Step 1: The Specialist Carousel
How many medical specialists does it take to treat a chronic pain patient? Long before obtaining an autoimmune diagnosis and investigating biologics, I pre-gamed with an extensive group of specialists. After a hip injury in 2002 sent me to physical therapy, it started a specialist carousel that lasted the next 22 years before I received a diagnosis of axial spondyloarthritis (AS). Although I can’t remember them all, I saw approximately seven to eight massage therapists, ranging from deep tissue to myofascial to craniosacral, six to seven physical therapists, three physiatrists, two chiropractors, two acupuncturists, a naturopath, one dietician, three yoga instructors, one Pilates therapist, one neurologist, three rheumatologists, and numerous other comorbidity specialists, for a grand total of approximately 30 to 32 specialists to date. I also took a few three-to-four-year breaks from seeing any specialists at all because of specialist exhaustion. No offense to the specialists; you’re all still special to me in your own special ways.
While not comprehensive, the length of the provider list makes my cranio-sacral hurt. And although 22 years on the specialist carousel seems long enough to prove to an insurance company that I’ve exhausted all treatment options, one medication was required after my AS diagnosis before entertaining a high-cost biologic. According to Drugs.com, the current cost of Humira, a common TNF inhibitor that treats AS, ranges from $7,000 – $10,000 per month, or a total of $84,000 – $120,000 per year.1 Insurance companies therefore heavily scrutinize biologic use and want a lot of alternative treatment data before approving their use. The next step required pre-gaming with lower-cost, less invasive non-steroidal anti-inflammatory drugs (NSAIDs).
Step 2: NSAID #1
Autoimmune diseases like AS cause chronic inflammation in joints because the immune system attacks its own tissues. NSAIDs are widely used for treating autoimmune diseases because they block a specific group of enzymes called cyclo-oxygenase enzymes, or COX enzymes, which are responsible for the production of a group of compounds that control processes like inflammation.2
The first drug I tried was Celecoxib, which is in a group of COX-2 selective NSAIDs. NSAIDs are classified based upon which COX enzymes they target most, including COX-1 selective, which can cause more gastrointestinal (GI) side effects, COX-2 selective, which carry higher cardiovascular risk, but less GI, and nonselective, which do not favor either one of the COX enzymes. Nonselective NSAIDs include some familiar over-the-counter medicines like Advil, Motrin, and Aleve.3 Pre-AS diagnosis, I had abandoned nonselective NSAIDs because they felt more like a placebo than producing any actual relief. Celecoxib, however, reduced my level of inflammation and pain in the morning by almost three to four points. I was astounded by the results and optimistic about the future. However, after four weeks, the effects began wearing off and I was back with Rheumatologist #2 discussing next steps.
Step 3: NSAID #2
Next up was a COX-2 selective NSAID called Diclofenac. It helped reduce my symptoms almost as well as Celecoxib, but due to its COX-2 selective status, it caused some significant GI issues that will remain anonymous. I tried it for a couple of months to see if the GI symptoms would clear up, but with no luck. So, I returned to Rheumatologist #2 for yet another option. I had now leaped from the Provider Carousel onto the NSAID Merry-Go-Round.
Step 4: NSAID #3
Because non-selective and COX-1 selective NSAIDs did not have a sustainable effect on my symptoms, next up on the NSAID dating game was Meloxicam, another COX-2 selective. Rheumatologist #2 theorized that while COX-2 selective #1, Diclofenac, had caused GI issues, it may have been because I had to take Diclofenac twice daily, which could have been too much for my system to handle. Meloxicam, however, was only taken once daily. While the GI issues improved on Meloxicam, there was also reduced impact on my inflammation and pain symptoms. It was then Rheumatologist #2’s theory that Diclofenac, while bad for GI issues, worked better on inflammation and pain because taking it twice daily kept it in my system longer. So, the plan was to return to Diclofenac and try some GI medications to get the unfavorable symptoms under control in favor of the more favorable results with NSAID #2.
Step 5: NSAID #4 (formerly known as NSAID #2)
Unfortunately, Diclofenac continued causing GI issues with no improvement in pain or inflammation any better than before. I also continued having major flares.
