A long time has passed since I've written about my Spondylitis - over 5 years, in fact. That's not for lack of news or focus on it in my daily life.
When I last wrote, I was doing well - no medications, manageable pain, normal activities. Unfortunately, that didn't last. A few weeks after that article, I started on a daily regimen of Meloxicam, an NSAID. (Apparently, Celebrex, my previous medication, had fallen out of favor at some point during 2015 or 2016.) Fortunately, the Meloxicam definitely made a difference - a positive difference. Leading up to that point, my pain was bearable, but it had been increasing.
As soon as I started on the Meloxicam, all sorts of pains resolved:
- No more pains localized near my groin (hip flexors).
- I was able to sneeze again, with no pain in the ribs around my spine on a rapid intake of air and expansion of my rib cage right before sneezing.
- No more pains in the base of my neck, at my trapezius.
- No more pains around my shoulder blades.
- My hamstrings were much looser, although my hamstrings and glutes still were prone to getting sore after sitting for a long time.
- My lower back was much looser, but my IT (iliotibial) bands were still tight.
- I felt much less back pain when in bed at night.
I know all of this because it was at this point in time that I started maintaining a health journal, in earnest.
So, to be more precise, I started taking Meloxicam at the start of February, 2017. But, stubborn guy that I am, over the course of the following 6 months, I tried to work my way off of it. My first attempt consisted of taking it every other day. But, that didn't work well, so I started splitting the tablets and taking half-doses every day. But, the pain got to me with that practice, too, and so I returned to my original dosage. Eventually, I tried to just stop taking the Meloxicam. But, the pain in my knees (that's where my joint pains were most intense) proved to be too much and sleeping was becoming difficult. So, I went back on the meds, which upset my digestive system.
In mid-August, I prepared and ate a personal pizza with homemade sauce, with the sauce made using 3 tomatoes. The next day, the big toe on my right foot swelled-up and became very painful. Fortunately, the worst of that resolved within a week. Still, it gave me plenty of reason, going forward, to be wary of nightshades.
My neck had gotten stiff, with some sharp pains. My knee pain was limiting my ability to perform my sprint workouts, but not enough to completely stop doing them. Icing my knees became a twice-daily part of my routine. Tiger balm took up residence next to my bed. Lowering myself down on the toilet became a bit torturous.
The Biologic Option
During a routine physical, my primary care physician said something to me along the lines of "I'd be very surprised if you don't end up on biologics". I shrugged it off. A few months later, my rheumatologist made a strong pitch in the same vein - which was studded with mentions of "TNF inhibitor", injections", and "Humira".
He made some good points, saying that he had seen patients that waited too long to start on TNF inhibitors and regretted it, as their Spondylitis had progressed to the point of causing irreversible stiffness and bone growth. He felt that it was better to err on what he considered to be the safe side - and take biologics. In his mind, I was the perfect candidate, without any complicating conditions such as diabetes, heart disease, etc. I remember him saying something to the effect "I think you'll be amazed with how good you feel on biologics".
I respectfully declined.
Right around this time, the pain lessened enough for me to try halving my NSAID dosage again. That lasted 5 days.
I started to more seriously consider biologics. My principle concern was, once having started on them, the total lack of any real protocol for getting off of them. It was a one-way street. The idea of voluntarily opting myself in to adopting a chronic, lifelong medication, a very expensive one at that, was detestable to me. Given that, I needed more convincing of the benefits they would bring me. So, I started doing my own research.
I quickly moved past high-level articles and "graduated" to research studies. What I ended up zeroing in on were two questions:
- To what degree do TNF inhibitors slow/stop the progression of Spondylitis?
- What are the downsides and side-effects of taking TNF inhibitors?
I read that recent (at that time) studies had found that TNF inhibitors slowed the radiographic progression typically caused by Ankylosing Spondylitis. A few choice bits:
Radiographic damage in AS is quantified by the number of bone spurs (syndesmophytes), squaring, erosions, and sclerosis developing at the corners of the vertebrae.
