Hi to all,
This is an exclusive club composed of people in the IIb extension study who are at least 10 days past receiving their third injection of the reel stuff.
Although I am starting this thread, I am not part of the club. I feel that this thread will be beneficial to people in the study, people considering the phase III study, and anyone interested in Tovaxin.
I would like to see study participant post only once and edit that post as their condition changes.
Little things matter; remember that my family posted that I was able to peel a shrimp. I don’t think shrimp peeling is going to be an Olympic sport, but if you had lost the ability to peel a shrimp and now you have regained the ability, that is something to be pleased about and worth reporting.
The information that would be useful in this thread will evolve as the parallel thread “Questions and responses to the 100 plus days club members” are posted. I hope that you will watch the questions that are posted and if it applies to your situation, please update your post. When you edit you post, please put a simple post at the end of this thread with your user name and that you have updated your post.
I am not around much anymore. So I would like to ask Bob to be in charge of keep a running summary of the questions that are asked.
Some things to include in your original post might be:
1. A general discussion on how you felt during the 12 months of the study.
2. Do you think you were on Tovaxin or placebo? Since you are now on Tovaxin there should be no more “I don’t want to say that I am feeling better in case I might jinx myself” feeling.
3. How have you felt from the end of the study until reaching the 100 plus days mark?
4. Now that you have reached the 100th day point after your first injection in the extension study, how are you feeling? If you were on placebo, it will take this amount of treatments and time to be at a point where your body has enough memory T-Cells and myelin reactive killer T-Cells to keep the number of MRTCs at or near zero. If you were on Tovaxin in the study, it will depend upon your MRTC activity level as to how many injections you will need to regain a sufficient level of immunity.
There will not be a flurry of posts on this thread. I assume that we will have about 10 out of the approximately 150 people in the extension taking the time to post. When you are feeling better, why spend time on the computer updating your situation. If silent positive results are not posting, that diminishes the possible hope that Tovaxin may be able to stop the attacks. It is like receiving service at a hotel. If 1 out of 10 people who are dissatisfied complain, only 1 in 1,000 will take the time to write a note saying the service was good.
Reminder: On the 100th day, don't expect your EDSS start plummeting. It took more than 2 years for my to decrease 2 points. I was 25 years old with lots of ogliodendrocytes still floating around ready to repair some of the myelin damage. It is known that people have active ogliodendrocytes well into middle age, but their numbers are declining. If after the 100th day, you do not have any more attacks (remember the 4-day rule), then Tovaxin has done its job. Regaining lost function is up to you and your body's ability to repair itself.
Some points to review. There will be a quiz later.
I never had an injection site reaction.
MRTCs, Masking/Suppressing, and Some Thoughts
I hope everyone has great disease reversal, but the bottom line is, if going forward, you are never worse than your worst day in the past, Tovaxin is working.
From what I can tell, the people in the extension study wake up each morning looking for what function they have regained today. I hope it works that way for everyone, but that is not what the hope for Tovaxin is. Its purpose is to stop the attacks.
If when you wake up each day, you do not sense any regained function, you can be disappointed in your body's inability to restore itself. If on the other hand, you wake up and are feeling more disabled than you were at your worst point, then you can be disappointed in Tovaxin.
Some things to consider if your are in the Tovaxin trials:
1. It isn’t an attack unless it lasts for more than 4 days.
2. I will not consider my EDSS to have changed unless it stays changed for 2 or more consecutive assessments.
3. I will remind myself that the hope for Tovaxin is to stop the attacks. Any restoration of lost functions is up to my body.
4. I will not expect to sense any difference until at least 100 days after my first injection of the “real stuff”, and it is possible that it might take 4 treatments plus 10 days for my immunity to get up to a sufficient level to fend off attacks. http://www.thisisms.com/ftopict-5631.html
5. If I get some lost function back and I lose it again, I won’t think that I am having an attack but rather, that the body needs to do some more restoration to the nerves that control that function. But, if I get back some lost function and that restoration lasts for more than 8 weeks without interruption, it is for real, and in that case, if you lose the regained function after 8 continuous weeks of having it, discuss that with your neurologist.
6. There may be a point during the 100 days that you sense things are starting to get better. Use the day before you get that feeling as your baseline. No matter what ups and downs you encounter going forward, if you don't drop below your baseline, Tovaxin is working.
7. This is a patient-specific vaccine and there are a lot of other patient-specific rules. And most important of all, results will vary