My sister Bell Scale 0, completely bedridden, has immune deficiency and Sjögren's syndrome at the same time, so she can't take immunosuppressants, what alternatives does she have?
Hi,
@Alex,
I am too ill to share my personal experience at this time, but I did want to respond as best I can.
I am assuming that your sister has been diagnosed with immune deficiency by a Board Certified Immunologist and has been diagnosed with Sjogren's Syndrome by a Board Certified Rheumatologist.
It would be ideal if these two specialists collaborated on her treatment plan.
From what I am learning from a dual board certified Immunologist and Rheumatologist is that IVIG is the best course of action to first balance the immune system and clear antibodies.
I have been told repeatedly that there are no effective treatments for Sjogrens Syndrome (yet), so managing the disease is both a science and an art.
After IVIG, however long that lasts, a mild immune modulator, such as Plaquinel might be a good first line treatment for Sjogrens, depending on what your sister's symptoms are and what parts of her body are affected by Sjogrens syndrome. If there is nervous system involvement or organ involvement she will certainly need more aggressive intervention.
**I am not a healthcare professional, and this is not medical advice.**
I'm sharing what I've learned along the way in hopes it will give you some good questions to ask your sister's treating physicians.
Best of luck!
