Shrinking Lung Syndrome and Autoimmune Disease like Lupus

Posted by Machak @machak, Tue, Mar 5 1:03pm

It’s an extremely rare complication of autoimmune disease, most commonly with LUPUS, but also can be seen with Sjogren’s, RA, and others… Just diagnosed this past January and exploring what potential treatments are out there. I was put on oxygen for sleeping when the diaphragm weakness/paralysis causes the most problems. High dose steroids during the attacks seems to be the standard treatment, but not much is known about how to prevent worsening. I’ve seen case studies where rituximab was used too, but there are too few cases out there to be able to define a real treatment protocol. Anyone out there with any knowledge of this rare area?

Liked by Machak

Hi @machak it must be helpful to have a diagnosis for what is happening with your lungs.

While we wait for others to take part in this discussion, you mentioned that you were put on oxygen for sleeping. Has that been effective or helpful? What is the recommendation of your doctor? Have they recommended high dose steroids that your research has show is the standard?

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My daughter was just diagnosed with this. She has lupus. She's 14

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