Rheumatologist rant

General
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I have a bit of a rant here. I saw my rheumatologist this past week. Right away, I as a little bit confused because she mentioned that my husband had messaged her through the portal. He DOES see her as well, but he’s been doing fine and had no reason to message her, and he didn’t. Then she mentions something about my having fibromyalgia, and basically saying that’s why I’m on gabapentin. Okay first off, that’s backwards thinking. Taking gabapentin doesn’t mean that I have fibromyalgia. In fact, it means that I was put on it for awful neuropathy in my feet. I don’t have fibromyalgia. I have bad disease control. Which I’ve been telling her, and she’s been saying that if the Humira/methotrexate combination is working well enough, she’s hesitant to change it. It’s not working well enough, and even the injected mtx has been making me feel progressively worse.

So we made some med changes. Off the methotrexate, and on to plaquenil. If the skin condition that I’ve had a few flare ups on my hands is lupus, or possibly dermamyositis, it will help. And then she requested that Humira be upped to weekly. Fine.

I also pointed out that I have one definite trigger finger and two more that are starting. If this isn’t an indication of poor disease control, I don’t know what is. Yet she’s now tossed out the diagnosis of fibromyalgia which we have NEVER previously discussed but she claims that we have.

Then last night, I had an interesting conversation with a few people at Temple, who either see or have seen this rheumatologist. Apparently she’s tossing out fibromyalgia as a diagnosis left and right, where it’s not appropriate. One person is having hip pain, and a clean x-ray. How does that translate to fibromyalgia???

I’ll be seeing her in two months because of the med changes. I’m going to email before then and let her know that this diagnosis absolutely needs to be removed, especially if I am considering going to a new doctor. I will not have this diagnosis put on me.

I do understand that fibromyalgia can and does co-occur with psoriatic arthritis. But that’s not what we’re dealing with.

Oh, and when I asked her about the results of the skin biopsy and showed her pictures, she said that lupus is 100% ruled out because I am not positive for lupus markers. Umm, what? I’ve actually had this talk with my previous rheumy (who retired) and while she said it’s extremely uncommon, it’s not impossible.

What is going on here?

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Well isn’t that maddening and certainly leaves you in a state of distrust of her. My go to is to blame it on climate change or a full moon causing irrational rheumy activity. I think getting off Methotrexate is a good thing. It was certainly bringing me down and creating some of the same symptoms as PsA. I hope the plaquenil works for you. Hoe long does it take to be effective?

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I don’t think it’s particularly fast. It was actually my first dmard fifteen years ago. I’ve been off it for 8 years, i think.

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That’s an excellent way to put it

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Hey Stoney,
Merl from modsupport here. I think with some (I hesitate to say many) Dr/specialists like to make people fit into ‘boxes’, fibro can have such a wide range of symptoms it can sometimes become a default position. The box is so BIG everything can fit.

I have neurological issues and I’ve found if I can’t get a clear diagnosis of an obvious issue, everything gets labelled ‘neurological’ ie “But you have a history of…”. When they can’t fit it into a box, they come out with pseudo diagnosis like ‘idiopathic in nature’, there is no cause. It can be so frustrating, we don’t go to Dr’s because we like them. I’ve seen enough to last me 3 lifetimes. I now try to avoid them like the plague, but there are times we need them, it’s just that we need them to understand. We have to manage it all for ourselves, in our own individual way because we know what works (and what doesn’t) for us. I had a Dr I had trained really well. He retired and the next one wanted to ‘reinvent the wheel’, putting me through all of those same scans, tests and referrals. He didn’t last very long. I know me and my situation better than any dr, I know what I need, just let me manage my way.

I wish you the best of luck
Merl from Modsupport Team

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You do know that humira once a week appears to only help RA not PsA don’t you? The USA seems to be the only country in my view which seems to use it this way for PsA. And I’d question why frankly. Please watch your blood tests results carefully consequently.

Plaquenil isn’t great for PsA since it loves to flare psoriasis. I wouldn’t touch it due to that (given my psoraisis had been dormant for 30 years as well) and the consequent eye issues which frankly scared me silly since I only focus out of one eye. However it might obviously might help the skin issues you have. But I’d really rather a dermatologist told me that instead or as well.

If that was the only med change my rheumy could come up with this long into the PsA game with your level of increased disease activity, I’d also question why. Why no moving to interleukin ones like Cosentyx, Talz and Stelera, all known to do better for PsA than anti-TFNa ones for loads of us? More so since they appear to target it better on the research. As you know Cosentyx has certainly arrested much of my PsA now.

And like you I’d be livid to have another diagnosis dumped on me like fibro when in all seriousness your issue appears to be neuropathy in your feet with no other symptoms of actual fibro either.

All of this plus the tone of your consultation would be telling me to sack this rheumy and find another. I don’t need to like my consultants (thankfully I really do like my present rheumy) but I do need to be sure of their expertise and trust their expertise. This appt didn’t have a lot of expertise in treating your increasing disease activity when it’s basically treating you with a dosage of humira not recommended for treating PsA in other countries at all. And for good reason.

