Friday, April 17, 2015

Now What?!? (Part Two)

Side effects.  A phrase that I make fun of during the endless onslaught of drug ads that seem to always accompany television news.  ("Warning:  May cause diarrhea, stomach upset, stuffy nose, sore throat, headache, tumors, muscle pain, or death.  Contact your doctor for erections lasting more than four hours."  Why would anyone take something that can do that???)  The side effects from those monoclonal antibody treatments I mentioned last time were not well understood at the time I began receiving them.  But my disease was progressing -- by this time I had had five or six surgeries to try to cut out the disease and it kept coming back worse, and in new places -- and I was desperate to try anything.  And a lot of people were getting really good results, including a reasonable percentage of folks who were experiencing actual remission of their disease.  So I jumped in with both feet.

It turns out that a similar percentage were getting, not remission, but instead:  neurological side effects.  After about six doses I started experiencing burning in my arms and legs.  I was given benadryl prior to treatment and continued getting the drug.  This turns out to have been a bad idea.

In fairness, I should say that there is an outside chance that the damage to my nervous system may have been caused by another aspect of my autoimmune disease.  But studies began to come out of Germany that indicated that a small percentage of people receiving this medication were experiencing similar neurological side effects.  I began to feel cold, or wet, or like bugs were crawling on me.  None of this had any basis in reality, but it was very difficult to ignore.  A series of neurologists led me to the ALS clinic at Penn State Hershey Medical Center where, after several tests and a nerve biopsy, I was told that something very strange was going on in my nervous system:  I had what appeared to be ALS (aka Lou Gehrig's Disease) but in my sensory nerves, not in my motor nerves.  I would be able to walk, and move, but could no longer trust what I thought I was feeling.  I need to be really careful around hot water, for example, because I can no longer accurately sense what is and is not too hot to touch.

And so, it was back to Prednisone, for a time.

In more recent times, treatments have been getting unusual, to say the least.  There is one treatment that is based on the idea that, since Crohn's is an over-reaction by the immune system, it can be treated by giving the immune system something else to react against.  That "something" is the deliberate infection of a form of hookworm.  Another theory is that it's caused by an "unbalanced biome" -- the billions of bacteria that make up our insides.  The idea is to kill off as much of them as possible with antibiotics and then give the patient a "transplant" of feces from a healthy relative.

Both of these seem vaguely disquieting.

Then along comes this new stuff, Entyvio.  The science behind it is complicated, but basically, it says that the idea behind the previous monoclonal antibody treatment is sound; just the execution has been faulty for some patients.  Oversimplifying, it was right to try to block a chemical pathway, but the wrong pathway was being blocked.  Entyvio blocks a different pathway that seems to be directly connected to the digestive tract.  It's been in use for about a year, and so far no side effects beyond a mild headache at the time of treatment have been reported.

(Next time:  So what??)

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