Sunday, January 20, 2008

5th Month Fingolimod Study Anniversary

Today my clinical trial is 5 months old. Seems like just yesterday I was popping that first pill and watching movies with my sister while I suffered through six hours of uncomfortable chairs and hourly vital sign checks. Ahhh how the time flies!

I'm going to be in a panic after the six month mark, that'll be when I'm on the downhill slide to last call at the Fingolimod Bar and Grill. Like any hard core alkie, they are going to have to pry the pill bottle from my hands when it's all over. I don't want to give this stuff up.

Back before I started the trial, I was having some *issues* with my mental state. I was panicking all the time and carrying my Xanax around like a binky, afraid to get too far away lest I need it. I was also, I look back now and can say with certainty, depressed.

I think emotional problems scare me more than the physical symptoms of MS. I never was one for getting "high" as a teenager for fear of being out of control. I was the designated "straight" person for all occasions. Before I started this trial I was having racing thoughts, panicking and generally living under a cloak of gloom and doom. I guess that must be depression.

Well, my doctor prescribed Zoloft just as a matter of course upon hearing of the panic attacks and sensing my general overall unease. He scribbled the script and handed it to me like it was just a note that said "I hope you get well soon." To me it was a billboard that stated "WARNING!! YOU HAVE GONE STARK RAVING MAD AND THIS Rx PROVES IT!!"

I took the prescription and I got it filled. When I picked it up, I took the brown bottle and put it on the shelf. I read the insert with all the possible side effects and then I went and took a Xanax to calm down. Turns out just the very idea of being on an antidepressant was enough to give me a panic attack. In the end I just couldn't do it. The full bottle of pills is still sitting on the shelf, unopened. Waiting like a sentinel there as if mocking me, saying "I'll bide my time...we both know you are crazy and will one day have to break down and let me fix you. I have all the time in the world. Um, or at least until my throw away by date."

Then a nutty thing happened. I gradually got sane. And quit dwelling on gloom and doom, and got back to being normal (which I admit is a term I use loosely when referring to myself). I am blaming the MS for the emotional problems I had at that time. Maybe it ate a hole right through the part of my brain that controls emotions. Who knows?

Somewhere along the way I came across new information that Fingolimod (FTY720) is being found to not only slow progression and reduce the frequency of relapses in MS patients, but to also help with depression. I'm wondering if that's the real reason I don't need the ant-depressants. Maybe this stuff is so good that it's going to fix everything that's wrong with me. It hasn't done a thing for my procrastination, tho. I still don't ever finish what I start (which is why I'm so proud of myself making if 5 months to the day so far -- I have had to make sure I took that pill every day and the shot once a week for 5 straight months... no mean feat for a procrastinating unorganized crazy person).

Anyhow, here's a link to the info about Fingolimod treating depression:
http://www.neura.net/channels/1.asp?id=736

Here's an excerpt if you don't want to go there:
Dr. Kappos and colleagues also described a 6-month, randomized, placebo-controlled, phase II study (with an 18-month dose-blinded extension) of the effect of oral FTY720 (fingolimod) on depression. FTY720 1.25 or 5 mg/day reduced the proportion of RRMS patients with clinical depression. At 6 months, the proportion of patients with depression on the Beck Depression Inventory II (BDI-II) was significantly lower in the FTY720 1.25 mg/day group (17.07%; P=0.0176) and the FTY720 5 mg/day group (18.99%; P=0.0407) when compared with the placebo group (33.33%). Among patients who switched from placebo to either dosage of FTY720 during the extension phase, the proportion with depression by BDI-II decreased at 12 and 24 months to levels similar to those in patients who received FTY720 continually throughout both periods. FTY720 has previously been reported to reduce relapse rates and MRI activity in a phase II study of RRMS (Kappos et al. NEJM 2006; 355:1124-1140).


So, maybe it's the medicine, or maybe it's just the fact that I've been relapse free for over 8 months now, but I'm not depressed. I don't cry at commercials on TV, I don't burst into tears over a country song...I must be okay now.

And the really REALLY ironic thing about all this is that it's being reported today that "Nearly a third of antidepressant drug studies are never published in the medical literature and nearly all happen to show that the drug being tested did not work, researchers reported on Wednesday."

Here's a link to that gem.

Why take a drug that apparently may have no effect at all when the one you are already on has pleasantly surprised you with the side effect of relieving your depression?

I'm happily celebrating my 5th month mark. Who wants cake?

2 comments:

walkingwithtrees said...

I'm also 47 and really enjoy your blog on Fingolimod. I'm also on a clinical study for fingolimod which I started on the 9th of July 08. I found your site the night before at 3a.m. when I couldn't sleep for fear of the unknown the next morning. I live in the Pacific northwest and hope to blog with you again

TickledPink said...

Welcome to Fingolimod! I'm glad you found my blog and I hope you get as much benefit from being in this study as I have.

I have always wanted to see the Pacific Northwest, but I'll probably never get there.

We have a group of "Fingo Heads" over on my message board if you would like to join us.

www.meandmyms.org/forum/