How do you know if your doctor is good?

General
1

Here’s what happens when I go to my rheum:

  1. He summarizes the various things I’ve called the office for over the past few months - gave steroids for this, increased dose of indomethacin for this, etc.

  2. He puts pressure on each finger/toe joint and rotates my knees, hips, shoulders, elbows to see if they hurt. If anything hurts a little, he rotates it a little more before moving on.

  3. I ask a couple questions - This last time, I had three:

Question 1: I wanted to know how we would know if Humira wasn’t working any more, since I’d had one major and a couple minor flares in the past few months (major = lower back and all joints in pelvis significantly inflamed to the point that I can’t sit or walk; minor = aching from swelling in SI joint, costochondritis) and have been unable to run/jog without causing significant SI pain. He replied that unless I was completely unable to function, it was working.

Question 2: I asked when I should skip a Humira injection, since I’ve had a couple sinus and ear infections, and fighting conjunctivitis that won’t go away. He said unless I’m hospitalized, I should take my shot.

Question 3: I asked what I should do about my conjunctivitis - he said that wasn’t his area. I asked about whether or not some patches on my scalp and skin were psoriasis - he said maybe, but he wasn’t a dermatologist.

  1. He sets my next appointment and off I go.

Now I did call this week because my thumb is swollen, and one ankle, and he said I should come in - but he doesn’t currently have any appointments open so I’m on the cancellation list (and I can’t just drop everything at a moment’s notice and leave work).

Does this sound like a normal rheumatologist experience? Or should I be looking for a new doctor? I don’t have much experience with continuing care in this way to be able to judge.

2

Some of his replies are just a bit strange. I get the feeling you already figured that out. He seems very detached, as if nothing matters! Maybe he was “on vacation” during your appointment, but that sure isn’t fair to you! Hopefully, there’s a different rheumy in your future–or he was just having one bad day and the next visit won’t be a waste of your time!!!

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3

It doesn’t matter if his answers sound perfect to us… you posting this means you don’t feel safe and taken care of…

That said I think the answers are strange as well… not the once were it wasn’t his expertise but not stoping humira until it’s that bad or being sick enough to go to the hospital before not taking humira… But maybe he thinks you should be in the hospital with any fever? Lol

Unfortunately they all push harder and longer on painful joints to see where the pain is exactly…

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4

I’m with Cynthia on the “feel safe and taken care of”.

My personal doctor assessment tool is this one: when I go back to my car, I ask myself does what I was told by the doctor make sense to me? It doesn’t particularly matter whether I liked the doctor. Did what they said/suggested/ordered make sense to me?

By those measures, I’d be thinking about a switch. Your relationship with a rheumatologist is going to be a long one. Find one that makes sense, and who makes you feel safe and taken care of.

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5

100% agree that your doctor should be making you feel safe and taken care of. If he or she isn’t find another that does. If something is out of his expertise, he should be telling you to go to someone one who is, and possibly even recommending someone. Your body is whole entity. Bits of it don’t operate that independently from other bits of it really. It’s all interconnected. Treating one bit of it can affect another bit of it. This PsA disease affects all sorts of different parts of it too. By way of example, I get fed up with the concentration on joints presently as most of my more intense pain isn’t in a damn joint anyway, it’s along the length of a tendon!

But if I had your experience of your rheumatologist, I wouldn’t be feeling happy either. I’d be pretty fed up he just wasn’t that interested and was exhibiting such a laissez-faire attitude towards me. So I’d be thinking is he worth making money out of me? I’m not sure how you’re funded but as patient of his - he is making money out of you anyway. I’d be thinking I’d far rather someone, far more interested in me and caring of me was making money out of me and my medical issues than him.

You know a doctor’s job is treat you and hopefully optimise your quality of life. It’s also to do you no harm. Get all that bit out in the open and upfront and then you can usually develop a relationship with your doctor that makes sense to both you. I’m a nightmare patient for asking questions, seeking to understand what’s happening and what might happen. If my questions aren’t answered I become very stroppy. Yes it might be a pain in the neck for the doctor to deal with, but I simply don’t care as if I understand, I feel so much safer.

