This Is MS Multiple Sclerosis Knowledge & Support Community

Mikey wrote:GOING IN THIS MORNING TO START THE DRUG.
HOPEFULLY I GET THE REAL THING
They said they would not change the drug if they started me on the placebo and i get worse in the future.

Hi there, if they choose me I will start soon, too. How long do we have to take the drug until they tell us what it really was. Do you know that? I was told at least 16 months upto 3 years and 4 months.

ErikaSlovakia wrote:

Mikey wrote:GOING IN THIS MORNING TO START THE DRUG.
HOPEFULLY I GET THE REAL THING
They said they would not change the drug if they started me on the placebo and i get worse in the future.

Hi there, if they choose me I will start soon, too. How long do we have to take the drug until they tell us what it really was. Do you know that? I was told at least 16 months upto 3 years and 4 months.

I am one of the last patients on this particular study of teriflunomide. According to my nurse, all patients in phase 3 must wait until the last person has finished the trial study before releasing the data. It will be 2 years for me this coming November, and I believe I, as the rest, will not know until very early next year!

DM wrote:

ErikaSlovakia wrote:

Mikey wrote:GOING IN THIS MORNING TO START THE DRUG.
HOPEFULLY I GET THE REAL THING
They said they would not change the drug if they started me on the placebo and i get worse in the future.

Hi there, if they choose me I will start soon, too. How long do we have to take the drug until they tell us what it really was. Do you know that? I was told at least 16 months upto 3 years and 4 months.

I am one of the last patients on this particular study of teriflunomide. According to my nurse, all patients in phase 3 must wait until the last person has finished the trial study before releasing the data. It will be 2 years for me this coming November, and I believe I, as the rest, will not know until very early next year!

Well, I am the first in Slovakia in phase III. I also have the written information that I must wait until the last person has finished the trial study before releasing the data. If I know more I will let you know.

MartynW wrote:Hi, I'm about to start in Phase III of the trial. I had my first attack 2 months ago, and so far everything has been very mild thankfully. Thanks DM, your posts are reassuring.

One question that I've got, in the UK, we have this warning on the trial docs

"Excessive alcohol use (current UK guidelines state this is more than 21 units per week for a male and 14 units per week for a female) may worsen a reaction of the drug to the liver and so it is recommended that patients do not drink more than this recommended allowance during the study."

Is this mentioned on other trials. Is this a big problem, or are they covering there backsides?

I'm fairly young, and like to party every now and then, I'd hate to have to stop partying for 2.5 yrs only to find out I'm on the Palecbo.

Hi, I am from Slovakia. If they choose me I will start very soon. Yes, we also have the alcohol warning - written! and I had to sign it. As I have MS since 1996, EDSS around 5,0, I feel drunk all the time so I really do not like alcohol. But I understand it is not easy for you. I am sorry ...

Well almost 3 weeks now on the drug and I dont feel any different and I'm not experiencing any side effects. I guess thats good.
Over two months since my arms and body started to tingle all over but its down to just my hands now. Its manageabe and now that I can type and use my hands again is great.

Compared to the sfx of the nationally approved drugs, this is a snap!

Well...it's been 7 or 8 years on teriflunomide now...been too long, can't remember All is well. I believe that I will continue on for another 2 years or so. If the drug is approved, I will continue it. Over all I have been doing well. Seem to be really bothered by fatigue lately...but hey, that's life!

First of all, thanks for sharing experiences with this drug! I'm trying to decide wether to start this drug or copaxone. As far as I can tell on this forum, side-effects seem to be allright. However, being a singer; does anyone have had troubles with respitory infections/trouble breathing and also hairloss? In the study-information, it is reported that these effects are often reported, not how often. I find the changes in dna and consequently higher risk of cancer quite intimidating, but your reactions on the other hand encouraging.

(personal info: have had RRMS probably for 9 years now, 3 or 4 relapses have used no medication whatsoever up till now).

Curious to know you findings, thanks,
Karin

I have had zero side fx, except I think that tiny little bald spot at the top of my head advanced with the help on the tiny white pill.

So, I say no respiratory issues and so far, no signs of cancer.

Hi All

I just finished up a 1 year safety & efficacy study combining Copaxone & Teriflunomide. I was on either placebo, 7 mg or 14 mg dose of Teriflunomide.

Our feelings are that I was on either the 7 mg or 14 mg dose of Teriflunomide. The first 18 days I took the pill, I had heart burn that lasted up to 2 hours.

As the research center was the first one in the US to start the study, I was the first person in the country in the study. I was also the first person in the extended study...LOL

My edss score was the same at the beginning & end of the study. However, both myself & the research neuro feel I am doing much better.
During the study, I had many events that will get me in the adverse events section...LOL

I had 3 surgeries relating to my baclofen pump, 2 infections, 1 ms relapse due to becoming over heated at work & a little leg injury when the horse I was riding went over backwards with me.

The neuro says we may never find out what dose I was on. We both agree that what ever I was on had a positive effect on me.

Take care, Bob

The day I was supposed to take the first pill I was told I could not start as I had decided to fix my vein problem.
Well, at the end I am not sorry as I really prefer to have my stenosis fixed.

Well Its all over for me! They just kicked me off the study after 3 months.
They said due to a new lesion on the brain that now I am officially MS and can not participate anymore even though I have not had any relapse.

Just as I suspected from the begining....they kinda let it slip that I have been getting the PLACEBO. Due to my blood work came back the same before and after starting the drug. No change in liver function....which is how you know you got the real drug or not. i guess it affects the function of the liver somehow.

Nice to know we are all just Lab Rats for them.
If i sound bitter...well I AM. Put me though all those tests and bloodwork and wasting my time playing their games.

I hope they all suffer and die from unnatural causes!

I don't understand. Doesn't one have to be officially an MSer to participate in the study? And it doesnt make sense that you have gotten another lesion, and been bounced off the program.

I can understand your frustration. What is your next plan of attack?

I am soon finished with the trial study. If I am not mistaken, late, late November or early December. It'll be interesting to fins out what I was on these past almost two years!

Good luck to you and keep us informed as to what is happening with you!

they told me just the opposite...they only wanted me because i was CIS....clinicaly isolated syndrom... basicaly I had only one attack ever.
its not MS until you have two or more...thus the term Multiple....
I did not have a second attack but because I developed a new lesion they consider that a second episode. So I got the boot.

Now they want me to go on copaxil....daily injections. I hate needles and I just never was a drug believer.
I may not do anything. Havnt decided yet.

Same here. Only one attack. No new lesions however one is healing.

I don't mind needles, as long as someone else is injecting me.

And I have always wondered that if I just did nothing after the one attack, would I have been the same anyhow?

Tough call.