Patient Comments: Weber-Christian Disease - Diagnosis

Question:

How were you diagnosed with Weber-Christian disease? Submit Your Comment

Comment from: Roxann, 45-54 Female (Patient) Published: June 11

It was misdiagnosed as erythema nodosum for years since I was 18 years old. I have been a medical assistant for 28 years and ended up working for an amazing rheumatologist, and friend. I struggled with fevers and red bumps for years. I noticed tanning beds (extreme heat) made them worse. The bumps were usually lower legs only. One day I could barely move my hands and the nodules were severe. I showed my doctor and she told me I had Weber-Christian disease and said I needed a biopsy of them. Sure enough she was right. I said I was always told they were erythema nodosum nodules. She said no, those are more superficial. Mine were deeper and harder. I tried Plaquenil for a while. No help. I tried sulfasalazine and it's been suppressing them for 2 years. Now they are coming back. So I am on a regimen of sulfasalazine, Vimovo, leflunomide, and Rayos until leflunomide kicks in; it takes 2 months to go into effect. In the meantime I get Medrol dose packs for big flares but this year they have traveled up my back and back of arms. No fevers. I agree each person is different in symptoms. Mine are: fatigue, shortness of breath, bloating, abnormal bowels, and I now have spinal arthritis as well as on my hands and feet.

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