New symptoms

[Mocking]

Some advice please

I have not had bad SLE symptoms for a few years now, and not on medication. I'm just handling my pain by rest and sometimes pain killers. On my really bad days I just stay at home. Do you think I should go back on medication as I'm feeling more symptoms.

Their has been some question of me having SLE even though I was diagnosed over 10 years ago

Hope someone can help

[panda2]

Ugg.. Sorry to hear your symptoms have returned. Do you have a Rheumatology appointment coming up? Or can you get a referral back to one? Or to a different one if the first is why there are questions over whether you actually have it?

From what I understand, SLE is a lifelong condition and you can have long periods of remission, where your ANA and symptoms can nearly normalise. But it doesn't mean it's not there. If it wasn't actually Lupus when it was first diagnosed, there certainly had to be many elements of connective tissue disease for them to say that to begin with. And those offshoots all need treatment too. Pretty much always at least Hydroxychloroquine if you can tolerate it. It seems you'd be best positioned to be in front of a Rheumatologist again.

Good luck! Panda x

[Raceworks52]

I agree with panda2 great advice. It is wonderful you have been symptom free and med free for so long best to get checked out by a professional and hopefully you can carry on symptom free I wish you all the best good luck

[Mocking in reply to Raceworks52]

Thanks for that the Rheumatologiest I seen only seen me twice and was not helpful at all. I was under Professer Hughes at guys and St Thomas hospital first was also told I had Antiphosphalipid syndrome. I was on a huge cocktail of drugs including hydroxychloroquine and warfrine.

It's all a bit scary but thanks for your advice ♥️

[panda2 in reply to Mocking]

Oh gosh...you might have had some bad luck with the second Rheumy. Can you go back to Guys? If not, it is within your rights to ask for a different Rheumatologist on the NHS. If you are nervous and things are pressing, maybe a one-off privately?

It is scary when this stuff comes back, but it's serious stuff and you can't take chances that it would progress without the proper medication to protect you. Really sorry to know it's a slog and concerning, but it is both of those things. You need some proper Rheumatological intervention. Wishing you all the strength you need to get it.

Panda x