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Quinagolide for Elevated Prolactin

I know many of us deal with elevated PRL, and the solutions up until now have been limited to cabergoline and bromocriptine. Which, in the pituitary adenoma community, we like to refer to as “lifelong chemo.”

I found a dr here who has experience with quinagolide, which is a non ergoline dopamine agonist used internationally - including Canada. She put in the order, and it should be arriving this coming week. I’m excited to give it a shot and share my results.

For the record, my PRL has gone everywhere from 30 to 80 over the last few years. It’s not high by prolactinoma standards, but it is out of range. The catch? ~75% of it is bound to IgG, meaning in my body, most of it is “macroprolactin.” While this is considered biologically inactive, many doctors have seen cases where it does exhibit an effect still. Macroprolactinemia, as this phenomenon is known, is considered a rare disease.

Anyways, my sex drive and erectile function have been declining since I was 25 (I’m 35 now), and TRT has helped, but was not a magic bullet. Prolactin remains the one element on my blood work that still sits out of range, so I believe it’s worth trying a different family of drug to treat it. Caber made my sex life worse (and made me super tired), and bromo may as well have been a tranquilizer dart. Quinagolide is supposed to be much better in this regard, and the fatigue seems to pass within a few weeks for people too!

I’m going to document my experience here, whether it lasts a day or a month, or longer (hopefully!). If it is a success, hopefully others will be able to open a discussion with their doctor and request a prescription for this alternative to the traditional DAs.

Disclaimer: DAs (dopamine agonists) are incredibly powerful drugs that are commonly used for Parkinson’s disease. Taking them puts you at risk for DAWS - where your body stops making enough dopamine for itself after the DA is stopped. This can last for years in some people. Please don’t take a DA just because you heard it can remove the male refractory period, or give your libido a nice boost. Also, these aren’t “fun” just because they involve dopamine. They’re typically littered with side effects, and the risks are steep. Not to mention, driving your PRL too low will cause problems too - not unlike taking too much of an AI.

Hey. Do you have an update on this?
I’m on cabergoline for a prolactinoma as well, but it’s making me terribly tired all day.
I was doing good with T only when prolactin started going higher and higher.
Did you think about removing it surgically by the way?

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It never helped :confused: Totally ditched it and cabergoline for now. My PRL continues to stay in the same range so I just leave it.

Have your macroprolactin checked too if you can.

I did consider surgical removal, but only one doctor would do it, and he didn’t seem very competent about removing it given how close it is to the pituitary stalk.

I’m on it since May, but it makes me terribly tired and mentally foggy, along with worsening my already bad sleep.
I will check prolactin levels again on Wednesday and I think I will reduce dosage. If it doesn’t resolve symptoms like that, I will just ditch it and wait to remove it surgically.

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