The Big Mean Wolf
Last updated: August 2023
I was diagnosed in February 2000 when I was 30 years old and a 2 year old little boy.
Searching for the right treatment
My SLE took about two years to be diagnosed. While waiting, I was treated for tendonitis, lumbago...
The picture was worrying with arthritis, some skin damage, but above all, a stage 4 glomerulonephritis. The first treatment was based on corticosteroids. Very quickly, cellcept was added with it.
A year later, a second flare revealed acute pericarditis.
I was on sick leave for two and a half years and then recognized as a disabled worker.
I was able to benefit from job accommodation for 3 years before succeeding in returning to my first job.
The doctors then stopped the immunosuppressants and introduced Plaquenil, which I took for many years. My retina couldn't take it and I had to stop it.
Starting a new treatment
With the drop in corticosteroids, the pain returned, the markers of lupus being ubiquitous since the beginning of the disease.
Since this week, I have started a new immunotherapy therapeutic trial with belimumab. I have some nausea and fatigue side effects.
Are any of you taking this treatment?
I would be happy to share experiences.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?