Since opening up about my pituitary adenoma diagnosis I’ve had a few DMs about treatments and medication come through. I’ve briefly talked about the medication I was prescribed earlier this year, and still take today — it’s generic name is cabergoline and its also known by its brand name Dostinex. So I wanted to share more about my experiences on this specific medication and give you all a few fast facts.
What is it?
Cabergoline is used to treat an array of medical problems that happen when too much of the hormone prolactin is produced. It’s commonly used to treat pituitary tumors, fertility issues for both men and women, and certain menstrual disorders. Cabergoline works by stopping the brain from making and releasing the prolactin hormone from the pituitary gland.
According to the American Cancer Society, dopamine agonists like cabergoline as well as bromocriptine, normalize prolactin levels and work so well to shrink prolactin-secreting #microadenomas that surgery isn't needed. However, even if the tumor does not shrink while on these medications, both medications can typically keep #prolactinomas from growing larger in size.
Dosing
Cabergoline is a medication that’s taken orally. Dosing will vary from patient-to-patient. At first the most common dosage is 0.25 milligrams two times each week. That’s exactly what my endocrinologist prescribed. The tablets can easily be split into two pieces and I take one full tablet each week. Because of the potential side effects I took my endocrinologist’s recommendation of taking the medication right before bed.
Symptoms
Let’s talk side effects. It’s not always easy for me to narrow down what is causing certain feelings, like is this brain fog because of the medication, or….? Some of the common side effects of this cabergoline are:
Shortness of breath
Chest pain, dry cough
Lightheadedness
Pain in your side or lower back
Little or no urination
Swelling in the ankles or feet
Lack or loss of strength
Nausea
Constipation
Headache
Dizziness
Drowsiness
When I first started taking Cabergoline I experienced the lightheadedness and feeling like I was about to pass out. The morning after taking it I do still feel a little foggy — hello brain fog. I also get crazy pain in my lower back — but I’m attributing that to #Adenomyosis, mostly. Hate to say it but headaches and drowsiness are basically my normal.
People who take Cabergoline often say that their sex drive increases, a lot. Increases sex drive is listed on the side effects, and so is the urge to gamble, in addition to quote, other intense urges.
My results
After just a few months on the medication I had a follow up visit with my endocrinologist. We did blood work and my prolactin levels fell into the standard range at 9.3. The standard ranges between 4.8-23.3. Most doctors or endocrinologists will want to see you again for blood work three months after taking the medication.
My menstrual cycles also got more regular. Once my prolactin levels came back into a standard range the spotting I was experiencing before taking cabergoline started to occur less frequently, and basically stopped altogether. It’s great knowing that my hormones aren’t so out-of-whack anymore.
The future
There are a few things that could factor into my continued use of cabergoline. First, if I were to get pregnant, my endocrinologist recommended to switch from cabergoline to bromocriptine, which is also used to treat high levels of prolactin. Next, there could be dosing adjustments. I’m still kind of unclear on how long I will be taking this medication.
A number of sources, including the Mayo Clinic, where I am being treated, say that after six months inside of a normal prolactin level range, patients should discontinue use. I spoke with my endocrinologist briefly about this, and they basically told me that we’ll see when we get there. Resources from the American Cancer Society say that if successful (meaning prolactin levels return to normal and tumor shrinks or doesn’t grow) medication may be continued for life. Regular MRIs to see if the tumor comes back are recommended. Research out of the University of California says that life-long treatment is required to control growth and prolactin-secretion as well.
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