The rate of radiographic progression decreased as patients continued to take TNFα inhibitors for a greater proportion of their disease duration.
TNFα inhibitors are most effective when started sufficiently early in the disease course and when treatment is sustained for a longer period of time.
So, it appeared to be that TNF inhibitors went beyond relieving pain and actually prevented bodily damage. Impressive. However, older studies had shown the same for NSAIDs. Hmm.
Regarding TNF inhibitors and side-effects, it mostly came down to a suppressed immune response. One doctor I spoke with for a second (third?) opinion recommended completing any outstanding courses of vaccinations before starting on TNF inhibitors and getting yearly flu shots, as my immune system would be compromised. Not cool. To be fair, though, the risk profile of NSAIDs was proving to be, arguably, worse:
...researchers found that NSAIDs significantly increase the risk of cardiovascular events in people who take these medications on a regular basis. In fact, long-term users of prescription NSAIDs have a two-fold to four-fold increase in the risk of heart attack, stroke or cardiovascular death.
Helping to put it all in perspective, the SAA happened to host and publish a presentation by John Reveille, MD at that time which made three high-level, noteworthy points:
- Uncontrolled Spondyloarthritis is harder on your heart than full-dose NSAIDs.
- Control of inflammation is the most important goal when treating those with Spondyloarthritis, because that is what kills the patient.
- Using TNF inhibitors halves the likelihood of x-ray progressions.
It was all very sobering. But, I wasn't yet ready to pull the biologics trigger.
On into January, 2018, I was doing... OK. Enough so that I went snowboarding for the first time in many, many years. But, my rheumatologist brought me back to earth. When I went in for a check-up, he again urged me to start taking biologics. Apparently, I wasn't looking to be in very good shape from the outside looking in. Still, I resisted. I held him off by agreeing to get fresh x-rays of my spine and hips.
A couple weeks later, I once again halved my dosage of Meloxicam. This time, it stuck! Another month later, I got ballsy and stopped it altogether. That stuck, too!
Mind you, it wasn't all clear sailing. I was dealing with varying levels of pain in my left elbow, back (below my right shoulder blade), right wrist, and right shoulder. But, none of it amounted to enough pain to drive me back onto the Meloxicam. Furthermore, as time passed, the pains lessened. Month by month, I made progress, finally capping it off with my next appointment with my rheumatologist, at which he declared me to be in remission!
Crazy, right? From the cusp of heavy-duty biologics to remission in 6 months. At this point in time, it was late July, 2018 - and I was in what I considered to be my second remission. What triggered it? What did I ascribe it to? Not sure.
Over the course of the preceding 18 months, along with my attempts to reduce my usage of- and eventually get off of Meloxicam, I had tried plenty of alternative treatments and lifestyle changes (listed below in chronological order):
- Being more light-handed in the shower with regard to my use of body cleanser.
- Shifting to working part-time.
- Sleeping on the floor several nights each week.
- Fasting intermittently, hewing to an 8-hour daily eating window.
- Adding turmeric root to my meals.
- Avoiding eating nightshades.
- Wearing a copper magnetic bracelet.
- Adding chest-expansion exercises to my before-bed stretching routine.
- Taking a boswellia supplement.
- Restricting my breathing between sprints during my weekly sprinting workouts.
- Breathing only through my nose when biking to the gym.
- Eating according to a ketogenic diet.
- Running more and more errands via bicycle.
- Adding potato starch to my meals.
- Shortening the length of my lifting workouts.
I can't pinpoint any one of these changes/experiments as being what triggered my second remission. Regardless, I still, to this day, continue to incorporate a large number of these habits into my life. A lot of the experiments I undertake seem worthwhile to me, Spondylitis or not.
At this point, life was good. I started taking up slacklining, both for fun and functionality. I still had clear memories of the foot pain I suffered through prior to my Ankylosing Spondylitis diagnosis. My theory was that slacklining would be an effective strategy for improving the strength, dexterity, and flexibility of my feet, thereby reducing the chances of plantar fasciitis redeveloping.
