New Rheumatologist.., am I crazy?

The Best Rheumatologist Ever is retiring. I have been seeing him for 13 years. After going through 3 other Rheumys, he was the first to treat me as a person; with empathy and compassion. He has been treating me for PsA for those 13 years. Initially, other doctors missed the mild psoriasis on my scalp. After several years, the psoriasis and psoriatic arthritis continued to get worse until I went on Taltz three years ago. The Taltz worked fantastic for the psoriasis but did not control the body-wide, inflammation and pain that I was still having. Recently after a trial of Rinvoq, good Rheumatologist moved me to Simponi. The Simponi has helped some with body-wide inflammation, is still controlling the psoriasis, and helps some with the fatigue.

OK, here is my problem. I just had my first couple appointments with a new Rheumatologist. He says that he’s doubtful that I have Psoriatic Arthritis and if I do have it, it’s mild. He thinks all of my symptoms are being caused by osteoarthritis, Diffuse Idiopathic Hyperotosis Syndrome (DISH), and fibromyalgia. If each of these appeared independently, and without a history of psoriasis, or my psoriatic nails, which I don’t think he even looked at, I might be convinced. Unfortunately, he said several other things that really bothered me for example, he claims that Psoriatic Arthritis does not cause fatigue. REALLY? He also claimed that I have no joint swelling. He said this while I’m looking at my swollen wrist and my hand, which has a lot of swelling in between my knuckles. I also have consistent random swollen joints all over my body. Sometimes my fingers swell so much that I can bend at a particular joint and it will bruise the finger. I offered to show him pictures. In a nutshell, I have joint swelling, but I also have a lot of soft tissue swelling. If you review and read information about DISH, it is frequently found in conjunction with psoriatic and related diseases, ie.) Spondyloarthropathy.

All of these things are just an example of my interaction with him. He did take x-rays, which showed a lot of joint degeneration, osteophytes, but evidently no swelling within the joint. I have CTs and MRIs that show ligament thickening and tendon calcification.

Here’s my question, would you start looking for a different rheumatologist or would just stick it out with someone that you feel needs to go back to school.

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Sack him immediately and find another. This one is a serious jerk who obviously hasn’t really done the module on PsA. First it’s pretty unethical frankly to say you don’t have PsA given the number of meds you have been prescribed for PsA and your varying degrees of success with them. Secondly PsA is rare and whilst he might not have said this to you, I would imagine you are one of the few patients he has ever seen with any PsA. And people love ‘evidence’ rheumys get a lot of ‘evidence’ when they see RA patients, they get a shed load of little evidence when they see PsA patients. PsA is seronegative so for the majority of us nothing shows on bloodwork. It also doesn’t like to show up on US or MRI unless exceptional inflammation is going on. The damage it can cause our joints looks prescisely the same as OA to an untrained in PsA eye. No radiologist is routinely trained in PsA either. Hence that is why some decent Canadian rheumatologists pushed for things like the PsARC exam which has the rheumy physically examining all 68 joints currently deemed affected by PsA and thereby scoring the patient out of 68 to show a level of disease activity that’s trackable if they PsARC you every time they see you. So a PsA rheumy has their hands all over you in the nicest possible way each and everytime they see from the top of your head down to the bottom of each little finger joint and the bottom of each little toe joint.

So honestly for your sake and for the sake of being on any PsA med which your rheumy has to tell your insurer to pay for - please find another rheumy and this time one who knows something about PsA. Otherwise you are about to lose your meds and any relief at all.

