This Is MS Multiple Sclerosis Community: Knowledge & Support

Teflunomide appears to be in the RA drug leflunomide. I believe this could be prescribed off label by a considerate doctor. <shortened url>

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Last appt was June 2. This is one month since my last appt regarding regular bloodwork. Next appt is now scheduled for 6 weeks. The appts. are now spreading out instead of every 2 weeks.

The nurse who is conducting the study in Ottawa told me that she cannot take on anymore test subjects and the study may now be closed, except for those, like me, still on the study. She also said that soon she will know if I am on the placebo or not.

Nothing has changed. No sidefx or symptoms. Now on study since Nov 2007. Maybe soon I will find out which pill I have been taking.

http://www.nationalmssociety.org/resear ... px?nid=588

This was posted on 12/30/08 for the beginning of Ph III.

Thanks for the article.

Last appt was Dec 22 and nothing has changed. And that is good. My EDSS score actually improved to 1.0, and I have experienced no further syptoms or sidefx. Sometimes a bit tired however I am not sure whether this is due to the MS, hard work, or age lol!

Still popping the teriflunomide nightly. Been a year. Anyhow, all is good.

Danny

After reading your story about being in the study for Teriflunomide, I am feeling more comfortable in participating. I have started all of the tests required and if all goes well with the test results, I should start the drug around 3/20.
I had the attack on my left side of my head and arm around Jan 24th. I have numerous lesions found in the MRI. The symptoms are slowly going away, but still feel numbness in the left arm and hand.
I am hoping that this drug does not harm me and the side effects are tolerable. I prefer to try the study and be monitored closely rather than start the injections.
Thank you for your postings. It helped me decide that this may be a very good opportunity and promising treatment.
I'll keep you all posted on any side effects and progress.

I have now been taking this drug since November 2007 and just to let you know that I have had NO side effects whatsoever. Nothing. No pain, no headaches, no flu like symptoms. Nothing.

I also had only the 1 attack back in November 2006 but nothing since.

Good luck

Danny

Just a quick update. I have been on teriflunomide since 2001 or 2002 now...can't remember it's been so long! Originally started on the phase II trial...when they unblinded the study (2002?) I was switched to the drug. So... I have kept signing up for the continuation studies. Just signed up for another 2 year continuation and all is well.

As I said to Carole in her Fingolimod post, a big “thank you” to all of you on the trials. Nothing progresses and nothing is learned if there aren’t participants. Please keep us updated on how you’re doing and any news of the drug you can share. My thoughts are with all of you and continued success in your individual trials.
N

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.

Don't know about the drinking warnings. I do not drink simply because I do not like the taste of alcohol. Diet soft drinks is all for me.

Anyhow, I cannot believe where the time has gone. I have been doing this drug for 1.5 years now, and will be finished the study in November. I pop the pills out of their individually sealed pockets every night, and realize that another day of my life has passed.

From the time I met the MS doctor, Dr. Freedman, here in Ottawa, until the time I was proposed for this test study was also approximately 2 months. I am 53 and I only had the one extremely mild inconvenience. After the episode, catscans and MRIs of the brain, and a lumbar puncture, it was determined that I have MS, although I do not think I do. As mentioned much earlier, this episode only lasted three short weeks, and as fast as it started, that is how fast in concluded.

So after 1 1/2 years taking teriflunomide, all I can say is that it has 0 sfx. They mentioned that there have been reports of hair loss, and although I had the tiniest of a bald spot on the top of my head, it seems to have grown a bit bigger in size. Is this due to the medication, or my aging? lol Who knows?

But I am definitely happy taking this drug, placebo, 7mg, or 14mg, double blinded study so only the pharmaceutical company knows for sure,
I have not had another episode since the first. Maybe its the drug, or maybe it is just me. Either way, knock on wood, no recurrences.

If they are advising that you should only consume x amount of alcohol, then I guess that is all you can do, however, my next appointment at the hospital is this coming Monday, June 15, 09 and I will ask them for you, and post again as soon as I return home, which should be late afternoon for you.

Regarding the liver, there was a dog who was taking a sister drug that is similar to the teriflunomide to treat some arthritis or something and this dog contracted something to do with the pancreas. Therefore, I have gone for a number of ultrasounds in this region. Whether that has anything to do with the liver being in the same area, I am not sure.


Stay tuned......

Im ready to go and starting the trial next Tuesday. I had concerns about the almost 4% in the last study that had cancer. Then again that could have been close to the populace that would get that anyway. The whole changing genetic material in mice and turning into leukemia is scary but im still rolling the dice.

This board has been helpful in making me feel better. I am a first episode (CIS) patient. I had numbnes and tingling in right side from foot to under the arm. It then moved over to my left leg. This has been going on for about 2 months now. I am on Lyrica 200mg a day and some symptoms have alleviated but not entirely. 39yr old male.

Nervous and hopeful not to get the placebo. I am the first person at my hospital to be on this trial so maybe I will get lucky and not be a placebo. I will keep the board updated on my experience and progress.
~Paul

Good luck to both of you, Paul and Martyn. Here's to hoping you get the real stuff! Please pop in once in a while and let us know how it's going.

Update:

#1, from March 2007 to March 2009, the lesion of the stem of my brain has reduced in size. Yay! How that is possible, maybe someone here who is more technically in tune with this can give a reason. All other lesions seem the same size with no added lesions. Yay!

#2, The liver is the digestive tool to breakdown the drug, as far as I understand. Each and every time I go, they take blood and the tests are for liver thingys. If you drink excessively, that will show up on your blood tests, and can knock you out of the program. To have a glass of wine, or a beer with the guys, is fine, but don't expect to party hard, and the next day, swallow the teriflunomide and expect normal results. It is in the agreement here in Canada but I did not look at it because it is a non-issue for me.

So the occasional drink is fine, but definitely no binges.

Regarding the cancer worries...

Although I am not proud of it, I have been smoking for the past 32 years. At times, every so often, a pack a day, but mostly 8-10 per day. I am also an avid suntanner, as much as I can get in Canada, and I currently have no signs of cancer, so if you are worried about this drug instigating cancer, I don't have it, and hope I don't get it.

Thanks DM for checking that out. Well I'm on the trial, 2 weeks now and so far no side effects what so ever. If you are interested, getting the Phase II trial notes for $20 makes interesting reading. With the side effects, and liver problems were the same in the Placebo (If not more!!). So as far as I can tell, it looks safe there.

http://www.neurology.org/cgi/reprint/66/6/894

My background, for those interested, I got a sudden case of Foot Drop over Easter 2009, and due to really good private health care, was quickly diagnosed with CIS. I have one lesion on the brain, and 2 on the spine. The foot drop disappeared in 1 week, its been 2.5 months since then, and the only symptom left is numbness down my right hand side.

The biggest problem for me is going to be the fact that they want to test you very regularly as my wife and I have decided to go travelling for a year. So we're not too sure how that will work out.[/url]