I’ve been in the process of finding a new rheumatologist in Taiwan. This is a dreaded process for most patients like me. Having your specialist retire on you is always a shock because your disease is lifelong and you want a good partner that is going to help you on your healthcare journey. Unfortunately, I’ve had two rheumatologists retire on me and I’ve also had two rheumatologists who didn’t meet my standards of care.
It’s frightening being a complex patient and having to approach a new doctor with your extensive medical history. All sorts of things can happen, from doctors who take your diagnoses away to doctors who gaslight you into thinking you’re crazy. (I’ve had both kinds in Taiwan.)
It shouldn’t be a big deal to have a doctor say, ‘Your arthritis is really serious, Carrie. I believe you.‘ And yet it is a big deal because I have had SO MANY rheumatologists in Taiwan who are ignorant and say things like, ‘Women don’t get AS. You don’t have the genetic marker so it’s not AS. You are too young, etc.‘
Some rheumatologists leave us fuming with their lack of care and inability to sympathize or reassure us that our disease, is indeed, very serious.
How do we find the good guys? How do we find a new rheumatologist?
Your doctor will be playing a very important role in your life, so choose someone who meets your expectations and is willing to be a partner in your health journey.
Check Your Connections For Referrals
Ask your primary care doctor to recommend specialists. Ask friends, family, and support group connections to see if they can help.
As I had a vote of no confidence in my last rheumatologist who treated me from 2018 to June 2022, I was reluctant to consider his referral. I ended up asking a number of friends in Taiwan and they came up with some great resources for the new city we’re living in. From there, I was able to whittle things down to a rheumy I liked.
Check Your Local Non Profit Directory
You’ll notice I’ve provided some links for finding a rheumatologist in your area. Most countries have a national registry that allows you to search for doctors.
Questions To Ask Your New Rheumatologist
Once you’ve started narrowing down your search, create a list of questions for your first appointment. Check to see if your questions are answered in your rheumatologist’s bio. In Taiwan, we must go to hospitals to see a rheumatologist, thus the hospital directory will offer a solid background of experience for each doctor.
- Consider the hospitals that your specialist works at. In Taiwan, doctors often rotate at hospitals. For example, the doctor I found is at National Taiwan University Hospital, which was my diagnosing hospital in 2009. Since I’m no longer in Taipei, I put NTUH at the top of my list in the new city I’m living in. It turns out that my doctor works at two NTUH branches in my area, which means his services are great and he’s a popular option for patients.
- Can you tell me about your expertise in treating patients with arthritis, specifically any type of Spondylitis? Since I have Axial Spondyloarthritis and Psoriatic Arthritis, that’s what I focused on in my search. Finding a doctor that knows about my comordbities was also important, so I also checked to see if doctors had experience treating patients with fibromyalgia.
- Have you conducted any research studies on Spondyloarpathy? What are your specialities?
- Have many patients with axSpA do you treat each year? This question is important because it tells you that the doctor is active in their field and should know the most up to date research and treatments.
- Can your doctor answer questions outside of office hours? Finding a doctor that can answer emails or calls is of the utmost importance. My new rheumatologist gave me his email within 15 minutes of my first visit. That’s the first time this has happened since 2009, so I felt reassured that I’d picked the right doctor.
Any doctor you choose to work with should be upfront and honest about answering your questions. They should listen to you, explain things simply, and treat you with respect.
Other Things To Consider When Finding A New Rheumatologist
- Location – Is the hospital or office close to you. What are your travel times going to be like?
- Clinic Hours – Is the clinic open at a convenient time for you?
- How easy is it to schedule an emergency appointment?
- Lab work – Does the office or hospital offer easy to access lab work and X-rays?
The backstory to this post is at Another Disabling Flare, Another Year in Bed, but let me condense what has happened to me, so you know what to avoid if you ever find yourself in my position.
In a nutshell, the rheumatologist that I’ve been seeing in Taipei for the past four years was not monitoring my labs or keeping an eye on my disease activity during a change in biologics in November 2021. The symptoms that I was presenting in Sept-Nov 2021 were written off in my medical notes as anxiety. It turns out those symptoms were Axial Spondyloarthritis turning active again. My body was no longer responding to Enbrel injections. He dismissed my concerns when I repeatedly flagged more pain, more fatigue, rashes, eye problems; and dry eyes, mouth, and skin last fall. I asked him to test for Sjogren’s Syndrome because it’s possible I could have it given that it often presents in patients with Ankylosing Spondylitis.
He ran an ANA test and it was negative. Then he wrote in my medical notes that I was anxious about it!
But I was not wrong to inquire about it! In fact, it was a very smart question to ask given the overlap in patients who have the same issues.
This problem has only gotten worse since I asked about it in November. It turns out dry eyes, dry mouth, and dry skin problems plus the psoriasis were all signs that my disease was active again and my meds were no longer keeping it under control.
