I have hit the three month mark on Avonex. Not that three months has any sort of significance, other than the fact that I'm calling it an "anniversary." It's like the first year of a relationship where every month is an anniversary. Okay, maybe only I am that lame. Anyway it's nice to have finally hit a point where I'm no longer waking up on Monday mornings with dread, wasting time worrying about how the shot will go. The last two weeks have been my most smooth needle work yet. Even with doing the powder form, which requires me to mix up my drugz before I inject them, I'm generally done within about four minutes. I have been fortunate enough to not have dealt with severe side effects, and the small things I do feel are easily avoided or dealt with by alternating Tylenol and Aleve. Avonex has also helped me become much better at guzzling water and staying super hydrated, I'm crossing my fingers this isn't the only benefit this drug will have for me.

It's obviously no secret that I have some reservations about being on Avonex. There are times where I feel like a huge sucker, and am slightly grossed out that I am contributing to the money mongering pharmaceutical industry. The general stats for Avonex also leave much to be desired, in my humble opinion. I once read someone compare taking one of the MS drugs to buying a Cadillac, and asking if you would really buy one that only worked 30% of the time. Although I can't argue with this logic, I'm obviously behind the wheel. I'm just hoping the car doesn't go "Christine" on my ass. Either way, this is where I'm at right now. I am giving it a fair shot, no pun intended. I will continue Avonex for all of these reasons: I have mastered the art of the jab, it isn't making me ill, I have insurance and an insanely cheap co-pay, it makes my family happy to know that I'm doing what I can, and there's a chance of a chance that this could keep me from relapsing in the near future.

Part of what compelled me to again touch on my use of Avonex was the recent release of the "Champs" study, ten year follow up stats. The average relapse rate of patients on Avonex was once every four years, and that aint bad. I could continue to get analytical here and say the same could be said if you weren't on therapy, but I think that's a given. Drugs or no drugs, if I could go four years without a relapse, I would be pleased as effing punch. 

So today was my first follow up neurologist appointment since starting Avonex. I went in with a few questions written down, since I seem to space out immediately upon entering the office. It seems like everyone is zombied out, from the lady at the front desk, to the nurse, the other patients waiting in akward silence. I half read some stuff on stem cell therapy in Neurology Now, but couldn't really focus much. I just brought my copy home.

 Anyhow there was the typical exam with pins and pokes and walking and the like. My doc seems to think that I'm doing well, and I'm pretty sure I am too. I asked about the fact that there hasn't been a day since November that I haven't had any sort of symptom, be it buzzing or numbness or what have you. I asked if this was normal, as in is this what "remission" is like for me. It's different for everyone, and I know this. I am just wondering if remission for me, or for anyone, means feeling absolutely NO symptoms whatsoever for any length of time. He couldn't really answer that, and I suppose this is okay. I also asked when I would have my next MRI, and he said either if I have a worsening of symptoms, maybe in a year, or perhaps if the specialist wants one sooner.

Even though I knew going into the next question what the answer would be, I sort of wanted to know what his take would be. So, I asked if when they looked at the results of the next MRI, if they would be able to tell me if the Avonex was really making any sort of a difference. At first he said it depends on what week you ask him that question, since opinions are always changing. He then went into the schpeel about how short a time the drugs have been on the market, how we really don't know if they're helping this generation of MS patients, but there is a chance that perhaps less will be disabled, as in wheelchair bound and the like. It was the answer I expected, and I appreciated it. I know it isn't his job to feed me a line of crap, and he didn't. I was pleased.

Another one of my questions was in regards to the cognitive issues I have been dealing with. His response to this was to ask me if I was depressed, which I do understand. I realize that depression can play a huge factor in cognitive issues, but I don't necessarily think this is my issue. Understandably so, I'm not the happiest I've ever been in my life, but I'm certainly nowhere near the saddest I've ever been. I feel pretty even keel right now, especially considering the circumstances. He suggested I sit on the issue until the next appointment, and then possibly think about starting anti-depressants. While I appreciate the thought, anti-depressants are not on my list of to-do's. I have had pretty negative experiences with them in the past. I'm not writing anything off completely, but it would take a heck of a lot of depression to put me back on medication. I think the cognitive issues will be something that will probably be better addressed with the specialist, which is a-ok with me.