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I’m 100% with @Poo_therapy

This doctor is not listening to your full history and is not showing you appropriate respect. You are an expert on your own condition and your own body. I’m sorry you’re going to have to go through searching for a good doctor again because it is not fun, but it sounds like in the long run it’s well worth it

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Dear Stony, and Poo Therapy,

Thank you both so much! I don’t know why when I walked out of the appointment I was so deflated. I have been right about my own health situation more times than my doctors. I am intelligent and certainly much more knowledgeable about my body and health history than this doctor. I don’t know why I let him get to me? The fear of losing my medication and disability benefits, but worse is that fear of going back to being told that there’s nothing wrong with me and it’s all in my head. After speaking with some other people and reading your responses, I will absolutely not go back to him! I will be writing some reviews about his arrogance and ignorance because there’s so much more that he said/did that I didn’t say in this format. Thanks again for the encouragement!

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Hey Lyndsey,
You’ve been given some really good advice by both @Stoney and @Poo_therapy

My advice: Don’t ever tell a dr this. You are correct, you live in your body 24/7 and you know your body, you know your symptoms. But they don’t like being told such things, in fact, I’ve found they can get rather anti indeed. But if any dr tells you they “…know all about it…” and yet you’re still questioning that knowledge, always get a 2nd opinion. My situation is not PSA related, but I’d have followed my first few medicos advice… …I’d be dead by now. I always recommend people get a 2nd opinion, even if it’s just to confirm a previous opinion.

When it comes to rare conditions, such as PSA, that line “…it’s all in my head…” is VERY common. For some medicos it’s a bit of a safety thing, like ‘Well, don’t blame me. It must be YOU…’. I say this because, yea, I’ve had that same line… …repeatedly. Then they found a cause and I wanted to scream. I’d been telling them “Something’s not right”. But I was wrong, until the tests confirmed it, then they agreed. Grrrrrr.

Don’t let them discredit your symptoms. You know ‘You’ better than anyone.

Merl from the Modsupport Team

Lyndsey, I am so sorry your new rheumatologist treated you like you don’t know what’s going in in your body. It’s so hard to loose a doctor who you have trusted for so many years with your health, only to have an experience like this.
I had a similar experience when my insurance carrier changed and my trusted doctor was not on my new plan! Oy! I cycled through several dud docs who were rude and dismissive until I found another gem. I trust you will too.

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Get rid of him and find a rheumatologist your comfortable with. If you took your car to a mechanic and you thought he had no idea what he was doing, would you go back?

For a specialist to say that Psoriatic Arthritis symptoms dont include fatigue is just a huge marker that he has no empathy and has no idea what he’s talking about. Chronic Fatuge with PSA is well documented.

To diminish the amount of pain you suffer and the extent of your swelling after one consultation is just incompetent and unprofessional. If you dtick with him, who knows what damage he may cause

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I cannot thank you all enough four your encouragement!

I did not investigate this doc enough. I was more concerned about my insurance paying. After the fact, I have been to a couple of websites, such as Health Grades… And his reviews are exactly what I experienced.

He did not just say that psoriatic and autoimmune disease did not cause fatigue, but he also said that they did not cause pain.

I have been referred to a different rheumatologist. One that I have thoroughly reviewed. I am very anxious about this. I would really appreciate any suggestions to help things go well with the new physician.

What a complete wackadoo! So this doctor was saying that the disease that causes joint damage would not cause pain. I’m really wondering if there’s a way that you can report him to the practice manager at a bare minimum. He’s not just clueless, he’s actually harmful

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Oh, I know, right! I think most of us that have chronic health issues are well aware of the arrogance of most doctors. It doesn’t matter if they’re nice or not. I get it. They’ve worked hard to be specialist in their field and I get that, but my favorite doctors are the ones that understand that they don’t know everything particularly how it feels to live in my body.

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The problem I find is that not many will admit that. Personally, I’ve found it’s easier to go ‘Yes sir, no sir. Whatever you think sir…’ take their information and investigate it. I have in the past corrected a Dr’s assessment because what he was saying was blatantly wrong. He didn’t like that, in fact he exploded, “I’ve completed years of study and have university degrees to prove it, so I know. You? You’re just the patient. You wouldn’t know…” My wife was with me, which was a good thing, because I wanted to crucify the man. Arrogant sod. And then when they come out with the line 'Ohh, it can’t be THAT bad…" it just goes to show how disconnected from our reality they really are.

