October 12 – It’s World Arthritis Day!
I’ve been living with Axial Spondyloarthritis (Ankylosing Spondylitis) and osteoarthritis for over a decade. Last week I found out I have ANOTHER arthritis diagnosis!
Ta-da! My rheumy has decided I have Psoriatic Arthritis! Guess what? AS and PsA are subsets of Spondyoarthropathies. I didn’t even know it’s possible to have more than two kinds of inflammatory arthritis, but it is, and I guess it makes sense now that I think about it.
I’ve brought PsA up many times in the past 10 years because PsA is on my mother’s side of the family. No one has ever listened to my repeated reminders about family history. I’ve just confirmed with the CSA because I’m never sure what to believe with doctors in Taiwan.
To make a long story short, I have been paying out of pocket for my primary arthritis med, Enbrel, since November 2018. Enbrel is an anti-TNF blocker (biologic) that helps to reduce inflammation and pain related to axial spondyloarthritis (Ankylosing Spondylitis), a diagnosis that I received in 2009.
AS is a form of crippling arthritis.
In 10 years, I went from running 10K a few times a week to a wheelchair. AS is an aggressive disease. When it starts progressing, it happens quickly.
I ran through the gamut of medications for AS before finally getting access to Enbrel.
On Enbrel, I haven’t had to spend as much time in my wheelchair. The pain has been a little more manageable, but the stress of paying for it each month has been really hard on us.
I have not been on the full dose of Enbrel because we can’t afford it.
In North America, I’d have co-pay options or some form of financial support, but this is an example of a medication that is not offered to people like me through Taiwan’s healthcare system. 96% of Taiwan’s population has healthcare through the government program, but when you have an illness that is not well known and requires expensive treatments, patients like me often fall through the cracks in the system.
The diagnostic criteria for AS is supposed to be accepted worldwide. Taiwan regularly participates in global health conferences for AS. I have no idea why this rule is still in place, but it needs to be changed asap. Patients shouldn’t have to fight this hard for access to medications.
In Taiwan, the only way to get coverage for anti-TNF meds for AS is by hitting the government criteria list:
1. You must have the genetic marker. This grants automatic approval. (I’m HLA-B27-, but there is no doubt that I have inflammatory arthritis.)
2. Your CRP and ESR rates, blood markers that show inflammation in your body, must be over 1.0 for access to biologics.
My CRP and ESR rates are always high, even on anti-inflammatories. But they’re not high enough because I’ve been on anti-inflammatories since 2009. When you line all my labs up, year after year, we can see a solid red bar on my charts that shows high inflammation.
Being HLA-B27+ is ONE part of the diagnostic criteria, but you can be negative and still have AS. Patients like me who meet other diagnostic criteria like blood markers, scans, and family history can be diagnosed without the genetic marker.
Yet these criteria are not taken into consideration by the NHI, leaving thousands of patients without proper treatment or leaving them in a grey area. The current rules mean that patients that don’t meet outdated government criteria have to rely on old lines of medications that were used to treat AS in the 80s and 90s.
I have been living on a combination of biologics and an older line of meds for treatment for two years now. Enbrel has given me a little more quality of life. It has kept me out of my wheelchair, but I’m still mostly housebound. I’m limited in what I can do because I can’t afford the full dose. The full dose makes a huge difference!
From June through September 2020, I was very sick. At my last hospital appointment, I did my lab work again. I can tell when inflammation is running rampant in my body.
In September, my ESR and CRP rates were through the roof. This finally puts me in the government mandated criteria zone for potential health coverage.
Here’s where the story gets coo-coo.
My rheumy wants me to re-test immediately OFF my meds.
He needs to see me ‘fail’ these tests again in order to petition for me for coverage. He needs to observe me at my worst. Boy, is he in for a treat.
When this was suggested two years ago, we decided that there is no way I can do six months on no meds. But if I can get through the next test this month and test again with high CRP and ESR rates, I have a 50/50 chance at coverage.
Reviewing scans for arthritis
I pushed for another scan in August because I knew something was wrong. In 2015, I flagged a visible and growing lump on my spine at C5-C6.
When my scans came back last week, we could see a massive ball of cloudy white at the top and bottom of my spine. It looked just like my scans in 2009 when I got my AS diagnosis.
The inflammation is back to what it was when I first received my diagnosis!
No wonder it feels like my neck is going to break. I can barely turn my head or lift my arms. I’ve complained about numbness in my arms and hands for years now.
So again, we point out my spinal lump and he says that it’s enthesitis. When he pressed on it, I almost passed out.
Doc Chen says I have severe enthesitis in my spine.
