This Is MS Multiple Sclerosis Community: Knowledge & Support

You were on a different study than I. You were not officially diagnosed when you were placed on this other study with Teriflunomide, until your other lesion showed up.

I am diagnosed, and healing somewhat. One more visit, late November, and the study is closed. Yep, I am the last on this particular study. Then onto the real McCoy, if I am not on one already.

Same with me, CIS, i.e. one attack, and using the drug to keep it that way. I think I maybe on the real drug. After two weeks holiday, where I wasn't drinking to excess, but a fair few beers each day, my blood test showed problems with high liver enzymes, so either I'm on the real drug, or my liver is buggered anyhow :p

Hello! I just wanted to give an update. I had elected to stay on in the continuation study after my study was unblinded in 2001. I have been on 7mg of teriflunomide daily since then. I was on the placebo previous to that, and have signed the papers a few times since to keep going... http://clinicaltrials.gov/show/NCT00228163

I noticed a few posts re: this drug and your liver. It is not uncommon even when on drugs that are approved for various conditions to have to have your liver checked periodically (accutaine is one I believe). It depends on the manner in which the drug is cleared from your body. Some drugs are cleared by the liver and can therefore be fairly hard on it if there are other liver issues gong on. Hence the blood work to check liver function. I have never had abnormal readings for my liver function..either on the placebo or for the last 8 years while on the drug. I have had a few minor relapses in the last few years...but not severe...and no other treatment has been needed...other than some anti-fatigue drugs that apparently don't work for me
The other thing I have to have checked every three months is my pancreas. It's just a quick ultrasound so no big deal. I guess a few years ago, some beagles that were on this drug developed pancreatitus.. (I'm sure I spelled that wrong!) so again...it's just preventative. No humans on the drug have developed it.
I wish everyone else well who is on this drug...and those that are not as well!

Thanks for the update.

Last week on the trial! Ultrasound Monday, appointment at the clinic Thursday for full exam and get the drug, if I am not on it already and then the last MRI on Sunday. Can't believe that 2 years has since passed.

I'll chime in on Thursday with any updates, if there are any. Doubt I will find what I have been on, then!

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I'm the last person on this particular study. Once done (this week), then they open up the books. Not sure exactly when, but everyone has been waiting for me to finish. Isn't that a hoot!

I guess I am not the last in the world on this particular study. I have been advised that it finishes sometime during the first half of 2010. I am the last here in Ottawa, or maybe the country.

Now I am on the extended study. Now for sure I am on the real thing. I feel no different, so I don't know. Now I restart the process all over again, with frequent visits to the hospital over the next couple of months. Did my MRI again this afternoon after having my ultrasound earlier in the week.

So I have nothing to report regarding my progress. Nothing is physically wrong with me, and nothing has changed. I'll just keep popping these pills everyday, watch my bald spot at the top back of my head increase in size, and take it one day at a time.

This is such an unscientific process. When I queried how do we know this is working, the response I received is that I have had no attacks since the one and only first one. It took 51 years for the first to roll around, so maybe it would take another 51 years for the second. Maybe if i was not on this drug, I wouldnt have had an attack anyhow.

Who knows? Who cares? I just go with the flow and hope all goes well. If it works, and others can benefit, I did my thing while being here, and benefited others, and future generations. Just hope no more hair falls out. lol

Anybody else on the clinical study, or the extended, realizing dramatic hair thinning?

No hair loss here I'm afraid, its been 7 months, and no side effects. Hey, DM, so the Extended trial, does that mean you are now defiantly on the real drug for the foreseeable future?

Yes. If I have been on the placebo, then I am now on the 7 or 14mg dose. If I have been on the 7mg dose, I continue on that dose, and the same goes for the 14.

I believe it goes for another 2 years. Visits to the hospital pick up once again, the frequency starting now every 2 weeks. MRI and ultrasound in 48 weeks.

I have noticed for a while the top of my head losing hair. Can it be from age, or the drug? However, over the past couple of months, my hair has thinned out dramatically. And I had lots of hair. Thick, curly, the whole 9 yards.

Now, I am noticing it, so I cannot determine if it is because of age, or the drug, however, there are reports of hair loss in dealing with this drug.

Do they check your liver when monitoring you? I had an issue with hair loss and it was my liver due to antibiotics. Also get your thyroid checked. If both are normal then its probably the drug

Do they check the liver and thyroid thru the blood tests I have been going for over the past 2 years? If so, they haven't said anything about any abnormalities to me.

I am really concerned about this hair loss. Really concerned!

If its the drugs, and not age, it is reversible. But I think its only reversible if you stop taking the drug. Not sure if the counter hair loss drugs battles the teriflunomide to bring the hair back.

Hi

I am also on this clinical trial. Started in June 2005. Second phase started Oct 2007 and the last date on my schedule is May 2011.

Have no idea if I was on drug from beginning or not. There have been no reactions - can`t tell any difference.

The bad news for me is that my condition has slowly gotten worse and «i am now classified as progressive. My problem is my balance and walking in addition to the fatigue.

Re hair loss - I do lose alot of hair but I have attributed that to my thyroid, which I also am being treated for. They do not test this in our blood work for this trial. My conditon showed up in my annual checkup through blood work and I asked them if they had been testing the thyroid because I was wondering if this drug had anything to do with my thyroid and they said no they do not test the TH levels.

The only thing I don`t like about being in a clinical trial is all the MRI`s.

We are both taking teriflunomide but may be on different tests. The study I am on is Phase III and nearing its completion first half 2010. I know rthere are other teriflunomide tests with people who have different symptoms.