Me slacklining is a good example of one way in which I tackle my Spondylitis - push ahead when your symptoms allow. At the low point of my first bought of active Spondylitis, there was no way I would have been able to even attempt slacklining. I would have thoroughly frustrated myself. And that's downplaying it. I find it hard to believe that I wouldn't have hurt myself, given how sensitive and "fragile" my ankles were at the time. But, with that experience both in my back pocket and in the rear-view mirror, I could use it to channel my efforts at preventative health and conditioning.
The same goes with sleeping on the floor, and doing chest-expansion exercises, and biking more. One of my personal mantras is "When you stop challenging yourself, everything becomes a challenge". By me establishing higher expectations of my body and myself, while I am able, I increase the degree to which I can degrade during periods of disease activity. So, in the case of slacklining, maybe I degrade such that I can no longer slackline, but simple walking isn't so hard. I have no proof that this approach works, but it makes sense in my head.
And that there speaks to the mindset that I had adopted at this point in my life. My rheumatologist declared me to be in remission. But, that word makes me a bit squeamish. The word "remission" implies a sort of "mission accomplished" mentality - an end state. And when you have accomplished your goal, you relax. But, that wasn't my state of mind. Instead of regarding my Spondylitis as being in remission, I preferred thinking of it as being temporarily inactive, or quiet. As such, I remained vigilant.
I continued on with all of the practices and lifestyle changes I had made leading up to my disease going quiet. Furthermore, I continued experimenting. I'm not one to rest on my laurels or take good fortune for granted, and that goes doubly so when it comes to my efforts to overcome Spondylitis. And so, I continued on in a manner that basically presumed that my remission was not permanent. That turned out to be wise.
The warning signs didn't take long to appear. On my next attempt to give blood, I failed the hemoglobin test. I had lingering pains in my right wrist and left shoulder, and then in the right side of my lower back, and then my right hip. At some point, I slid out of remission. When exactly that happened is hard for me to say. This despite all of the entries in my health journal.
It's an insidious process - regressing into disease. It's rewarding to record progress. Reversal, not so much. I freely admit that, at the time, I would downplay any regression, even in my own head. That said, I'm guessing my second remission lasted between 4 and 6 months. So, by the time 2019 arrived, my Spondylitis was active once again. However, it was proving to be mild/bearable enough that I passed on restarting the NSAIDs.
During my first bout of active Spondylitis, the pain was worst in my feet and ankles. The plantar fasciitis was horrible. (I say this at the risk of failing to give the then pain in my shoulders and hips it's proper due.) During my second bout, the pain was worst in my knees. I was icing them multiple times each day. During this third bout, the pain became worst in my neck. One day in mid/late January I woke up in the morning with a pain several inches below my neck on the left side of my upper back. A few days later, it was gone. Another few days and it was back. Over the proceeding months, turning and tilting my head in ever-changing ways and directions became challenging. The specific pains varied from week to week, but the general pattern remained the same.
Pains in my upper back also became common this time around. They kept moving around my shoulder blades - inside, outside, right, left. Sigh - always something new.
Nevertheless, I continued on medication-free. And that wasn't just me grinning and bearing it. In the autumn of 2019, I went on a long-anticipated and thoroughly enjoyable hiking-centric trip through a number of parks ringing, and including, the Grand Canyon. During planning, I had warned John, the person I traveled with, that my Spondylitis might not allow for me to follow-through on our plans. But, that disappointment did not come to pass. We hiked every day for 12 days. No limitations!
Of course, that's a misleading statement. I had plenty of limiting pains, but they were all above the waist.
