When I first began injecting myself in the leg with harsh, genetically-engineered chemicals, I was terrified. I still am. Not of the shot, but of the drugs going into my body to help manage my Ankylosing Spondylitis (AS).
Biologics, a type of specialty medication made from living cells and tissues, come with potential side effects like cancer, tuberculosis, and heart disease. When I first read the drug pamphlet, the dangers written in margins and between the fine print triggered my first post-diagnosis breakdown. I was 26, had been seriously ill just once in my life, and was finding my groove in the adult world. This was the first of many blubbering, head-throbbing, “Why the hell me?” temper tantrums that left me in a trembling blob on my bed.
What could possibly convince me to push this harsh medication through my body – maybe for the rest of my life? Logic and realism prevailed over emotions, and statistics were drowned out by my need to swallow the pill, so to speak. Above that consuming fear was a desire to have a semblance of my former life back, and this medication promised that possibility.
A week later, I sat in one corner of a large room with a nurse, shaking as I learned how to give myself a shot. She watched as I held my breath and pushed my thumb in and out, quickly, to trigger my first dose. My life flashed before my eyes and I cried precisely two silent tears – what had I done? Certainly now I would die of sudden-onset cancer, be ripped from life by tuberculosis, or my heart would fail in my sleep (if I was lucky). The contradictory decision to sustain life by injecting what I saw as a death-threat substance grabbed me with icy, bony fingers and shook me, hard.
The course of my life was now officially altered. I had joined the ranks of being specialized-medicine patient. I had taken the red pill.
Every two weeks, my Humira shot was a source of terror mixed with anxious excitement. Each dose signaled a step closer to the sure destruction I was causing. I was gambling with what I could only picture as death, for the hopeful sake of a better life.
Three months after beginning Humira, my first biologic, my doctor cocked her head to one side and asked, “So, is it working?’
“How do I know if it is working?” I replied. I still had considerable pain, stiffness, and the same aches and spasms that had coursed through my body since I was 13.
She told me the goal was to be symptom-free, even though biologics are made to target the disease at its core, not symptoms. She said that maybe this wasn’t the right biologic, that we should try another one. I pushed to the back of my mind what other patients had said, that biologics could help but they did not catapult people back into 100% bodies. In my desperation, I still wanted to find a miracle drug. We settled on another biologic, Enbrel.
I was on my third month of Enbrel when I got the flu and and had to miss two shots. In the days that followed, my AS symptoms returned with a vengeance as if on a wave of fire, drowning the progress I hadn’t even noticed I was making with Enbrel. I felt my pre-diagnosis, 19-year-old body again. I cried from the pain and spasming in my back and hips and knees, wishing earnestly to trade places with William Wallace in Braveheart when his limbs are stretched beyond ability in three directions (Trigger warning: torture scene – Start watching this video at the 1:00 minute mark). I felt that if anything could provide relief, dislocating my joints would.
The unrelenting pain and spasms that caused me to writhe in bed but not able to stand were symptoms that Enbrel had reduced. I did not know how much the biologic drugs had been helping until I had to stop taking them briefly.
Since that first psychologically jarring dose of Humira, I’ve given myself countless shots weekly or monthly with either auto-injector pens or syringes of Humira, then Enbrel, then Cimzia.
Not every biologic works for every person and they can lose their effectiveness, so I have now progressed to my fourth, Remicade. Rather than shots, I receive it intravenously in a cancer center every 8 weeks for two and a half hours. While other biologics I have used take a few months to become effective, Remicade takes longer, so my doctor recently increased the dosage to see if my body would react faster.
I have been hopeful that Remicade would become the miracle drug – I am tired of trying different biologics (each one comes with its own menu of potential side-effects). I want to find the right biologic for me, one that will be effective for many years.
BUT.
I recently discovered Medi-Cal (California’s version of Medicaid) will not cover my Remicade infusions, which I was receiving prior to being covered by Medicaid. Medi-Cal has not denied but rather deferred their decision, stating they need MRI proof of disease activity before they approve the treatment (remember, I’ve been on biologic treatment for years). MRI proof is not required for the diagnosis or treatment of AS. I have the choice to either fight for hearings and court orders so I can receive treatment, or slide backwards into step-therapy with medications that were proved ineffective nearly four years ago. Either choice leaves me fighting for survival.
“No insurance plan can reject you, charge you more, or refuse to pay for essential health benefits for any condition you had before your coverage started.” – Healthcare.gov
At the time I write this, my last infusion of Remicade was three weeks ago. In five weeks my next infusion should happen, but the $1,300 to $2,500 average cost per dose is impossible without insurance. I am terrified of the onslaught of debilitating symptoms that will return when Remicade has left my body.
While I still fear potential side effects and dream of even better treatments (and a cure!!), the benefits of biologics are paramount to the toll on my body without them. Even with their threat of death-by-side-effect, biologics keep me alive and functioning in a way that no other treatment can. They keep me from being completely bedridden and give me a near-promise that my life will be better and longer than my dad’s (who died from AS).