I let that mistake go and gave him the benefit of the doubt, but when he put me on Humira and again failed to monitor my labs and recognize the signs of my arthritis being active, things went south fast. By that time, I’d been on meds that hadn’t been controlling my arthritis for at least six months that I knew of.
It was only when I went in for my March appointment, unable to walk or stand due to massive swelling in my knees, fluid filled legs from hip to toe, and my strongly worded urging to line up my blood tests that he realized uh oh. I switched to my third biologic in five months and spent thousands of dollars doing it. By June, I found out that he neglected to inform me properly about one of my new medications, he waited too long to assist with cortisone steroid injections, and he was negligent in telling me to exercise when I couldn’t even stand. This resulted in a vote of no confidence. I left my June appointment in disgust and had to start the search again. That meant finding a new rheumatologist in Taiwan.
My Biggest Concern For Finding A New Rheumatologist in Taiwan
My biggest concern with finding a new rheumatologist in Taiwan, aside from having to go over my extensive medical history again and present it in a condensed version, was ensuring that my new rheumatologist was educated enough on AxSpA to treat me.
That meant they had to pass my strict requirements for a doctor: demonstrating a clear knowledge and history of treating patients like me, finding someone who is willing to take on a complex patient, and avoiding those big no-nos with axSpA: taking time to explain, no dismissing, and no gaslighting.
It meant finding a new rheumatologist in Taiwan who was like my diagnosing rheumatologist in 2009. How I wish I had him back!
The rheumatologist who diagnosed me by x-rays and lab work in 2009 was correct with his Ankylosing Spondylitis diagnosis. (I never doubted him!) I remember sitting in his office after transferring from Adventist Hospital and having him look at my swollen knees and joints. I remember him taking my lumbosacral spine X-rays and tracing the outline of inflammation in my SI joints while carefully explaining what was normal in my x-ray and what inflammation looked like. I never found another rheumy like him until July 2022. That meant that the doctors I’ve been seeing since 2015 have not been running scans, x-rays, or doing tests that are required for a patient like me. I’d ask for a lumbosacral x-ray, and they’d run the bloodwork and a cervical spine x-ray at best. All in all, it felt like talking to a door. I could not understand why doctors in Taipei would not run this X-ray for me, especially during times of high inflammation when it was obvious that something was very wrong.
After my first rheumatologist retired it was a struggle to find other rheumatologists who would listen, monitor me properly, and acknowledge the severe pain and fatigue I suffer from 24/7.
When I had researched across databases, checked with every non profit organization I know, and pulled in every resource I had, I was referred to a doctor at NTUH Zhubei Branch. After reviewing his medical specialities and seeing that his experience didn’t check all my boxes, I noticed another rheumatologist who had extensive experience with AS patients in Taiwan with a history of treating other inflammatory arthritis patients and he had experience with fibromyalgia. BINGO. I booked with him. I had my first appointment with him on July 18th – seven months after my health crisis started.
My new rheumy seems very competent and chatty. I’ve received more info from him than from all the others combined. He took time to read my condensed medical history and has my binders to refer to for my next appointment on Aug 1. He ran immediate blood tests, x-rays, and I saw him three days later for a knee ultrasound. During my knee ultrasound, he told me about my sacrolumbral x-ray results and my lab work and said, ‘You definitely have Spondylitis. Your x-rays show it. I can see the inflammation in your SI joints. Your labs show it, your CRP and ESR are always high, as you’ve mentioned, but it looks like Cosentyx is working because ESR and CRP are coming down. I can still see inflammation in your knees so only try to walk when you feel you can. Don’t walk for long. Listen to your body. If the swelling comes back after a few minutes, REST and ICE.‘
I swear to God I almost started crying right there. I have met so many dismissive and awful doctors in Taiwan and Canada. My new rheumy is just so nice and super knowledgeable and I can tell he wants to get me back on track.
No patient should ever be made to feel that they are not believed.
No patient should ever be gaslighted or dismissed or made to feel like they don’t know what they are talking about, and yet that is all I’ve known for years.
No one wants to help.
Comorbidities with Axial Spondyloarthritis and Psoriatic Arthritis
He also brought up my comorbidities and that shocked me as no doctor has ever done that in Taiwan! The first thing he asked is why I haven’t been referred to a dermatologist despite having a PsA diagnosis. That is one of the first things that should’ve happened as soon as I got that diagnosis. He has booked me in to see a dermatologist on August 1st.
He also confirmed that ‘without a doubt your comorbidities are taking a toll on your health and your fibromyalgia is making things much worse.’ I seriously wanted to hug this guy! I’m feeling anxious because it almost went too well, but I’m hoping my hard work has paid off.
He already has a suggestion for the next biologic if Cosentyx fails. My axSpA and inflammatory arthritis friends were right. I need extra meds because my body makes antibodies to biologics rather quickly.Most docs look shocked when they see my records.
