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?

Masked and Dangerous

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.

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25 thoughts on “Can You Spell Immunocompromised?

  1. My dear friend. Most times I don’t even know what to say. I love you! Your fight is a big one that wants your everything including your mental state. I can still see your smile through the mask and that to me is inspiring!

  2. Thank you for giving me a way to be thankful everyday for what little junk I have. Thanks for being so positive and funny. I mean heck, what else are you going to do but laugh!

  3. Stina, as a fellow RA-er, you really hit the nail on the head. I get ‘that look’ from people if they hear about all the meds I’m on and they tsk tsp and start talking about how the right diet would fix everything. Sometimes I want to scream. Do they really think I’d take the risks these meds carry if I didn’t think it was absolutely necessary? I was curious….are you using an autoinject pen, or syringes? If you’re auto-ing it, do you let the pen sit out for 20-30 minutes, numb the spot before injection? If not, try it and I hope it helps. I’ve been lucky…no side effects and injections not too bad. Much better to do them in abdomen than thighs. If Humira doesn’t work, or there’s too many side effects, many your doc will suggest Embrel?

    Good luck!

    • I do let the Humira warm up but I hadn’t thought to numb the spot first, great advice. Thank you! The Dr considered Enbrel but because I also suffer from Crohns and Ankylosing Spondylitis we decided to do Humira first since Humira has been approved specifically for Crohns as well. Even though I’ve had these symptoms for many years I was just diagnosed this past summer so I’ve just started my journey toward a manageable life. We are struggling to get the Crohns under control so we decided to skip the methotrexate for now trying to be as conservative as possible until we get that flare up under control. The Dr didn’t want to risk upsetting my GI system further. In the mean time I’m happy to try the drugs, whatever they may be. You are so right, people who don’t suffer from the symptoms of autoimmune disease have no idea how hard it is to manage the symptoms. Thank you so much for sharing your experience and your tips, it makes me feel even more confident in my choice to give the drugs an opportunity to help! 🙂

  4. I understand the joys of feeling like a walking pharmacy too. My caretaker went to get me an ever bigger 7 day pill case yesterday, and I just have to laugh because it’s bigger than my friggin grandparent’s pill cases, and I’m only 32 years old, lol!

      • Heehee. I wouldn’t be able to carry them at all, cause with my condition I can’t even carry a purse now…but I can picture my walker having an extra side box to hold them all, heehee!

      • You should patent that, you know… an added pill dispenser hanging on the side of a walker! I really think you’d find a market for that!!! ha ha ha, you crack me up! Thanks for the smiles today, I needed it!

      • Hey Stina,

        Couldn’t seem to reply to your quote above in our back and forth conversation for some reason, (do you have any idea why?) so I’m quoting you and then replying to it, lol.

        “You should patent that, you know… an added pill dispenser hanging on the side of a walker! I really think you’d find a market for that!!! ha ha ha, you crack me up! Thanks for the smiles today, I needed it!”

        So glad I could/can make you laugh Stina; laughter is really such great medicine 🙂 Also, I’ll keep in mind patenting that idea 😉 I’m SURE there could be a market for it, heehee 🙂

        Soft hugs
        Jessie D.

      • Jessie, not sure why you couldn’t respond. Weird!!! I’ll look into my settings, make sure I didn’t change anything in a pharmaceutical induced haze. 🙂

        Soft hugs right back at ya!!!!
        Stina

  5. My mom has tons of medical problems, bad heart etc and to top it off RA. She isn’t computer literate but heard about a “shot” that may cure it. She had been talking to a doctor’s wife, and that woman was on humira. So dad and I researched it and tried to educate her that it might not be a viable option for her with her bad heart disease etc. She was upset and desperate for pain relief. We dug deeper and I heard of methotrexate, I’m sure you know it. Well everyone decided to try that avenue with her, because of her age and other problems humira just wasn’t going to work for her. She has been on a low dose prednisone, and a dose of methotrexate and is doing pretty good, the pain is under control. It’s amazing what medical science can think of, I am glad that your treatment is working for you.
    Also, you are a fantastic writer, you should consider a book on what you’ve been through. I don’t know much about infertility since my hysterectomy came after my baby factory was closed, but I’m sure you could help other women out there.

    • Oh, thank you so much for your compliments and kind words. My family has been trying to get me to write a book for years. The hard thing about being chronically ill is that a project like that feels so overwhelming. My hope is that those who find my blog will also find some measure of support and comfort. Maybe some day I’ll be able to put it all together and fill in the blanks to create a memoir… I’m so glad that your mom has started the prednisone and MTX. I also suffer from Crohn’s disease so they were worried about upsetting my GI system more with MTX but as the pain increases we have been discussing adding that to the Humira, I’m also on a high dose of Pred, it makes me a little crazy though so we are trying to taper off of that…:p I’m so very glad I found your blog. I feel like we already have a lot in common, I love your blog and am excited to get caught up on reading it!

    • Thank you so very much for your kind words and encouragement! It means more than you’ll know to have such a supportive and encouraging community wishing me well.

      Stina

  6. Hi Christina, I have just been browsing your blog and wanted to tell you what an incredible lady you are! I’m 18 and my mum has been suffering from Rheumatoid Arthritis for about 10 years and has recently been given the Humira injections to try, they’ve been brilliant for her! As well as this, my sister has been suffering from Crohns since she was 12 which has been incredibly difficult for her. Stay strong, you’re such an inspiration!

    • Oh thank you so much for reading and for your kind comment! While I hate to see anyone else suffer, it is nice to know I’m not alone… My best wishes to you and your family, it sounds like you, your mom and sister are all very familiar with some of the battles I face. I hope the Humira helps your mom, I’d be interested to know how she does. Thanks again, your kind words made my night! 🙂

  7. Wow im not glad that your having problems with humira but ive been looking for people that are struggling with it also.. I was on remi for a couple of months, trying to tell my GI that it was making me more sick,, it took all those months to finally be taken off it.. now im on humira since jan 2014, and every time i see the GI i feel like he dosent belive me, well he said he dosent think the humira is causing me have these side effetcs. well what is it going to take? i hate this med, i skipped a dose cause i was going on vacation and i wanted to feel alive and normal for it.. i did see a difference, i took it on friday, saturday evening i was starting to feel sick like im comming down with something and feeling so drained out again.. also dealing with joint pain but mostly in from my hips down, ( better than with the remi) anyway thanks for your blog ! and im glad i found it, 🙂 now i just have to figure out when i will decide that it has been doing enough dammage to my health and to try an other one again..

    • Thank you so much for reading my blog! I am so very sorry it has taken me so long to respond to your comment. I have been struggling with some depression and haven’t felt much like blogging until just lately. I’m working on another post today so I hope you’ll stop by again. I’m sorry to hear about your struggles with Humira. My doc actually took me off Humira and put me on Remicade. I’m not sure I can tell any difference yet. I think that doctors forget that we’re the ones who have to live inside our bodies which makes us the experts on how we feel not them. My doc tries to tell me that my side effects have nothing to do with the biologic drugs but I’m with you because I only feel a certain way when I’m on one. Good luck on your journey. I truly hope that you’re able to find a treatment that helps you feel more like yourself!

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