There is no substitute for treatments that have already been proven most effective in managing a disease. I will not give up.
This is for all of us spoonies.
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BeingCharis 
So sorry to read this. It is truly heartbreaking that you have to fight for survival even more than you already are.
Everything is new for me with this disease so I apologies in advance for what might be a stupid question. You mentioned that they are asking for MRI proof of a progressing disease. Hasn’t it been progressing lately because of the biologic injections? Wouldn’t an MRI show anything on you? You are obviously struggling a lot with pain and stiffness. It is so cruel how the insurance companies work and only the most needy will suffer in the end.
Sending you gentle hugs and hope it will work out for you.
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Hi Shine, a lot of people with Ankylosing Spondylitis don’t have radiological proof of damage (which is a good thing, you don’t want the damage!) to go along with symptoms.
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Thanks for responding.
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And just saw this post is iver a year old. Hope it worked out with th insurance in the end. ✌🏻
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Your blog is so very hopeful. I’m glad I found it. I will be 40 in September and I have just been tested for AS after being shuffled around from doctor to doctor going on 9 years. I am actually on a waiting list for a back surgery when I asked for a referral to see a Rheumatologist (don’t know why, just a strong feeling I should talk to one). He was pretty upset it took me this long to be referred to him. He knew with no doubt what I was living with, ordered my first SI joint X-rays, lab work, and gave me a prescription for mobic (to my surprise he wasn’t trying to push pain killers on me, which I refuse to take anyway). I have so many mixed emotions. Relief I’m not crazy, anger because no one believed me, and sadness from loosing some of the best years of my life to pain.
I hate that anyone else has to go through this, but relieved to know I’m not alone. Any advice would be very well received and encouraging.
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Hi Martha Chase, I’m glad you stumbled across this blog as well! I’m glad you seem to have found a proper diagnosis (and were spared back surgery!!!), but I understand all too well the resentment that comes with the diagnosis. There are lots of support groups to be found online, through facebook and also through chat rooms on the Spondylitis Association of America (SAA). The SAA also sponsors patient-led support groups across the USA, so depending on where you live there may be one nearby! http://www.spondylitis.org
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Thank you for telling your story like it is. It’s trully inspiring. I also have AS and I’m on Remicade, my second biologic. It’s working well and I hope it will get me a part of my life back.
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I’m so relieved to have found you. I was first introduced to your story through your TED Talk, and I’ve been binge-reading your blog, looking for the next support group meeting, etc. I’m comforted to know that I’m not alone, and more than that, after reading your bio I’m encouraged to do more. More of the activities I love, more raising awareness, more research about this new diagnosis I have. I’m just completely inspired by you. Thank you.
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Thank you Ali! I am glad you found this, too. Keep putting one foot in front of the other, and breathe. You’re so welcome.
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This is such a similar story for many of us spoonies. I’ve been on Humira for 3 years now, and it isn’t really working for me anymore. My doc wants me on Remicade. My insurance will cover the medication BUT not the infusion service. So how are patients who need this drug supposed to get it inside our bodies? Thanks UHC. Stay strong, everyone!
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Ugh, that is outrageous!!! I hope you’re able to find a way past that big barrier.
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Oh I feel you 😦 at least on the part where I was so terrified of possible side effects. I’ve been on Simponi for a year and I’m now in remission. I live in Europe and I’m so grateful my health insurance covers all the costs. I’m keeping my fingers crossed you’ll be able to sort something out with your health insurance!
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Thank you, Sandra.
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I just came across your blog and it’s great. I have AS, and on Remicade. I am also a vegan. Your words really express what we all go through. Stay strong and good luck overcoming the hellish insurance hypocrisy.
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Thank you, Renee, and welcome to my blog!
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I love reading your posts… I’ve been on Remicade for about a year and a half now, after Humira wasn’t working well enough. I’m on the highest dosage with infusions every 4 weeks. Though I still have significant pain and fatigue, it has helped a lot and hopefully staved off further damage. xo
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Thank you for sharing Momi, I’m glad you like my posts!
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Thanks for your thoughts.
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Thanks, Andrew.
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Thank you for this! I’m on Enbrel and it has saved my life! A year ago I could barely get out of bed for weeks at a time, now I’m able to walk my dog, and do the things I used to be able to do before AS started to ruin my life. I love reading your blogs, you are an amazing woman!
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Thank you Michelle!
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I’m so sorry that you have such a cruel, debilitating & painful chronic illness where the treatment is potentially life threatening & that puts you in such an awful “catch 22” situation. And that you have to “prove” that you have AS and fight for insurance coverage!! Our healthcare here in the US is so
fucked up & that you have to fight for coverage AND for your life is inhumane & unacceptable. I have no answers or funds to help but as one human being to another, please know that I care and will keep you close to my heart. Your writing is powerful, eloquent & gut wrenching. Please continue to tell your story. My 33 year old daughter has a chronic illness and both of you are brave warriors. Hold onto hope & those who love you. 💞
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Thank you Nancy B. I made a decision early on with this blog to tell it like it is!
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