This Is MS Multiple Sclerosis Knowledge & Support Community

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Bob,

Thanks for updating us. I wish more people would give us updates on how they are doing with the Tovaxin trial. Hint! Hint!

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I can give a quick update. I draw my bag of blood for the extension on the 27th. of this month. I can't freakin' wait. I just got done with a nasty relapse. I took the entire week off of work and spent almost two days on the couch because my legs were so weak. I had to take another MRI, but this one was for my Dr. to look at. He wanted a look since I have had basically all my attacks I could really feel this year. I started coming out of it Saturday evening. It was the worst one I ever had. It had never put me down like that (I know I have a lot farther to go down, but this was a new for me) and it was the first time I definitely knew I had a relapse. I didn't call the Dr. all week, but finally had to give in. I DO NOT want to go on steroids, but I can always refuse them. I don't think they'll want me to take them anyway since I'm on the upside of it. They won't inject you when you are having a relapse anyway, but I'm probably two months or so from actually getting the injection and if I'm coming out of it now, I should be fine for the extension.

I am convinced I'm on the placebo. There is no earthly way of me knowing, but this year has been my worst for the last 6 years of having this. I am really excited about the upcoming extension. I will know for sure then. I don't know if they unblind us or not, but I would imagine there would be no reason to keep you blinded. Maybe they wait until everyone is done, but I will be getting the real thing for sure, so it doesn't really matter to me. I just want to be taking something instead of taking nothing for so long. If I'm getting it it's either a) not working for me or b) keeping something really screwed up at bay. I don't hope for either one, but I'll know for sure soon!

So, for me, it has sucked compared to my mild disease course for the first five years. However, the tovaxin is not to blame, especially if I'm getting the placebo. MS is just kicking my butt right now and I can't wait to get Tovaxin. I know it's just a theory, but it seems to be working for a larger percentage than the CRABs and, from what I've read, there are no side effects to speak of. I have no idea if the upcoming date has me in such anticipation that I triggered my own relapse, but since I am so damn neurotic right now, I wouldn't doubt it !

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Thanks Bob,

I agree about the relapse thing but one time when I was feeling bad they kept asking me over and over if I thought I was having a relapse. When I asked why they said that they could not give me my dose if I was in the middle of a relapse. I think they can draw blood during one, but they won't dose you. My "sessions" always lasted two days; first day MRI and EDSS evaluation, second day come in and get dosed. My office would not release the drug from Texas on the first day for overnight delivery unless I was not in a relapse. They made it a point to tell me that since one time my EDSS went up a point and they said we have to know so we don't ship the drug up here and then not be able to dose you. Prior to that there was no mention of that, but I had also not ever suspected a relapse until that point.

We ended up determining that I probably had just had one and that it was more than likely over, so they shot me anyway. I go today at 2:30 to see my MRI results from Friday. Once again, I can't necessarily do anything even it shows a bunch more lesions, but my Dr. wants to know if I'm "loading up" on lesions since I've seen such a decline this year.

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Hi to all,

Last week, I received injection number 19, and there was no injection site reaction.

Hi to all,

Last week, I received injection number 20, and there was no injection site reaction. My extension protocol is 5 treatments occuring every 8 weeks, and then reevaluate after that.

Hi to all,

Last week, I received injection number 22, and two months ago, I received injection number 21. Since I receive an injection in each arm, you could say that I have had 44 injections of Tovaxin and have never had an injection site reaction.

You might wish to reread my first post on this thread http://www.thisisms.com/ftopic-3409-0.html I don't know if I should be pleased, disappointed, or indifferent about injection site reactions. It is possible that redness at the injection site is a sign that antibodies were attacking the attenuated myelin reactive T-cells from the vaccine and causing the redness at the point of injection, but it is also possible that your arm didn't like getting jabbed.

I have never had any sort of feeling from an injection. If you feel achy or flu-like, you should not take NSAIDs. A recent report noted that the use of NSAIDs after receiving a flu vaccination diminished it effectiveness. Since the expected immune response from Tovaxin is the same as the response from the yearly flu vaccine, I assume that NSAIDs would have the same diminishing effect on Tovaxin.

If you are going into the extension study, you should read my post http://www.thisisms.com/ftopict-4868.html There is a buildup period where each successive dose of vaccine stimulates the body to produce more T-cells to eliminate the MRTCs. Each injection also stimulates the immune system to produce memory WBC that continue producing the T-cells that remove the MRTCs as the body mistakenly produces them. You will start building protection with the first injection, but it may take 3 injections to get your immune system up to a level that can handle any large output of MRTCs, an attack.

This is from my website explaining the injection site reaction that I though I had.

March 31, 2005 Three days after Tim received his injection, he removed the little round Band-Aid and discovered that there was redness at the injection site. Dr. Zhang had told Tim that about 20% of the people that he treated in the late 1990s had a reaction at the injection site. The redness was possibly a sign that the army of antibodies were attacking the attenuated myelin reactive T-cells from the vaccine and causing the redness at the point of injection. We were all delighted to see this. It would be 6 months before Tim would receive another injection, and at that time Dr. Loftus realized that the redness was from the Band-Aid and not from any battle between the protective T-cells generated by the vaccine and the injection of attenuated myelin reactive T-cells. Since plenty of time had passed since the original post, it didn't occur to us that we should go back and correct this erroneous observation. Tim has never had any redness at the injection site caused by a reaction to the vaccine. Tim has shown us some websites where people who are getting into the current study are hoping to see redness at the injection site, and he is concerned that if someone in the study does not see redness at the injection site, they will assume that they are in the placebo group. It should be obvious from Tim's experience that people in the study could see redness caused by a reaction to the Band-Aid or see redness caused by a reaction to the vaccine. The vast majority of patients should not see anything. If you know someone who is in the current study, please point this out to him or her.

This is the remainder of the post from 3/31/05 and the picture of the Band-Aid reaction. Notice how it has the outline of a little round Band-Aid. Tim will have his blood checked 4 months from now to see what level of myelin-reactive T-cells is present. A person with MS will continue to produce these bad T-cells, but by evaluating their blood and giving them the appropriate vaccine booster, the amount of myelin-reactive T-cells will approach zero and the destruction of myelin will stop. By analyzing the patient's blood every 6 months, the scientist is also able to look for any epitope (we are not going to try and explain that) shifts in the bad T-cells. The person's vaccine is constantly monitored and adjusted to keep the disease from ever doing damage again. This is personalized medicine. AUTOLOGOUS (the donor and recipient are the same individual) treatments have very little safety concerns, have no rejection problems, and are patient specific. For common short-term diseases, the one size fits all types of treatments are effective, but for autoimmune diseases, various types of cancer, and a host of other diseases, making the treatment using the patient's own cells is a medical missile that is programmed to seek out and destroy the problem.

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I couldn't even find the area if it weren't for the 'sharpie circle' they draw around it! Today is my 100 days, and actually, if things stay static until Saturday I've got something really good to report. Nothing earth shattering, but you know I live by that 4 day rule and won't post until I'm convinced because of the big letdown that happens if I post and the good stuff goes away. Here's a hint; I've only woken up 3 times at night.........for 3 days in a row! Details to come Saturday (hopefully).