“Why not just try biologics?” I asked Rheumatologist #2. At this point, it seemed like NSAIDs may not be worth the trouble and had maxed out their welcome.
“Your latest MRI shows that the NSAIDs are working,” Rheumatologist #2 responded. “Your inflammation has improved.”
“But I’m still in pain. I’d like to clear up the rest of the stiffness, pain, and flares, especially in my neck.”
“There is no sign of ankylosing in your neck.”
“But we didn’t do a neck MRI.”
“I can order one, but I don’t think that you have ankylosing in your neck.”
“So, do you think it’s my hypermobility? Since I have both AS and hypermobility, how do we determine which disease is the source of which type of pain?”
“I specialize in rheumatological diseases, so I can’t help you with hypermobility.”
“Ok, but can you coordinate with a hypermobile specialist or help me navigate between the two?”
“I’ll order the MRI and then we’ll go from there. Amy will be in shortly to get you rescheduled.”
“But–”
“Have a good day.”
Step 6: The Second Opinion
I do not fault Rheumatologist #2 for not specializing in hEDS4 and AS, but without his willingness to refer me elsewhere or coordinate with other specialists, it was time to seek help elsewhere. When I was younger, I would have been more patient and trusted that my doctor was doing everything possible to support me, but after thirty years in pain, I finally felt justified in questioning the tactics of some experts and seeking a second opinion. At first, I used my employer’s second opinion benefit and confirmed with another rheumatologist that biologics would have been her preference as soon as I was diagnosed with AS. In short, she felt they had better long-term outcomes and less significant risks than NSAIDs. Rheumatologist #2, however, did not agree with the second opinion. And while he lacked any familiarity with hEDS and its impacts on chronic pain, he continued to narrowly review my symptoms only within the context of AS and left me with no option but to search for my next specialist.
Step 7: The Right Rheumatologist (aka Rheumatologist #3)
While it took roughly six months to get in with Rheumatologist #3, I felt lucky to finally see an expert in both rheumatological diseases like AS and hEDS, which is a rare combination. Most rheumatologists only specialize in rheumatological diseases, and a patient with both hEDS and AS like me would need to navigate between two different specialists and bridge the gap between them. I’ve been bridging that gap for decades now and am relieved to have a rheumatologist that can now bridge it for me. While Rheumatologist #3 may have some quirks, like his recommendation to snort iodine after exposure to germs or hanging a shadow box of a discolored hip bone in his office, he did spend over an hour speaking with me to learn the full picture of my thirty year plus history with chronic pain. Spending that much time with a patient is extremely rare, and I value a doctor that invests such time and effort in learning about his patients.
“While I’m glad the NSAIDs are reducing your overall pain,” said Rheumatologist #3, “I’d be happier if we could reduce it by more than a few points and sustain it throughout the day. Biologics have tremendous long-term impacts like reducing your risk of developing fused joints, reducing cardiovascular issues caused by inflammation, and can be used to test out which disease, AS or hEDS, is causing you more pain. Since biologics cannot treat hEDS, we can determine if AS is more the culprit if your pain is reduced while on the biologic, versus remaining the same or increasing. Read through the literature, raise any concerns you have, and let me know if you want to move forward.”
Step 8: A Side Eye to Side Effects
The class of biologics most used to treat AS include TNF inhibitors, which block tumor necrosis factor (TNF), a protein that causes severe inflammation in autoimmune diseases. In short, they suppress the immune system that is attacking itself. Per the American College of Rheumatology, side effects include “skin reactions… an increased risk for all types of infections, including tuberculosis and fungal infections. Sometimes these infections may be severe. TNF inhibitors increase the risk of certain types of skin cancer… and have been associated rarely with multiple sclerosis and drug-induced lupus.”
The side effect that I fear the most is an increase in severe infection caused by the suppression of my already deficient immune system. Since I am already at risk for severe infections that have put me into the ER three times in the last few years, I fear the potential impact if I start taking a TNF inhibitor that further suppresses my immune system more than it already suppresses itself. Practically speaking, it seems illogical to restrict my body’s ability to fight infections if it is already weakened.
