To satisfy the ego of my rheumy and maintain a much needed report with him, I put out the cash and saw a podiatrist as he recommended. (now it wasn’t HIS recommended podiatrist) The podiatrist I saw came on the recommendation of a close friend and the reviews on him were very good. He moved to Canada 20 years ago from Ethiopia, studied abroad and is licensed in Canada. Very friendly and appears to have much experience and a friendly, patient approach. He suggested that some very minor orthotics would be helpful now and in further prevention of foot issues. BUT, he also had strong opinions about the origin of the disease and after a 20 minute examination of my feet, he said, “you don’t have arthritis except for a bit of osteo in your left big toe large joint. I see no evidence of arthritis, you should throw away all your pills and let your body do what it knows best and it will heal itself.” Go figure! He also didn’t know what enthesitis is and determined that I didn’t have PsA because I didn’t have sausage toes. (the swelling comes and goes on my toes…usually goes upon entering a dr.’s office) So what give with the ignorance about enthesitis? My brother is a retired physio and said it didn’t exist when he was trained and only heard of it from my conversations. My GP doesn’t know what it is and keeps telling me that my inflammation markers are low so the medication must be working. And now a 50 year old trained, experienced podiatrist hasn’t heard of enthesitis. While I might lay down $400 for orthotics, I am not about to gamble with going off meds on the advice of a podiatrist with a bent towards holistic medicine…I wish it were true, I’d love to be pill free but have little trust in my body to “figure it out”…I don’t think I would be walking if it weren’t for the meds. I guess the contradictions amongst the professionals will always exist…covid sure proved that! It seems to me that the medical profession lacks mandated re-education in many areas. The science of 30 years ago isn’t always the same today. (How often were we told to “trust the science?”…until it changes) Sigh, no wonder so many people are misdiagnosed and mistreated! Oh yea…he did say, “you look pretty good for a 63 year old!” (I like that kind of diagnostic approach)
Oh my - I guess ignorance comes from all levels…and he definitely stepped out of his scope of practice.
Something I’ve been rolling around in my head is how “professional” most of the medical folks I have been dealing with are - they will not do or say anything out of their scope of knowledge/practice, even when it could help us. Your podiatrist is certainly the exception ! I wouldn’t trust my rheumatology issues to a podiatrist.
Having said that, sometimes it’s darned annoying that my rheumie stays well within her scope to the point that she doesn’t address other aspects of PsA or health, or even recommend I take something up with my GP - symptoms such as eye pain or heart palpitations (figured out I was somewhat anemic at one point). Nobody asks you how you are dealing with things on a day to day basis. So many things about PsA I know now that I wish I knew earlier. My rheumie has also never talked to me about pain control…maybe I haven’t made a big deal of it either but I am really struggling right now.
FWIW, I saw a podiatrist too and he said my feet were fine, didn’t even recommend orthotics. My feet hurt, I wear shoes all the time…I guess I just have to make sure I wear good shoes. Argh.
It’s exhausting - to us already exhausted folks. One really has to be one’s own advocate but that’s hard when you don’t always know what you need !!! My worst “ignorant” recommendation came from an aged locum GP about 8 years ago that told me my aches & pains were hormonal as I approached “the change”…kinda like to have a few words with that guy now !!!
I do hope the orthotics help you…and it might not be a popular opinion but I don’t put much stock in the holistic medicine thing - sounds pretty and simple and kind of like wishful thinking. It makes me think of people who “don’t like to take anything” - to which I always think how nice it would be to not know what it’s really like to be sick.
I also saw a podiatrist the other day. I have plantar faschiitis in both feet. Ouch. I was offered 2 weeks of prednisone and an another med to take after the prednisone. I believe alot of our pain comes from enthesitis. I’ve had doctors tell me my joint looks fine on xray, but that area hurts like hell. Ive had normal markers as my body is flaring. This disease is so confusing! Like you said, we are our best advocates.
I saw a podiatrist recently who had been fully briefed about my PsA but who still didn’t understand how it traveled about a foot for example. I gave her my ‘classic education’ about it all and persuaded her to make temporary insoles not the hugely expensive permanent ones as odds were this very ‘ouch’ issue wouldn’t last too long and then I wouldn’t need that insole for long. I was right and needed a second temporary insole to sort out the issue the first one created elsewhere from relieving the issue which caused me to see her.
You must understand @Amos that PsA is rare. Truly it is. So practitioners don’t see it routinely not of the podiatry type anyway.
Your one is one of those ‘dangerous ones’ sadly. Advocating no meds and not recognising inflammation. Those types make me run out the door as fast as possible frankly.
Thanks @Poo_therapy, what a good idea, temporary insoles… Evolution Orthotics! I guess because our “world” is filled with all things PsA, I assume that the trained professionals have the greater knowledge. Reminding me that I have a rare disease was helpful…and I now feel "special!"
It never ceases to amaze me at how RA is still the lens by which many see PsA. My GP is overall an excellent health care provider but when she hears my “issues” she hears “blah, blah”… RA. It is those blinders that are on many professionals and I’m still looking for one who KNOWS the weirdness of PsA. One who gets the way it can rapidly move around the whole body flaring pain in one joint this morning and a different target later. But I also need to extend a bit of grace as many in our medical system are so over booked that they don’t have a lot of time to do research etc on the things they don’t know.