It’s horrible having an appt like that and indeed being treated like that too. I’d start researching for another rheumy now.

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Ugh, yes, you deal with the same type of problem from a different angle. This one is new within the last few years, replacing the retired one. Overall I’ve been okay. I think I need to discuss this with her next time. It’s fully possible that she was having a rough day, because she threw this out and that my husband had messaged her through the portal with a question (he hadn’t). My big concern is whether she put this in her notes. THAT would need to be removed.

The issue is that I’m reliant on a rheumy for treatment, and there’s just not enough. I only see her a few times a year (ideally) so I don’t really need to stay in my immediate area. That may be the solution ultimately, if she isn’t willing to have a discussion with me.

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I questioned the use of a second tnf inhibitor in the first place. I’ve only been on it for less than two years, and it’s fizzling out. Plaquenil doesn’t worry me since I’ve been on it before, and had no side effects. I hate the increased eye monitoring, but whatever. It doesn’t flare psoriasis because I have so little to begin with.

You know what? I may do both. See this one again and see how things go, and work on finding a new one. I can always opt to stay with this one, but it’s good to have a backup plan in place, and maybe even an appointment as a second opinion.

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Second opinion at the very least sounds like an excellent plan.

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I made the first appointment for early March for a rheumatologist from a completely different medical group.

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@Stoney , In Canada, we are so short of specialists in all medical fields that I think even the best are worn out and gasping for air. The patient load is far beyond the ability to use that 4 letter word, “CARE” and efficiency seems to rule over effectiveness. With the shortage, we have to play games to not upset them or risk losing them all together. My second rheumy was brand new out of school, inexperienced and in my opinion a bit to young to be set out on her own. She was taking forever to get me from dmards to biologics and I was quickly going down hill. The advantage was that she would out live me and I might have had one rheumy for life. My current rheumy is at the other extreme, in his 70’s…very experienced and has that ability to see with his hands as he exams. But I have only seen him in person twice in over 3 years. There have been a few phone calls in between but the actual patient care is poor. I assume that he has made a choice to see a large volume of patients just enough to keep them going rather than fewer patients handled with excellence. The fact that I was fast tracked to Rinvoq seemed to have put me on the shelf as there is an attitude of, “You’ve peaked, this is as good as it gets, I have nothing more to offer”. Unfortunately, since I questioned some of his assumptions about me and how mad he was that I didn’t see HIS physio and HIS foot specialist and HIS sleep specialist, I’m now a bad patient. (my GP told me that there is a boys club of specialists that all feed each other) It is a sad state that we have to coddle to a specialist out of fear that we might say something wrong or think twice about choosing a different path because like merl says…nobody knows me like ME. @stoney, your back-up plan sounds good BUT, with our system and the specialist mentality, if one found out that you were seeing someone else at the same time, they would flip out. You would be guilty of “Rheumy Adultery”. And risk being dumped by both. But that’s our system.

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That’s exactly why I’m going for a second opinion to a completely different medical group. But that’s definitely something to consider

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That really breaks my heart. Our NHS system is struggling and parts of it are broken but the ‘consultants’ clubs’ are thankfully not that evident these days. They don’t like getting complaints against them, the NHS Trusts they work for (since full treatment of chronic conditions like PsA cannot be treated on private medical insurance plans which also means they don’t have ‘special’ physios or anything else unless attached to the dept) don’t like complaints about them either and patients are empowered much more now to complain about shoddy treatment and any lack of care. Do none of them have a wish to provide excellent care these days? Granted there seems to be less in the UK that do day on day but there’s certainly enough still sincere enough to wish to provide coherent care.

We are tricky patients we don’t respond like the researchers think we will to varying meds, each person’s immune storm acts so differently too so the variables keep changing. But that should be the sort of challenge any decent rheumy would love to take on. Surely?

Once settled on meds we only see our rheumy’s maybe once a year and possibly have a phone call at the 6 month mark. If we’re not settled on meds we tend to see them every three months. Much of my present care is done by email these days. I’m fine with that as presently balls are being kept up in the air. But if one drops I get seen. Or rather I ensure I’m seen. But I am a very assertive patient when the need arises. And I call out b*st regularly.

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@Stoney, I’m sorry to hear how things are going with the current Rheumy, not real encouraging. I think your plan is excellent though, what I would be doing too. Though it is scary to get moved onto a different class of biologic, it does sound like it might be time to try.

And yes, I’ve had both rheumys and have a friend with a GP who throws out fibro like it’s the common cold. Swelling and pain in finger joint (visible!) and shoulder joints, fibro! Avoid them like the plague. Not only is it often still a stigmatising diagnosis, it is extremely unhelpful if it is untrue and delays diagnosis (and therefore treatment) of the actual condition.

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