I’m often saying to other members ‘We know because we live it too’. That gives us an education no university textbook or classroom can ever provide. A lived experience.

Merl from the Modsupport Team.

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I have learned to be careful with one says to a doctor. My file, which my GP readily gave me a copy of, had a line in the report from my rheumy, “Patient is non-compliant.” …all because I didn’t see his foot specialist. Every physio or physician can read that comment before they examine me and that can tarnish how they view me. Most doctors tend to stick together and don’t take criticism or confrontation very well. I too have had the finger wagged at me that pointed to the degrees and licenses on the wall. I think my rheumy graduated in 1973…I wonder if anything has changed in the medical field since then?

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Wow Merl! I ferociously question my doctors and indeed tell them off too when warranted. And if any doctor exploded like that at me as a patient I would work hard to ensure their ability to earn such huge amounts of money was significantly reduced frankly. My retort (and I know I’m very lucky in this) is ‘as a lawyer I used to train such consultants like you to give evidence in court. And many of you didn’t make the grade because your opinions lacked cogent veracity as yours presently does now! So please stop parading this nonsense so arrogantly and lets get down to what the science says.’ Or something similar. And I have said that both as a lawyer and indeed a patient.

And you’re right we live the disease and its consequences and that also pulls rank if any rank needs pulling. Just as I have to earn others’ respect so too does the doctor treating me though. I was brought with the notion that I’m no better than anyone else and no one else is any better than me too.

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You see me being me would get that removed from my medical record. And indeed if I had been asked to see the ‘favourite foot specialist or the carpal tunnel guy’ as you have been, I would have written afterwards detailing how neither of those specialties could help my PsA. I would never return to any doctor who had to point to qualifications on the wall to bolster himself up either.

Here’s what I do. I write out a potted chronology of issues and meds taken and diagnoses made. Then I write out a list of questions. I give a copy of both to the doctor and say I need to ensure all of these questions are answered before the end of the appt too and I ask for both to be put on my file. That helps set the agenda for the consultation well andthe fact they are on my file then helps the next appt and so on. I have this notion that it’s ‘my appointment not theirs’ so I set about owning it in that way. Hope this helps.

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Oh Poo I wish we had the options you do, could really use more flexibility!

I know Amos is in Canada and so am I - I recently lost my rheumatologist who quit the practice to go on to other things. That left more than 2000 (2500?) patients in limbo, with referrals that are crammed off to other rheumatologists who also have too many patients. Because of where I work (dealing with seniors and people with physical issues) I recently learned that some of the referrals didn’t turn up where they were supposed to despite patients having letters they were referred to a specific rheumie, who can’t do anything without said referral. To top it off, in the small city I live in the only other rheumatologist is retiring this fall.

We don’t have the ability to “fire” our rheumie and must play nice so we don’t get dropped. I had a video conference with my new one who appears to be just out of school and is five hours away. He couldn’t understand my mostly clear blood work and why my meds had changed so many times. I’m pretty scared what will happen if my Rinvoq stops working (and it’s not working as well as I would like). Kinda feel like I’m clinging to a life raft here and I better behave because I don’t want to be back at the beginning of all this mess where it took 10 years to get diagnosed, etc.

Back to the original question - YES ! I would look for a better rheumatologist Lyndsey, if that was an option because we all deserve not just proper but good care. This sh*t is tough stuff, we need all the support we can get !

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Ahh, yes, the old ‘non-compliant patient’ label. Me too. I tend to question everything and they don’t like that. I was always brought up in an environment where the authority always knows best, in this case the medicos. And yet time and time again they have been wrong. I was labelled ‘Crazier than a box of frogs’ because 'you just can’t be having THAT much pain. We can’t find anything… …until they did find it. Then they were all patting each other on the back like it was all something new, I’d been telling them for years something was amiss.

