Preparation for Appointment With Rheumatologist

General
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My appointment with my new Rheumatologist has been rescheduled for Monday morning. But I’m not going to leave anything to chance. : ) I will be armed with a color-coded graphic of my hot spots and their functional implications, photographs of skin and joint anomalies, and a list diagnoses and past treatments. The pervasive pain, fever and fatigue have left me at the end of my rope, so I hope that my preparation will support a relatively smooth path to diagnosis and treatment.

My PCP thinks I will require injections in my shoulders and back. How terrified should I be about this? (Never loved needles).

Take care.

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Good luck Pixie! I hope it goes well, you sound very well prepared.

Do not worry about the possible injections. Focus on the amazing relief steroid injections can bring! They probably won’t be much fun, but it’s a moment, that’s all … whereas the relief from pain and stiffness can last quite a while.

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Good luck on Monday! You sound really well prepared! I never had injections so can’t help you there…

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Despite my preparation and hopes for a productive appointment with the new Rheumatologist, the experience was a bust. It began with a disorganized interchange with a resident who, instead of asking focusing on the reason for my appointment, perused my chart. (Shouldn’t the referral letter and chart been reviewed prior to meeting with the patient?) This created a situation that made it difficult to convey important information such as pattern of onset, medications, previous diagnoses (including psoriasis).

When the Rheumatologist came along, he looked at my toes and said, “That might very well be fungus.” (They had been slightly injured by walking with ill-fitting shoes–the psoriasis nail took off after that). In terms of my painful joints, he said, “It must be osteoarthritis.” So, I asked, “Wouldn’t it be unusual for > 10 joints to wear out at exactly the same time?” He said, “Hmmm,” He glossed over my ever increasing CRP results explaining that chooses to ignore a history of inflammation and instead prefers to consider common conditions first. He noted I have difficulty walking and suggested I get to the pool “right away.”

So, I said, “I’m concerned that a >25 year history of IBD, a medical dermatologist’s diagnosis of psoriasis, and a diagnosis of psoriatic arthritis would be excluded from the evidence considered in my case.” He said, "I won’t let this go on indefinitely–if necessary, we’ll move beyond that. I confirmed with him that the diagnostic/treatment process could span 6-9 months.This is downright depressing.

He has ordered an x-ray and I suppose I’ll be floating at the pool (if I can actually get into it). I’m on pain medications–this was supposed to be short-term.

I feel angry and humiliated (fungus?). I see my PCP tomorrow and he will ask about my appointment. I am concerned that sharing my true feelings about this experience will result in a label of “difficult patient.” What to say? Maybe I should request that he prepare the requisition for HLA-B27? Since my nails are in rough shape, maybe I should see the Derm who can add his impressions to the file? I never imagined having to starting over at this stage.

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You did all the work for them and still they couldn’t do their job? Wtf…

I would say be honest to your PCP and also add your fear of being labeled a difficult patient… if he’s a good doctor he’ll see your side… and maybe even be able to help you… but honestly I’m starting to lose faith in all doctors…

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Hi Cynthia. Yes, WTF is right. If early PsA cannot be detected on x-rays and that’s the only thing this Rheumatologist is offering, I don’t think I can go through that again. After close to 30 years on the front line of physician hemming and hawing, my faith in doctors is pretty much gone.

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Pixie, I’m sorry, that sounds like a really unacceptable experience in this day and age. Can you get to another Rheumy for a different opinion? The response you got still happens, too often (not dissimilar to the one I got initially :roll_eyes:), but I still don’t think it’s acceptable - and there are certainly many members who do describe much more proactive Rheumies. I can understand how discouraging it is, gentle hugs :hugs:

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PS. Be a difficult patient if you need to. Whilst it really goes against the grain for most of us, the collective experience here is that it generally works, and in some situations can be downright necessary.

Just ask @Seenie about not being the squeaky wheel and accepting “osteoarthritis”, “exercise more”, “lose a bit of weight”

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Hi Pixie, do not despair! I can see why you might feel like it, but don’t do that please. You will get there I am sure. But oh my, what a long and winding road it can be.

My PsA diagnosis was clinched by one ‘funky’ toenail. It irks me that other rheumys have since been blind to the psoriatic nature of it, seeing as it was so useful and I don’t think it looks much different now. The thought goes through my head ‘what if I’d seen these people back then, rather than that doctor?’ She took a nail sample and sent it off for a biopsy to exclude fungus and indeed fungus was excluded. You could ask for that to be done. I am not sure how useful a test for HLA B27 would be as it is common enough in the general / healthy population.

Do you have any swollen joints? I spent a couple of years hobbling around on an increasingly painful and swollen knee and was sent to an orthopaedic consultant. I had slight OA in that knee, behind the patella or something as I recall, not in the big joint, if that makes any sense. The consultant thought that had to be responsible for the swelling, flamboyant as it was, and noted ‘no obvious red flags’.

