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User Reviews for Cabergoline to treat Hyperprolactinemia

Also known as: Dostinex

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

Cabergoline Rating Summary

User Ratings
10
   
32%(16)
9
   
20%(10)
8
   
16%(8)
7
   
12%(6)
6
   
4%(2)
5
   
6%(3)
4
   
6%(3)
3
   
2%(1)
2
   
0%(0)
1
   
2%(1)
8.0/10 Average Rating
50 Ratings with 61 User Reviews

What next? Compare all 4 medications used in the treatment of Hyperprolactinemia.

Reviews for Cabergoline

"-Male - Diagnosed with Macro Prolactinoma - initial levels 315000 which was extremely high, the tumour was pressing on my skull and optic nerves. - went on 1x2.5mg once a week and gradually increased dosage to 2x5mg twice a week - 8 months later levels are down to 1200 Side effects - first was mood swings, insomnia, extreme drowsiness. - after a month or so I noticed I felt angry quite a bit and has caused issues with friends and family. - after a few months my testosterone levels increased and so did sexual urges and penis length. - after 6 months I started getting anxiety attacks which I haven’t had for over 10 years. So for me the side effects are quite bad but it’s working so will report back in a few months. It’s been very tough for me."

   
8.0

Danny AU (taken for 6 months to 1 year) June 19, 2019

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"I'm a 22 year old female who began with Dostinex in December 2018 with macroadenoma 12mm and a prolactine level of 237. In February 2019, prolactine decreased to 10 and the adenoma is now micro with 8mm. My body reacted incredibly well to cabergoline; it even helped me to lose weight (along with exercise and nutrition). However, I have experienced extremely painful periods, breast pain and runny nose (it’s like having the flu everyday)."

   
9.0

mptsy (taken for 1 to 6 months) April 7, 2019

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"I am a 29 yo male, went to Urologist after consistently low libido and erectile dysfunction. Blood tests revealed hyperprolactinemia and low testosterone, subsequent MRI was consistent with microprolactinoma. Was put on 0.25 mg Cabergoline twice a week. After around 10 weeks of taking it, my prolactin is now down to 29 ng/ml from initial ~120 ng/ml at time of diagnosis, and testosterone is up from 250 ng/dl to 350 ng/dl. My libido and erectile function have improved significantly. I consistently take the drug at night after dinner and I am experiencing virtually no side effects. Very happy with this drug so far."

   
10

ChristopherN (taken for 1 to 6 months) March 31, 2019

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"I was diagnosed with a microadenoma 35 years ago. I’ve been taking 2.5mg/wk for my whole adult life. I have felt every negative side effect associated with taking this for years. I recently found a new Endocrinologist who order a new MRI. My last was about 8 years ago. Previous Drs usually monitored my adenoma by checking my prolactin levels. To my shock the MRI came back clean, no tumor present. My new Endo says he needs to slowly wean me off Dostinex now. I’m terrified of the side effect syndrome associated with this drug. I’m also on a low dose of Lexapro 5mg that I’ve tried to wean off of and thought I was going to come apart from the horrible side effects. Has anyone else been through anything like this?"

Kristin (taken for 10 years or more) January 22, 2019

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"After years of being told I should loose weight for my pain and excessive bleeding, and lactating. Then the tumor was found. I have been on caberogline for 6 months. I was diagnosed with a macroadnoma. I was prescribed 1/2 tablet twice a week. Now I take .5 tablet once a week. I approached my endocrinologist with my symptoms of nausea, headaches, mood swings, confusion and complaint of extreme heavy bleeding and the solution was birth control. The medicine is shrinking my tumor but the side effects are leaving me in a horrible situation..."

   
7.0

Herwife (taken for 1 to 6 months) January 12, 2019

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Dostinex (cabergoline): "After getting nauseated and not being able to function well on the other 2 Dopa agonists I tried, No nausea and no noticeable dizziness on this. Immediately upon starting cabergoline, I slept like A BABY. It was a very noticeable change. Then after a few months, I became an insomniac. The other persistent things were that I developed a stuffy nose when my dose was due and for about a day after taking it (every 4 days). I was also more tired the day after I took it (always at night). A good side effect was being able to drink very little with full effect. My temper was better than it was prior. It may have boosted my libido slightly. Eventually got my dose down to about an eighth of a pill, then a couple of months ago I lost my bottle. Withdrawal was sleeping incredibly poorly for about 4-5 nights. I’m not lactating, as I did every time when stopping it over the years, so maybe middle age is working for me. Cheaper in Canada, but recommend you get brand Dostinex only."

   
9.0

Anj (taken for 10 years or more) December 15, 2018

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"I have been using caberlin from one month's now but day by day I'm gaining weight, feeling very tired, mild headache, sleeplessness"

sumki October 30, 2018

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"I started taking cabergaline a month ago. Hoping to lower my prolactin levels. Hoping it has worked, I have had a couple of side affects. One being slight head aches and the other is the huge sexual urge. It has changed my life completely. For the better."

