When Can I Stop Taking Cabergoline for Prolactinoma?

While you may feel completely back to normal, stopping cabergoline requires careful planning with your endocrinologist. To have the best chance of a permanent cure—known as remission—the Endocrine Society recommends meeting three strict criteria: you must have been taking the medication for at least two years, your prolactin levels must be consistently normal, and your tumor must have shrunk by at least 50% or completely disappeared on an MRI ^[1][2][3]. If you stop taking the medication prematurely, your tumor and symptoms are highly likely to return.

(Note: Stopping cabergoline because you have become pregnant follows an entirely different set of rules. Discuss pregnancy plans immediately with your care team.) ^[4]

The Rules for Stopping Cabergoline

Stopping a dopamine agonist like cabergoline is known as a trial withdrawal. Your doctor will consider a trial withdrawal only if you meet specific consensus criteria ^[5][1]:

• Time on medication: You must have been taking cabergoline for at least two years ^[2]. Research shows that a longer treatment duration (such as 5 or more years) can increase your chances of staying in remission ^[6][7].
• Normal prolactin levels: Your blood tests must show that your prolactin levels have stabilized in the normal range while taking the medication ^[1]. Doctors sometimes look for prolactin levels to be very low at the time of withdrawal to predict better success ^[3].
• Significant tumor shrinkage: Your latest MRI must show that the tumor has either disappeared completely or shrunk by at least 50% from its original size ^[2][8][1].

Before stopping completely, it is also generally required that you have tapered down to the lowest possible maintenance dose of cabergoline while still keeping your prolactin levels normal ^[9]. This tapering process is usually done gradually over several months. Additionally, after menopause, prolactin levels naturally decline, so doctors might consider stopping the medication for post-menopausal women even if all criteria are not perfectly met.

Is a Permanent Cure Possible?

A permanent cure is possible for some patients, but it is not guaranteed. Remission means that after you stop taking cabergoline, your prolactin levels stay normal and the tumor does not grow back. The likelihood of staying in remission depends heavily on the original size of your tumor ^[10][11]:

• Microprolactinomas (tumors smaller than 10mm): Patients with smaller tumors have the best outcomes. Studies show that approximately 65% of people with microprolactinomas remain in remission after stopping cabergoline ^[12][2].
• Macroprolactinomas (tumors 10mm or larger): Patients with larger tumors have a lower chance of long-term remission. Approximately 36% of people with macroprolactinomas remain in remission after withdrawal ^[12][2]. If the tumor was very large or invasive, doctors often recommend staying on medication indefinitely due to the high risk of it returning ^[13][14].

If your prolactin levels rise again after stopping the medication, this is called a recurrence. Recurrence is common and usually happens within the first 1 to 3 years after stopping the drug ^[3][15].

What to Expect During a Trial Withdrawal

Stopping cabergoline at the low doses used for prolactinoma does not typically cause physical withdrawal symptoms; the primary concern is the return of the prolactinoma itself. If you and your doctor decide to stop the medication, you will need close monitoring to ensure the tumor is not growing back. This involves:

• Frequent blood tests to check your prolactin levels, often every 3 months for the first year ^[15][16].
• Follow-up MRI scans to monitor the pituitary gland, typically scheduled about 1 year after stopping, or sooner if your prolactin levels rise ^[15].
• Monitoring for the return of hyperprolactinemia symptoms, such as headaches, vision changes, or changes in your menstrual cycle or sexual function.

If your prolactin levels start to rise or the tumor grows, you will likely need to restart cabergoline. Even if you do require medication again, you may find that you need a lower dose than before ^[15].