As ready as I'm going to be

XPost / Original July 16, 2008

Whew. I finally finished up the stack of reading given to me by the rheumatologist. I began with the 40-page booklet entitled "Rheumatoid Arthritis" put out by the US DHHS, the 4 pages about Methotrexate (a commonly prescribed arthritis drug), and the 17 page Information and Consent form regarding the double-blind clinical trial of the drug ocrelizumab (which, as I understand, is kinda like Remicade but not exactly .. it's at least the second variation of that).

I liken the government-issued booklet to the "What to Expect" series of books (my brief review of the pregnancy one is here). It's one of those little pamphlets that is stapled in the middle, and it falls open to those staples which is where the 10 pages of medication charts begin. Not a good first impression, but I read it anyway. It's divided into sections that discuss what little is known about the disease, its development and progression, and some treatments. Perhaps I have some sort of hang-up on needing to know the Why, but I just can't shake it. In the bit about "Searching for the Causes," it actually says, "Scientists have discovered that certain genes known to play a role in the immune system are associated with a tendency to develop (RA). Some people with (RA) do not have these particular genes; still others have these genes but never develop the disease. These somewhat contradictory data suggest that a person's genetic makeup plays an important role in determining if he or she will develop (RA)." Um, what? Turns out, the most helpful part of it is about the meds ... because that's all they know to do with RA sufferers, throw meds at them and study them. The treatments are for the symptoms (although the newer cell-destroying ones somehow actually slow the degeneration, at the expense of your immune system, of course). Methotrexate is the most commonly prescribed Disease-Modifying Anti-Rheumatic Drug (DMARD) which the government clearly states here, "Exactly how they work is still unknown." Reassuring, huh?

Being given the brochure on Methotrexate (MTX) means that is what my doctor is planning to begin with, which is very common. What I didn't know is that you have to take a folic acid supplement with it. MTX is most effective when used in combination with Biologic Response Modifiers, or what I call "cell-killers". These include all of those drugs you see annoyingly advertised on TV ... Enbrel, Remicade, etc. There are two main types of those, and I suppose the deciding factor in which one you're prescribed depends on which research your doctor favors ... either TNF or Interleukin1 cells are what needs to be targeted. The biggest concern I have with taking MTX (alone or in combination with something else) is the risk of liver disease/damage. I've outlived my dad by over a year now, and I have a hard time believing his liver wasn't weak to begin with. I know he was an alcoholic, and alcoholism is the main cause of cirrhosis which is what killed him at age 33. But, seriously, he spent a couple of years in prison near the end of his life ... he wasn't drinking then. To die that young, he HAD to have some predisposition to liver disease. So, I need to know what shape mine's in before I can feel okay about taking something that is known to bang it up.

Lastly, I got through the study information. It was written very straight-forward and was careful not to sway the reader to or from doing the study. Despite the gloom and doom throughout describing the awful side effects and potential for death, I actually began a list of questions to ask about the study as I read through it. Then I got to the bottom of page 12 (of 17). In a section called "Compensation for Research-Related Injury," it says, "In the event that your participation in this study results in a medical problem, report the problem immediately to your study doctor. Your doctor will explain the treatment options available and where information and such treatment can be obtained. The costs of any such treatment will not be reimbursed, nor will any other financial compensation be provided." (emphasis added by me). I'm pretty certain that I understand that loud and clear: if the experimental meds we give you mess you up, you're on your own. That bit made me feel so much better about how uneasy the whole thing made me. I'm not going to be a guinea pig for this study. Sure, they might pay for some of the labs and x-rays I'm going to need anyway, but the unknown expense to me is just not worth it.

All things considered, I need some treatment - that's why I went in the first place. Today, though, I feel more confident about being an active part of my treatment plan. I'm going to focus on resuming Tai Chi Chih regularly again, and I plan to have a real heart-to-heart with my doctor until I'm comfortable with what we decide is safe enough for me to try, including alternative therapies. Not having all of the labs done yet (having my TB test read today), I'm still a little concerned about the aggression of the disease - the visible damage does seem to have developed pretty rapidly. I'll just have to take it one careful step at a time and hope for the best. Who knows ... maybe the Arthritis Foundation will get its head out of the ass of the drug manufacturers and focus on actually getting unbiased scientists to figure out what actually causes RA so they can find a CURE instead of a bandaid. Having RA still sucks as much today as it did last week, but I have to deal with it because it was another card in the hand I've been dealt.