Thé psoriasis on my palms developed years after my PsA diagnosis. I am in a particularly nasty flare right now. My palms are itchy, scaly and painful, a very demoralizing situation after months of « alright ».
My dermatologist (who has prescribed Duobrii and Clobestasol lotions), defers to my rheumatologist. My rheumatologist has me on a biosimilar (Idacio) and methotrexate injections. But my hands are in a mess, and nobody seems able to deal. My markers have also been low for ages. So frustrating!
As PsA is defined as a seronegative disease inflammation markers should be largely irrelevant in assessing any patient’s disease activity or progression though. How long have you been taking both mxt and Idacio? Given your hand psoriasis have they not considered Cosentyx or Tremfya as biologics for you instead? Both developed primarily for psoriasis and both (Cosentyx especially) also excellent for PsA.
Thank you SO much for the suggestions! I will print this out and make an appointment as soon as I can. Not even close to the first time this site has helped me - knowledge is power.
Susan
The blood test such as Sed rates and all I have my doubts about. I have been in terrible pain in most joints for about a month or more. I am evening running a low grade fever. I went to my Dr for another reason last week and while there had her run all the inflammation marker blood test.
They all came back normal. She said must be the Tremfya.
My question is how can I been in such pain from obvious inflammation and also running a fever and yet have no inflammation markers??
Because PsA is classed as seronegative. I’ve no idea why your rheumy doesn’t know that either.
The body’s normal response to infection or inflammation is to produce proteins. The blood tests for inflammation all look for these proteins, one way or another. But for some reason - I’m not sure why - it is a featur of psoriatic arthritis that we don’t produce the normal proteins in response to disease-related inflammation. And because we don’t produce them, they can’t be detected in our blood.
Speaking as another 63 year old I found your post struck a chord.
I struggled for over a decade to get help. Enthesitis, which I suffered a great deal with, was generally ignored and my inflammatory markers were not considered high enough for some.
What changed? Well, my inflammatory markers got much higher, swelling became more frequent and I would photograph this to show the doctor.
But also I am certain the narrative about PsA changed, how it was being described in articles with more emphasis on enthesitis. In fact, it was only in more recent times I realised it now described my situation (I do not have psoriasis but others in the family do).
So the people you are talking about, the ones who are unaware of enthesitis, have not kept up.
Surely the whole point of our meds is to stop the swelling. This is what leads to joint damage so if your treatment started early enough this should be minimal. There should not be a lot to see. My elderly aunt who was diagnosed late, despite her psoriasis has plenty to see and it is too late to do much about it.
That’s the situation with my mom as well. She was diagnosed in her late 60’s because she specifically asked her rheumatologist about this. She has a ton of damage. I’m one of many people that the damage isn’t stopped by meds, but it certainly is slowed down
This is the kind of thing that drives me absolutely nuts! Have you thought about seeing an orthopedic foot specialist? I saw a podiatrist once and it was a crummy experience. He just wanted to sell me expensive insoles.
The foot surgeon was super helpful. He did a CT scan and MRI of my feet and I discovered I had a calcaneal fracture! In addition my imaging showed signs of bone marrow edema in my ankle. When my rheumatologist saw that, she changed my biologic and I’m feeling much better.
My first rheumatologist told be the sausage toes only happens in 30-50% of patients. That should not be a deal breaker for diagnosis. I’d be so irritated with that podiatrist. He could potentially mess someone up!
I found wearing Crocs brand shoes relieved my foot pain. The problem with PSA is that it’s not always joint pain. It can be pain where the tendons attach to the bone. I hope you feel better!
Hey Amos,
They just see the ‘A’ and align everything the same. This is very common especially when it comes to rare conditions. I have a brain issue and some automatically start talking to my wife as if I’m not even in the room or that I’m slow and would not comprehend. Or my favourite when reporting symptoms ‘Ohh, it can’t be THAT bad…’ I just love sitting in a dr’s waiting room for hours to report symptoms I’m not really having or aren’t ‘THAT bad’ as if I have nothing better to do with my time.
I think when you find a good dr, grab a hold and don’t let go, they can be a rare thing themselves. I had a really good one, he retired and I’ve been on the medical merry-go-round ever since. I’ve tried to educate some, but when the attitude is that they are ‘all-knowing’ trying to get the information through can be a painful endeavour.
Merl from the Modsupport Team
Thanks for the encouragement and good advice from many of you. I also love my crocs! I guess we can try to help those who are living in the past and are out of date regarding their medical knowledge and enthesitis. I don’t think anything in my life has been a tool to teach patience like PsA! (Well, I did have a Datsun car that comes close!)
I appreciate hearing from you (not your wife 
) Merl, as you understand quite well the many frustrating things that go along with these goofy, moody, life altering diseases. How frustrating it must be for you to be dismissed the way you describe. You might be on to a new opportunity for Ben’s Friends…“Rare Doctors”.
Yea, with some it’s like ‘Rare, herbed and lightly roasted, served on a spit’ 
P.S. I haven’t had much joy with medicos (if you can’t tell ) and I’ve just been put back on that merry-go-round of appointments again. Such ‘Fun’.
Merl from the Modsupport Team
So, I started self injections of cimzia. I must say it’s only been a week, but im hopeful. I can already feel a difference. I just wanted to say thank you to all of you. You guys and gals have helped me so much.