Managing a resurgence of skin problems with Cushing’s disease

Cushing’s disease has affected my skin for more than five years now. I started noticing skin issues in 2020, and now they’re all starting to reappear.

I’ve been off my Cushing’s medications for about seven months because I’m pregnant. The drugs could be dangerous for my baby, so when I started undergoing in vitro fertilization, I had to stop taking them. I am excited to go back on them once the baby is here, but in the meantime, Cushing’s symptoms are starting to hit me harder than ever.

This disease can affect the skin in so many ways, causing obvious problems such as thin skin, deep striae (purple stretch marks), and bruising. Other symptoms are less dramatic and noticeable, but they still affect me every single day.

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Rashes

During a Cushing’s flare-up, I get rashes all over my body that manifest differently. Around my breasts, I get red and yellow spots, and in other areas, such as my neck and arms, I get raised red bumps.

I use some over-the-counter skin creams that are safe for pregnancy and nonsteroidal, which help to mitigate the pain and clear up the issue temporarily. But the rashes still come back intermittently; the only thing that makes them go away for a long period of time is my Cushing’s medication. So, unfortunately, for now, the best I can do is manage.

Facial issues

I also get hormonal acne from Cushing’s disease, which is usually controlled by spironolactone. Since I’ve been off this medication, my acne has run rampant. Much of it is around my mouth and, surprisingly (and annoyingly), in my ears. I try to maintain a consistent skin care routine, using a cleanser, a moisturizer, and a rose serum, but the acne persists. I do my best not to pick at it and be as patient as possible.

Along with the acne, I get large, hard bumps all over my body that are similar to pimples, but much harder to treat. I clean them regularly and leave them alone. While they’re irritating, they’re mostly harmless and tend to go away over time.

I also experience cracked skin around my mouth. It tends to hurt, and other than moisturizing, there isn’t much I can do. I wish I had more helpful advice for those who experience this, but I haven’t yet found a good solution.

Hair and scalp

The last issue is new for me, so I’m not sure if it’s related to Cushing’s or pregnancy, but my scalp has been dry, which is more uncomfortable than anything. It makes me feel dirty, even though my hair is incredibly clean. I’m still trying to solve this, but so far I’ve been oiling my scalp once a week to add moisture, and I switched to an antibacterial shampoo, even though it isn’t the best for my curls. This has helped, but it hasn’t solved the problem entirely.

These skin problems drive me insane, and managing them feels like a full-time job. I tackle them the best I can, but the stigma around rashes and dandruff makes me self-conscious, and I’ve found myself wanting to stay inside so people don’t notice these issues. I’m working on that.

I want to get to a place where I can accept all aspects of Cushing’s, but the disease occasionally gets me down. If it gets you down, too, that’s OK. Nobody can stay positive 100 percent of the time. We’re all doing our best to fight through it, and some days, that’s enough.

You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.