lymphocytic inflammation diet & treatment advice.

Posted by pchin @pchin, 8 hours ago

I was diagnosed with neurosarcoidosis in 2023 and was in remission for about a year after my first steroid treatment.

I'm now in a severe flare-up. My recent MRI showed new, widespread inflammation on my brain and cranial nerves, which is causing new symptoms like dizziness, more frequent headaches, and trouble with my eye movement (looking up and down).
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My doctors just did a full workup (including a spinal tap) and confirmed this is a sarcoid flare and have ruled out infection or cancer.

My Current Treatment:
I just finished 5 days of IV Solu-Medrol and am now on 40mg of oral prednisone daily. I am also on Methotrexate 10mg weekly.

I'm feeling pretty overwhelmed and am looking for advice on two main things:

DIET: The steroid side effects are tough. What foods or diet tips helped you the most with managing the water retention, blood sugar spikes, and appetite from high-dose prednisone? (I am South Indian, so any low-salt, low-sugar Indian meal ideas would be amazing!)

TREATMENT EXPERIENCE: What has been your experience with Methotrexate for neurosarcoidosis? Did it work for you.

I would be so grateful to hear any experiences or hopeful stories from those who have been through this.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@pchin Welcome to Mayo Clinic Connect! You’re facing some difficult times so I’m really glad you found us. Your experience sounds somewhat like mine but the diagnosis is different. Mine was lymphocytic lesions on my brain. I got through the steroid phase (mine lasted 2018-2025) and now I’m on maintenance drugs (as long as my MRIs stay clear). My only s.e. From prednisone were sleepless nights. Didn’t gain any weight (yea!). But, I should let the members chime in with their experiences.

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