Today marks exactly two years since I started taking Enbrel to help with pain and inflammation from Ankylosing Spondylitis, aka axial spondyloarthritis.
In all this time, I’ve been paying out of pocket for Enbrel. My monthly bill for 8 injections is 30,000NT per month. As you can guess, the stress of coming up with this kind of cash each month to keep me out of my wheelchair is exhausting and stressful.
I need help. I can’t keep going like this.
This post is about the start of the petition process with the Taiwan government to get access to healthcare coverage for Enbrel. Right now, I don’t have access to coverage because of a silly, outdated rule for criteria.
After getting very sick in July and August due to stress and trying to keep my company from going under, I was able to meet the criteria with elevated blood inflammation markers.
My doctor agreed with my suggestion that we try for coverage. His suggestion was the same suggestion I got two years ago when I started Enbrel. I had to go off my meds so he could observe me at my worst.
To date, I’ve spent NT720,000 on my injections in two years. All out of pocket.
The stress of coming up with this money every month is breaking me. I have no options for loans here, no options for co-pay or financial assistance. I really need help. There is a huge difference when I’m on my full dose of Enbrel. It keeps me out of my wheelchair and allows me to participate a bit more in life.
Anyways, I hit meltdown mode on October 30th after being off my meds for a few weeks trying to prove how sick I am.
From that day through now, I’ve been in a state of overwhelming distress. Everything is too much to deal with. I have not been able to focus or pay much attention to anything outside my own personal bubble of life. I feel the world pushing in on me heavily right now.
Today’s post aptly sums up 2020. Not only is 2020 a pandemic year. It’s also the year I stopped taking my meds to petition for health coverage!
I’ll never forget what I’ve been through this year. What you’re about to read is cruel and it’s an unusual thing to do to a patient, but bear with me. There’s more unbelievable health stories coming after this post!
In North America, the meds I’m on are covered by insurance or they come with a co-pay option. There is no co-pay option for Enbrel in Taiwan.
If I had access to co-pay in Taiwan, I wouldn’t be writing this post. I’d be happy knowing that at least part of my eight injections each month are covered.
I’ve never asked for full coverage for my medications. If Taiwan’s NIH could cover one or two of my injections each month (NT$6,000 to NT8,000 a month), my life would be so much simpler. I am still able to work enough at home to cover the rest of my medical bills if someone would just give me a chance at financial assistance here.
Yet I never expected that in order to have a 50/50 chance at being considered for coverage, I’d have to stop my meds. Nor did I realize what would happen when I did so.
Suddenly stopping your medicine may also worsen your depression. Here are some of the possible effects of quitting too quickly: You get sick.Healthline.com
Getting back to my post about what happened when I stopped taking the meds that control inflammation and pain.
I was expecting to get sick. Every chronically ill patient knows your disease activity will come back as soon as you stop your meds. We’re also aware that stopping meds cold turkey is a terrible idea that can have devastating consequences.
This is why I was so surprised to hear for the second time in two years that if I want a chance at health coverage, I had to stop my medications so my doctor could observe me at my sickest.
I agreed to do it this time because my labs were high enough to meet government criteria in July.
But since I’m still recovering from that flare, I didn’t think things would spiral out of control so quickly when I stopped my meds for the second round of blood tests. We knew it wouldn’t take long for the inflammation to show in my blood tests.
What Happened When I Stopped Taking My Meds – Going Off Enbrel and Sulfasalazine
Enbrel has kept me out of my wheelchair for two years.
Within a month of being off it along with my other baseline medication, Sulfasalazine, I started to get sick and my legs started filling with that dreaded cement feeling that is a telltale sign to me that inflammation is returning. I have back pain every day, but the intensity of the back pain I was experiencing off my meds brought me right back to 2009 and what I was experiencing then.
The rashes and mouth ulcers came back. My vision started going blurry again. I got the shakes and was suffering extreme bouts of weakness that just made me want to crawl in a hole.
Yet I was sure before I went to my appointment that I was not sick enough!
Every day we were wondering if I was sick enough to do those darn labs. So we kept pushing to do things that we knew I shouldn’t be doing. I did things like hauling groceries upstairs, (yes, climbing stairs), taking extra walks over my daily step count, and doing more household chores. I’ve been careful to avoid or manage all of these things over the past six years because these activities makes me sick and cause pain if I’m not pacing for pain management.
It felt surreal, not to mention irresponsible to be playing games with my health.
That is what has made this month so hard. I’m recovering from all the activity I did to make myself sick for this appointment.
Actively doing things to make myself worse goes against everything I’ve learned since 2009.
Despite my worries, my labs for inflammatory blood markers came back five times higher than last month. My tests were so high, he asked if I had a serious infection.