   
10

Walter (taken for 1 to 6 months) October 23, 2018

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"I took a single dose of 0.25mg ( 1/2 of my prescribed weekly dose). I felt very depressed with a lack of motivation the following day in a way that is unusual for me and I'm considering contacting my doctor to change the medication. Does anyone has a similar experience? Is it possible for the side effects to come so fast?"

   
1.0

At (taken for less than 1 month) October 10, 2018

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"I was diagnosed of pituitary microadenoma. At first my doctor gave me bromocriptine 2.5 mg every day for the hyperprolactinemia. I took only 4 days because I was so sick after 4 days, dizzy ,nausea, vomiting, left ear the buzzing is so loud I felt like there is air inside. I ended up at the emergency. So Doctor change my meds to Cabergoline 2.5 mg once a week but the side effects are so bad too. I took only 2 weeks I can't stand it anymore dizziness and the nausea is the worse."

Jeanny September 21, 2018

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"I first went on cabergoline back in 1995 in Germany after my daughter was born and pituitary tumor was diagnosed. For 12 years it kept my tumor small. I’m 2007 I moved back to the USA, and was refused all treatment for my tumor as a pre-existing condition. I couldn’t afford the cost of the cabergoline without insurance covering it, so I stopped taking it. In 2010 my tumor got so large without my realizing what was going on that I almost died. Had surgery, back on cab, residual/tumor regrowth remains manageable. I’ve never had side effects and have had good results keeping my tumor in check with cabergoline."

   
10

Lindyloo (taken for 10 years or more) July 28, 2018

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"I have this bad headache and abnormal period. I went to OB for check up then she requested my prolactin and LH to be tested. My prolactin was 1154 last June 20 and now after 4 tablets of carbegoline it went down to 5.82.. thanks"

Mc (taken for less than 1 month) July 16, 2018

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Dostinex (cabergoline): "I am 30 years old and taking Dostinex for the last 13 years since I was diagnosed with macroadenoma. The first years I was taking 1mg weekly and the last years only the half dose - 0,5mg per week. What is really negative about Dostinex is its high price. I would like to inform users that I buy it from Bulgaria where the price is 4 times cheaper than in Cyprus (17 EUR per 8 tablets). In regards to the side effects, I used to have depressions and changes in the mood but I think is impossible to know if it comes from Dostinex or not. I wouldn't say there are strong negative side effects on me. I can easily concentrate and memorize. I have heard Dostinex is known to stimulate concentration and develop motor skills. I don't encourage nobody to take it without reason, but I believe beside negative there are positive side effects as well."

Theo (taken for 10 years or more) July 8, 2018

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"I'm a 23 y/o male with secondary hypogonadism caused by high prolactin levels. My initial prolactin was 3900 (47-405) and testosterone 1.6 (10-38). After being on this drug for 4 months my prolactin dropped to 1045 and testosterone risen to 17.9. I'm taking 0.5 mg of cabergoline 3 times a week. Although my prolactin levels are not yet within the normal range, it has brought back my T levels from 1.6 to 17.9 which is amazing. Side effects are mild depression, headache, and drowsiness. I take it in the evening to prevent such bad effects of the drug."

   
9.0

Dilanka (taken for 1 to 6 months) April 12, 2018

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"Male 43 year old. Been on cabergoline for 10 years. Diagnosed with prolactinoma on the pitutary. Lots of side effects that got progressively worse. Depression, anger, loss of motivation, dizziness, horrible insomnia, occasional intestinal distress"

   
6.0

Scott (taken for 5 to 10 years) March 30, 2018

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Dostinex (cabergoline): "Pituitary tumor diagnosed at 19 yrs . Used bromacriptine for many years worst side effects ever. 33 years later happy on dostiex thanks."

   
9.0

Bb (taken for 10 years or more) February 24, 2018

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"I was on this for 3 months. I went off it because it made me feel like I had a low level flu and was always tired. The withdrawal I had from being on this drug has been horrible! Panic attacks, mood swings, highs and lows, nausea, sleep disturbances. Its called dopamine antagonist withdrawal syndrome. I've read since people go back on it because of how bad the symptoms of withdrawal are, and how long it stays. I've been off it for 3 months now and I am still having side effects from coming off of it. It lowered my prolactin levels into normal ranges within a month of being on it, and its easy to use. I was on 0.5mg once a week. I will not go back on this medication due to how it effected my mental health."