As the Spring of 2020 arrived, so did the COVID-19 pandemic. As with everybody else, it changed my day-to-day life in previously unimagined ways. One major impact was my gym shutting down. All of a sudden, one of the cornerstones of my health and wellness routine (lifting heavy things) was off-limits. But, it just so happens that I had already been on the cusp of trying out fundamental changes to my lifting workout. After a 2 week layoff, I transitioned to an at-home lifting workout, with my primary "equipment" being a log I sourced from the woods adjacent to my house and sand bags I made from some big zipper storage bags I had on-hand filled with a leftover bag of sand.
Prior to my gym's shutdown, I had been brainstorming a "functional" or "awkward" style of lifting workout. In a wonderful example of necessity being the mother of invention, I cobbled together something that I very much enjoyed, so much so that it I eventually canceled my gym membership in favor of the unconventional routine I had created.
Meanwhile, my battle with neck pain continued. The small muscles at the base of my skull (at the back of my head) were always sore and painful. Even laying on my pillow at night was proving to be uncomfortable. I tried all sorts of treatments (cold treatment, heat treatment, CBD cream) and self-massage (using my hands, a back massager, a wooden dowel, a tennis ball, and a spare door knob I mounted on a scrap piece of wood). None of it was proving to be curative.
To add to the misery, when in bed at night, I had to be very careful when rolling over and lying on my sides so as to not tweak/exacerbate the pain(s) in my shoulder blades. By this point, self-massaging various spots in my back using a tennis ball on a once- or twice-daily basis had become a fixture in my life.
It can take a lot of trial and effort to figure out the right balance to strike when working through pain. Is the right approach aggressive or relaxed? Is the proper treatment active or passive? Is the best frequency steady or seldom? Is the best time upon waking or before bed? Whenever I find myself suffering through an active stretch of Spondylitis, these are some of the answers I'm seeking. For example, the wooden dowel and door knob massager turned out to be too aggressive. And self-massaging before the relative immobility of sleeping proved to be less effective than self-massaging at the start of my day.
It was now the end of October, 2020. It was at this point that I discovered, after more than 6 years of post-diagnosis experimenting, the first non-pharmacological action/change that I can confidently say had a significant and directly positive impact on my Spondylitis - multi-day fasting! While the effects weren't as near-immediate as when I took my first dose of Celebrex after my first rheumatologist visit, they were definitely very noticeable and very remarkable. It wasn't curative, but within a span of ~1 week, all/most of my pains where significantly reduced. It was amazing.
A few weeks later, I made further progress with the pain at the base of my skull. Simply put, I started wearing my glasses when on the computer and (re)focusing on my posture. Quite the pleasant discovery. It was very rewarding to realize this example of how getting the basics right can have a hugely beneficial impact on something very specific. Not every treatment needs to be disease-focused or, in my case, Spondylitis-specific. Lesson learned.
Fast-forward to April of 2021 - I got my first COVID-19 vaccine shot. This! This is where I feel that my reluctance to take biologics, TNF inhibitors, etc. paid off. Ankylosing Spondylitis is an autoimmune disease. Meaning, it is a manifestation of the body's immune system mistakenly defending against itself. Biologic medications work by suppressing, to one degree or another, that overactive immune system.
Vaccines, including the COVID-19 vaccines, work by imitating an infection and triggering a (hopefully) muted defensive response by the immune system. They essentially train the immune system to fight off whichever specific infection they were developed to target.
However, the intersection of vaccines and autoimmune diseases can complicate things. The body of a vaccine recipient with an autoimmune disorder can react more strongly to the vaccine than desired. Similarly, the body of a vaccine recipient taking an immune-suppressing biologic medication can react in an unexpectedly weaker or stronger way to the vaccine. General medical advice is that "live" vaccines are dangerous to get for patients taking biologics, whereas inactive vaccines are safe. With the COVID-19 vaccines turning out to be of the inactive variety, that safety concern fell by the wayside. But, over time, an alternative concern developed for those vaccine recipients on biologics - a lack of efficacy. For that population, additional boosters came to be recommended.