No, Doc. I have not had any serious infections. This is me off my medications that control inflammation. Now you can see what my life is like without the meds. It’s time to go back on the meds that have been controlling this for 12+ years. Do you have enough evidence to petition for some coverage for my medications now?Carrie Kellenberger, MySeveralWorlds.com
So yay! I failed. Can I have my meds now, please?
This should be more than enough to meet government criteria for coverage. (There is an added component to the petition process that we just found out about that has really thrown me for a loop. Now they want visual evidence of an invisible disease! Gah, my life!)
And with my inflammation levels so high again, our concern is growing. Chronic inflammation is a SILENT KILLER. I’ve worked hard to keep it down. I’ve spent thousands of dollars each year trying to keep inflammation down.
People do not understand how damaging chronic inflammation can be or what it does to your body, but let me tell you: it affects everything.
Chronic inflammatory diseases are the most significant cause of death in the world. The World Health Organization (WHO) ranks chronic diseases as the greatest threat to human health.https://www.ncbi.nlm.nih.gov/books/NBK493173/
When you have chronic inflammation, your body’s inflammatory response starts affecting healthy cells and organs. This eventually leads to things like tissue death and DNA damage. It is also linked to the development of diseases like cancer, stroke, chronic respiratory diseases, and diabetes.
I’ve been hovering just below full blown diabetes since 2018. But my doctor didn’t even bring it up when he suggested that I stop taking medications.
Even I can put two and two together. More inflammation = the higher my chances of getting diabetes.
So you can see why I’m anxious to get back on the meds that are keeping my overactive immune system from going bananas.
Within A Month of When I Stopped Taking My Meds
After a month off my meds, they could see SUPER SICK CARRIE again.
Usually they see her most during the summer, but this is the first time I’ve made myself sick. I hope they took notice of how much effort it takes to push myself out of a chair to stand up.
My inflammatory arthritis response was almost immediate. Visible bilateral swelling in my knees came back within a week. My feet swelled. My hand and wrist pain went on hyper alert. The pain was rampant and it was everywhere. My migraines were pounding. My stomach was acting up.
On Enbrel, if I’m lucky, I can get away with taking a quarter of my painkillers each day instead of the full amount.
Off Enbrel, I needed everything I can get to assist with chronic pain.
I hope they noticed that I pushed myself to walk into my appointment so they can see how I’m moving and what it sounds like when I move. Snap. Crackle. Pop!
By the time I sat down in front of my doctor, I could barely sit up. The need to lie down was so strong, I was barely resisting the urge to lie down in his office.
When I started speaking, they observed a hoarse voice affected by inflammation in my vocal cords.
I asked them to retest my blood again since I was so sick that day. They felt I needed a wheelchair by the time I left to go to the lab station.
The petition process is moving forward, but we have no idea how long it will take or whether it will work. My biggest worry is that I’ve done this for nothing.
But the one thing I forgot about completely was how much of an effect all of this would have on my mood. This has been what is most scary for me.
When Depression Hits
Depression hit me like a cement truck last month. It hit so hard, I was waking up in the morning and tears would immediately start rolling down my face. I’d take an hour to get going and then try to compose myself to face the day. But inside my head, a little voice was whispering all sorts of things.
What is the point of this, Carrie?
You’re not going to get coverage.
You’re going to live like this the rest of your life.
You’re going to live with pain 24/7 for the rest of your life.
They don’t believe you even with the blood tests.
These states of depression are not unusual for me. I suffered my first major depressive state in May of 2015 when I received my fibromyalgia and MECFS diagnoses. In my head, leading up to that final appointment, I thought I was just dealing with progression of AS and I was in denial.
That year was a hard one for me. It was my first time on anti-depressants. I was having a lot of passive suicidal ideation. Only a few people in my life knew what was going on at that time.
Since then I’ve had recurring bouts of depression that are natural for patients who live with chronic pain.
I don’t know why I am so surprised by this current depressive episode after spending a month off meds that have kept me stable since 2009.
So there you have it. This is what happens when you go off lifetime medications. Getting access and some coverage to life-changing medications should not be this hard.
Now I’m wondering how long this depressive state will go on for. Will I need to start seeing a new doc to go back on anti-depressants again? I would go back on them in a heartbeat if I think it’s needed. There is no shame in taking meds that help you get through from day to day.
But no patient should ever have to go through the process of going off their meds to show proof of their illness.
No patient should ever be asked to provide visual proof of their invisible illness along with their labwork.
It’s demeaning and ridiculous that I have to provide this information when I have 12 years of medical history here for them to review.
No doctor should ask a patient to do this without letting the patient know that going off meds might ramp up other health issues and send you spiraling.