Hello! Need to vent a little (plus advice on second opinion welcome!)

Hello!

I'm new here (but not new to Psoriatic Arthritis [PsA]).

When I turned 30 (April 2004) I suddenly got PsA in my hands and feet so that by the winter of that year, I could barely walk (shuffle) and I couldn't lift a pint/kettle/turn on taps + PAIN. I got a referral & diagnosis then. Meds... time... and a year or two later I was pretty symptom free and taking nothing. I knew it could/probably would come back. I felt very fortunate. Still have/had psoriasis but who cares about skin/nails when you can do buttons up without thinking about it, eh?

I've just turned 47. I got Covid (untested) in March 2020. It seemed to trigger something so by late summer my hands and feet were having a severe flare up. My hands in particular swell up - it's in a different place to years ago (now my knuckles rather than thumb joint) but such that I can't make a fist some days - so driving / changing my bedding / day to day stuff became impossible.

Thankfully I'm still able to work from home - new ergonomic mouse etc. plus I can talk at Word.

I got a referral and in December they put me on Naproxen (with Lansoprazole) while I was having tests. The consultant I saw couldn't see any particular swelling and told me I didn't have psoriasis (till I showed him).

So there have been tests and in the meantime, my GP has given me repeat prescriptions.

Now why I'm writing this... I had a call from the consultant rheumatologist today [not the one I met but another one].

The call did start with him asking how things were. Naproxen has largely taken away the pain and swelling (just some in my right hand today and only minor foot pain). I related that when I'd stopped taking it for a week before the ultrasound it had come back to much swelling/pain again and what that meant - not being able to drive, remove a pillow case, do up a belt etc.

Then (and I'm paraphrasing) he told me...

  • My blood test(s) were fine (so I'm fine)
  • My X Rays were fine (so I'm fine)
  • My Ultrasound showed some stuff - but not much (so I'm fine)
  • Reduce the Naproxen to severe days and take paracetamol
  • #mikedrop

So what do I do now? I asked him that... do I just give up normal daily life? He said he couldn't diagnose PsA from my test but I reminded him - I had told them of my history and I already have a diagnosis. I'm not pushing for any particular treatment - but should I get some?

He made me feel like he didn't believe me - like, who would make this up?

Any advice on second opinions (or just any other advice)?

Thanks for reading if you got this far.

Comments

  • Shell_H
    Shell_H Moderator Posts: 356

    Hi @Natatron - Welcome to the online community!

    I see you've been diagnosed with Psoriatric Arthritis in the past, but it died down and you were fine for a while. Then last year a Covid infection set it off again, and now, despite the fact that your symptoms are being managed with pain killers, the specialist is advising you to come off the pain killers and leaving you with no help.

    This sounds incredibly frustrating for you! It's also strange to me, as from the information we have here, Psoriatic Arthritis is not normally diagnosed using blood tests, A Rays or Ultrsounds. It's normally based on symtoms and manually looking at the affected joints. Additionally, you already have a diagnosis, so it shouldn't matter. I would most definitely look for a second opinion. I'd also go back to your GP and explain the pain you are in without the Naproxin and that you don't think you'll be able to live everyday life. Maybe your GP can refer you to a different Rheumatologist, or explain what is going on given you already have a diagnosis - do you really need to even go through this again?

    Take a look at our information on Psoriatic Arthritis - it may well help. While I understand that Covid may well have meant doctors are less likely to use a manual look at the affected joints, these are conditions which often don't show up on tests, so sometimes this is what is required. They shouldn't be basing everything on that when it's not an effective tool.

    There's also information on managing your condition there, which may well help.

    In the mean time, have a look at some of the information we have on managing pain - I'd suggest looking at heat therapy for pain a stiffness and cold for inflammation. Also have a look at some of the exercises you can do specifically for you hands and wrists. Exercise can help reduce your pain and take the strain off affected joints, as well as keeping your joints more mobile.

    Do have a look around the rest of the community - everyone is very friendly and helpful 😊

    It's lovely to meet you!

    Shell

  • Flycatcher
    Flycatcher Member Posts: 25

    Yeah, PsA doesn't show up on blood tests, mine were just to rule out rheumatoid, lupus, gout etc.

    I can only think that perhaps the idea was to cut down on NSAIDs when you're not flaring because boy does it mess up your gut!

    That would be the only thing that makes sense to me, as a temporary thing, to reduce serious side effects such as stomach ulcers.