This Is MS Multiple Sclerosis Knowledge & Support Community

here you can look for the different teriflunomide trials:

http://clinicaltrials.gov/ct2/results?t ... iflunomide[/url]

My MD asked me if I was interested in participating in the phase III study as I am pretty well petrified of needles...
I am reading the consent form and it says something to the effect that the drug has shown (in test tube studies) alterations to DNA- and can potentially cause cancer..but there is no proof yet in humans.

It makes me equally nervous.
Can anyone speak to the effects the drug has had on them. I understand that hair loss is one of them- its the cancer that really scares me, any words of advice?

Thanks

Dom,

I'm in Ottawa as well. Just finished up the 2 year trial. Now I am on the expanded trial. Except for some thinning of the hair, no sidefx whatsoever.

Don't worry about it. They'll look after you well with frequent visits, ultrasounds, and MRIs.

Guess you are at the General?

Hey DM,

Thanks for making me less nervous about teriflunomide. I will be at the General with Dr. Christie for the trials.

I am glad to know that there is someone on the forum not only in proximity, but on the same trial.

Thanks again, I think now I will have less trepidation to try this drug out.

It may be the same drug but a different trial. As far as I know, I was the last at the clinic to be in the particular study.

I have been in trials for I think it is now 8 years. Definite hair thinning - happened right at the beginning, then stopped.

But hey, I'm a guy, what can I really expect?

Did it just stop, or start to grow back a bit once the body adjusted to the drug?

No growing back

just thinner and thinner over 4 years or so
now stable

At the rate its going lately, I won't have any left in 2 years, and I did have a lot of hair on my head. I am not happy!

So, it seems I have 3 new lesions, so am washing out of the drug next week. Oh well, was worth a try. 9 months, no symptoms, perhaps the Placebo, will never know.

Looking into Avonex now.

tbh, its good timing, i was about to go travelling for a year, and the drug company was insist that i travel back to London every 6 weeks for blood tests, which would have been expensive.

Still don't have MS by definition, but as the Doctor says "the ongoing activity is highly suggestive".

Good news in the paper yesterday

Hope for MS pill after cladribine and fingolimod trials
http://news.bbc.co.uk/1/hi/health/8470138.stm

Hi All

Just wanted to let you know that I am participating in the phase III trial here in Australia.

I get put into 'randomization' ion May 4th. So far, I am only the second person at my MS Clinic to go into the trial.

Hope everyone is well.
Sneaky P

For those interested in the trial, here's the offical website:

http://tower3.msstudies.com/index.php

I completed the Phase 3 trial this past November. Haven't found out yet what I was taking. On the extended study now, and on the real thing, 7 or 14mg. No noticeable differences except my hair has thinned. No sfx whatsoever. Good luck and let us know how you progress!

Hey DM

Well, I got given something today...frustrating that we can't know what it is, but I do understand why.

Will definitely keep you posted on my progress.

It has been a while since my last post. I am still on the extended study, still not knowing what I was taking during the trial, several years ago. As of now, I am scheduled to be off the drug in June 2013, unless it gets extended once again. My ultrasounds have stopped although the MRIs continue.

I have had no side FX whatsoever, and the toughest thing is remembering to take the pills. I must have downed hundreds of these lil guys already, and I feel no different. Maybe that a good thing since I have no ill FX from the MS whatsoever.

My hair is still thinning and at this rate, I will be bald in 3 years. Still have a chunk of good hair as long as I dont comb it but when it is wet, like out of the shower, my scalp is visible. Wait til it dries and no one knows the difference.

My nurse says that they are having good success with this drug, maybe they are, I do not know, but it has not bothered me whatsoever. Doubt it the cure but maybe in keeps the MS in check. 7mg or 14, couldn't tell you. Not til they open the books when everything is said and done. Sure happy I am not injecting myself.

So, another year and I guess that is it. After that, not sure.

Anyhow, just thought I would chime in after not being here for so long