Finding My Way through Crohn's: For every action there is an equal and opposite reaction

I post today with much relief today. I have had a very bumpy month and a half with Humira.
Where do I start with it all?

I fought a huge battle with my insurance company, Premera Blue Cross, over being approved for Remicade. They have a 3-4 step program to get to Remicade. First you have to take antibiotics, such as Cipro or Metronidizol. Now antibiotics aren't supposed to be used long term so using these would be more for managing small isolated issues. Not my ball park. If those don't work then you move on to steroids because those are every effective but you can't be on them for long periods of time because they cause some very very serious side effects. Those side effects will inevitably happen to everyone who takes steroids long term. Im sure you may have heard of some of them. The 3rd step is Humira and if that doesn't work out because you had an allergic reaction or something then you could advance to Remicade.

So that's exactly what happened. I had an allergic reaction to Humira. Before the bad reaction I noticed that I had smaller ones at very specific times. About 3-4 days before the next dose of Humira I would get hives for no reason. This was very confusing to me because usually I don't get hives unless I have a trigger like alcohol that I'm not supposed to have. I have learned over the years that I can't drink wheat beers. I stay away from most beer actually. I have found some gluten free beer that is quite good though. So even though I wasn't drinking even at these times I was still getting hives. Granted they were very minor, one hive or two. I started to notice the pattern after the second dose. By then I was taking Benadryl practically every day and this was causing me to become very tired all the time. I was getting hives randomly so I was taking the Benadryl all times of the day. In the morning, during work and at night. It made working hard. It made doing anything hard. Being sleepy all the time is really terrible. On the day of my third dose, the last Humira shot I would take, it was Monday June 9th. I had my husband give me the single pen injection of Humira after work as usual. We stayed home and had dinner. Nothing too eventful. After dinner we watched a movie called Pompeii from redbox that my brother in law had rented. (By the way that movie was really good if you haven't seen it and John Snow from Game of Thrones is in it and he is so yummy to look at in the movie. And if you haven't seen Game of Thrones then you definitely need to start watching. ) Anyway we were watching the movie and about little more then half way through I noticed that was getting really warm, which is the first sign of hives, for me at least. Then I got a little itchy. I looked at my arm where I was itchy and there was a little raised white dot around the red skin I had been scratching. My first thought was to take some Benadryl. I came back and watched the rest of the movie. I was thinking that everything would be fine and the hives would go away. Towards the end of the movie however I started having this feeling that I needed to cough which is strange because that had never happened to me with hives. I had no idea whether to relate it to a reaction or not. Quickly following this coughing I began to have trouble taking in a full breath of air. I would wheeze and cough if I tried to inhale fully. I started to get really scared that I was going to seriously die on the couch. The credits started rolling and Robert could tell something was wrong. I said to him "Well I got hives and now I can't really breath right. I took a Benadryl but I don't know if it was enough." We decided it was best to head to the ER in Puyallup. Robert drove like a bat out of hell and I breathed shallowly hoping that this would help suppress more reactions like my throat swelling closed. We arrived at Good Samaritan Hospital and were told to wait. :( I was freaking out but continued to breath slowly and shallow. They did take me to triage fairly quickly for a packed ER and looked me over. My whole body was covered in hives and especially my eyes. My eyes were puffy and bright red. I wish I would have taken pictures. They gave me an IV and injected me with Benadryl and steroids. The Benadryl made me feel extremely sleepy and slurred my speech. I felt like I couldn't think either. Now that I think back it was really funny but it was frustrating at the time because I was trying to tell the nurse something and couldn't articulate and actually just stopped short of a full sentence and slumped over in defeat and let the drug take over. Once I got the steroids I was leveled out and not so dumb and helpless feeling. I was sent to wait for the doctor in the waiting room for an estimated hour and a half!!! Mind you it was currently 10 pm and Robert and I both had to work the next day. So after 30 minutes I start to question staying because I feel just fine. Robert left the decision in my hands. I was worried that if I didn't stay and see the doctor for a full diagnoses and discharge my insurance wouldn't approve my moving to Remicade. But in the end I couldn't sit there in the uncomfortable chairs for another hour. So we asked to be discharged against the recommendation of the hospital and went home.

