Humira 1st Dose

Well I made it. I'm alive and didn't die from anaphallxis. Here's a run down of it all.

So last night I read like 130 pages and finished the book I was reading in order to keep myself busy. I didn't want to think about the appointment looming over me. I was seriously nervous that the nurse was going to demo the steps for the first shot and It was going to hurt so bad that I was going faint or my leg would swell up and I would be rushed to the ER. So I read for 3 hours and after I was done with the book I went to bed. My Husby tried to soothe my worries and make me feel better. He was successful and I drifted to sleep.

Waking up this morning I felt pretty calm but still not thrilled to be going to the appointment. So when the time came I started on my journey out to Seattle to Frmeont to Seattle Gastroenterology. My Husby planned to meet me there so that he could be my support. I probably wouldn't have gone alone. The closer and closer I got to the doctors office the more anxiety I felt about doing the Humira shots. It took me about 1 hour and 15 minutes to get there. I arrived at the parking garage and had a small parking issue.  I parked in a spot that had a pole in between two stalls. I tried to park so that my drivers side door would open with out hitting the pole but when I moved forward I bumped the cement wall. So I backed up and ended up with the pole and the farthest edge of my door colliding when I attempted to open it to get out. I had just barely enough space to slide through while adjusting this foot and then that foot. Small victories lol.

Robert and I walked in the door and I got checked in. There were lots of people walking in and out of doors and everytime I saw an MA or anyone who had scrubs on I got really nervous. When I get anxious and nervous or mad or frustrated I cry and my adrenaline starts. My Husby was there to talk me down and make fun of me so that I would laugh and lighten up. The person who finally called my name did not look like any MA I had ever seen. He was quite a sight actually. So this 40's something year old man very tall probably 6'4"  and skinny with a full head of dreads calls my name. I was like ok awesome dude but crap now it's time to face my fears.

We walked back to the exam room and the man took my weight, temp, blood pressure, all the usual. We sat in the little chairs and then he said she will be right with you. I was actually under the impression that he would be my instructor at the appointment. So my anxiety built up more and more now that I still didn't know who was coming and when she would be in the room. Suddenly the man reappeared and took us to another room. Just a room switch I suppose.  As if they couldn't keep my guessing anymore. By this time the tears started to well in my eyes and my skin felt like it was ready to jump off my body. Then the knock came at the door and a very nice woman walked in.  She greeted us and we handed over our Humira Starter Kit.  I asked a couple of clarifying questions and also just to prolong and delay the inevitable.

The Humira Box

I didn't know that I took this picture but this is Robert with his hand on my leg trying to comfort me while we wait.

Next we got into how to take the shots. I decided to have her do the first one. The pen has two ends one end is the needle which is concealed up inside the device until you push the button on the top which is on the other side. Both sides have a cap. Once both caps are removed your ready to inject. First she took an alcohol wipe and sanitized the injection area. I decided on the leg being the injection site. It is either done in thigh or the stomach. There was no way I was doing the stomach and I am very glad I didn't want to try it now. The next step is to kinda pinch a large amount of skin, place the needle end of the pen on the skin and apply a small amount of pressure to the skin so that in the middle of the injection you don't accidentally move away and have the needle come out. Last step is pushing and holding the button for about 10 seconds until you hear a swoosh sound and that's how you know the medication is completely done being injected.

Now when the nurse was done I said wow that wasn't too bad till the very last couple seconds and it started to burn. I was surprised and kinda shocked so I got ready to do the next one myself. So I alcohol prepped another area on the same leg, took off the caps, pinched my skin, held the pen to my skin with some pressure and hit that button. Can I just say OMG that freaking hurt so bad!!! I don't know what I did but it hurt from start to finish and I'm really not even sure how I got through that 10 seconds with out pulling that needle out. I started to cry and had to take a minute because it burned and it continued to burn for a minute after I was done. I tried to collect myself for a minute and the nurse says let do the next one. I immediately volunteered Robert. He was more than willing to do it and he was already a pro from helping me with a B-12 shot so it looked like a piece of cake for him. He asked me where I wanted it and 1,2,3 he did it. It felt like the one that the nurse gave me so I decided you know what you can do the last one too. The last one hurt a little more but not anywhere near as bad as the one I gave myself. I wiped up all the little drips of blood as the nurse wrote out directions for the remaining two I will take in two weeks. Before we left she checked my legs to make sure that I wasn't having a reaction and gave me a tissue for the road and we were out of there.

So in the end it wasn't that bad but I don't think there is any way I am ever going to give myself one of these again. If Robert wasn't there it probably would have been a much worse appointment for me so for that I am very thankful!

XOXO

Humira

I know that I haven't posted a blog in a long time. Life gets busy and I don't find time to write down my thoughts and feelings. Much has happened in the last for months. Good and bad. At least the bad haven't been as bad as they could be. There have been some new developments with my Crohns that have put me in a very serious position.

