Cyclosporine (Sandimmune) - user experiences?

Hey everyone!

I’ve been dealing with nasty, chronic neurodermatitis (atopic dermatitis) since I was an infant. I’ve tried just about everything under the sun, but for the last two years, my doctors have been pushing cyclosporine. I’ve always said no—not really interested—but things have reached a point where I’m actually considering it. The problem is, I know next to nothing about it. I haven't heard any firsthand accounts from anyone, and my doctors? They aren't exactly giving me much to work with...
If anyone here has used it and is willing to share what it was like, I’d really appreciate it.
🤷😕👍

quoting:
cyclosporine is an "immunosuppressant" used to suppress the immune system in patients dealing with severe rheumatoid arthritis, intense psoriasis, or those who have undergone bone marrow transplants. If cyclosporine levels get too high, it can trigger seizures and significantly increase the risk of side effects.

For what it’s worth, I’m currently on Medtronic (which falls under the same immunosuppressant umbrella—specifically a corticosteroid from the glucocorticoid group), and let me tell you, the list of side effects is exhaustive. But with these kinds of drugs, doctors generally weigh whether the benefits of treating the actual disease outweigh the "downsides." Basically, the potential harm is often considered acceptable compared to the relief the medication provides. I don't have firsthand experience with cyclosporine, but from my time on corticosteroids, I've dealt with weight gain, water and salt retention (swelling, moon face), acne, stomach issues, high cholesterol, and certain mental health shifts like nervousness, anxiety, and mood swings. Since these drugs are designed to lower your immunity, you end up more vulnerable to infections and inflammation, so constant monitoring is mandatory—regular blood work, swabs, and even OBGYN checkups—just to make sure some dormant infection isn't flaring up. You also have to keep a close eye on cyclosporine levels in the blood to prevent them from spiking, which is definitely not ideal. I hope this gives you at least a little bit of perspective, though I'm hoping someone who actually uses cyclosporine chimes in so you can get some firsthand info.
Besides, it doesn't necessarily mean you'll deal with a mountain of side effects; everyone reacts to medication differently.
Good luck!

Hey there,

I've been on cyclosporine for nearly eight months now—so if you have any questions at all about the experience, just shoot! 🙂