Tuesday, October 19, 2010

Monoclonal Antibodies: A credible hope for auto-immune disorders

Coming back for another update on my dealings with Dermatomyositis, this time, oddly, I'm here to share great news. For the first time, in a long time, things are looking up for me.

Just as recently as just three weeks ago, I had a very bad respiratory episode. See, my disease has made waste of my lungs, leaving me with less than half of normal lung functionality. What that means is that anything as simple as a regular cold can knock me down. About three weeks ago one of my little ones came home with a cold. Knowing my condition I should have take precautions to avoid catching it myself... but I didn't, so I caught it. At the beginning it just felt like a regular cold. I had a mild fever for less than a day, and then the symptoms left. But... a slight cough remained. For those of you who know my stories, you know what coughs mean for me. A few days passed, the cough persisted, getting worse, and worse. Then I was getting short of breath all the time. At some point it got so bad I didn't feel like getting out of bed because I had no energy to do anything.

At this point I'm panicking, reliving the worst moments of my dealings with this disease. I made an appointment with the Pulmonologist, and just rested as much as I could. I saw the Pulmonologist and he prescribed antibiotics and steroids (more steroids, this time in an inhaler) and reminded me of what I already knew: you can't take these chances, your lungs are not in good conditions. Anything too strong and you may not make it. Also, he said I had start learning to live damaged lungs, like learning to pace myself: I can't just keep walking at the pace I'm used to, because the oxygen saturation levels drop dramatically and I may just pass out. I have to walk slowly and take it easy in general, or get used to the idea of going around with an oxygen tank.

So, all of this had me very bummed out. I got very depressed, because quite frankly, I'm just tired of this... I'm exhausted at the prospect of the very idea of death lurking around. Survival rates of people diagnosed with Dermatomyositis drop dramatically when there is lung involvement, like there is in my case. I'm tired of walking upstairs and losing my breath for a minute to the point where it's hard even to talk. I'm tired of having to explain to strangers that ask for help from a tall, seemingly strong man, that I can't help because I have a muscle degenerating disease... Or that I have to think twice to do ANYTHING because I have to factor in the exhaustion and ensuing muscle pain afterwards...

So, needless to say, I could use a pick me up at that point. After my visit to the pulmonologist, the steroids, as always, did the trick. Within a few days, I was breathing better. However, the psychological dent was deep and still there. However,  I had accepted teaching a class part-time at CSU Pomona (where Mónica works), so I just had to keep moving. Lung problems aside, I was feeling like felt, in some way better. At least from the point of view of my muscles, I was having less pain, I felt better. I wasn't getting stronger... but I wasn't getting weaker anymore! Perhaps teaching the class helped to improve my emotional state, but I was feeling better all around (with the exception of my respiratory issues - the cough resumed a week later, and as I'm writing this, I feel a little short of breath).

Then, yesterday I had to visit my Rheumatologist. This was kind of an important visit because we would pretty much discuss future treatment options. I've been hoping that I can start getting off the drugs, because part of all my misery (a big part) is these drugs, especially the Prednisone and the effects it has in emotional and mental state. I told him I felt stable, and analyzing the trends on the blood markers since my infusion of Rituximab, there seemed to be a trend towards stability. He said the possibility of a second infusion was still open, but we would perform some more lab tests, and act according to the results. If they were as good as I felt, we would start tapering the Prednisone and Imuran.

Before I go on, I want to add a note here about Rituximab. This drug was given to me off-label. What that means is that Rituximab is not FDA approved to treat Dermatomyositis, but my doctor felt it would help, so he prescribed it. Rituximan is a monoclonal anti-body that works, in few words, by destroying B-cells. B-cells are an integral part in the creation of antibodies, including those that were destroying my muscles and lungs. The theory here is that B-cells play a key role in the disease, and by destroying them, and hoping the ones created by the immune system to replace them are not equally defective, the effect is a reboot of the immune system. I never saw immediate benefits from this, in fact, after the first infusion I was admitted to the ER with atrial fibrillation, one of the ugliest episodes I've endured since getting sick. But my doctor kept saying that this drug worked long-term, and be patient because the effects might not be apparent after several months. And it looks like he was right...

My latest lab results feel nothing short of miraculous to me. The main marker, creatine kinase, is at an all-time low: 278. A normal range is below 200. Basically, I'm almost there! And given variations in population, a level of 278 wouldn't be all that bad for a normal person! This means I could be looking at some hope of full remission, or at least diminish my reliance on the drugs! It is hard to convey here how happy and ecstatic I am... but mostly hopeful, as I haven't been in a long time. And it might all be thanks to Rituximab...

I just hope things keep only getting better. So, cross your fingers for me :-)

1 comment:

Todd Wallentine said...

I am so sorry to hear about your struggles but so excited about your feelings of hope.

It is also cool to hear that you are teaching. I bet you make a great teacher for those squirrelly college kids.

As always, your health and family are in my prayers.