   
6.0

lif (taken for 1 to 6 months) February 6, 2018

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"After 1.5 months of treatment, it has reduced my prolactin levels from 1264 μUI/mL to 285 μUI/mL. I take 0.25 mg weekly during meals as specified in the patient information leaflet (Europe) to prevent nausea and vomiting. I take it in the evening to prevent dizziness. When I took the second dose I started experiencing skin itching (I am prone to allergies), so now I take 1 tablet of Claritin (loratadine) one hour before taking cabergoline. I have had mild constipation. The next day after the first dose, I felt like I was raising from the dead. My depression was gone, my fatigue was gone, and in the first two weeks my panic attacks (very strong before starting the treatment) were gone. Unfortunately, after two months of treatment I am back to my “normal” depressed, tired and anxious self. Now, however, I am also angry all the time. It also seems to stimulate my hirsutism although I am on medication for lowering my testosterone levels."

   
9.0

zbanghi February 5, 2018

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"2nd time on this medication for a naughty tumour secreting prolactin. Medication did cause me to go a little loopy and dizzy during the beginning, as a result I take the medication late in the evening so I sleep through the worst of it. I experienced hallucinations whilst on the drug, thinking I'm seeing spiders crawl up the wall in the corner of my eye, once I look they disappear, the hallucinations are more frequent in dark rooms. Changes in behaviour, I find it more difficult to control strong emotions. It's a bit annoying to get hold of, my pharmacy never has it in stock so I have to ring ahead to ensure it's ordered before I run out."

   
7.0

ShaniceyIreland January 29, 2018

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"I've been on Cabergoline 0.25 for 2 weeks now for hyperprolactinemia caused by a Microadenoma. Before I started taking it I came on here for reviews and almost said no to it because all these comments about the side affects made me so nervous. I'll sit here and be the one to say this medication gave me next to NO side effects. I had a pretty bad headache for the first 2 times, after that I have no side effects at all. No idea if my prolactin level is any lower, but I feel my vision coming back slowly and less frequent dizziness. Hoping a few more weeks I can get back to my regular routine."

Rach100 October 18, 2017

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"32 yr. old male. prolactin levels 55.9. I've been on cabergoline for 4 weeks now. My lab results came back and I am now within the healthy range at 9.9. I went maybe 2 weeks with bad nausea and headaches then they subsided and those effects are less intense and less frequent. I rated a 7 because the medicine certainly works, and quickly at bringing down prolactin, I do not know the results about it shrinking the adenoma or not yet so I am still unsure if it works on that front. So far so good. While the side effects were annoying and disrupted my daily life, it is certainly better than the alternative of surgery to remove the "noma" from my pituitary gland."

   
7.0

L. Joe August 2, 2017

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"Just had an awful night from the effects of Cabergoline 0.5mg ..felt like there was poison in stomach and the abdominal pain is just too much. Had to vomit and had diarrhoea at the same time. It just happened so sudden. Most time just had bad cramps and abdominal pain. Bad times I get this combo of pain diarrhoea vomit and dizzy. 4 hours usually of intense abdominal pain And nightmare. I had started on the meds 9 years ago and stopped because of the cost and the cost for the Doc and the pain. But it works. It brought down the prolactin and menstrual does comes back. but once I stop he meds everything went back to the same prolactin level >250. Wish there's no side effect. It's a painful experience and since I had to take it every week."

   
7.0

Est W July 31, 2017

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Dostinex (cabergoline): "Three months ago have used dostinex for 4 weeks, two times a week half pill, so one pill a week! Before I have started to use dostinex my prolactine level was 589! After I used it for 4 weeks, prolactine level dropped down to 36. I was stupid I guess and I stopped using it. Now I am back on dostinex again because prolactine level went up to 600. Please if you are using dostinex regularly check with your doctor. That is my strong advice, don't be stupid like I was. Dostinex helped me with my prolactine. Thank you all"

Najko July 28, 2017

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"I have been on Cabergoline for about a month now, after being diagnosed with ridiculously high prolactin levels, and all sorts of problems from lactating to extreme fatigue. After reading all of the reviews listing horrific side effects, I was really nervous about it, and was considering holding out for surgery instead. However, I'm pleased to report that I'm able to give a positive review. I have had no side effects at all (apart from mild constipation in the couple of days immediately after taking each tablet). I am more focussed, I am less fatigued and I've even had a period (very light). I know that it's early days, and I've got follow up appointments in the coming weeks, but I am glad to be able to report a positive experience."

Nicegirl06 (taken for less than 1 month) July 18, 2017

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"I had a 4.3 cm prolactinoma with prolactin level at 9500. Taking 0.5 mg every other day. Biggest side effect is costs and availability. Wal Mart pharmacy always does a partial fill as they are always out of stock. Internet search for average price yields nothing. Shame on these drug companies. Levels now at 600.......To Maleka on a previous post with ice pick pain headache, you may have trigeminal neuralgia. Your cure is tegretol. Been there done that, good luck"

   
9.0

Anonymous (taken for 1 to 6 months) July 5, 2017

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Learn more about Hyperprolactinemia

IBM Watson Micromedex

ICD-10 CM Clinical Codes (External)

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