Thursday, February 14, 2013

Rheumie Appointment, Infusion? trepidation.

My intention was to write the update on my Rheumie appointment the day I went. You can tell in the picture below I was exhausted going into it. That was Tuesday. Even now I'm still trying to process everything and fight the exhaustion. I walked in with an optimistic attitude looking forward to the appointment. My initial meeting with this doctor went great and I was hoping for more of the same. I wasn't disappointed. As usual I answered with the "'I'm okay" when asked "how I was doing". Why do I do that? I'm not okay. I'm so used to putting on a brave face in front of everyone around me, at times I forget how much doing that hurts when I really need the help.

                                          Hubby with his RPF hat before the Appointment

                                        Exhausted me RPF shirt

                                         My Doctor's Office

The Doctor looked at my hands in particular and could see I'm not okay. We discussed my Leflunomide, I told him it was making me extremely nauseated just as the Methotrexate had.
He went over my chart looking at my 25 years of medication use. Gold shots, Penicillamine, every anti inflammatory ever made, all of the standard first and second line drugs with no results. He said "Prednisone" I'm not really sure what he was thinking at that moment, for some reason I blurted out NO. I didn't realize I had done it in a forceful manner but he began to laugh and said "that was a really forceful NO, don't worry I wasn't going to give it to you". We spoke a little more and in the end decided we are going to start Remicade infusions. (An I.V. drip). 
I have avoided these Biologic medications for 25 years, partly due to the side effects and hoped I would never have to take them. Another reason being, previous Doctors felt Methotrexate was better for me no matter how sick it made me. With Remicade, I will spend at least two hours in an infusion center at periods of one week, then two, then six, then every eight weeks if all goes well.  I see the Doctor again in two months. I had my TB test which is standard when starting this drug. My old Rheumie had me do one before I started Methotrexate years ago. I am just waiting for all the paperwork to go through, and the infusion clinic here to call. I am nervous, I.V's are not my friend :)

                                         Part of the Pamphlet on Remicade I got

I walked out of the appointment and told my husband the same thing I am feeling now. On one hand I am relieved to have a doctor willing to treat me. I'm hopeful for a medication that might actually give me relief. On the other hand, I'm sad/frustrated that this disease has gotten to this point and these drugs are required along with the risks. I would rather have a chance to live with the risk, than die after a lifetime full of pain though.
I'm sure it will all be fine. It is just another step in my ongoing RA battle. I hope after 25 years and multiple drug failures this one might allow me to win this battle if even in a small way. 

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