Rant - Chicken? Egg? Rheumatologist(S)?

General
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On my second rheumatologist post diagnosis (after a few others looking for a diagnosis). He is 5 hours away which makes appointments hard, so many are telephone appointments. Fortunately, one has started practice about half an hour away but the waiting list is long.

FWIW, I saw the diagnosing rheumie for 3 years and have only been with this new one for just over a years, seen him in person once.

As is typical, my diagnosis took about 8 years, during which I was “diagnosed” with suspected MS, lupus light (?), fibromyalgia, and “some sort of inflammatory joint disease” - that one just before COVID and I couldn’t visit again in person, then I moved.

FWIW, I am currently on Rinvoq - after methotrexate, cosentyx, humira, and taltz. I haven’t really found anything that works 100% and at this point don’t expect to. Rinvoq helps and I do have more energy but I am not pain free.

Anyway, telephone appointment the other day and the fibro came up. I didn’t think that was still on my diagnosis list, so I asked him about it. He’s now thinking my issues are fibro and not sure I should be on “such a strong medicine as Rinvoq”. Now, I’ve read about others have this sort of thing happen and here I am.

My previous rheumie who diagnosed me asked me what I thought I had and I said either seronegative RA (I have pretty symmetrical symptoms) or PsA. She said “you definitely have PsA”. I dunno, that sounded pretty definitive, guess I should have asked more questions (she quit and went off to teach so I can’t ask).

Soooooooo…I have also read how people have both.

Geez, I feel like I’m trying hard to have PsA, it’s just that I have so many of the symptoms - scalp psoriasis in my teens, small patch on my elbow when untreated. I have rib pain/costochondritis, achilles heel and calf pain, hand and wrist pain, jaw, neck, most peripheral joints on a bad day, right SI joint, fatigue…sure I’m missing something. However, I don’t swell much. I also have a history of ‘sprained’ or ‘torn’ tendons that miraculously heal in a week or so. I use wrist braces to drive, cycle, lift weights, and to sleep in. I have little finger splint to stop them curling.

Maybe I have both PsA & fibro ? Anyone have both? Thoughts?

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I usually love a good mystery…but not when it’s my own body! I don’t see why you couldn’t have both PsA and Fibro. But I would suspect that if the PsA was well under control, other things might also clear up or be reduced. I’m seronegative every time since 2019. My newish rheumy saw my sudden psoriasis flare and was then convinced about my PsA. I also have very little swelling but very painful joints. And I can relate to tennis elbow mysteriously coming and going…and tennis knee, tennis foot, tennis toes and fingers. (professional terminology) At least you are on biologics while the experts noodle around. I haven’t had any real remission so I don’t know what it is and haven’t had much more than 60% effectiveness due to meds of any sort and that was likely coincidental and short lived. Perhaps many of us are expecting more than we are going to get but hope on…there are some stories out there of very good results from biologics. Watch for it…you may have invited an “ARC exam” pep talk! :wink: Thanks for checking in…we all appreciate it.

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When a consultant throws in a fibro diagnosis alongside all of those very clear PsA symptoms you have, it’s a true clue the rheumy has no idea about PsA, how bad it can be and that it can indeed be very symetrical (fibro isn’t) etc etc. I’d tell him to put that diagnosis in the trash can because fibro can also be diagnosed properly but also isn’t being done so now.

Every single symptom you are describing is a classic PsA symptom and not a fibro one. Especially all the tendon ones blowing up and calming down quite rapidly. PsA simply adores messing with tendons and often for many patients that’s a far bigger issue than any joint issues. It certainly is for me.

The stand out fibro symptoms which are different to PsA are:

  • oversensitivity to touch, light, sounds or smells – even a slight touch may seem painful. For example stubbing your toe (if it then has no PsA symtoms) will literally make you want to cry uncontrollably.
  • feeling stiff, especially when you wake up which it gets worse when you move - whereas when PsA patients move in the morning slowly and painfully things then loosen up

You can of course have both fibro and PsA. So why would you rheumy try and decide you have fibro INSTEAD of PsA. That’s completely bonkers and I’d tell him that in no uncertain terms. Explain that it’s an illogical medical conclusion to come to given the extent of your PsA symptoms.

You haven’t tried a lot of biologics yet to get you to a more optimum place. How come you didn’t try Cosentyx before or after Talz which is the universal protocol? Where was your enbrel before or after humira? How come they didn’t try Cimzia or Simponi before going to Rinvoq? And then what about Tremfya, or Bimzelx?

Hope this helps.

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It’s a ‘PsARC’ exam :rofl:

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It’s so rare around here I forgot how to spell it!:+1:

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Something I didn’t mention that @Poo_therapy alluded to is Enthesitis. I can’t figure out why rhemy’s and dr’s rarely talk about this reality with PsA. I have come to believe that Enthesitis is my biggest pain issue. As soon as I take prednisone or to much less degree, Celebrex, those “hot spots” are greatly reduced, I sleep better, move better and the morning stiffness is reduced. If only I could get an autopsy before I die, they would say, “oh of course he was in pain, look at all those damaged connecting points.” It would be fun to show up at a lab with a requisition for an autopsy…the wait time might be appreciated!

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It’s a big deal for most PsA patients. It’s one of PsA’s defining symptoms too. PsA is classed as a systemic connective tissue disease too.

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Thanks for the input - always appreciated. :grinning: One gets kind of lost in a non PsA world where folks don’t understand this ain’t your normal arthritis.

FWIW, my rheumie in Burnaby is new, as in newly a rheumatologist, so I think that is a factor. But - good news - we have a couple of rheumies setting up shop in the Okanagon so I might only have to travel like 10 minutes to get to one if I get on - supposedly the wait list is only 1-2 months and the rheumie is preferentially taking patients from our city. Of course, fingers crossed this one is good.

PRD - Psoriatic Rheumatic Disease. This needs to be the new name. Just ordered some new Oval 8 rings - my middle finger keeps locking, the custom one I had no longer prevents that (less swelling ? I guess that’s good). Boutinerre’s deformity (my little fingers) and this potential Swan neck are also PsA hallmarks. Must be just more tendon stuff ?

Hurt my ankle a few months, wore a boot, had bone edema in my foot (posted about that) - my current rheumie figured it was mechanical not PsA. The celebrex really did help that but, like many of us, I get wicked gastritis so I can only get away with celebrex once in long while, also bloats me up. I am on pantaprazole, have tried to get off it and just can’t.

Poo - I don’t really have an answer about the different biologics other than my former rheumie basically started with “do you want to take a pill, injection, or infusion ?” and then it was you can do A or B as she held up the examples of different meds when the first stopped working as she always said she didn’t know what one would work for me, the science wasn’t there yet. Such a crap shoot - I did try Otezla as well for 3 (long) months, sick all the way through - not a very scientific way of doing things I guess.

I will say though that I am quite active on the Rinvoq so it must be doing something other than just helping fatigue, I’m sure I’d be way worse off without it, I just work through the pain (and exercise does help). Sometimes I think I just wipe those days from my memory - the ones where you just don’t wanna get up, spend half the night in a recliner because the bed hurts or when just doing some stretches is all the movement you can do.

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