Monday, October 19, 2009

The Contiued DMD Debate

Well first I'd like to apologize for the long gap between posts. It's been in insanely busy couple of weeks. Not long after my last entry, we found the perfect home. One level ranch style house, nice neighborhood, tons of a character, and next door to a park. Shortly after we found the house, I promptly lost my ongoing battle with the stairs at the old apartment and TOTALLY blew out my left knee. So, I have spent the last couple weeks trying to walk despite pain, and adjusting to the Rebif, while packing to move. Trials aside, I'm thrilled to announce we moved in yesterday, and this is my first blog entry from our new home. I absolutely love it, as does my family.

For those of you still looking at the title of this post going "what the heck is a DMD?" DMD's are Disease Modifying Drugs, essentially the injections those of us with RRMS (relapse/remitting MS) take to slow the disease's progression. As most of you already know, I am currently on Rebif. I have to say, my Copaxone days seem like a distant fond memory at this point. Rebif is simply brutal. I am having a horrible time with it.

My doctor and the drug company were both very frank about the flu-like side effects associated with Rebif. Even still, no amount of warnings prepared me for what it's actually like. The short version is this: Last night was an injection night... which I spent in tears from joint pain, chills so bad my teeth chattered, and feverish. Neither I nor my husband slept at all thanks to my constant tossing, turning, and cursing in agony. Today was a little better, but still quite sore and had a headache that simply would not cease no matter what I did. I have come to seriously dread my Rebif injections. I honestly feel like just when I start to feel a little better, it's time for the next one, and I am back to hell.

Needless to say, this is further fueling my inner turmoil over whether to be on DMD's at all. I have asked this question before, but I have to ask again: What is the purpose of a drug to treat a disease who's side effects are just as bad (and sometimes worse) than the disease itself? What if I am in my last mobile years of life, and I am wasting them being sick because of my DMD? I understand I have to give the Rebif time, and I understand that the side effects could lessen after a couple months. I've already resigned myself to giving the Rebif six months. But that still leaves me with months of being sick regardless, potentially for nothing if it never gets better and I go off it entirely.

Right now, my gut instincts are very strongly telling me to research homeopathic treatments a lot more in-depth. I have friends with MS that suffered relapse after relapse while on DMD's, went off them entirely and started treating their MS with natural sources, and have since gone years without a relapse. Of course, they overall feel light years better just not having the DMD side effects anymore.

*sighs* I'm not sure what the answer is, I only know so far DMD's and I don't seem to mix well. For some they are a blessing and help so much- I don't dispute that in the least. For others, like myself, they simply don't seem to do what they are meant to and we're left making hard decisions that could potentially effect our entire future. A decision I fear I'm on the threshold of having to make.

So that's where I am. Loving my new home, hating my Rebif injections, and hoping my knee finally heals. More to come soon!

Be Well!