Sunday, June 23, 2013

Remicade Begins

It is hard for me to leave the house.  I do not enjoy going to hospitals.  When  I get home I am sore to the point of immobility and fatigue, well do not even get me started.  All that being said none of these are the reasons I dreaded going for my first Remicade treatment.

Over the last three years that I have been ill Remicade was always in my back pocket that if things got real bad we could always pull out the Remicade.  The fact my doctor wanted to start Remicade indicates that things are really bad.  Also and more important for my psyche is that there is nothing left to try if Remicade does not work.  This is the last drug that is used for sarcoidosis.  After this I might be heading to Canada to see if hook worms can modulate my immune system.

The post is actually being generated over a few weeks.  My second treatment is coming up this Tuesday.  The first treatment was a non-event for the most part.  It was painful and I could not get comfortable in the hospital bed, but the staff was nice.  I guess I should specify I was in pain from being sick the treatment itself really caused very little pain.  The only side effects that I experienced the day of the treatment was some burning at the IV location and a headache.

The next week after that first treatment was quite rough.  I thought sarcoidosis had taught me what fatigue was, I was mistaken.  I slept twelve hours every day, one day I even slept sixteen hours.  I would wake up tired even after sleeping that long and my limbs felt like they were soaked with water to the point were they had tripled in weight.  The second treatment is coming up and I have not noticed any improvement but there probably wont be any noticeable improvement until the about two months in.

The second treatment is over.  This time I was much more prepared.  I have finally gotten Fallout 3 to work on my Windows 7 laptop.  A small thing but with a large impact.  First I have never finished the DLCs of Fallout 3 so this would not be a rehash but some new game playing experience.  Sorry I nerded out there a little bit.  The point is I brought a game and my narcotics so I was much more prepared.  I took the narcotics and the headache was minimal and playing Fallout 3 the time flew by.  Four hours and out.

The next week after the the second treatment was much better.  Now I was still tired but did not sleep over twelve hours.  My limbs felt a little damp but not soaked.  I still have not noticed improvement but as always I am still hopeful.

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