Monday, August 12, 2013

We all have to die from something

I have not given a lot of the details of the treatments that we have tried or that we are trying at any given moment.  For the most part I think these details are boring and I know that it is selfish on my part to exclude these details from fellow sarcoidosis sufferers that read my blog and may be helped by this anecdotal information but hey we are all selfish sometimes about somethings.  In order to stream what follows out of my head a few details about my treatment are necessary.

There are no drugs approved by the FDA to treat sarcoidosis but there are five different groups of drugs that are commonly used.  Usually you start with one drug, if that does not work you switch to another drug and so on and so on.  Depending on your doctor you may go through each of these five categories in turn sometimes trying one drug from each category and sometimes trying different drugs from each category.

Now if that doesn't work they will usually try a duo of drugs, one from say category a and one from category b or maybe one category e and one from category a.  You get the idea but generally speaking they (they being the "doctors") do not like to give you more than two of these drugs at any given time.  The drugs used to treat sarcoidosis are pretty hard on the human body.  Possible side effects are blindness, liver failure (death), heart failure (death), kidney failure (not death but not pleasant), cancer (maybe death maybe not) and erectile dysfunction (definitely not a good side effect).  Those are some of the highlights of the possible severe side effects and I have not even mentioned any of the host of lesser side effects.  When you mix two of any of these drugs there are a whole new list of side effects and quite a few of those are potentially fatal.

Yawn, I am pretty bored and I imagine everyone reading this is too, but now the background is complete we can get to the good stuff.  Over the past three years I have taken at least one drug from all five of the categories and during this time my condition has continued to decline.  Now lets skip ahead to a month ago.  For people that want to use Doctor Google I will list the four drugs I was taking to treat my sarcoidosis (I wont give you the list of the sixteen other drugs I take for symptom relief and to counteract side effects of the first four drugs I was taking).  Those drugs were prednisone, leflunomide, methotrexate, and remicade.

Now after two months of taking this mix I did start to experience improvement.  Unfortunately that only lasted two weeks and then the decline began again.  This has been the pattern for me.  We try a new drug or a new combination of drugs and I see some improvement for a couple of weeks, a couple of months or a sometimes even a few months but eventually decline begins again.  We, the doctors and I, have been aggressive in our treatment of my chronic and refractory sarcoidosis and at this point to little effect, hence the refractory part.

Taking all these drugs together for little or no effect is not a tenable path forward. What does that mean?  That means that the focus going forward is no longer finding away to treat the sarcoidosis but to make me feel as good as possible.  Now I probably would have used the wording making me as comfortable as possible but the implications of that terminology probably strikes a little to close to home.  We are not stopping the remicade, methotrexate, and prednisone and there has been cases were remicade has become more effective over time but in essence we are conceding that at some point barring a lightning strike I will die from sarcoidosis and that if I continue to decline at this steady rate that point will not be to far off.

So I did just write that at some point I will die from sarcoidosis.  Not the most pleasant of thoughts but if I am to be honest the thought has been in the back of my head for the past year.  I know this post has taken a dark turn of sorts but I wanted to let you know next week I will be my charming, witty, and entertaining self or I might be wallowing in self pity but definitely one of the two.  Last but not least don't cry for me Argentina.

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