I was going to say ‘recently’ but when I think about it, this occurred years ago now. In this state we had a lady who was misdiagnosed. She was sent for scans but no one followed through with the results, each had decided it was someone else’s responsibility. Turned out she had cancer which, by the time someone had picked up on it, was terminal. Had the medicos followed up there was a high probability of survival. Rather than admit fault the medical fraternity all tried to alibi themselves out of responsibility. There was one Dr from a private hospital who dissented, not supporting the fraternity. They were threatened, the private hospital was threatened and when the family pushed for a review no Australian dr would support their claim for fear of being ostracised. The family had to get a Dr from the World Health Organisation to support. They eventually won their claim, but by that time the woman had died. There was an outcry about the whole fiasco and it showed the medical fraternity for what it really is, a protection racket.

I ask the same question, but my answer is… “Probably not” and this is why I’m a strong self advocate. If something needs to be followed up, I do it myself.

Merl from the Modsupport Team

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You accurately describe the system we are in. Part of me doesn’t put all the blame on the physicians as it really is our political system that has failed at providing adequate funding for more trained specialist. The doctors are human and are incredibly overloaded…not excusing unprofessional actions but many are just plain burnt out. The system is broken. You said that your Rinvoq isn’t meeting your expectations, in what way? Where do think it is helping and where is Rinvoq not measuring up? I am of the same opinion of Rinvoq but don’t want to complain as it might be better than the next one.

This is a reply to all who have expressed being treated poorly by the doctors that have sworn an oath to care for us. I am so sorry! I have traveled over 2 1/2 hours to see my rheumatologist, who is retiring, for over six years. Before that, I traveled an hour and a half to see him. I ended up traveling this far to see him because my pain specialist was in the same town. I ended up driving this far to see my pain specialist because I got sold a surgery. I trusted my surgeon, got a second opinion, and the surgery changed my life forever! I saw Doctors from Miami to Minnesota, and from the Carolinas to California to fix what could, very, unfortunately, not ever be fixed.

The doctors did stick together, I never saw this more than after this surgery. It truly was a tale of pharmaceutical companies and doctors protecting one another. it was a Numbers game, and after traveling and seeing all these different doctors, I finally found one or two interested in helping me. Shortly after major health care changes in our country, I lost an entire practice of internist. They literally all quit, or found jobs in corporate medicine.

I say all this to say that I have also gone up against doctors. I have stood up and asked them to take things out of my record and been belittled. If they refuse, you are allowed to place a statement in your record (US). I’m not sure how much good it does?

My husband continually reminds me that they shouldn’t get paid if they don’t do their job and if I’m not happy with them, then I can fire them. Obviously, that’s a gross oversimplification. You have to pick your battles. This jerk that I just fired did renew my prescription for a TNF blocker. That will hold me over until I see the next rheumatologist. Thankfully I live in a metropolitan area that does have many different doctors.

I’m sorry for those who aren’t in this particular situation! I pray that you will be able to possibly, once or twice a year, travel to see somebody, somewhere that truly cares about you!

I want to thank you all for encouraging me when I felt like giving up! I can’t believe I let one person deflate my self-esteem so greatly, but that is how it is when we are struggling to get out of bed. Sometimes one more hit is just more than we can take. You understood and I appreciate that!

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Sorry, I forgot to answer. I did think about reporting him to someone but that’s where the “he said, she said” comes in to having me wonder if it’s worth my time. I did just get a request for review to them and I’m working on a review that I’m going to leave on every site I can find.

In his defense, because he really needs one, he did not deny that I had pain. That would’ve definitely sent me over the edge. More precisely, he said something to the effect that the psoriatic disease was not causing the pain. He said that the pain was from the osteoarthritis. He said this before reading any history, seeing any x-rays, or even completing my evaluation.

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