This Is MS Multiple Sclerosis Knowledge & Support Community

IHaveMS-com wrote:Hi Jane,

It would be good if you posted the same improvements that you posted on the other site. That would give people the opportunity to read about the specific improvements you have had and possibly ask you some questions.

Okay, if I can find the right thread...

IHaveMS-com wrote: ... I assume a lot of people watch the postings here, and some did not fit the protocol for the IIb trial. I will paste in here the same thing that I mentioned on the other site.

If you would like to see the protocol changed for the phase III study, you might look at the protocols that were used for the CRAB drugs and other approved MS drugs. If the age or EDSS span was greater for any of those drugs, present that information to the neurologist at the study site and ask him/her to send this information on to Opexa for their consideration. Please, please, please, won't make anything change, but supportive information might.

I'll definitely make a note to myself and start putting together a volume "for their consideration." Good thinking--written declarations (with copious citations) always go further than chats!

Hi everybody.
At the end of May I received the first vaxination of the re-treatment series.
I was given the middle dose (30-45 million) and had very mild injection site reactions when compared to vaccine #3 and #4. On the left arm it was no larger than a nickle. On the right arm as large as a silver dollar coin. (appx. 1.5 in across). Both were gone in 3-4 days.
I had a few better days after the vaccine but overall no big changes, although I would say that I am better now than before the shots. The changes are very subtle. Summer is here and as the temps rise so does my dissability. I am very heat sensitive.
Soon I'll be heading down to Houston for vaccine #6.
• Janethe"love", I would be very interested in reading more about your experience.
Thanks

..

Bob,
At the end of June I'll be receiving the 2nd vaccination for the re-treatment series. This will be shot 2 out of 3 of the series. Why do you ask?

..

HavingMS,

The numbers are stumping me I think. You get your second shot but will soon go down to Houston for the 6th shot? Maybe I am really confused.
I have significant cognitive issues and I just cant sort out what you mean.
You were in the phase 2 and now you are in phase 2b? Is that what you mean by re-treatment?

be well.

To clarify things...
I am in the phase IIa study for the Tovaxin vaccine.
The first year of this study included 4 vaccinations at my particular dose which was about 90 million cells. That was the highest dose in IIa.
Now I have entered the second year of the study that is called the re-treatment period. In this year I will receive 3 vaccinations.
By the end of June I will have received 6 of the 7 vaccinations that will be administered in the first 2 years of the study.
Its not very important. Maybe the confusion is coming from not understanding the difference between IIa and IIb phase of the Tovaxin study. They are 2 totaly different studies. Each one of them is looking at different things.
IIa is attempting to establish the correct dose. IIb includes the placibo and is seeing if the vaccine is working.
Yes, Bob, I am getting the same vaccine with persons receiving the "real thing" in the phase IIb study. All of us should be getting the latest (around 100 epitopes) vaccine.
I am glad to answer specific questions if I can.

..

I haven’t posted on this thread yet so I just wanted to do this now

• When did you receive your first vaccination?

April 26, 2007

• What dose did you receive? How many millions of cells?

Mid-dose ->30 to 45 million cells...or a placebo

• What was your overall experience? Did you get better or worse?

I'm pretty much the same. I've seen no improvements in any of my symptoms and there has been no change in my EDSS. The only change I can think of is that in the last 4 days, I had mild pain in a leg and in one arm and there is no other explanation I can think of aside from ms. So far, pain has never been a symptom for me (intense fatigue and mild dizziness are the symptom that had/are having the greatest impact in my life) Maybe pain will be a new symptom for me. I will give an update again in a few months.

• What side effects did you notice?

None whatsoever and no injection site reactions so far.

..

Lyon wrote:Thanks for posting flipflopper,

When the immune system attacks the thyroid the hormone levels can either rise or fall and bring a wide range of problems.

My wife had been complaining of achy legs and arms and joints. At about the same time my wife had her first Tovaxin injection, her D.O. noticed that her hormone levels were low and put her on synthetic thyroid hormones so I can't say with certainty what ended the aching, but one of them did.

Thyroid problems go hand in hand with the other autoimmunes so you might want to have your levels checked??

Bob

Bob,

I agree that it is always a good idea to try to find other explanations for your symptoms before concluding that everything is caused by ms.

..

Bob,

Why do some doctors say MS is an autoimmune disease and others a metabolic disorder?

Autoimmune diseases do seem to run in families. My husband's nephew had childhood RA; daughter has Graves; sister also has MS; and so on. Funny thing is that neither of his parents or his parents' siblings (that we know) had autoimmune problems. Why is it more prevelant now - diet, processed foods, parents' smoked...

But, if I think about it, almost every family has some autoimmune disease - be it Lupus, Graves, RA, Diabetes, Colitis.

..

Bob,

I've read a few sites that refer to MS and Diabetes as metabolic disorders. If I come across again, I'll save the info.