Hippo or Human?

I often joke that while on steroids, I transition from a human to a hippo because of the severe weight gain caused by steroid treatment. It's easier to joke because otherwise I will get upset about it.


I am going to discuss what it's like being treated with steroid medications, because this treatment is a difficult process to undergo. The medication causes various undesirable side effects, and many of them even require treatment with other medications to control the side effects. For example, on steroids I get severe panic attacks and anxiety and therefore need Xanax in order to decrease the anxiety and treat panic attacks. Some of the side effects are as follows:
-Severe panic/anxiety
-Severe weight gain, water retention, redistribution of fat to places like abdomen, neck, face, legs.
-Cushings....which includes symptoms like "moon face"-face enlarges and literally takes on a moon shape
-Mood changes
-Increased anger
-Insomnia while on medication, and when you taper off the steroids you experience extreme tiredness
-Increased sweating
-Severe swollen glands in underarms
-Heartburn
-Increased appetite and craving sugar/sweets (and even after eating a meal, I often experience a hunger pain which causes increased eating in order to get rid of the uncomfortable hunger pain)
-Irregular heartbeat/heart palpitations
-Swelling of hands/feet/ankles
-Depression
-Increased predisposition to infection due to weakened immune system
-Easy bruising/bleeding
-Bone pain
-Thinning skin
-Changes in menstrual period (when I was on steroids for 5 years, I did not get a period for 2 years even after stopping the steroids)

This list includes side effects that I have experienced. All from one medication. It is so horrible. Prednisone is a wonderful medication in that while on it, I feel great. I can function a lot better. It is considered an anti-inflammatory drug, which is why it is so effective in treating my disease. Behcet's Disease results from an overactive immune system and causes a severe increase in inflammation throughout the body. Anti-inflammatory medications therefore reduce overall inflammation. Steroids are the only medication that work for treating my disease. And due to the severe and long term side effects, it is not recommended that I take steroids for long periods of time. Even a few months is not encouraged. In the past, I was on Prednisone for 5 years consecutively. Since then, I have been on and off them numerous times.

What I am about to discuss is an extremely difficult topic to approach. It is a sensitive topic, so please respect what I have to say and realize how upsetting it is for me to share this.

In the past two months I have been on steroids twice for a period of two weeks each time. I will give you an idea of the severity of one of the main side effects: weight gain. Prior to taking steroids, I weighed 126lbs. At 5'10" that is quite thin. I was always super active in sports and ate all the time. I just could not gain weight. After the 5 years, I gained 90 lbs. I needed about 30lbs to bring myself up to a normal weight for my height. Yet 90 lbs made me overweight. I literally do not recognize myself when I look in the mirror. I see a stranger peering back at me. My face is super swollen and round. My stomach went from being flat to having a large round "pooch." I now weigh 213lbs. I don't think I look that big, but still, knowing that I weigh that much is so awful. I look at pictures of myself prior to the weight gain, and I want that body back. I struggle because just when I am on a roll and start losing 30 lbs, I have to go back on steroids and then I gain it all back. I just had that happen....I am back to weighing what I did prior to losing the weight. It is so hard to have my weight fluctuate this frequently. I no longer fit into my old clothes. They sit in boxes in the basement. Most days I don't want to leave the house because I feel so ugly. I feel people are looking at me because it looks different than just normal weight gain. Steroid weight gain is different because of the way the fat is redistributed. The moon face is the hardest to deal with.

My self esteem has been largely effected by my different appearance. I spend many hours wishing I had my body back. I feel like I am in a stranger's body. It is difficult for others to comprehend how I feel unless they have been through this situation. In a society that places such an emphasis on appearances it is so hard to cope with this. It really is stressful. I try to accept myself for where I am at moment by moment and remind myself it is temporary, but it doesn't seem that temporary. Especially when I think of the long term....Steroids, being the only effective treatment, will likely be a part of my treatment plan long term. Therefore, the weight gain will always be there. I will constantly lose weight and then gain it back. The weight gain influences every aspect of my life. Dating especially. I have had men tell me that in my pictures I look hot, but not in person. Even though they are aware it is temporary and it will go away. It is so hard to hear this. I am not even given a chance because I am judged by my weight and also by the disease that I have.

Dealing with Behcet's Disease is challenging enough. But adding other issues such as steroid side effects exacerbates the challenges. I am terribly depressed because of how this disease and medications have influenced my life. Thank you for reading this. It was difficult to write, and I was brought to tears while writing it because it profoundly affects my emotions. It is a constant internal struggle to deal with the change in my appearance. Please comment if you have anything you would like to say to help me cope with this. I welcome any recommendations or just words of wisdom and support. God Bless you all.