Dear Community Members,

I hope you are doing well.

I am writting to get some information about SCLS triggers. I was diagnosed almost three years ago and have been with IVIG treatment since April 2021. 2g per kg every 3 weeks, plus steroids plus mycophelonic acid (plus  hydroxychloroqine to treat lupus) For some months, I also took methotrexate but I stopped since it caused me stomach problems.

IvIG has been life changing but I am not able to perceive additional benefits from the rest of drugs besides steroids when a minor leak starts. IvIG has been life changing but I live with many difficulties such as muscular and articular pains, diarrheas, etc. However, during the last three months I am having a rough time. Constant feeling of dizyness and weakness, stomach problems, etc, in a way that is disabling. Additionally, I have broken my left shoulder (no surgery needed for the moment).

My doctors are trying very hard but we are at a deadpoint. 

All these symptoms, coincided in time and then, became chronic with an MRI, a double CT scan with contrast, the flu and pneumococcus vaccination. Two months have passed and I am not feeling any better. 

Have any of you had a similar experience with similar triggers? 

Thank you very much in advance

AMJ,
I'm so sorry to hear about your unfortunate situation.  Because your clinical presentation is complex, and involves both SCLS and Lupus, I am going to try to arrange for you to be seen by physicians at the largest hospital in Paris, the Hôpitaux Universitaires Pitié Salpêtrière, which is also the teaching hospital of Sorbonne University's medical school, where there happen to be, and I know, experts on both SCLS and Lupus.  I will reach out to you separately.