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.

Hospital Frequent Flier Miles

I was just in the Emergency Room about a month ago due to severe ulcers on my skin. I received intravenous steroid treatment and immediately started improving. I was sent home with oral steroids to take for two weeks. The Prednisone definitely helped me in terms of improving my symptoms, but unfortunately Prednisone also causes severe side effects for me. Such as anxiety and panic attacks, shaking, weight gain, increased sweating, insomnia, heart palpitations, etc. So once I had tapered off the steroids, of course I got a bad flare up right away. This time it was in my throat, which is typical. I have had those ulcers in my mouth and throat every day for five years. Although, this time the steroids actually kept them at bay for about week. It felt so nice to be able to eat or drink whatever I wanted sans pain. I could talk and everyone could understand me. I didn't drool whenever I slept. It was great feeling so wonderful even though it was for just a short period of time.

So the sores got so painful that I was encouraged by my doctor to go to the hospital again. It's pretty sad when you go to the hospital and are recognized by nurses and other staff/administration. I always say they should offer frequent flier miles for those of us who are in the hospital a lot. Even though I was in the ER for hours, I was in good spirits. It always throws people off because they think that I am not really that sick. I am, but I don't enjoy being sad or depressed all the time. I am so used to being sick and in pain that I just have learned to deal with it. Looks can be deceiving. Just because I don't want to be miserable while I am sick doesn't mean I am in any less pain or any less deserving of pain medication. My mom always says, "don't pretend that you are fine. Don't act happy or they will send you home thinking you are fine." I always explain that I am in pain, but I am inside alone so much that it's nice to get out and have social interaction, even if it is in the hospital. That's pretty sad.

I received IV treatment with steroids again and was sent home with oral Prednisone. I will have to take them for about two weeks. I know that as soon as I start tapering down past 10mg my symptoms will return. My time of feeling okay is pretty limited. But some time of feeling better is better than nothing! I will take what I get. But it is also difficult because I feel good, and then get sick again. It's so frustrating knowing there is a medication that makes me feel good and allwos me to function, but I am unable to take it long term. It's a tease.

I have been reading a lot and relaxing. It's been getting pretty cold out, which I enjoy because I am always warm. I used to despise the cold weather. I guess things change.

What's been going on?

The past few weeks have been filled with doctor's appointments and errands. I was in the Emergency Room about three weeks ago because my skin ulcers were so bad that the doctor's were worried about cellulitis and sepsis, which are serious infections. Sepsis is an infection of the blood. I was given an injection of 40mg of steroids and some pain meds. I was sent home with oral steroids to take for the next two weeks....I may have mentioned some of this in a previous post.

I just finished the steroids a few days ago. I had lost approximately 9 lbs from being on  steroids the previous time. In just one week, I had gained all that back. 9 lbs. I was feeling so good and now I feel awful. When you get off steroids, you feel even worse because they mask everything and make you feel great. Now, I am getting a bad flare up, I am exhausted, have severe anxiety, and pain.....Most of this from the steroids. I am STARVING all the time, which is another side effect of the steroids. It's awful!!! I am psychologically dealing with the issues associated with my fluctuating weight. To say that is difficult, especially being a woman, is an understatement.

I also got a flu shot a couple weeks ago. I started Imuran, which is an immunosuppressant. The main side effect of this medication is an increased susceptibility to infection. So that makes it difficult because I have to limit the places I go or the people I come into contact with. My doctors stress how important it is that my family and close friends get a flu shot so I can limit the potential for infection. If I were to get sick with something, I would undoubtedly be hospitalized.

I have been sleeping more during the night, which is great! Typically I sleep during the day and am awake all day. The stress associated with an abnormal sleep cycle causes a propesity for an exacerbation of symptoms. Additionally, while I am asleep during the day, people are functioning out in the world. Working, running errands, engaging in social activities with friends and family, etc. My maladaptive sleep cycle creates not only physical symptoms, but it also limits me from engaging in appropriate social interactions with others. This isolation prevents me from coping adequately with the myriad stressors associated with chronic illness and chronic pain. Social support is important for anyone, but especially individuals suffering from medical and psychological diagnoses.

Despite the ongoing pain and medical issues, I am staying strong and positive psychologically. I have been in a good mood for the majority of past few weeks. I have been reaching out to others and talking with friends on the phone. I have been trying to keep busy and helping my mother with things. I am attempting to remain hopeful that the medication I am on will be effective and will send me into remission. I will be keeping you all updated!

 Thanks for reading. Please feel free to comment on any of my posts. Also, if you are suffering from any kind of illness, whether it be medical/physical or a psychological diagnosis, please PLEASE feel comfortable sharing your story. I think it is important to speak out and create connections. This is one of the main reasons I created this blog. Speaking out opens doors and creates the opportunity to be heard. Being heard validates one's feelings and experiences, allowing the individual to internalize feelings of self worth.