Choosing a new rheumatologist was relatively easy, but getting a referral, finding an office that would accept my referral, and then actually getting in to see the doctor was quite difficult. I started trying to find a new rheumatologist after only three appointments with the one who diagnosed me with lupus. In fact, I almost walked out of my third appointment with him after waiting 2.5 hours to be seen – the only reason I didn’t walk out is because I would have run out of my medications without the visit.
My first referral to a new rheumatologist was denied because the office was not accepting transfer patients. They told me that there are a shortage of rheumatologists in my city (and in the USA overall) and that this would be the case at most offices. I felt lost and confused, the only way to not be a transfer patient was to go without a rheumatologist for months – which would have been devastating to my already poor health. I was ready to suffer through the various issues of my doctor until the Facebook group Mama’s Facing Forward encouraged me to keep looking for an excellent rheumatologist. My second referral was lost, however, and in the end it took me over a year from the time I started my search until I was sitting in the office of a new rheumatologist.
Part of the reason why I wrote this post was to vent out all of my frustration that has built up over the past year with my previous rheumatologist. In fact, most of this post could probably be considered a rant. However, I also want to highlight the difficulties that people with chronic illness face when it comes to their doctors and treatment options. And it’s my hope that some parts of this post could help others analyze their own doctors’ appointments in case there is an important aspect of their own care that is being mismanaged. With that in mind, here are some of the things that were difficult for me during my first year of being treated for lupus with a less than stellar rheumatologist.
Signs That You Need a New Rheumatologist.
If the word “remission” is never mentioned in any of your appointments.
If they never talk about your long term care plan in general.
If they ask read you the same 10 questions from a list at every appointment.
If they send your prescriptions to the wrong pharmacy.
If they don’t send your prescriptions to the pharmacy at all and you have to call their office repeatedly to get them sent over.
If they won’t give you more than a 30 day supply of your medication at a time – even when your next appointment is actually 31 days away. (Can I get a refill, please??)
If they refuse to prescribe a medication that you have a demonstrated need for because you’re pregnant – despite the fact that your maternal fetal medicine doctor called them to explain why it was necessary and safe.
If they attempt to bill your old insurance company even after you’ve given them your new insurance card (months ago).
If they send said bill that “wasn’t covered by insurance” to your old mailing address, which you also updated months ago.
If getting your lab results from them feels like asking them to do minor surgery. I mean, why is it such a hassle for me to get my own lab results? Providing patients with their medical records should be automatic (and it is at many of my doctors’ offices).
If you’ve had to wait more than an hour to see them at more than half of your appointments.
If they mumble.
If they ramble.
If they mumble while they ramble. (Although, I would be willing to endure mumbling and rambling if they were an otherwise excellent doctor).
If they aren’t proactive and aggressive in your treatment. Lupus can become life-threatening if active disease is not treated quickly.
If they tell you that your inflammation levels are nothing to worry about when your CRP is 37 and your ESR is 48.
If lupus patients are only a small part of their practice. They need lots of experience with lupus.
If you feel like you have to constantly advocate for yourself during each appointment. Even with an excellent rheumatologist there will be times when you need to advocate for yourself, but it shouldn’t happen at every appointment.
If they tell you that anxiety and obesity are the only reasons that you are experiencing pain – this happened with my first rheumatologist in Germany. Run, don’t walk, out of the office if this happens. Chronic and severe pain is part of many chronic illnesses and needs to be treated appropriately.
If they aren’t paying close attention to your lab work. My rheumatologist would look at my blood work from the previous month for the first time during our visit. I always found this alarming, because if something had been wrong I would have needed to know sooner. Another thing that really bothered me is that when I complained of dry eye my rheumatologist told me it was Sjogren’s Syndrome. However, I had tested negative for the Sjogren’s antibodies and I didn’t have any other specific symptoms that would suggest Sjogrens (such as dry mouth).
If they don’t give you a thorough physical examination. My previous rheumatologist would barely press on my joints when evaluating them for pain, swelling, and effusion. Even though some of his patients probably have extreme sensitivities to touch, he wasn’t properly evaluating my condition due to his exam style.
If they aren’t capable of monitoring all aspects of your disease. Last year I began having signs of potential lupus related heart and/or lung problems and my rheumatologist wrote a prescription for a chest x-ray and told me to take it to the hospital. Um, what? I didn’t even know where to begin with a prescription for an x-ray so I called my primary doctor. She was able to complete an EKG, a chest x-ray, and an echocardiogram in office.
