Can You Spell Immunocompromised?

I feel like a walking pharmacy. If you’ve ever gone out to eat with me you’ve probably seen me whip out my little “pill pack” and down handfuls of pills in one swallow. Some of them are just your run of the mill, over the counter, vitamins and supplements. However, most of them are actually pharmaceuticals that supposedly keep my body running. Although lately I’m beginning to wonder if I’m taking drugs to counter act the drugs that counter act the other drugs, and so on… Why do you care you may ask? You probably don’t but I’m going to share anyway, because I’m just nice like that. The topic of the day will be a fun drug they have started me on called Humira.

First a little bit about Humira. I’ve provided a link to an article written by the Mayo Clinic that I find helpful in explaining what this drug is and what it does. I apologize for the technical nature of this post; my snarky comments won’t make sense unless you know a little bit about Humira to begin with. Context is everything people! Humira is a biologic, or a TNF blocker. TNF-alpha is a protein your body produces as a natural part of your immune system. When your body encounters an infection this protein sends your white blood cells to fight the infection which temporarily causes inflammation. Normally once the infection is taken care of your body will remove those white blood cells and return to its natural state. However, if you have autoimmune diseases like those that I have, Crohns, RA, and AS, your body doesn’t stop the TNF-alpha which in turn causes more white blood cells to flood the area. The inflammation builds up which is what causes pain and damage. Essentially your body is attacking itself. Humira blocks this protein and reduces inflammation. It is not a cure, but it can slow the progression of these diseases making them more manageable. Unfortunately there are just a few side effects to consider.

Every other week I have to give myself an injection. It is rather unpleasant and stings like crazy. I’ve had to give myself injections before and, once I got used to the idea, found that it didn’t really bother me. This one, however, is so painful that I find myself with the needle poised over my stomach with my heart pounding each time I have to do it. Then for one to two days afterward I am so fatigued I can hardly move or think straight. Add to that aches and pains that feel as if I’m coming down with the flu and you’ll understand why I dread these shots. I usually pick a Friday night so that I can use the weekend to recover. So when you see me slumping over in church just lend me your shoulder and I’ll try not to drool.

Speaking of church, this is a picture of me ready to go to church, or anywhere in public for that matter. Aren’t I cute?

I know, I look oh… so… mysterioso, right? I get asked all the time, “You’re sick right? And you don’t want to share your germs?” NO, everyone around me is carrying illness. Think of yourselves as giant petri dishes transporting all kinds of nasty microbes that could kill me. Not to offend, but the truth hurts sometimes. So I am trying NOT to get sick. Because Humira is virtually preventing my immune system from doing its job, I am vulnerable to catching any and all kinds of infections. During cold and flu season I’ve been advised to take every measure to protect myself seeing as the common cold could develop into something nasty landing me in the hospital…  or worse. My immune system has never been really stellar at protecting me anyway. I guess it is too busy trying to kill me off to actually do its job and attack an infection. So now we are suppressing my already mixed up immunology. Yay me, just don’t be surprised if I shy away from human contact and don’t be offended if after hugging you or shaking your hand I run for the hand sanitizer and bathe in it. It’s not you; it’s your stealthy bugs. I still love you!

There are other fun side effects as well. Check out this link and let’s go through some of the highlights together. Humira Side Effects.

• Cancer. For children and adults taking TNF blockers, including HUMIRA, the chance of getting lymphoma or other cancers may increase. There have been cases of unusual cancers in children, teenagers, and young adults using TNF blockers. Some people have developed a rare type of cancer called hepatosplenic T-cell lymphoma. This type of cancer often results in death. If using TNF blockers including HUMIRA, the chance of getting two types of skin cancer (basal cell and squamous cell) may increase. These types are generally not life-threatening if treated; tell your doctor if you have a bump or open sore that doesn’t heal.

WAIT What? Yep, rub your eyes all you want but it will still be right there on your computer screen. Cancer, a side effect. Notice about half-way down the paragraph where it points out the connection to a rare cancer and in a matter of fact follow up they state, “This cancer often results in death.” Hmmm, really. Notice also the increased risk of developing skin cancer. Since I have already had melanoma my dermatologist is now asking that I be seen every 3 months instead of every 6. Oh joy!