I didn't really come away from the appointment with anything I didn't know before, and this is just as well, and what I expected. I understand that we can't expect doctors to have all of the answers, especially when it comes to a disease like MS. In a sick and twisted way, I sort of enjoy being somewhat on par with my regular neurologist in terms of knowing what's going on with my disease. On another note, I was hoping he would redeem himself today, after my unimpressive prior visits. I am happy to say that he was the least zombie like out of everyone in the office today. I have found that just being more assertive and demanding with him seems to work a little better. I also think he appreciates the fact that I'm doing my research, and not simply relying on him for all my information.

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.

One of my biggest problems with having MS is deciphering between a "real" symptom and other things in life. I often ask myself if what I'm feeling is MS related or just a side effect of living. Lately since I've started my new work out regimen I've been feeling some extra "symptoms". At my last neuro app last November he gave me a sample of Lyrica. A medication normally used for Fibromyalgia patients. I did some googling and found out that often MS patients also use it manage pain and help control our crazy nerve endings. This stuff has worked very well for me. I have only used it 5 or 6 times since Nov but I do believe that it has worked. I have considered that maybe it's all in my head and I've given myself the placebo effect but I think I'm ok with that.

Anyway, I started looking at all these forums of people who have been taking Lyrica and who have gained all sorts of weight, and are dizzy, and often very tired. So then I started to analyze myself and wonder if I've felt that. I start thinking, yea I've gained a lot of weight. yea, I have balance problems. and YEA, I'm ALWAYS tired. OH MAN IVE BEEN DEALING WITH SOME CRAZY SYMPTOMS!!

But then I turn off my crazy button, and realize I've only taken this stuff a handful of times. 50mg of this drug 5 times over almost 5 months is not grounds for excessive symptoms. But this seems to be how I look at almost everything. Is this a symptom? Is that a symptom of MS? Is my life a day to day symptom? And this, right here, is exactly where I get stuck in the middle of MS. How the shit do I know what is "normal" and what is "MS"? There are certain things that I know I didn't feel before my MS, and I mark those is the MS column. But there is some other stuff that happened before, or just started and I have NO CLUE what column to put it in. Its like I have three columns: Normal Life, MS, and Every Other Fucking Thing That I Feel Everyday.  Sometimes I think the MS and the E.O.F.T.T.I.F.E. Column overlap, but who the crap knows?

I did this with the Betaseron when I was on it. Although I FOR SURE got night chills on it, there was other stuff that I'm just not sure about.

I feel like this is where have MS really blows. So often people think you're just making shit up, or that you're whining. And all I wanna do is punch those people in the face...but sometimes even I don't know where the line is. Sometimes I'm not sure if I'm tired because I'm out of shape, or if things hurt because I don't work them out enough, or if I'm off balance because I stood up too fast....or....or....or...whatever. It seems like so often things could go either way.

I wish everything had a clear cause and effect. I'm so tired of blurring the lines. I'm so tired of not knowing if I'm right or if I'm just making stuff up too. Damn it body, get more in tune with yourself.

Side note: I do think that Lyrica is helping with my tingly feelings, the hot spots, and the minor back pain. It also really helps me in the cold weather with my legs. It basically tells the nerve endings to calm the fuck down, and stop firing. Its good stuff. If you have similar problems ask your neuro for a sample. I have also heard of people taking Cymbalta for this, but I don't really know much about it. The Lyrica website doesn't mention using it for MS, but apparently lots of people do. They often take higher doses and much more frequent than I do. But anyway if you have some crazy-ass nerves like I do, check it out.