When the other knee joined in and blood inflammation levels were high, I pretty much knew I had inflammatory arthritis. But still had to see the orthopaedic guy because apparently that was the ‘polite’ way to proceed rather than jumping straight to rheumatology! To his credit, his ears pricked up immediately I mentioned feeling ‘particularly unwell’ and he referred me to rheumatology straight away.

What I’m saying here is that getting a diagnosis of PsA is rarely(?) straightforward. When I look back, there was a lot of chance involved. Perseverance - being a squeaky door - greatly increases the likelihood of those lucky breaks.

This strikes me as very promising. He was being cautious, which he should be to a certain extent, but that timescale could well change in the blink of an eye, he does not have to keep to it. He may, possibly, be re-considering already. Definitely go back to dermatology, definitely press for a second opinion if you want to, whatever you can do, do it and something will give.

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I wouoldn’t say I’m a ‘difficult’ patient, but I am utterly persistent. I follow up all initial appointments with a letter or email, which then goes through the bits of the appointment I’m ‘confused’ about which translates to the bits of the appointment which ‘didn’t make any rational sense then but now need to make more sense’. If I were in your shoes, that’s what I’d do. I’d ask why didn’t he or she want to exclue nail fungus, why the ignoring of the blood test results etc etc. Putting it in an email or letter then means it gets added to your file so can always be read. And it’s more an durable record of your issues. Lots of work I know but usually worth it.

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I might have misunderstood, but I think the particularly discouraging part was that Pixie already had a pretty clear PsA diagnosis, by her initial Rheumy - and a set of meds to treat both that and IBD, and now this new Rheumy seems like he somehow wants to roll it back…

If I understood that right, I wouldn’t be advocating patience.

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Over to @Pixie, but I believe it is the family doctor who thinks she has PsA. Perhaps this varies from country to country, but here in the UK, GP’s preliminary diagnoses don’t carry much weight on their own.

Was wondering about the Toronto Clinic @Pixie, as you’re in Canada. Might be worth a shot?

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LOL that @Jen75 sure knows which of my many buttons to push! :stuck_out_tongue_winking_eye:

Persevere :persevere: Pixie. I am SO sorry that it has gone this way for you. Do not let this put you off your quest for a diagnosis, whether that diagnosis is PsA or something else. This is no time to give in or give up. But I’ve got my money on PsA. BTW, how do you stack up using this set of criteria?

PsA is a notoriously slippery fish to catch, and even when the fish is caught a rheumatologist can get the severity of the disease wrong. My skin, joint, and general health complaints were blown off for between 15 and 20 years. Finally, it was damage in my feet which clinched the diagnosis. After that, the rheumatologist insisted that my disease was mild and warranted only conservative treatment. That’s when big trouble started, After a firm “talking to” right here from, mostly, @tntlamb, I went to the Toronto Clinic, and they diagnosed me as “severe disease and a lot of damage”. If only I’d persisted and taken control much sooner. If only I’d found this group when I was tired aching & itching all over, and I had toe-and-fingernail “fungus”! If I’d found this forum back then, I might have persisted and got a correct diagnosis before the really bad stuff happened. And believe me, this disease has reorganized my life.

Your ace in the hole is that your GP thinks you have PsA. When you see him/her, please make the focus on how best to proceed, bearing in mind that the best prognosis comes from early diagnosis and aggressive treatment. Is this perhaps the time to seek a second opinion, so that if it is PsA, you get a diagnosis sooner rather than later, and you can start treatment of some sort?

Sybil’s idea of looking into going to the Toronto clinic (one of the top clinics in the world) is a good idea except for one problem: you need a diagnosis of PsA from a rheumatologist to be accepted there. Once you have that, getting input from them is very feasible. (Long story, but you don’t need to involve your provincial health insurance to go there.)

I’d love to know why doctors are so very reluctant to say “Yes, I think we’re looking at PsA, lets get you started on some treatment see how that goes.” Is there some secret penalty system for making that diagnosis? Do they get facebook shamed if they make a diagnosis that they later revise when new evidence arises?

Did your family history come into the conversation?

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I am very fortunate in both my primary doc and in my rheumatologist. Prior to being diagnosed, I had dumped my previous primary doc because she was such a wimp. Whatever I suggested she was fine with: I wanted a little pushback from a position of expertise. A lot of people think the world of her, because she is so “nice,” as if that matters. If I wanna make a friend, I’ll join a bridge club or something. My new primary is a little Greek guy with limited social skills but with a sense of humor. And he’s razorsharp smart, which is what really matters after all. We thrash things out, and if there’s a tussle, he doesn’t mind at all, so he’s perfect for me. He would probably bulldoze some patients, and I know my sister dropped him being a “know-it-all,” but I kind of LIKE having a doc who knows it all. Most importantly, faced with an issue, he’ll make a plan and implement it. He advocates for his patents, so that they will get what he thinks they need.