Y’huh. I know that. If not attended to, enthesitis leads to calcification, which causes new bone tissue to grow. This is what is happening in my neck right now and they’ve left it untreated.
And it’s my spine, so the inflammation is everywhere.
Usually enthesitis occurs at sites where tendons and ligaments insert into the bone. A lot of folks see it in their knees, heels, hips, toes, elbows, and feet. These are all locations on my body that I’ve noted at every appointment. It’s especially bad in my knees and heels.
I’ve mentioned many times that standing or bearing my own weight feels like I’m standing on shards of glass.
DING DING DING. Psoriatic Arthritis
At this point, he tells me that enthesitis is common in two kinds of autoimmune arthritis: Ankylosing Spondylitis and Psoriatic Arthritis. So now he wants to view my hands AGAIN and have a look at my feet. He says I have Psoriatic Arthritis!
I’m gobsmacked. Is it possible to have Ankylosing Spondylitis AND Psoriatic Arthritis? Apparently yes!
The diagnosis is Psoriatic axial SpA. If spinal involvement is involved, it’s classified as axial Spondyloarthritis. Even with Psoriatic Arthritis there’s a large percentage of patients with axial involvement, so there is a lot of overlap between axial and peripheral Spondyloarthritis.
Doc Chen starts talking about cytokines and Interleukin and IL-17. I’m following right along and saying, “Yes, I know this. I’m aware that AS and PsA are a subset of Spondyloarthropathies. How do we move forward?“
There was a sense of urgency with him at this appointment. He confirms we need to move quickly after seeing my scans. We started the petition process right after my appointment. For the love of god, please petition the government, Doc, and get me on the right meds. I cannot continue living like this!
The last two things he throws at me: I’m anemic. (Not surprised.) I’ve been anemic many times over the past 12 years. There was no mention of how we’re going to deal with that.
And that pesky diabetes marker that was flagged by my neurologist in 2017 is now the highest it’s been. I’m six points under for having Type 2 med-induced diabetes!
I honestly cannot remember a worse appointment!
So his answer to getting through the next round of tests?
Wait for it…
Stop my meds and TRY TO GET AS SICK AS POSSIBLE FOR MY NEXT LAB TEST SO WE CAN PETITION THE GOVERNMENT FOR HEALTH COVERAGE FOR MY MEDS.
There is no guarantee, but we need to do it now since I’ve already ‘failed’ the first test.
Regarding my medical notes for arthritis:
The last thing we did before I started the paperwork process was go through his notes from the last two years.
Here is where I start pointing out all the times he jotted down notes when I mentioned my neck pain. He could see his notes for the other painful joint areas I brought up, plus his notes about my rashes!
I point to my family history again and ask him why we aren’t talking about it. The genetic aspect of autoimmune issues and arthritis is in black and white in his own handwriting. The only reason I can think of that he didn’t consider this before is that I was a new patient to him two years ago.
Finally, my writing prompts for A Chronic Voice:
In a nutshell, I’m hoping my body produces more inflammation in the next two weeks so I can hit those government criteria marks and petition the government for at least some coverage for this medication.
Crazy, I know.
Doctors are supposed to do no harm, but what choice do I have at this point?
I have no idea how sick I’m going to get from stopping my meds. Today I’m producing as much info as I can so I have content going up for the rest of 2020.
Let’s hope the results I produce while being off my meds are enough to satisfy government requirements. We are already expecting trips to ER for pain control.
Um, if I could win the lottery that would be great! Also, if it isn’t clear yet from my last two years of blog posts, I’d love to
acquire access and coverage to medications that will give me with some quality of life back.
When I resume the full dose of Enbrel at the end of October, I hope that things will get better soon, but it sounds like I’m going to have to switch biologics. I’m not looking forward to switching to a new medication.
I’m disappointed in my rheumy.
I flagged my C5-C6 issue in 2015. I’ve mentioned how painful it has gotten this year and how my mobility is compromised. It was very clear from my doctor’s notes that he had written this problem down at every appointment, yet I still had to ask for my scans this year!
Isn’t it his job to be watching these things for me? Why do I have to keep asking all my docs for tests that should be annual or bi-annual? When you’re paying over $1,000 a month for medications, you’d think this would be in the system and they’d just do it. It’s their job, not mine!
I’m forming a plan right now because I’m a planner. It’s best to have things lined up for worst case scenarios when you’re sick.
So that’s that. Celebrating World Arthritis Day with three forms of arthritis. Of all the luck! It’s a good thing I’ve got a terrific community of patient advocates that support me.
WE KEEP ON GOING. Wish me luck. I’m going to need it this month.