Some Advice for Those Starting Biologics

Remicade. Humira. Cimzia. Simponi. Tysabri.

These are the names of the biggest, baddest class of drugs used to treat inflammatory bowel disease. Some of these are classified as chemotherapy. They all work by suppressing the immune system. I am not a doctor, and not do a very good job of explaining how these drugs work. However, this video does a great job of explaining it, so please watch!

Hearing these names make me feel so many things. Danger, hope, thankfulness, apprehension, confusion. If your doctor has told you you need to take these drugs, things are pretty serious. Your disease is moderate to severe.

For a lot of people, they may feel fear when deciding to take these medications. You're at risk for deadly infections, cancer, and allergic reactions when you take these drugs. It is never a decision to make lightly. You have to be tested for certain infections like tuberculosis and MRSA, because having infections like that while on these drugs will make you very sick, and possibly very dead. I cannot stress how important is to keep clean while on these meds. Stay away from people with communicable disease, and for the love of Pete, wash your hands after using the restroom, before eating anytime you cough, sneeze, etc. Let your primary care physician and gastroenterologist know if you start running a fever. There are lines you can call after the clinic is closed to reach an on call doctor- please do so, and they will let you know if you need ER or some Tylenol. You only get one body, and I don't want any of you to die young. These drugs are available to help your health, but that comes with a cost that affects more than your wallet.

When I was diagnosed in September 2011, my disease was in such a severe flare, my doctor told me I had to take Remicade and get surgery, or I might die. I was in so much pain, and was so sick, I really did not care what the side effects or risks might be. I just wanted to be well again. While each drug works differently and every patient has their own experience, in me, it worked so well that three days after beginning infusions, I went from so sick to needing surgery and possibly dying anyway, I no longer needed surgery and probably was going die of my own klutziness than IBD.

Alas, after my third infusion, I woke up the next morning unable to move because Remicade had made my joints that stiff. I was in pain, running a fever, and could not even dial 911. I don't know how long I laid there in bed having a panic attack because I thought I was dying, but when I could finally manipulate my fingers enough to hold up my phone, it took me five minutes to dial the doctor because my hands were that stiff. I was told to head to ER right away. I was able to call my mom and have her drive me to ER, where I was given morphine for the pain (and it didn't work) and sent home. Lab work later showed I had developed an antibody to Remicade. That means my immune system was such a bad ass, it decided Remicade was a bad guy, and now Remicade will never work for me again. But I loved it when I had it! I got to snuggle in a big chair surrounded by ither IBD patients, and sleep the benadryl away. A nurse would come check on me every now and then... it was great. It worked like a charm until my stupid immune system decided to kick rat crack to the curb. (Remicade is made of 25% mouse proteins, hence "rat crack".)

After it was discovered that Remicade was no longer an option, my GI at the time and I decided to give Humira a whirl. I was still very sick. Before Remicade, I had been going to the bathroom 40+ a day. With Remicade, that number dropped to 10-15. But in those few weeks with no biologics, I was spiking up to 20+ a day again, and was becoming more and more crippled with pain every day. It was clear to me that I need biologics to manage my IBD. I can't get away with Asacol, or 6MP by itself, prednisone, etc. I need biologics. I began Humira December 2011 after Remicade failed in October/ Novemeber 2011, and added Imuran in March 2012 to help give my Humira a boost.

Humira and Imuran were working grand for me. In October 2012, I got a cold that lingered. Something was going around at work. By Novemeber, I was very ill. I was coughing almost non stop, and lost my voice. I spent Thanksgiving Day in ER because I had bronchitis, and couldn't breathe. I was given antibiotics, and by January, I was mostly over bronchitis, but had managed to get c diff because the antibiotics for bronchitis hasd messed with my gut. It wasn't until April 2013 I finally felt better and was able to celebrate my 21st birthday with alcohol. WHOO HOO! TWENTY ONE!

Me, weeks after turning 21. I think I pretty much looked like this any given afternoon or evening or night. But never in the morning. I didn't party THAT much.

