Prolactinoma and pituitary microadonoma

hello. I've been on the cabergoline for a couple years now. recently, my Endo increased it 2 half a tablet 3 times a week and I started having swelling behind the knees and in both legs and I started having problems with my feet. I did not realize it was the cabergoline causing this. my primary care increase me to one tablet twice a week because he felt the levels were too high. after 3 weeks on the higher dose I started to have itchy creepy crawly sensations in my legs and arms and I could not sleep at night. I also started having really bad anxiety and panic attacks which I never had before. and then I started having intense hypersexuality and I've been divorced for 6 years and I don't even date. I also had joint pains all over my body.The feelings were so intense that I ended up in the hospital. none of the doctors could figure out what was happening. with days of not being able to sleep I was able to do research online and found some articles where people we're having really bad anxiety on cabergoline. I looked at the side effect profile and everything I was feeling is a side effect from the drug. I've been on the medication for a couple years at a low dose so it never occurred to me that it would be this medication causing the problems. my endo told me to stop the medication for two weeks to see if I feel better. I am now off the medication for almost 3 weeks and I don't quite feel myself. I still have the jittery and tingly in my legs. I am praying that everything goes back to normal as the symptoms are horrible. I am in the US and I am also a pharmacist but when your body is going through thousands of changes it's hard to pinpoint what the cause is and because I was on cabergoline for so long it took me awhile to realize it was causing these issues. has anyone else had any of these side effects and how long did it take to go away after stopping the cabergoline?

Hi sorry that you're going through this it sounds horrible. I've just come out from endocrinologist appointment. I'm currently on quinagolide but it s not working well to lower my prolactin, so I may go back to cabergoline as apparently its stronger. I used to take cabergoline from 2009-2013 when I became pregnant and then stopped for a couple of years as breastfeeding. I don't remember having adverse affects when stopping though not sure as I felt rubbish from pregnancy symptoms. My mood and anxiety definitely worsened after pregnancy and I haven't gone quite back to normal. I'm not sure if you can get dopamine agonist withdrawel when stopping, I have heard of it but not sure if it effects people on this kind of dosage? I hope you feel better soon.

And like you said there are lots of different factors, it's hard to know what's what. Having high prolactin affects your mood too. I also got really strong sexual feelings when on my highest dose as previously had no sex drive then I became pregnant, by my partner!

Hi Charlotte,

I am also on quinagolide, stopped it briefly a year or so ago and my prolactin levels came back up so restarted. For the week or so after stopping it I felt horrible, it did coincide with a very long and busy week at work but I have never felt so down. I mentioned it to my endocrinologist and he said it could potentially be related. I luckily felt better after a couple of weeks but I am thinking if I stop it again I might gradually reduce the dose first

Hi, stopping it gradually sounds like a good idea then definitely. Do you feel OK on the medication and is it controlling your prolactin?

I feel OK on the quinagolide most of the time, if a miss a dose and then restart or after a dose increase I get nausea and low blood pressure. Currently on 150ug a day and it's controlling my prolactin

hello,

i am wondering what mental symptoms you all had before diagnosis and during both medicines cabergoline and bromocriptine. i have a Prolactinoma 6 mm. pituitary secretes both progestin and growth hormone. i have had both medicines Cabergoline first crying all the time lump in throat and GERD. i discovered on this site low estrogen causes some of that. i am menopausal so increased estrogen throat and GERD symptoms went away. i wanted to go back and try weekly Cabergoline, but Endo says to wait and stay on Bromocriptine. Mentally i have felt worse. i was on Cabergoline since Jan 1, then changed to Bromocriptine middle March. So 4 months combiation both. Anybody have the coping issues? How long mental issues might last and if they had to use a mood stabilizor medicine.. A major side note I have Cushing's with adrenal removed so low cortisol now and steroids for over a year and hypothyroid. Hormonally a mess. Any advice?

hello,

i am wondering what mental symptoms you all had before diagnosis and during both medicines cabergoline and bromocriptine. i have a Prolactinoma 6 mm. pituitary secretes both progestin and growth hormone. i have had both medicines Cabergoline first crying all the time lump in throat and GERD. i discovered on this site low estrogen causes some of that. i am menopausal so increased estrogen throat and GERD symptoms went away. i wanted to go back and try weekly Cabergoline, but Endo says to wait and stay on Bromocriptine. Mentally i have felt worse. i was on Cabergoline since Jan 1, then changed to Bromocriptine middle March. So 4 months combiation both. Anybody have the coping issues? How long mental issues might last and if they had to use a mood stabilizor medicine.. A major side note I have Cushing's with adrenal removed so low cortisol now and steroids for over a year and hypothyroid. Hormonally a mess. Any advice.