Av8rgirl's results on Tovaxin - Phase IIb
Posted: Wed Oct 15, 2008 3:35 pm
I started the screening process for the Phase IIb trial in Jan of 2007. I received my first vaccine in March and the last vaccine on 9/21/2007.
In July of 2007, I had a major exacerbation which was treated with 3 days of IVSM.
The trial ended for me on April 1, 2008. Two weeks later, I had another exacerbation which was treated with 3 days of IVSM.
I was dx'd with RRMS in March of 2001 after my second exacerbation in 2 months. Since that time, I've had a history of 3-4 exacerbations year. My MRIs showed lesions in my brain only but 2 neuros are convinced that I have one on my spine that just isn't showing up on MRI b/c of my symptoms.
I started on Betaseron in May of 2001. In 2003, I added subQ Methotrexate to the Beta for a year to see if that would stop the 3-4 month relapse cycle. That experiment failed. We also tried pulse steroids for a year prior to that time and that failed.
In January of 05, I started on Tysabri and had two infusions of that before it was pulled from the market. After waiting for 4 months, I started on Copaxone and had a bad reaction to it so stopped that.
The 3-4 month relapse rate continued, no matter what. I started looking for clinical trials, different treatment options, and continued with pulse steroids. That's when the Tovaxin trial became available.
I went from 3-4 exacerbations a year to one. 75% reduction. In addition, spasticity was more manageable, almost negligible, cognitive issues were almost non-existent, bladder problems (retention) were no longer a problem, dexterity in my left hand was better (I am right handed), I did not notice any difference in fatigue but I have decreased the provigil from 400mg daily to 200 mg daily, decreased pain meds for neuropathic pain from daily to once or twice a week.
I am now starting to go back to my MS issues pre-Tovaxin vaccine. Fatigue is taking over. I am once again battling spasticity and my left hand is not being very cooperative. I am having trouble with my eyes, nystagmus, to the point that I am seeking a referral to a neuro-opth, and the neuropathic pain is knocking at my door again.
I have tested negative for MRTCs at least twice since April 1, 2008, and am currently waiting for the results of redraw #3.
I consider myself a success story for Phase IIb. As I have said in other posts, this is the first drug that has worked for me since my diagnosis to slow down the relapse rate.
I don't know the scientific reasons for this, some of you are more in tune with that data than I am and have been given a lot more information from your PIs than I have.
My only hope is that I can continue in the trial. Otherwise, it's more steroids for me and probably very soon.
In July of 2007, I had a major exacerbation which was treated with 3 days of IVSM.
The trial ended for me on April 1, 2008. Two weeks later, I had another exacerbation which was treated with 3 days of IVSM.
I was dx'd with RRMS in March of 2001 after my second exacerbation in 2 months. Since that time, I've had a history of 3-4 exacerbations year. My MRIs showed lesions in my brain only but 2 neuros are convinced that I have one on my spine that just isn't showing up on MRI b/c of my symptoms.
I started on Betaseron in May of 2001. In 2003, I added subQ Methotrexate to the Beta for a year to see if that would stop the 3-4 month relapse cycle. That experiment failed. We also tried pulse steroids for a year prior to that time and that failed.
In January of 05, I started on Tysabri and had two infusions of that before it was pulled from the market. After waiting for 4 months, I started on Copaxone and had a bad reaction to it so stopped that.
The 3-4 month relapse rate continued, no matter what. I started looking for clinical trials, different treatment options, and continued with pulse steroids. That's when the Tovaxin trial became available.
I went from 3-4 exacerbations a year to one. 75% reduction. In addition, spasticity was more manageable, almost negligible, cognitive issues were almost non-existent, bladder problems (retention) were no longer a problem, dexterity in my left hand was better (I am right handed), I did not notice any difference in fatigue but I have decreased the provigil from 400mg daily to 200 mg daily, decreased pain meds for neuropathic pain from daily to once or twice a week.
I am now starting to go back to my MS issues pre-Tovaxin vaccine. Fatigue is taking over. I am once again battling spasticity and my left hand is not being very cooperative. I am having trouble with my eyes, nystagmus, to the point that I am seeking a referral to a neuro-opth, and the neuropathic pain is knocking at my door again.
I have tested negative for MRTCs at least twice since April 1, 2008, and am currently waiting for the results of redraw #3.
I consider myself a success story for Phase IIb. As I have said in other posts, this is the first drug that has worked for me since my diagnosis to slow down the relapse rate.
I don't know the scientific reasons for this, some of you are more in tune with that data than I am and have been given a lot more information from your PIs than I have.
My only hope is that I can continue in the trial. Otherwise, it's more steroids for me and probably very soon.