High Dose Cortisone Effects

High dose cortisone steroid changes my physical appearance.

Yesterday afternoon I met the son of Frau Sigrid, Frau Sigrid was my roommate in the Karlsruhe Klinikum, she called me her granddaughter. I didn’t know she passed away in August, not long after I left the hospital. She was always in my mind, I wanted to see her, but I was too sick in August from the side effects of cortisone.

Shortly after I went back home in mid July 2017, my parents flew back to Jakarta. But my 2 bestfriends from Beijing and Singapore came visit me. I was not able to show them around Karlsruhe, instead they spent time with me at home, cook for me, help me get up from bed/chair, clean up dishes, buy groceries, etc. They help me a lot, also help my husband so he can be in the office.


High-dose cortisone administered to control brain swelling. This can’t be stopped instantly, must be reduce 2mg per 4-5 days. Tapered gradually from 20mg to 0mg.

During my treatment with cortisone, I developed some side effects:

1. I felt floating as if I was in the Aladdin world.

2. Lost focus and conscious. E.g I was eating lunch with Kayan, but felt like it was just a dream. My body did activities but my mind was not really there.

3. I lost my leg muscles. I can’t stand up by myself. I need wheelchair. I need equipment in the bathroom so I can sit and have a shower.

4. I was weak that I need help to blow dry my hair.

5. My skin and eyes was sensitive to sun light. I got stinging headache immediately if I was exposed to sun.

6. I struggled with temperature. I wore layers of winter clothes in a very hot summer. Luckily I never got fever.

7. My skin was sensitive to winds and I burped a lot. I felt like winds entered my body, I felt bloated, my body was cold.

8. I felt electrocutes sensation from my left shoulder to my left leg, all the time.

9. I missed my menstrual period until October.

Worst part was:

9. Cushing syndrome. I developed a full moon face. Cortisone changes my appearance.

Some of these symptoms was hard to explain to the doctor for them to understand.


It took me almost 2 months to tapered the dose gradually to zero. After that it took a while to get rid of the side effects.

Once I stopped cortisone, my consciousness was much better.

In September, my face was less puffy and I was able to stand up alone by holding on to rollator and walking with rollator.

In October, I can climb stairs, stand up without help, and walk at home without rollator.

In November, I walk outdoor without rollator, usually holding hands with husband or friends.

Although people may notice there’s problem with my walking, but I am very very happy and grateful to be able to walk again. 😊

Praise the Lord for the strength, thank my husband for his unconditional love, my family and friends for their support and prayer.

It’s hot summer. First time to a restaurant again after almost 3 months.
Mostly stayed home with scheduled sleeping time. Still coping with the side effects from RT
Husband always makes me feel beautiful despite my full moon face
Jupp, Cushing syndrome
In September, after 3 months, for the first time I went to the supermarket with the rollator.
With Kayan and Ashlee. My beautiful angels were by my side at home, for almost a month.

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