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Sweetyhide wrote:Hi Av8rgirl!
Good to see ya over here and glad to see you made it through the year!
Thanks! Now the wait begins again!
I just hope I can get through the next couple of weeks ...
Someone mentioned on another thread about being one of the few who had an exacerbation while in the study. I was also one who had an exacerbation...one of the worst ones I have had in 3 years...took me a over a month to recupe...then I had another one 5 months later but it was infection induced...not treated with steroids.
I hope you hear something soon Sweety!
Let's get this ball rolling for the next step!
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
Hello to everyone. I am glad to have found this site and want you to know it is helpful to read about everyone. I am just starting to read all the responses on this topic and I thought I would post before I got into it (with so many, it looks like it will take a while).
I have just been kicked out of the study. I started a year ago (Mar '07) because I cannot take any of the CRAB drugs. I had everything going for me and after a difficult year-daughter graduating high school, husband away for job for 3 months, loss of a beloved pet of 11 1/2 years due to sickness, going overseas to in-laws for Christmas for the first time, and many more things-I never had a single physical problem.
I had depression and emotional stress that goes with being in a trial (and life) and not knowing if you are getting the real thing or not. But Zoloft took care of that and I felt all was well.
Then last month, I went in for the conclusion and beginning of the extention and was told I was no longer in the trial. The doc said only 2 reasons to be kicked out- bad reaction to medication or MRI progression. I never had ANY reaction or problem with the shot, felt I was doing better, and then this.
I am interested to read how people that have exacerbations can continue in the trial when I did not have what I consider one (except from an MRI?).
What a blow! I feel for ya.
I am so sorry about what happened.
From your description it makes a mind wonder what happened exactly.
The thing is we wont know for some time.
I also would like to know what state, if you care to share.
Thanks for the welcome. I am in Alabama. After starting to read the posts, and I am just on page 2, I realized I forgot to add that I had a bout of bronchitis while I was overseas (Dec '07) and had to get on antibiotics. Since then, I have had sinus infections and had to get on antibiotics twice more. I have not been on antibiotics in a long time.
Also, what is "flagyl" when they talk about a flagyl pulse imposed flare-up? I have never heard of that.
Hi deege and Chris,
Nothing is conclusive until the evidence supports it, but it's looking more and more as if the Alabama clinic and Opexa had a disagreement.
It doesn't make the situation suck any less for you deege, but don't beat yourself up over thinking that being removed from the trial involves something specific to you.
Deege wrote:Then last month, I went in for the conclusion and beginning of the extention and was told I was no longer in the trial. The doc said only 2 reasons to be kicked out- bad reaction to medication or MRI progression. I never had ANY reaction or problem with the shot, felt I was doing better, and then this.
Here are some thoughts that I had on this situation. I don't know if they're valid, or if that ever might be known, but they might be something to consider. If there wasn't a problem systemic to the entire trial site as Lyon suggests, then the following could be an explanation. If your MRI showed progression and you were on placebo, then they might want to keep you around for the extension study to see how you would do on the real thing. However, if you were on the actual treatment and still showed progression of the disease via MRI, then they might have little incentive for keeping you in the extension study since it was already known that you weren't responding well to the treatment. In either case, it's good to hear that you're doing better and I hope that you can find something so that you'll continue to experience improvements.
NHE
Last edited by NHE on Sun Apr 13, 2008 11:36 pm, edited 1 time in total.
NHE wrote:However, if you were on the actual treatment and still showed progression of the disease via MRI, then they might have little incentive for keeping you in the extension study since it was already known that you weren't responding well to the treatment. In either case, it's good to hear that you're doing better and I hope that you can find something so that you'll continue to experience improvements.
That is interesting NHE and maybe I discounted that scenario too quickly.
Basically, everyone that Opexa kicks out of the trial lowers the documented effectiveness of Tovaxin for the trial....right?
Bob,
Not only does it make one wonder if losing trial participants is the best measure of Toxaxin from Opexa's standpoint, it is also starting to make me feel like I am on death row getting closer to the day I take the "long walk".
Lars
Lars wrote:it is also starting to make me feel like I am on death row getting closer to the day I take the "long walk".
Hi Lars,
I hope things are quite THAT bad, but it does make you apprehensive about what you're going to find out and when.
Evidently Lews getting his first injection of the extension means that he hasn't transformed to SPMS, which he's suspected from time to time in the past.
And I hope, and this is a first for me, that I'm DEAD wrong! My trial coord. is the one that told me that and not my neuro. He's also the one that told me I had lots of arthritis in my spine and my neuro. just laughed. He said that the arthritis in my spine is at about the point where any 41 year old that didn't live in a plastic bubble would be. My research coord. is a really nice guy, but he's only like 23 years and is a bit nerdy so he probably says all kinds of stuff he's not supposed to. The Dr. told me that he had considered the possiblity of me being SP since I never seem to have any periods of remission, but I also don't seem to progress rapidly. And since I've had some definite relapses this last year, he says I am RR. So he apparently never said he 'suspected' it, but rather that he had thought about it as a possibility and that I could be right there, but am not yet.
Man the things we are forced to think about in a blinded trial. I had no idea.......
Thank you for all the responses. And Loobie, I love your quote at the end of your posts.
I also forgot to mention that I went from a 3 1/2 to a 2 on my EDSS. They told me that all the info would be released in November. I am definitely looking forward to knowing how my MRTC's responded to the vaccine (as well as my white blood count numbers). And when they started seeing MRI activity. And how it all correlates.
My last "shot" was in August and I thought maybe it was just I needed a booster sooner than others. And Loobie is so right about the thoughts that go through your head being in a blinded trial.
Being fairly new to this site, I am wondering how you all get the information that you do. I seem to be totally clueless about all of this. Maybe that's a good thing!
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
Being fairly new to this site, I am wondering how you all get the information that you do. I seem to be totally clueless about all of this. Maybe that's a good thing!
Hang out around here for a while and these insightful people will have you spitting out a plethora of information and opinions to your neuro and anyone else interested in your health. I feel like this site is my "headline news" for ms and then some. It blows away any other medium of information that I've found. More timely information and by those of us in the trenches.
av8rgirl,
I remember thinking when I found this site that I had done a ton of research and was fairly well informed. I, like you, was astounded to find so many people with so much information. I can't explain it, but there is a wealth of information available here. My Neuro even visits. What ever inspires these members commitment, take advantage of it and appreciate the fact that they have worked so hard. Oh, by the way, we have no lives.
PS In case I have said it enough, thanks to everyone!
Lars