If they aren’t running the right tests for your disease. I actually didn’t know this until my first appointment with my new rheumatologist, but my previous one never actually ran the tests that can determine if lupus is active or not. This is part of the reason why I would encourage anyone with a chronic illness to seek a second opinion or, at the very least, compare their lab tests with others if they have the slightest bit of skepticism about their doctor.
I’m happy to report that I don’t have these issues with my new rheumatologist. I usually see her within 15 minutes of my appointment time, she is very familiar with lupus, she prescribes me months of medication at a time (which is so convenient), she’s very easy to communicate with whenever I need to speak with her, and she always sends me my lab results promptly after the appointment. I really do feel like she is part of a healthcare team that is dedicated to taking care of me and it makes a huge difference in my treatment.
What would make you start looking for a new rheumatologist?
Signs That You Need a New Rheumatologist. Share on X
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This is such a useful post! I have shared your link on my regular feature on Pain Pals Blog "Monday Magic – Inspiring Blogs for You!"….thanks for sharing on CIB, Claire x
Thanks so much, Claire!
I just had my first rheumatology appointment last week and was given a working diagnosis of fibro, but they're running tests for other illnesses as well. It seems like he's a good doc, but I'll definitely be keeping these things in mind moving forward. I'm sorry it took you so long to find a new rheumatologist! We have a shortage around here too! One wouldn't take me because the word "fibromyalgia" was in my referral, even though the doc basically was like "looking for a diagnosis, thinking maybe fibro". But they never called and told anyone that. Then, I got a second referral and they never called. Finally the referral to this doc went through, but they couldn't get me in until the end of July. However, by a sheer stroke of luck, they opened up an extra day, called me, and I got an appointment last week! I was so excited.
I was diagnosed with fibo when I should have been diagnosed with lupus (all the signs were present at the time) and ended up waiting another year to get the right diagnosis and treatment. I also had a dr turn me down when he saw fibro in my file. A fibro diagnosis makes me nervous that they are possibly missing something more serious – at least without very rigorous testing to make sure. It’s supposed to be a diagnosis of exclusion, if that makes sense. Hope you get answers and feel better soon!
Thank you for this – it seems like it would be applicable to many specialist encounters – and it's reassuring to know other people have similar experiences and it's NOT OK. Awesome post! Lowen @ livingpositivelywithdisability.com
Thanks so much, Lowen! I wish things like this didn’t happen, but at least we can commiserate when they do.
WELL, It will be almost be a year since I first went to my GP and was referred to a rheumatologist. And I've only seen her twice. She was very skeptical at our first appointment to be honest and made me feel like I was wasting her time. I didn't have enough symptoms. Apparently. On my second appointment after she had gotten my test results. MONTHS later because she went on holiday and then was booked out I was diagnosed with Sjogrens. She also didn't really seem interested in talking about anything other than the answers to her questions. If I tried to mention other symptoms she didn't ask about she would change the subject.
Now I'm on plaquenil and I'm not due back for another few months to see if its working. I guess she knows what she is doing but all the waiting to get very little information and be charged an absolute fortune is ridiculous.
Sounds like there is a shortage of rheumatologists everywhere!
It sounds like you have not had a very good experience. 🙁 With many autoimmune diseases you need treatment quickly to prevent long term damage, I would definitely encourage you to see if you can get another referral for someone who will be more interested in your care. Sorry to hear about all this. It’s so hard to find a good doctor!
Thank you for an excellent article. I've been diagnosed with undifferentiated autoimmune disease and when asked why it wasn't lupus the doctor replied because I did not have organ damage. I replied, you have to have organ damage?! And the response was, well, no but… Another comment he had was that, "you can live with fevers." Um, no thank you. The lack of concern and desire to get to the bottom of my symptoms is so obvious and disconcerting. Why exactly are you a doctor?? I've been to so many doctors trying to get to the bottom of my illness that I'm finding myself almost frozen to take the next step to find a new one. I am actually more afraid of going through mistreatment all over again than non-treatment. That should tell you something care-givers!
There are many ways to diagnose lupus aside from organ damage… and it seems like it can be hard to detect organ damage in routine tests unless the damage is pretty serious? Um, no, you can’t just live with fevers. That’s not normal. I hope you are able to find a better doctor! I’m sorry to hear about your bad experience. I didn’t get my diagnosis until my third doctor and I didn’t get good treatment until my fourth doctor – it’s rough!
Thanks for such a great post, Ava. I'm from Bangladesh and healthcare in this part of the world is so much worse. Getting a doctor's appointment is never a pleasing experience here in my country. I hope you have better experiences in the future. It was a nice read.
Akon, thanks for the kind feedback. I’m sorry to hear it’s such a struggle to be treated by a doctor in Bangladesh. I imagine that can really affect your health, both mental and physical.