I literally don’t see the point of conferring all this respect on any doctor or any professional in any other discipline unless they’ve earnt it and indeed want to earn it from me.

Hope this helps.

6

That’s a good point. He usually manages to sound convincing while I’m in his office, but once I get to my car I think of several things that don’t make sense.

7

Thank you all! You gave me the answer I suspected, though I really didn’t want to have to start the doctor search again.

He really does think that unless I’ve been hospitalized with something severe that I shouldn’t miss an injection (so when I had bronchitis and was on antibiotics I skipped it and didn’t bother calling him - guess I should have realized at that point it wasn’t working).

I really wish that I could find a practice with all the doctors that I needed in one place - derm, optho, rheum, asthma - it would be nice to get that holistic view. Or maybe a doctor who specialized in all of those? Lol.

Thanks!

8

Where are you based Beeham? Is it possible to get the services of a primary care doctor to coordinate it all for you? GP’s in the UK are supposed to do that for you. Many do too but it can be hit and miss sometimes and often you’ve also got to work quite hard at it too. In the USA I know some insurers permit the use of a primary care doctor who could possibly do this for you.

Maybe worth thinking about?

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9

@Poo_therapy, all my doctors send reports back to my GP here in the US, but he doesn’t actually coordinate beyond knowing what is going on. And I’m not entirely confident in his abilities either. He forgot once that I was on Humira.

10

Why not start with changing him??? Just a thought. Best of luck with the more important doctor change though.

11

GPs I could see not knowing a lot about the PsA side of things for sure, but “forgetting” you’re on a med like Humira doesn’t speak volumes about the GP.

You’ve nothing much to lose by looking for doctors of each branch - nothing says you can’t keep going to the first ones as necessary while you look. It’s what I did when I was changing my primary care doctor.

12

Yeah, I know. Been there! That’s when the inconsistencies and the questions always hit me.

After one year of that, I fired my first rheumatologist. Really fired her: wrote her a detailed letter explaining why as well. I loved her: she was kind and sweet and motherly, but after every appointment I got in my car and cried. I felt awful, and she kept saying my PsA wasn’t so bad. I asked for biologics. She said my disease was mild. The whole time, I felt unsafe and not cared for. None of what she said was congruent with how felt, or my logic. At the end of that year, both hips were shot (they were mild/moderate at the start). That was it: I bolted to a PsA researchclinic. Their assessment? Severe disease, a lot of damage. They rushed me onto a biologic, but it was too late: by that time, I had extensive foot damage.

For a whole year I felt unsafe. I felt uncared for. None of what she did and said made sense to me. If only I had trusted my instincts and feelings rather than the doctor’s qualifications.

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13

I get into email correspondence with all of my doctors. And pour out all the after appointment ‘car thoughts’ afterwards. I write it up, sit on it for a few days, often then amend it down and then fire it off. They must hate me or at least they must sigh about me but I honestly don’t care if they do. For me my record with each of them has to show my concerns, my thoughts and anything else of use to them in their professional care of me and indeed it’s also useful if per chance they ‘eff up’. It’s up to them if they read it but they know I’ve got the record, since I’ve sent the email(s)! Consequently that normally elicits some response.

I suppose in many ways I just set up an ‘evidence string’. I do it with every professional whose services I engage, be it a doctor, financial adviser, or whoever. It’s not combative, or argumentative, it’s just recording things and asking sometimes if they’ll confirm my understanding is correct.

And given how full of contradictions and opposing views the treatment of PsA appears to be - for me this type of recording of appointments and my thoughts seems utterly essential. For me first of all as it can be so confusing but also for them as of course I’ll never trust their note taking will be as good as mine!

