How to treat?

[DanaL13]

Taking anything with quil at the end triggers a G6PD deficiency in my body that leads to hemolytic anemia. I'm dealing with Lupus without any treatment. Although I've had symptoms of Lupus throughout my life, it wasn't until I was diagnosed with APS in 2014 that doctors made the link. Before that, I was just treated for depression and an eating disorder which I argued with doctors for years that I did not have. I went 20 years without effective treatment I honestly did not know why I would have dramatic weight loss through the years despite eating, combined with Raynaud's, dry eyes, skin ulcerations, hair loss, severe fatigue and joint pain. I'm not being treated for this now despite consistent flares. I know my immune system's intolerance to meds plays a role, but shouldn't doctors at least try to find something that can help?

[lupus-support1 Administrator]

I am very sorry to read your story and your story is not uncommon. You need a referral to see a lupus specialist - not just a rheumatologist because they may never have treated a patient with lupus.

Are you in the UK? If so, ask your GP to refer you to see Dr David D'Cruz, Director of the Lupus Clinic at St Thomas' Hospital, London.

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

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I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.