My new doc did not look shocked. He said, ‘I see you need help. Let me help you! We’ll get you back on your feet with time and patience.‘ Yup, there are massive perks to having moved out of Taipei! He mentioned that patients get less care in Taipei and I don’t really understand why that is happening in our capital city, but I’m glad we moved out of Taipei. We would’ve moved long ago had we known I could get better care and immediate tests outside of Taipei. Zhubei has better healthcare AND it’s an accessible city that accepts wheelchair users as a norm!
Here is an idea of what my medical history looks like. I have two fat black binders from 2009 to 2018. The color tabs show diagnoses and meds I’ve tried. The notes that I’m holding are my tests and info from 2018 to 2022. There is no med I haven’t tried now. (Aside from newer biologics that are still getting started in Taiwan.)
Understanding Cultural Differences in a Homogenous Society
The other issue that I run into here in Taiwan is that doctors don’t know stats for different ethnicities because Taiwan is a homogenous society. They’re not used to dealing with folks from other places.
All this time, they’ve treated me like an Asian patient and have compared my tests and results to what they know – which is Asian patients. But what’s the point of attending global summits and learning about patients from all over the world if you never apply it to your own practice? Doctors are supposed to know these things!
Thankfully when I asked my new rheumatologist if he is aware of the differences between sexes and ethnicities, he said yes and rattled off some great stats. (How did I know he was right? Thanks to the Spondylitis Summit in May 2022.)
He also confirmed that most doctors don’t consider that here.
Working Your Healthcare System
Taiwan’s healthcare system is very different to what you’ll see elsewhere. We have universal healthcare, which is great if you’re sick and need to see a doctor quickly, but this healthcare system works against patients who are really sick or have what are considered to be rare diseases. (AxSpA is not rare, but it’s treated that way here.)
The doc had time to chat with me the day we did my knee ultrasounds, so we talked about how the healthcare system in Taiwan hinders doctors from doing their jobs. They’re working in a healthcare system that works against them, especially if they’re working in Taipei, which has stricter requirements for doctors and patients.
It is impossible to see 101 patients in one clinic session. That is compounded by universal healthcare here, which means patients who can go to clinics and don’t need to be at hospitals are clogging the system.
Plus Taiwan NIH has strict and impossible to meet and completely outdated criteria BECAUSE we have universal healthcare. There is no time for doctors to spend more than the average 7 minutes with patients. There is no time to look at other things or listen to patient suggestions.
We also have cultural differences here with doctors and their mentality is that think they know best and they do not like to be questioned. They aren’t willing to listen to patients or consider their extensive medical history and lived experience as a bonus!
Plus their hands are bound by regulations. They have to rule out all the cheap meds first instead of going in and treating with the hard hitting meds for patients like myself who have an extensive history of meds not working for me.
That draws a patient’s history out because they are working through cheap options first. (You have to spend six months on a med before they recognize it as ‘med fail’.) That’s ridiculous. Look at how much crap they’ve pumped into me in 14 years to rule the cheap options out first. Look at all the other money I’ve had to spend on tests and ER sessions because they had to do all this other stuff first. The older meds also caused more problems, which made my overall history worse as I got sicker and picked up more health probs related to meds I never should’ve been on in the first place.
Not to mention that handling things this way causes MORE of a burden on the healthcare system. Instead of treating complex patients quickly and efficiently they have to go through these steps which means more work for hospitals as patients move through unnecessary steps to meet NIH regulations.
I’m Still Learning But My Expertise Is Invaluable – Finding A New Rheumatologist
I’m still learning and am now at the point where I feel like I know more than my doctors and that makes sense since patients like me eat, sleep, and breathe it year after year.
At some point, all complex patients must be organized and ready to advocate and attack or we’d never find anyone to help.
I learned this through the patient networks I joined in 2009. Get all your notes, organize them, track your test results, and keep EVERYTHING. Highlight so new docs can find things easily. This is why patient networks are so important.
New patients learn from veteran patients and that’s how I got into advocacy 14 years ago. What I learn helps others who are newly diagnosed. This is especially helpful for foreign patients here who are navigating a foreign healthcare system or don’t have access to good info in English.Doctors don’t teach you this stuff. They might get some time (hours, a year, or more than that) in medical school learning about different diseases, but they don’t have years of lived experience, which is why they should be looking at their patients as partners for finding better healthcare.
That attitude isn’t really here yet as you’re not supposed to question your doctor here. They hate to see me coming, but if they listened, they’d know I have access to far more resources than what they get here.
So that’s my story of finding a rheumatologist in Taiwan and all the things I have to think about, both for myself and for my doctor. It’s long but I hope you found it useful.
Tools for Finding a New Rheumatologist
- Taiwan Rheumatology Association
- Spondylitis Association of America
- ASIF – Axial Spondyloarthritis International Federation – ASIF is an international membership organisation representing patient associations around the globe specialising in the support of patients with Axial Spondyloarthritis (axSpA). Taiwan is a member of this organization.
- The American College of Rheumatology Online Directory The American College of Rheumatology is a national organization that represents rheumatologists in the United States. You can search for specialists in your area.