So I went to my app yesterday. I'm officially a lab rat. Today I was supposed to take my first pill. I would love to have a post-a-thon about how I've in the hours since, but because I'm SO awesome, I've already forgotten to take it. I'm off to a booming start.
p.s. Yes I did notice that the date on the medication is expired.
Update: While I would have liked to have thought I was more cultured, its been brought to my attention that the date is in the European format. Gee who woulda thunk that us Americans don't know everything. Crazy.
Well today I go to my clinical trial doc to start drugs. Why does this feel so damn anti-climactic for me? So much so that I even forgot to tell my Mom that I was accepted into the study. I suppose this should feel like a big deal, but it just doesn't. Instead of one great leap for MS-kind, I just feel that its more like just a 40 minute car ride.
I have a problem with surprises, have my whole life. I was the kid who snooped for christmas presents, and constantly read my sisters diary. So the idea of being on clinical trial and not know what I'm taking is more than annoying. It is more annoying that there isn't even a doctor I can manipulate into telling me. The fact that we're all running around blind is also annoying.
Pardon me for my excessive negativity. I'm just really jaded lately by doctors and the whole medical system. Much like everyone else, I wonder when things will actually start working for me. Perhaps when doctors will start listening, and be less concerned with getting your copay. I wish, just for once, the doctor who treated you, could experience what you do. Then perhaps things would be just a tad more urgent.
As many of you know, I do not take any medication for my MS. I was on Betaseron for a while, but found the day-to-day symptoms outweighted the perks of the medications for me. I also have a hard time believing that they do anything for us. You can show me study after study, but there is no way to prove how many attacks a body would've had with/without the medication. I am not against medication, but I think for the money it costs, and the daily strain it sure as hell better be KNOWN to work.
Anyway, since I don't take anything, I have often looked into many clincial trials. Many I do not qualify for, and many I'm not interested in, however I did almost sign up for one but they wanted me to take too much time off work.
So, I wanted to let you all know a little more about clinical trials because I do think that if you're not on anything, you should consider a trial. Yes, it can be dangerous, but we wont get anywhere if no one tries.
Here is a brief run down of the clinical trials. ( I stole this from the National MS Society website)
The process is complicated. Many factors are involved in making sure that a study is conducted properly and that the results are valid. The U.S. Food and Drug Administration requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS:
Phase I – The first step is to determine safety. In a small number of healthy volunteers or persons with MS, the investigators determine how the human body reacts to the therapy.
(This step basically decides whether or not this medication will kill you right of the bat. Its small most likely less than a few hundred people.)
Phase II – If the therapy proves to be safe, studies begin to determine the effectiveness of the drug in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is "controlled"—that is, the drug is compared with the standard treatment, or an inactive placebo.
(This stage can involve thousands of people world wide.)
Phase III – If an MS drug shows effectiveness, an even larger study is conducted in hundreds of people to gain a better understanding of the drug’s effectiveness and possible side effects. These multi-center studies can span several years and several countries.
(This study they look for side effects and long term complications. After this Phase is completed they can apply for FDA Approval)
Phase IV
This phase is sometimes used after FDA approval to further search for benefits and complications.
There are a shit ton of MS clinical trials out there right now. I found a new one today called the Tower Study. There is also one called the Halt MS study, which is for people whose MS is totally taking over their life. In order to qualify for this one you have to know stuff about your MS that I've never even heard of and get approval from a committee. Heavy shit.
If you just google MS Clinical Trials, you can find a ton of options out there, so I won't list them all here. You can always check out the MS Society's page for studies they're promoting. There is this site which is specifically about MS Clinical Trials. Or you can go to the mother load of clinical trials at Clinicaltrials.gov. There is also this one which is pretty fool proof Trial.org.
Here are the "current" oral medications in clinical trials: ( I may be missing some)
Laquinimod -Currently Running two trials called ALLEGRO and BRAVO which are designed to evaluate the investigational drug laquinimod as a once-daily oral treatment for RRMS. Phase III started in late 2008.
Fingolimod (FTY720) - I think this is currently in Phase II
Mylinax - Last found info said it was in Phase III
Teriflunomide -As of Sept. 2008 it was in Phase III
BG-12 - Can't find much info other than it was in Phase II
CDP323-Results of Phase II were expected by December 2008.
There is obviously a HUGE market for an oral drug. The race is on. My money is on Laquinimod, just because its easiest to research, and join the trials. I was going to join the allegro study, which was for 2 years. So I'm guessing we'll have an oral drug somewhere around 2012. We'll see which company pulls through and what ungodly amoun they charge for the drug itself...and maybe it we're lucky our insurance companies might actually cover it.