I felt fine when we left and didn't have any recurrences of symptoms that night or the next morning. I had gone to bed a few times before scared that I would wake up in the middle of the night heart racing and hives all over me. It's scary because you never know when it's going to be critical. But the next morning I woke up feeling normal. I called my doctor first thing to let them know what happened and they got in touch with my insurance to move forward with remicade. The only snag I had with the approval this time was that the inaurance needed a copy of the ER visit paper work to prove that I had a reaction. Once they had that I was approved! Such a relief. My doctor scheduled me for a remicade infusion on the day that would have been my next humira injection two weeks after the previous injection. Honestly I was happy I had the reaction. Those shots are really painful and I dreaded them. Plus I was looking forward to not having those sporadic reactions anymore.

My appointment was at North West Hospital in North Gate. Some of you might be thinking "Brooke, you live in Bonney Lake. That's so far from you. Why wouldn't you go somewhere closer like Tacoma?" I think this all the time. The only problem is that I started seeing a naturopathic doctor in late 2012. He operates out of the University District in Seattle. He networks with other Seattle doctors including my Gastroenterologist and my Gastro Doctor uses North West Hospital for infusions. So that's why I spend time and gas getting there. I really don't want to change naturopathic doctors cause I really like Dr. Donovan.

I have had Remicade before so I knew what to expect at my visit for the most part. I had all main components in mind. There are a few differences from my last time to this time however. Back in 2012 at Harbor View I lived in Renton which was not that far of a drive to Seattle. Now I live in Bonney Lake and North Gate is a grip away! In 2012 I had a PICC line in for my at home IV antibiotics so I didn't have to get an IV put in. This last time I did have an IV put in but the nurse was amazing and I didn't even feel it. I absolutely love it when they are good. The next thing was that at North West I got a complimentary meal and man their food was really good for hospital food. At Harbor View there was no meal. :( Last time at Harbor View I had a bed to lay in which was awesome because I got to take a nice nap! At North West it looks similar to most movies I have seen of Chemotherapy patience where you have to sit in a padded chair. It wasn't too bad but I wanted to lay down. (Hey 3 and a half hours is a long time). The nurse offered to bring in a bed but I didn't want to trouble her.

With infusions they make you take a low dose of an antihistamine prior to doing the infusion in case you are allergic. That makes me wonder what would happen if I didn't take it. If I would react like I did with Humira but the difference is that an antihistamine is supposed to stop a mild reaction and what I had with Humira was as close to anaphylactic shock as I want to get again ever. While I was there this time I read a book and leaned back in the chair. I snapped some picture of myself, my IV and my surroundings.

Here is couple of the images I took.

During the process the nurse comes to check on me and slowly she ups the speed that the medicine is transferred into my body. I had no problems so it went about as fast as it could and I was done in about 3 hours. Since then I have been feeling fine in the respect that I haven't had any hives at all! Score! But I did just recently have a recurrence of my abscess. It has drained and my doctor thinks that we should just wait and see if it does come back to put me on any antibiotics. My doctor said that the decrease in my immune system from the Remicade and Humira makes me more susceptible for infections and with an open fistula the abscess can happen. The only reason I am on this drug is to close that fistula up so hopefully that can happen soon because these abscesses could just keep recurring. So far its been almost a week and a half since I felt any symptoms. So for now I am just waiting for my next infusion on August 11th. Infusions happen every 8 weeks which is awesome I think. No every two week business anymore.

It also was just recently my birthday on the 25th. I turned 27 which I feel is not an exciting or scary age to turn. Its the mid way point between 25 and 30. Now I can't believe that I am almost 30 and it doesn't feel like I will ever grow out of my late 20's. I think I still have a little early 20's left in me too. But 3 years is a long time so we will see how I feel then about advancing to a new age bracket. Anyways... I just wanted to share a couple more pictures of what I have been up to for anyone that hasn't seen my pictures on Instagram or Facebook.