“With a disease like AS, your immune system is probably reduced by about three to four percent,” Rheumatologist #3 suggests. “And the biologics would only reduce your system’s effectiveness by another two to three percent. Consider the tradeoff if your pain caused by AS could be reduced by 70 to 75 percent?5 The percentages are in your favor. You also have ways to reduce your risk of contracting infections, like masking, washing hands, and something we used effectively during covid, which is mouthwash and snorting iodine after encountering someone that is sick.”
I appreciate Rheumatologist #3’s creativity with treatments like snorting iodine, supported by his pro and con math. In comparison, NSAID side effects include GI bleeding, ulcers, kidney damage, and cardiovascular events like heart attacks and strokes.6 While my kidney and cardiometabolic functions are currently monitored for issues, if my lab work ends up indicating something is wrong, the only solution is simply to stop the NSAIDs, which brings me back to square one with no pain management and kidney or other organ damage that is irreversible.
Step 9: The Decision
Navigating the many specialists, treatment plans, drug options, and the challenge of identifying the cause of pain between two different diseases is, to say the least, a stressful and often lonely process. While there is a lot of data on side effects, long term consequences, and results of using one medication over another, playing games with your health to reduce daily pain itself feels like a mental health risk. The quality of life of a chronic pain patient is so drastically diminished by our symptoms that we must make decisions between a) continued management of pain levels in the seven to eight range on a ten-point scale with flares that can go to eleven (IYKYK), or b) pills that can reduce pain by a few points, but cause severe damage to kidneys, GI, or the heart, or c) biologic medications that can reduce pain by almost 75 percent, but further suppress an already weakened immune system and force an isolationist persona to avoid severe infections.
A perfect option does not exist, but ultimately, I’ve decided to move forward with the biologic behind door number three recommended by Rheumatologist #3. While I don’t like increasing my risk of severe infections with a weakened immune system, I must at least try this process to see how my body responds. And a biologic bonus I recently learned about is a potential reduction in the risk of heart failure. With an autoimmune disease that attacks my own tissues and causes chronic inflammation, I’m already at a higher risk for cardiac diseases. NSAIDs, although they target inflammation, can increase cardiac risks rather than biologics, which target inflammation at a significantly higher rate than NSAIDs and reduce cardiac risks at the same time.7 For now, biologics have defeated NSAIDs in the side effects battle, and I will next enter the mental health ring with my insurance company.
Copyright 2026 David Lister. All Rights Reserved.
- Drugs.com. Reviewed by Kristianne Hanneman, PharmD. March 30, 2026. https://www.drugs.com/medical-answers/humira-cost-without-insurance-3537595/ ↩︎
- Drugs.com. Carmen Pope, Senior Medical Editor, B. Pharm. NSAIDS. April 23, 2026. https://www.drugs.com/drug-class/nonsteroidal-anti-inflammatory-agents.html ↩︎
- Drugs.com. Carmen Pope, Senior Medical Editor, B. Pharm. NSAIDS. April 23, 2026. https://www.drugs.com/drug-class/nonsteroidal-anti-inflammatory-agents.html ↩︎
- Hypermobile Ehlers Danlos Syndrome ↩︎
- Kapoor S, Kaushik VV, Jain R, Rao VKR, Gharia M. Real-life Tolerability and Effectiveness of Adalimumab Biosimilar in Ankylosing Spondylitis: the Adalimumab Biosimilar Patient Registry Data. ACR Open Rheumatol. 2019 Aug 12;1(8):480-484. doi: 10.1002/acr2.11067. PMID: 31777828; PMCID: PMC6857999. ↩︎
- Davis, A, Robson J. The Dangers of NSAIDs: Look Both Ways. Br J Gen Pract. 2016 Apri; 66(645): 172-3. doi: 10.3399/bjgp16x684433. PMID: 27033477; PMCID: PMC4809680. ↩︎
- Sunkara P, Garikipati NA, Nimmagadda R, Cherukuri AMK, Anne H, Chakilam R, Yadav D. Cardiovascular Outcomes of Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis: A Review of the Current Evidence. Cureus. 2025 Apr 14;17(4):e82269. doi: 10.7759/cureus.82269. PMID: 40376321; PMCID: PMC12078845. ↩︎
Invisible Pain 