Actemra

In September of 2010 I started on Actemra.  My Rheumatologist gave me a choice between Rituximab, or Actemra.  After researching both I thought that Actemra was a better fit for me.  In order to go onto Rituximab under the PBS in Australia you have to be on Methotrexate to take Actemra.  I had, had a bad reaction to the MTX in the past so was not in a big hurry to go on it again.  I figured what the hell, I am going to put off taking that crap for as long as possible. SO against her better judgement my Rheumy put me on Actemra.

I have to say that I was very nervous starting it.  A good Facebook friend of mine helped me through the nerves of starting yet another new medication.  Actemra was my first go with an infusion medication.  During my first infusion I felt a bit nauseated and was given medication for it.  So after the infusion I was tired and crashed after I got home.  I was just really exhausted and wanted to sleep for a week.  The next morning when I woke up I felt better than I had in years.  In fact there was a stain that one of the kids had made on the carpet in my sons room.  I got down on my hand sand knees and scrubbed that stain til it came up.  Then I went dancing through the halls just so happy that not only did I have energy I felt fantastic.  Over the next month the only pain I had was from damage that has been done from over 15 years with RA.  I kept just waiting for the good feelings to wear off, and they didn't.  I felt good for an entire month.  SO when I went in, in October for my second infusion I was very excited.

I was started on the infusion and for the first 15 minutes everything was fine.  Then I started feeling a tightness in my chest.  I didn't worry about it too much but thought I should tell the doc so did.  Well I told a nurse who told the doc, who then started panicking.  Nothing worse to watch a doctor who is in charge of your care panic about something happening to you is NOT FUN.  SO the doc in charge of the infusion room decided I had to be admitted.  Then started a fight between 3 departments about what was wrong with me and why.  Cardiology decided that I had a simple allergic reaction, I agreed with cardiology.  Rheumatology decided that I had a heart condition. and General Medicine decided to just ignore me all together.  Well during the infusion I was given an injection of Phenergen.  After a fight between those departments and the Emergency Department, who refused to admit me, cause I had already been admitted through day surgery I FINALLY got a bed in the Cardiac department.  Finally  my old rheumy who was on the board of the hospital admitted me.  On the day after the infusion I broke out in a rash on the arm that was getting the infusion.  I had been pretty convinced from the day of the infusion that I had, had an allergic reaction.  After I was discharged from the hospital and saw my current Rheumatologist we decided that I wouldn't try and continue on the Actemra.  My Rheumatologist  had looked through the research on Actemra and had found that when a woman in the US had continued on the medication after an allergic reaction and it had been fatal.  I was really glad that she did the research and told me that.  My old Rheumy while I was in the hospital had wanted me to continue on the medication.

We decided to do some blood work to see where my levels were.  As it turned out I was feeling so good because I had gone into clinical remission while on Actemra.  It was so depressing to find that out after I had been told I could no longer stay on the stuff.