Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...

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KatesGram 12/08/2013

I was diagnosed with a 7 mm prolactinoma about 2.5 months ago. I was started on Cabergoline 0.5 mg twice weekly and have felt mostly terrible. My prolactin has gone from 163 to about 30.

I still have breast milk and I was wondering how long it took others to get rid of it.

Also my main side effects have been nausea, dizziness, tinnitus, low blood pressure, gassiness, and teariness the day after the dose. Will these side effects get better and if so, how long?

It is very hard to work like this. Considering surgery but am scared due to the lateral location of my tumor. It is abutting the left internal carotid artery.

Any advice is welcome.

TinyDot 12/15/2013

I can't answer on many of those points but seriously, just try half a tablet with your evening meal every 2nd night. The difference is amazing. Not really any side effects once you switch from a whole tablet twice a week to half a tablet more frequently.

I doesn't help the other daily side effects (like brain fade etc) but stops the teariness, aggression etc

deleted_user 12/15/2013

It takes a couple of months. The most important thing is not to touch your breasts or check if it's still there (difficult I know) as that will stimulate it to keep happening.

deleted_user 12/23/2013

As far as the dizziness and nausea... I know I can tell a difference when taking the medicine immediately after a meal or snack (my endo recommends something starchy), and taking it even 15 minutes later. If I wait even as little as 15 minutes, I am usually sick to my stomach for a while.

And I would highly recommend doing half a pill twice a week. I started on half a pill twice a week for a month and had great results. I then moved to a whole pill and felt terrible (bad headaches mainly). I had to revert to the half pill twice a week for a while longer before I could handle the whole pill. I felt virtually no side effects with the half pill. And now I am up to 1.5 pills twice a week with no terribly noticeable side effects.

Sounds like you have had too much too fast. I have been there. Back off for a couple months... it still works very well in small doses. Hope you start feeling better!!

KatesGram 12/24/2013

I saw a new endo last week at UTSW Medical Center. She says I need to increase to 1.5 tabs twice weekly as my prolactin has stalled at 33. I've been on 1 tab twice weekly for 2.5 months. I probably won't increase until after the holidays but the thought scares me.

I feel like the meds cause a lot of short term memory stuff too. That is scary.

TinyDot 12/26/2013

Ginkgo Biloba taken twice daily fixes the memory issue. Mine was terrible and it was affecting my work, so much so I was wondering when people would start to complain to my employer. Since starting Ginkgo Biloba capsules twice daily, one with breakfast and one early afternoon, I've improved no end. Give it a shot, it may make you feel normal again.

KatesGram 12/26/2013

Thanks and I will try that! I've been a little afraid to try new supplements due to drug reactions with the Cab.

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