• Serious infections. These include TB and infections caused by viruses, fungi, or bacteria. Symptoms related to TB include a cough, low-grade fever, weight loss, or loss of body fat and muscle.

We already knew about this one, hence the necessity of the face mask. I really need to find a way to spruce those things up, maybe I could bejewel them, add a little bling? Oh that would be fun!

• Hepatitis B infection in carriers of the virus.

Uhhhh, this one speaks for itself. I’m not a carrier; at least that I know of, so I’ll be skipping this I hope.

• Allergic reactions. Symptoms of a serious allergic reaction include hives, trouble breathing, and swelling of the face, eyes, lips, or mouth.

So far so good knock on wood.

• Nervous system  problems. Signs and symptoms include numbness or tingling, problems with vision, weakness in the arms or legs, and dizziness.

Yes, yes, and yes. To be fair the dizziness might be due to my Meniere’s disease but the numbness, tingling, and weakness in the arms and legs is all the Humira’s fault. It usually sets in at night and stays through most of the morning. There have been a few mornings soon after my bi-weekly injections when I’ve had to pull the crutches out until my poor little body sorts itself out for the day.

• Blood problems. Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.

As far as I know I’ve not been feverish so far and, thanks to the large dose of prednisone I’m on, being pale is not a problem either. (Prednisone causes a flushed look, I’m saving money on blush.) I’ve always been one to bruise easily thanks to the Ehlers-Danlos Syndrome but this is nuts. I wake up in the morning looking like a prize-fighter who took most of her hits from the waist down.

• Heart failure.

Let’s hope not!

• Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on the cheeks or arms that gets worse in the sun.

So let’s be clear. This drug which is supposed to address autoimmune symptoms can actually cause them to worsen? Just making sure I read that right! I’ve already experienced the worsening joint pain. Since starting Humira I’ve been awakened almost every night with sharp shooting pains in my elbows, wrists, fingers, hips, knees, ankles, and feet. It is excruciating. The first time it happened it really scared me because I couldn’t support my own weight through the joint pain so we ran up to the ER. They gave me a prescription for narcotics which don’t help so now I’ve started a fun drug called Neurontin. I’ll blog about that later; we’ll stick with Humira today.

• Liver problems.

I must have a liver panel done once a month, so far so good. Keep your fingers crossed.

• Psoriasis

I shudder at the thought. I’ve had my Psoriasis under control for years. If this one comes back I really don’t think I’ll be able to handle it.

In addition to this fun-filled list add the fact that Humira generally costs around $2000 a month… Pick your jaw up off the floor, I see you ogling at the screen again. Thankfully my husband has great insurance and the drug manufacturer has an assistance program that brings the cost down to a much more realistic amount. There are a few different TNF blockers on the market today. From what I can tell, little research has been accomplished in regards to which drug works best for which autoimmune condition. Humira has been approved for Crohns, RA, and AS. Ding, ding, ding… so this was our winner!

There you have it. You are probably wondering why I’ve agreed to take this drug. I mean why put myself in the path of the oncoming train wreck so to speak? Because, what choice do I have. This is the thing about chronic illness. You often find yourself between the proverbial rock and hard spot. Can you live with the symptoms of your disease or do you choose to take on the possible side effects of… not the cure, but something that could make your life more manageable? And does it really make your life less complicated to deal with the side effects? In my case, it is yet to be seen. They tell me that to give the Humira time to work I need to be on the injections for at least six months. I’ve really thought about this one and again I decided to rely on faith. I have a good feeling about trying this drug; so for now, this is what I’m doing. In the mean time I’m poking myself with that blasted needle and reaching way down deep. I mean down, down, down deep… all the way to the tips of my toenails… to find my signature positive attitude. Don’t be surprised if there are days though, when if you ask how I am, I give you a brutally honest answer because even my positive attitude has chinks in its armor.