Were Your Last.


Papa_Bear
Regular Member


Date Joined Feb 2006
Total Posts : 93
   Posted 3/20/2007 6:41 PM (GMT -7)   

Thanks for all the input,

   After carefull consideration we have decided the risk is too great. I would love to he;p the community but I have to think of my family.

 

   thanks again - Pete


"If you don't talk to your cat about catnip who will" - CCL 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/20/2007 7:46 PM (GMT -7)   
Hey Pete

I was just wondering about u and u'r decision today. I"m really glad u made the decision u did. U'r to be commended and thanked for u'r willingness to even consider taking part in this study, but as u said, u have to think of u'r family. Best wishes to u!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

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