In February I came face to face with a decision. My husband and I had the luxury to plan a trip with friends to watch the super owl in Vegas. This was going to be second time and first with just friends so I was pretty excited. A couple weeks before the trip I started noticing some weird things going on. I had developed a painful lump in my groin. Now this wasn't very unusual as my glands tend to get irritated often. The strange thing was that the closer to Vegas the larger and more painful this lump got. This doesn't usually happen. Usually the swelling goes away on its own. So I decided that I would wait until after Vegas as I really didn't want the doctor to tell me not to go. As the weekend went the worst the situation got and by the end if the weekend it hurt to wear tight pants and in some cases walk. This was starting to remind way too much of my abscess that sent me to the hospital in 2012. When we were on our way home I was very relieved and dead set on seeing my doctor ASAP.

Luckily I was able to see my doctor that week. I told him all about my symptoms. He too was concerned about an abscess so he laid out a plan that started with an exam. It turned out that the lump in my grok. Was nothing but an inflamed gland. But the inflammation was the worrisome part because that means that another part of my body was no in good shape. Now I have been dealing with a fistula or two so my doctor thought that maybe there was an abscess that had formed stemming from the fistula. I had an exam, CT scan and an appointment with a surgeon to determine what was happening and what needed to be done. The bad news is that the fistula has tunneled to another organ in my body but the good news is that the fluid from the abscess is draining so I'm in no immediate danger and that surgery is not an option. The next topic for discussion was treatment. By no means is having an abscess a good thing so I need to fix that.

My Naturopathic doctor suggested that I see a GI doctor within his network so that he could be in the loop of my treatment better. I went to see Dr. Tobin of Seattle Gastroenterology. He was nice enough doctor who talked to me about treatment. What he suggested was that I get on a biologic drug which show to be more effective in treating more complicated cases of Crohn's, which I happen to have. (lucky me) So we went over the different brands basically. We settled on Humira because it was a self administered drug. I already take B-12 via IM injection so I thought yeah this will be easy. I left with a good outlook on things. I had to wait 2 weeks for the medication to get approved and mean while my naturopathic doctor had prescribed some antibiotics to bring down the abscess so that A I would get relief and B so it wouldn't get worse when I started Humira. Humira is an immunosuppressant drug that inhibits your body to fight infections. If I still had a raging abscess while on this drug then it would do more harm then good.

Also while I waited for approval from my insurance I started searching Humira on line more. I wanted to know how it was administered and what people had to say about it. My doctor never covered the the details about each drug. Turns out that a lot of people say the medication stings pretty bad going in, some get a large welt after and some even have to take a Benadryl because of itching and rash. Someone described the feeling as battery acid being injected in her leg. I heard that this is because the liquid needs to be refrigerated and warming it up to room temperature helps. Other tips were to numb the area with an ice cube before injecting. I also found out that the first time you take it you have to take 4 syringes, then 2 two weeks later and then 1 every two weeks. WOW.

The more I found out about this drug the less and less I like it. I don't want to take something every two weeks that i'm going to have to ice my leg down for and have it feel like i'm injecting fire in my leg or stomach for 30 seconds. 30 seconds is a long time for pain. So I called back my doctor and said you know what Remicade isn't sounding that bad right about now i'd like to switch please. The doctor approved of my concern for switching and so we waited again for the approval from Premera. (side note- Remicade is also a immunosuppressant but it is given via IV injection. You receive it over a couple of hours time every 3-4 months. I have had this before in 2012 before my surgery. I know A I am not allergic and B it has been around for longer and has more research.)

After a few weeks I got a denial letter in the mail from Premera because I didn't try Humira first they would not approve Remicade. I was very upset about this. I called my doctor and spoke with his nurse about what could be done. She said that the doctor talked with the insurance and tried to fight for me but the insurance wouldn't budge on their decision. My secondary insurance said that the medication was approved under my plan but they couldn't tell me until they were billed. That means that what ever percent would be covered after the procedure was don't.However I wasn't given a 100% answer of assurance since they can't tell you  unless the procedure has already been done. So I am siting there with weighing the option of just getting the Remicade and possibly paying 5000 out of pocket plus other costs. After talking to the nurse and medical billing 3-4 times, calling Premera 3 times, crying and having a full on nervous break down, and discussing things with my husband I caved in and decided that Humira was my only option. I felt let down and angry with my insurance for forcing me to take a drug I wasn't comfortable with or taking not treatment at all. I was hopeless and very very angry.

Fast forward 2 and a half weeks and I am less than 24 hours away from taking Humira for the first time. I pick up my starter kit today which cost 100 dollars and tomorrow morning I meet with a nurse who will explain how it works, demonstrating on me and then letting me try. A training then call it. My husband will be there to support me as I do this even though I really don't want to and I think I might have him inject me with one so that later on if I don't want to do it then he can for me.  I am nervous for what it will feel like and what will happen to me afterward. My hope is that I will go into Anaphylaxis so that I won't have to take the Humira anymore and be switched to Remicade or at the least I have some kind of allergic reaction even on a very small scale to complain about. Things could turn out fine and I am just being a big baby about it. Speaking of babies, Humira and babies don't mix so as long as I am on it I won't be able to breast feed but that also tells me that I shouldn't be pregnant and on this drug. Not that I am planing on having babies anytime soon but you never know whats going to happen.

Life just keeps getting more and more complicated. hopefully I can update about the outcome of the Humira before another 3 months passes.

XOXO