Let me say this: Remicade makes you sleepy because of the antihistamines they give you to prevent reactions. But Humira can make me pretty sleepy, too. Maybe not nearly as exhausted, but there's a reason I only take Humira at night. When you take biologics, you are pounding your immune system into the dirt. You are stomping on it and telling it who is boss. But your immune system is part of your body, and your body gets pretty worn out from being beat up. For me personally, I feel pretty tired for a few days after I take Humira. The first time you take Humira, you are given a loading dose of four pens. I was so exhausted, I slept for two or three days. I'm pretty sure I called out of work sick those first couple days, and I probably called out sick the first couple days after the rest of my loading doses. After finishing your loading doses, you generally inject once every two weeks. (I recently had to have my dose upped from once every two weeks to once every week. I also take Imuran (azathioprine), which I started in March 2012, to help give my Humira a little boost. For me, this combo works great. I have pretty much been in remission with these drugs. I do start to bleed and will be in terrible pain if I forget to take Humira, though.)

My pharmacy accidentally sent me a syringe instead of a pen, and let me keep the syringe. The card is the same size as your standard credit card. Some people say the syringe hurts less, but I'm a wuss and can only do the pens.

To people who are having the TNF blocker/biologic discussion with your doctor: it is okay to ask questions. It is okay to challenge your doc. It is okay to be scared and cry and not know what to do. These are scary drugs! I've been on biologics for coming up on three years now and they still terrify me. But, at the end of the day, you need to make that choice, and you need to do it as an informed patient who takes charge of their health.

If you are getting an infusion, bring your iPod, smart phone, book, Kindle, whatever. You might sleep through the whole thing, you might make friends with your neighbor, or you might have time to read a little. I personally always slept through my Remicade infusions. I don't know how other injections feel, but Humira hurts like a wasp sting and I dread it every week. I let it warm for 45-60 minutes at room temp to help warm the drug, and also ice my leg. That helps with the sting, but I also like to reward myself after I inject with a song I like, a YouTube video I've been meaning to watch, a manicure, dairy free chocolate, or whatever else makes me happy that night.

I can't give tips or experience stories on other biologics specifically, but please feel free to comment and share your own experiences to biologic newbies.

Look at my sexy lady leg and that week-old Humira bruise.  Really bringing the boys to the yard with that.

Please note that I am not a trained medical professional. I am only an IBD patient speaking from my own experiences. If you have questions or concerns about biologics that you are on or are considering taking, please ask your doctor or speciality pharmacist. If you think you are having an allergic reaction to your medications, call 911 and get to your local emergency room right away. I am happy to speak from my own experiences, but I am not your doctor, and have no intentions of becoming a doctor at this point and time.

Menorrhagia is a B****

A few weeks ago, I wound up in ER, because if it's not one organ bleeding, it's the other.

The beginning of my senior year of high school (2009), my periods almost completely stopped. There was no reason for it, as far as I could tell. I certainly wasn't pregnant, and other than stomach issues that had plagued me since childhood, I seemed healthy. So what if my stomach was always too bloated to wear jeans? I wore long shirts and hoodies to cover up the fact that some days, I couldn't even button up my pants. I had this black swishy, knee length skirt I loved to wear because it was stretchy across my stomach. I could actually breathe comfortably in the skirt, and I began rummaging through my friends closet to find clothes that seemed to fit over my ever-expanding belly better. She had a lot of skirts, whereas I had always stuck to pants and jeans, which were growing increasingly uncomfortable on me.

When my mom and I went shopping for my graduation dress, I made sure it was not only black, but also comfortable around my stomach. I didn't care that it was tight around my ribs. I looked good, and the waistline was high, so it didn't cinch my now very painful stomach.

A month after graduation (2010), I had moved out of my parents house and into my grandparents to be closer to the city and hence, better schools and better jobs. I looked in the toilet one day to find the bowl was bright red. You guys know the rest! Many doctor's appointments later, and I was told that I was just having panic attacks and some minor hemmrhoidal bleeding. I ended up in the hospital for a month in 2011, nearly died, and narrowly escaped surgery.

From September 2009 to April of 2013, my body was unable to have a period, because I was too ill, too malnourished, and too underweight. Sometimes I would get very light ones, but they'd last a few days, and I might have had one or two a year, tops.

