Monday, October 14, 2013

It's a No Go

Well sorry it has taken me two weeks to write this post. You can probably tell from the title of this post that my appointment 2 weeks ago did not go the way I wanted it to. Actually things were going well at first. I explained to the doctor what I felt like when I was receiving the last Remicade infusion. I told him that I would really really like to try again. He said that he was a little nervous about me trying again, but that he could slow down the infusion and increase the dose of steroids, and try that. He said he wanted to talk to the nurse first though, and see what she thought. He brought her in and she was super surprised I wanted to try again. I told them both that I think that it looked worse than it was and that they over reacted to the situation a little. The doctor told the nurse that we could slow down that infusion and give fluids with it, and she said, "well I've never done that before, but if you really think that's ok..." She sounded very doubtful and kind of condescending. He asked her if she really thought it was a bad reaction and she said yes, than said that she would let us decide and she left. I was so upset. The doctor said that she has been doing this for 10 years, and he trusts her, and that we should switch to Humira, etc, etc. I was crying by this point. He was telling me how he has patients who have been on Humira for a long time, and that it will work just as well, etc. I was thinking in my head that he can't know for sure how long it will work for me, or that it will work just as well, but I finally said ok (because I had no other choice) and then he left. As soon as the door shut I broke down and just bawled. Chris was with me luckily and just let me cry for a minute.

That day I went home and was talking to people in my Facebook group that is solely for people on Remicade. Several people told me that they have had reactions with symptoms similar to mine, or even hives, and their doctors don't seem to think much of it. They just slow down the infusion, and they don't have symptoms anymore. Some also said that they had to switch to Humira too, or that they did Humira before Remicade, and that it didn't work as well for them, or that it stopped working after 1-2 years. This made me even more upset! I was so mad for like 3 or 4 days I couldn't even make myself get on here and write about it. In the meantime, the pharmacy was calling me and setting up a shipment for it. The good news was they said that my insurance would cover it 100% (it's super expensive, like thousands of dollars a shot). With the Remicade, I was on an assistance program called Remistart that paid part of what my insurance wouldn't pay, and we still had a copay left after that.

Anyway, my husband kept reminding me of what my mom had told me about trusting Heavenly Father, and that there was probably a reason that I needed to switch. I started praying that I could accept  this change and I did start to feel more at peace with the decision. I also started to not feel well the day after the appointment. There were a couple nights where I was up all night with the pain that I hadn't really felt in the last 2 months. I was blaming the fact that I didn't get the full dose of Remicade, but it might have also been Heavenly Father's way of telling me that the Remicade wasn't going to keep working, and that I would have have to switch anyway. Besides I did get almost the full dose.

The plan was to wait six weeks from the last Remicade infusion to start the Humira, but since I wasn't feeling well I called and asked the nurse if we could start it sooner. I already had received the Humira on Saturday. She called me Tuesday and said we could start it tomorrow. So last Wednesday I went to the GI office and met with the nurse. She gave me two of the shots, and I gave myself two shots. It wasn't hard to do because I used to give myself Cimzia and lovenox shots. Two weeks from that day I will give myself two more shots, and then it is one shot every other week, with the potential of doing it every week if I need it to work better. For two days prior to getting the first dose, I was having lots of pain where my fistula is. The day after the shots, I only had a little pain, and since then haven't had any. The nurse wanted me to call her Friday and let her know how I was doing. When I told her I was feeling better, she was really happy and said that was "the best phone call ever."

So I have become more at peace with this and have put my trust in Heavenly Father that this will keep working. We are continually praying that it will keep working well.

On another note, Chris and I just had our second anniversary! More about that later....