Drug-induced lupus in young female.

Posted by ulalume @ulalume, Oct 11, 2019

Hello!! I’m 25, white, female. I’m waiting for my rheumatology appointment so panicking and posting in forums for now!

My hair has been thinning for about two years, which now it seems it’s just stopped growing. Eyebrows and eyelashes as well. Three years ago I had a sudden rash across my upper body for a week, photosensitive, which disappeared and didn’t itch. My hands have begun swelling as well for the past year or so; I had to resize my engagement ring.

Anyway, I started taking Lamictal two months ago to control my bipolar disorder. About ten days in I suddenly became very ill: painful swollen lymph nodes, low grade fever, myalgia, a purple rash, exhaustion I’ve never felt, a sore in the back of my throat—it’s like my immune system was triggered and ran the gamut.

I went to my doc, she did a CBC that showed leukopenia and elevated macrophages, and mono test only showed past infection. ESR was a little elevated at 30. The kidney and liver tests were normal. I see a cardiologist for hypertension and tachycardia (chest pain and shortness of breath but tests showed my heart itself is fine.) My hs-CRP put me at high risk.

SO the skin rash has persisted, and I developed pompholyx on one finger. It’s photosensitive. It went up both arms, and oddly down my ankles where it looked more like folliculitis. On my arms it looks like hives but it’s improved a lot from the initial presentation. I *may* have a facial rash but tbh I’m also pale as hell so it could just be flushing.

The ANA was positive (1:160, homogenous) twice, by IFA. But the ENA panel is totally negative: except anti-histone, which is strongly positive. Granted, that was run after the initial symptoms had long ended.

So I’m kinda in limbo waiting for the rheumatologist, and I suspected DILE or a dramatic immune reaction to the Lamictal, but I’ve also read that’s: fairly rare, in older men, and usually happens after weeks or months of taking a drug. I’ve taken quite a few meds: Viibryd, Prozac, lithium, Digoxin, metoprolol, Ocella (BC), Effexor, Buspar, Wellbutrin. Never had a reaction like this. I’ve had episodes of psychosis in the past two years as well; I was diagnosed with psychotic depression before BPD with psychotic features.

So I wanted to hear from anyone who has had it or maybe knows someone who has, and maybe some input on other experiences. I’m just killing the time wondering until I see the rheum. and I just want my hair back!!!

Hi @ulalume and welcome to Connect. These symptoms must be so frightening and as a young adult, losing your hair must be so frustrating. You mentioned that you are waiting to get an appointment with a rheumatologist. Have you been able to get in yet?

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@ulalume Welcome to Connect. We’re a community of patients who share experiences, knowledge, and support to help each other through diagnosis and treatment. None of us are doctors so we can’t diagnose and treat, just support and guide. I would suggest that you start a notebook with a timeline of all that’s been going on so you can be clear when talking with the rheumatologist. What did your primary care doctors say about all these symptoms you’ve had. Are these why she referred you to a rheumatologist?

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