My rheumatologist is my GP’s wife. He referred me to her (because “she’s the best”!). It works out great. Several times one of them has said, “We were talking about you last night, and…” No chance of my doctors not communicating! She’s smart too, and willing to be pushy on my behalf. When it was determined early on that MtX alone was not going to work as my only med, she shoved a few bureaucrats around and got me the Enbrel she thought I needed. I understand many have to wait for the best practices types to make up their goddam so-called minds before they can get what they need. I’m too impatient for that, and I want a doc who feels the same.

Doctors are well paid to do their work. If they don’t do it, dump 'em.

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Agree completely. I’m also very fortunate that I have a brilliant GP who referred me immediately and a fantastic consultant rheumatologist who is Head of Rheumatology and quickly diagnosed PsA and started aggressive treatment and has jumped through hoops for me. I’m all for pushing for better treatment if necessary! Our bodies our lives!

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Hi everyone. My sincere thanks for your replies. I’ll do a quick post now and then respond when I return from my appointment with the PCP.

My second Rheumatologist diagnosed me with PsA and added Otezla to my treatment of Methotrexate and Simponi.

In terms of how I align with the diagnostic criteria for PsA:

  1. I have an extensive family history of the disease going back to my material great-grandmother;

  2. Some of my toenails repeatedly lift from the nail bed;

  3. I have had flakes around the hairline, in my ears and on one elbow; (*Dermatologist has said he cannot exclude psoriasis);

  4. I develop tiny, itchy clusters of blisters in between my fingers;

  5. One of my toes is curling; and I’ve had a 30 year history of crippling arthritis that has left me hospitalized and in a wheel chair;

  6. My Othor has diagnosed me with enthesitis; and

  7. The incision from my hip replacement surgery became severely inflamed a few days post-op.

I don’t think I’ve experienced sausage fingers and I have no knowledge of past radiology findings.

My concern about the Rheum is that he offered an x-ray of the spine; he did no physical exam; he said that his approach is to exclude anything pertaining to an inflammatory history from the diagnostic process (how can you exclude evidence without first considering it?); there is plan–and no follow-up appointment. In addition, he had not reviewed my file, did not speak to me and did inquire as to the current state of affairs. (I a suffering inverse psoriasis at the moment, am experiencing fevers and my CRP is climbing). (Truly, I could go on). I have taken time to reflect on this experience and am unable to find the positive. My husband attended the appointment with me–he is horrified.

Off to the PCP. Thanks again, everyone.

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I associate fevers with severe flare-ups of PsA. Could be other causes of course, but when PsA hit the roof I had constant low-grade fevers and uncontrollable shivering. Definitely emphasise that one to your PCP.

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Well, I really can complete understand you’d be horrified with that - particularly that you already had a PsA diagnosis, as well as a pretty significant history. Is the Simponi and MTX keeping your IBD at bay? Have you talked to your gastro about a switch? Some members here who have had more severe psoriasis actually got a quicker response from their Dermatologists (some Rheumys can be painfully conservative). Sometimes getting it done, is more important than how it gets done. If you can get yourself stable again, then maybe you can look for a different Rheumy?

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So Pixie, I’ve missed a memo somewhere along the way. You already had one rheum diagnose PsA? Where did that all end up?

Your comment about the derm not being able to exclude psoriasis, why have you not had a biopsy? My sister had the same waffling from a dermatologist: “well maybe, maybe not, if it gets worse we’ll do a biopsy”. Then the derm said she didn’t have enough skin involvement to do a biopsy. Sister went to another derm and explained to him (same as she had to the first) why knowing whether she has Ps or not is important to to her. Derm said “got it, we’ll do a biopsy”, to which sister said she didn’t think she had enough to do a biopsy. He said she had enough skin patches to do a hundred biopsies, and he did one. Result: positive. You might try pushing the dermatologist for a definitive diagnosis of you skin flakes.

In a sense, your rheumatologist is right about ignoring CRP history. The CASPAR criteria say nothing about inflammatory markers, because 50% of us have markers in the normal range. But high and rising markers do indicate that there’s an inflammatory process going on.

Looking forward to hearing about your PCP appointment.

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There’s little correlation, as I understand it, between the severity (even the presence) of psoriasis in the narrow sense and PsA. I have had plaque psoriasis for decades, but it has been very minor and not a concern to me at all. (I remember once a nephew asked me, “Why did you paint your elbows white?” His mother was mortified; I thought it was hilarious. I told him it was for safety reasons, which baffled him but good.)

My GP says autoimmune diseases are the most baffling problems he has to deal with, and that the the terms used to discuss them are often more descriptive than definitive. This can be pretty frustrating, since as a patient we’d like to know what exactly we have and what therefore exactly is best done about it. Actually, medicine is far more an imprecise crapshoot than we’d like to think. The experts have no idea why certain meds do what they do, for example, why they work for some but not for others, and so on. Nothing in this world is more overrated than science, I think, and that is certainly the case in the treatment of disease.Most medical “knowledge” is mere agreed-upon guesses.