Given how the COVID-19 landscape currently looks, the complexities of combining the vaccines and biologics are proving to be manageable - and worthwhile. But, I was very happy to not have had to worry about, research, and analyze those complexities in the first place.
Over the course of that second pandemic Summer, I continued to work through pains in my upper back and neck. I kept trying to give blood, but continuously failed the hemoglobin test. (I mention this because I attribute these failures to my Spondylitis.) Despite these headwinds, things were improving. I added Wim Hof's deep breathing practice to my mornings. (Curiously, that yielded some benefits in terms of pain reduction.) I remained diligent with my stretching, lifting, sprinting, biking, eating, resting, journaling, massaging, etc., etc., etc. And then...
Well, at some point, subtly, gradually, I went into my third remission. Looking back, it seems like it happened right around the start of September, 2021. As with my two previous remissions, I couldn't attribute it to any specific change I made. Instead, I view it as the result of my "body of work" - ongoing experiments and lifestyle modifications.
Six months later, I was still in
remission an inactive disease state (and still am). During that span, I attempted and completed my first solo hiking trip (through Acadia National Park and some other spots in western Massachusetts) and (separately) went snowboarding for several days (along with my first clumsy attempt at cross-country skiing). I was also able to successfully give blood a couple times.
As I write this, I've still got some pains that I continue to work through, but nothing that significantly impacts my life (in a negative way).
So, let's recap. I've been diagnosed with Non-radiographic Axial Spondyloarthritis for a little more than 7 1/2 years. That diagnosis was preceded by a little more than 9 months of significant disease activity. My health journaling wasn't in full swing during the early days of my disease, but I'll guess that my first remission lasted ~1 1/2 years. That was followed by my second bout of disease activity, which probably lasted the same span - ~1 1/2 years. My second remission lasted ~6 months, which was followed by my third bout of disease activity, which lasted ~2 3/4 years. I'm now ~6 months into my third remission.
If I estimate that my first bout of disease activity lasted ~1 year after my disease diagnosis, I get the following totals:
- ~7 1/2 years since diagnosis
- ~5 1/4 years of disease activity
- ~2 1/2 years of disease inactivity
- ~1 3/4 years of taking medications (~8 months on Celebrex and ~13 months on Meloxicam)
You can draw a wide gamut of conclusions from those numbers. It's sobering to see that, cumulatively, I've been in an active disease state more than twice as long as an inactive disease state. Conversely, it's heartening to see that I've been on medications for less than 1/4 of my post-diagnosis lifetime. Furthermore, my bouts of disease activity have been, for the most part, mild enough to allow me to life a very active and rewarding life. I've been able to keep the truly debilitating stretches to a minimum.
The mindset I've taken is that I will never be completely free of Spondylitis. Maybe, by doing that, I'm artificially limiting myself. I do feel that there's much to be said about the power of positive thinking and actively manifesting your future. But, I find it hard to completely square that approach with the practice of diligence and experimentation that has gotten me to where I am today. As such, I mix the two approaches.
My goal is to extend my periods of disease inactivity for as long as I can. Whenever my disease becomes more active, I'll work to quiet it as quickly as possible. My eventual goal is to get to the point where, overall, my disease is more quiet than active.
I feel very fortunate. Heh - that probably isn't the typical sentiment expressed by someone reflecting on their disease history. But, three remissions. Three remissions! Among people with Spondylitis, remission is uncommon. I recognize this, and I appreciate it. One way I do that is by reflecting on it, and sharing the results. Hence, this article. I fully understand that I'm a sample size of one, and that everyone's mileage may vary, but I still feel that others can benefit from my story.
Looking ahead, I intend to write more extensively about some of the specific experiments and changes I've tried over the years to quiet my Ankylosing Spondylitis. That being said, the amount of interest I've gotten in the past to delve into any of it, even from others I've come across with Spondylitis, has been underwhelming. (That's always mystified me.) So, if anyone reading this wants a follow-up sooner rather than later, please leave a comment stating as much. Thanks!