After my Bath appointment - I had 3 pages of questions about mxt, PsA and corrections as to my symptoms on her letter to my GP which I said could be answered at her leisure but she knows I’ve asked them now. I’m not necessarily proud of that either but it sets the tone and gives me a reminder of where I was at then too. And of course it guides the next appointment. That makes things easier for me as then for me it flows more coherently. I tend to find I get respected for it and if I’m not then I tend to think are they worth my time and trouble and indeed question should I be another patient for them to make an income out of. :slight_smile:

14

Just keep in mind hearing what you want to hear or hearing it the way you want to doesn’t make your doctor “good”

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15

Hi Beeham, I probably have a slightly different take on this one.

I don’t like my Rheumy. He doesn’t make me feel cared for, and most of the time, his interactions with me feel very dismissive. His treatment philosophy even conflicts with mine (he seems to have a fear of biologics).

But, once he realized I REALLY wasn’t happy on the standard DMARDS and biologics were the only things left, he knew exactly how to jump the Australian hoops to get me on them (and in hindsight, he had obviously been setting up a strategy for nearly 9 months to facilitate this - I shouldn’t have been a candidate because of low ESR / CRP, but due to his med mix, we got around this).

I also reckon he could give House (you know, the TV series guy) a run for his money on diagnostics. So far, he’s been right way more often than wrong. In my case, when I raise a significant symptom he doesn’t think is a direct result of PsA, he takes a guess at which body system it is, and refers me to another specialist. Each time this has resulted in a change in treatment that increased my quality of life, even if the result of the new specialist wasn’t exactly conclusive (these are very long stories so I won’t digress here).

So, in my case I persist with a Rheumy that I don’t really like who feels dismissive, because I get a really good medical payoff. If you aren’t getting some sort of significant benefit (which it sounds not from your description), persisting probably isn’t constructive, but in some cases, it can be.

I love Poo_therapy’s method - even if you don’t send the emails (my Rheumy insists he has no email address), it gives you time to reflect on what you did understand, what you didn’t, and get an overall picture on how the treatment is actually working for you (or not).

PS. If you have ongoing conjunctivitis, have you looked up blepharitis to see if that fits?

16

Nope, what that guy’s saying makes no sense at all. It doesn’t matter whether you like the advice or the treatment plan or not. The question is “does it make sense?”

17

Jen, that works for you because you are very well informed, and very assertive. I, too, have a specialist who I didn’t really like at the beginning. But she made sense, very good sense, and she obviously really knows her stuff.

I think that once you get your head around your condition, and you get a clear sense of what you want and what you are not prepared to accept, you are then in a position to take a more pro-active role in directing your own care. I figure I’m there now, but it has taken some time.

Love the email technique, Poo. Oh yes, putting it in writing is a powerful technique. Most of my docs don’t engage in email with patients, so my Swiss Army knife is the old-fashioned fax. I pay for a slick fax-to-email service so that I can communicate with my doctors in writing. (It all works through email, so it’s basically the same as an email.) I’ve never had a doctor fail to respond to something I’ve said or asked for in a fax. They know it’s “on the record”.

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18

I suppose that is where I get stuck. I don’t yet have a clear sense of what would be reasonable to accept where this disease is concerned. His guideline seems to be a big flare every 7-8 months, and low level chronic fatigue and swelling a few times in between. I don’t know if that is a reasonable place to be with this disease.

I will start keeping thoughts and questions in writing to see if they are being answered, and in the meantime set up an appointment for a second opinion with UPenn Rheumatology (might as well take advantage of a phenomenal research institute only 40 minutes from my house).

19

You know what I think of that doctor’s advice? Crazy! My theory is, okay, so you get all this extra sleep and you live longer…but you’ve spent more of your life sleeping, so if you subtract all the extra hours wasted in bed from your total hours alive, it will probably equal the days you actually “lived” life, rather than slept it away. Somebody close to me sleeps at least 12 hours a day, sometimes more. I won’t mention any names. So what if he lives more years than me? I sleep on average 6 hours a day…I get so much more out of life! Take a nap? Not if I can help it!

20

Now I have to disagree with you there - I love a good Sunday afternoon nap! Though I prefer it to be a luxury and not a necessity.

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