Skip to main content

Cushing's Awareness Challenge - Day 10

Medications to treat Cushing's is a newly expanding option.  When I was diagnosed with Cushing's, only about 7 years ago, these new medications were barely in trial phases.

I only tried a couple medications when I had Cushing's.  I tried to get into a clinical trial of mifepristone but was denied because my blood glucose was not high enough.  I didn't have many options outside of surgery or radiation.

These days, the medication options are endless.  Patients can be on medications from the moment they are diagnosed.  For patients with a failed first surgery, this is a great option to get some relief from symptoms before opting for another surgery.

One of the first medications I tried was cabergoline.  Typically, it is used for patients with prolactinomas (another kind of pituitary tumor), to help lower prolactin levels.  It has shown some success in Cushing's patients, but not to the same level.   I took this for about 3 months, had little risk, and I had no major side effects. My main complaint was nausea, and this was easily treated, and went away after a few weeks of taking the medication. I did not experience any improvement while on it.

Once we determined cabergoline wasn't working for me, I tried ketoconazole.  This is a commonly prescribed anti-fungal, which benefits Cushing's patients by inhibiting the cortisol response to ACTH.  Cushing's patients take this in pill form.  Other forms commonly used for fungal infections are shampoo and cream.

Today, the medication options are comparatively endless.  Most of these are now out of clinical trials and are commonly used, some are still in trial stages.

This article from the Cushing's Support and Research Foundation explains the medications available.

What medications did you take for Cushing's?  Did they work for you?


Comments

Popular posts from this blog

Plastic Surgery

When I was 17, I thought about getting a breast reduction.  I was still pretty thin at this point and it bothered me to by bigger clothes just to fit my bust.  I had a hard time exercising and always had back pain and grooves in my shoulders where my bra straps sat. I had a few consults with different plastic surgeons and ended up scheduling surgery for the week before my high school graduation.  I ended up "chickening out" because I didn't want the surgery to have any impact on my graduation, and I hadn't had any major surgeries before.  I started gaining weight due to Cushing's shortly after, so it worked out for the best in the end.

Now, my breast size has gone way down since I've lost weight, and even though they are still bigger than average, they don't get in my way as much and are more proportional to my body. These days, my plastic surgery dream is to have a tummy tuck.  I have a lot of excess skin on my body, especially on my belly, and in a drea…

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…