Update after frustrating appointment a month ago.

[Yellow5]

Thank you all for your encouragement after my frustrating appointment and subsequent phone call from the registrar rheumatologist about a month ago.

Since that post I’ve had worsening joint pain and swelling so contacted the rheumatology nurse and GP for advice. Well I’m back on the hydroxychloroquine AND they’d like to see me next Friday- 2 months earlier than they’d previously said! I’m so grateful to my wonderful GP who, I found out from the nurse, had also contacted the department herself about her concerns!

Does seem rather odd though - the nurse she was surprised I’d been taken off the meds as there was nothing in my notes (that she could see) referring to the phone call the dr made to me advising I stopped them!

[eekt]

That's great news you're being seen sooner Yellow5! The registrar you saw last time was obviously struggling with his knowledge base....take Table 5 from the BSR Guideline with your symptoms highlighted (I think pericarditis, joint and muscle pain, Malar rash, photosensitivity, hair loss all feature) and ask the rheumy if he/she can count to four 😋 😎 😳...4 from 11 criteria are SLE, if just one of the immunology bloods is positive.

Strange things happen to medical notes sometimes, especially if they contain a whoopsy!

All the very best for your appt, Fri 5th or 12th? xxx

[Yellow5 in reply to eekt]

Thank you so much - I’ll definitely take your advice. It’s Friday 12th. X

[eekt in reply to Yellow5]

'Happy to help'! This forum is a lifeline! Keep us posted! xxx

[Yellow5 in reply to eekt]

It really is! Keeps me sane! Will do xx

[Yellow5]

I just wanted to update you - I saw the rheumatology consultant last week - I do wonder what my ⭐️ GP wrote in her letter to the consultant! She apologised for the appointment I had with the registrar and said that she’d put a note on my file that I’d only see her in future! 🤞🏻

As I’ve responded positively to the hydroxychloriquine and my symptoms she’s suggesting it is lupus. She’s also referring me to a dermatologist for my rash.

I’ve also started phased return to work, I usually work 3 hours/day and over the past three weeks I'm up to 2 ½ hrs /day. It’s going well, yes I’m tired and sleep for a couple of hours in the afternoon but it’s good to be back and I hope I’ll slowly be able to do more and sleep less.

I’m just hoping that soon the conditions set by the Occ health dr for my return will be implemented as I feel slightly exposed to a possible flare.

Take care all. Xx