Last April, I decided to get a depo provera shot. I was healthier than I had been in a long time, but I still just didn't have any periods. After talking it over with a gynecologist, we came to the conclusion that my hormones were just wonky, and birth control might help. I'm terrible with remembering to take my medications at the exact same time every day, and a shot seemed to be pretty easy to handle. So I took it, ended up going bat shit crazy because mental illnesses and depo apparently don't mix well at all, destroyed a relationship with a friend of mine (I'm still humiliated by the things I said and did in a hormonal rage, and I've tried blocking them out of my memory) and contemplated suicide and just did  lot of risky, stupid things. Seriously, me and depo don't mix well at all. And no wonder! On top of my depression and anxiety, I've also been diagnosed with borderline personality disorder. This is a topic for another blog post, but long story short, I feel emotions more intensely than your average person, and it causes emotional distress for me on a daily basis. For the IBD patients who read my blog, imagine being on prednisone every day of your life. That's what it's like being borderline. Hormones can be tough on anyone, but for me, it was too much, and I'm actually very surprised that I only destroyed one relationship, didn't kill myself, only relapsed in self injury a little, didn't become an alcoholic (though people were constantly telling me to lay off the liquor) and actually kept my job. I only had one shot, but it took about three months for me to feel any sort of relief. I don't remember when I actually started feeling normal crazy and not depo crazy again. Point is, it was hell. (Hell seems to be a theme on my blog.)

Not only did depo make me destroy a relationship with my friend, it made my periods worse. Now I was just bleeding non-stop. Before my senior year of high school, I had normal periods. They hurt, made me swear off teen sex (because holy hell, if this hurt, I couldn't even imagine labor), and made me go shopping for chocolates, tampons, and movies like all the other menstruating girls at Target.
From last April to this April, I've bled almost every single day.

Mostly, it's just annoying. I wasn't really having any hormonal mood swings, just my BPD ones. It wasn't ever heavy, and since my IBD seems to pretty well manged, I didn't really care. My uterus is supposed to bleed, not my rectum, so I figured as long as my rectum wasn't bleeding, who cares?

Except my body did. I woke up one day light headed, and it only got worse over the course of a few days. I did not immediately suspect dehydration. I drink 100-200 oz. of water every day. I was first dizzy and lightheaded on a Thursday, and by the following Monday, I was so out of it, I told my manager I had to go to urgent care because I had no idea what was going on. I got to urgent care, and the receptionist looked at my symptoms, called the nurse, and I was taken back right away. I thought that was odd, because everyone else had to wait to be seen, and this receptionist spent maybe twenty seconds with me before getting a nurse. The nurse told me to go to ER. "Ah," I thought, "she's just overreacting. I'll go home and rest for a while". My urgent care clinic is about four blocks from my apartment. I got lost crossing the street when I left. I was so dizzy and confused I had no idea where I was. I didn't understand why the buses were all going the wrong way, or how to get home. It was then I realized I actually did need ER.

Two ER trips later, several bags of fluid, two ultrasounds, multiple exams, EKG's, a heart monitor, the discovery of low blood pressure and high sodium, and almost a week out of work later, we ruled out the scary stuff. My uterus isn't bleeding because of cancer, cysts, or anything like that. I don't have any diseases or infections of my reproductive organs. I'm just a dumb patient who thinks she can handle anything, and got way to dehydrated from fluid loss from a period that never stopped because her hormones are out of whack. Go, me!

I was diagnosed with menorrhagia, and I am now on low-ogestrel (the Pill) to get my hormones back under control. I hate taking hormonal birth control. I've been on the Pill now for two weeks, and while I'm nowhere near as bad as I was last year on depo, I'm still miserable. I have six more weeks of feeling extra touchy and more wound up than usual. It's like my brain is constantly on fire, and now someone is dumping alcohol in the flames.

I just want to stay away from people. I'm afraid of ruining more relationships, and I'm afraid I'm going to lose more people in my life. I'm having a really hard time remembering to take my medications at the exact same time every night, but I haven't missed any doses. My period stopped (finally!) after being on the Pill for about five days. Here's to not destroying more friendships in the next few weeks!