Drug Ratings for DOSTINEXAverage Rating: 3.6 (345 Ratings)
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Results are sorted by Date Rating Was Added Key to Ratings: 1=LOW (I would not recommend taking this medicine.) |
| RATING | REASON | SIDE EFFECTS FOR DOSTINEX | COMMENTS | SEX | AGE | DURATION/ DOSAGE | DATE ADDED |
  | F M | | | | |||
| 5 | Microprolactinoma | No side effects at all. I don't even feel like I'm taking anything. | I am trying to conceive another child and was diagnosed with high prolactin. An MRI showed a 4 MM prolactinoma on my pituitary gland. I had no symptoms of this tumor other than light periods. My prolactin levels went down to normal just 4 weeks after starting this drug. I have had absolutely no side effects on this medication. | F | 38 | 7 weeks .5 MG 2X W | 5/17/2013 | 3 | pituitary macroadenoma | I have been taking this med for about a year now. I was diagnosed with a pituitary macroadenoma that was over 5cm. My prolactin level was 1900 before surgery. 90 percent of the tumor was removed they could not reach it all because it would have killed me it is wrapped around my Carotid artery. So after the surgery they put me on this med it started making me sick and has caused many other side effects like feeling weak or tired, loss of appetite, rapid weight loss, headache, depressed mood, nausea, vomiting, stomach pain, gas, indigestion, constipation and feelings of anger. At this point I have no other choice if I do not take this medication my surgeon and all my doctors said the tumor would grow back in 2 years or less and it would kill me. I really would like to hear from more people about their experiences with med and if anyone is having all the same side effects as me. I feel as if I am going crazy because I either die or feel horrible forever cause I can never stop taking it. | M | 23 | 1 years | 5/7/2013 | 3 | Menstrual cycle stopped | Neck pain, Migraines, Fatigue, Hot Flushes, Intolerant to heat | F | 35 | 6 years .5mg | 5/6/2013 | 3 | pituitary adenoma | I HAVE BEEN TAKING CABERGOLINE FOR 14 YEARS NOW. IT LOWERED MY PROLACTIN LEVEL AND RESTARTED MY PERIODS WHICH HAD BEEN ABSENT FOR YEARS, BUT I HAVE SUFFERED SEVERE PERSONALITY CHANGES, ANGER, ANXIETY, TIREDNESS AND CONSTANT DEPRESSION. I STILL HAVE HOT FLUSHES AND NEED TO SLEEP A LOT. THE WORST EFFECTS ARE GASTRIC IRRITATION AND CONSTANT STOMACH PROBLEMS. MY LIFE HAS BEEN MADE VERY DIFFICULT BY THIS CONDITION AND THE MEDICATION I FIND HARD TO DEAL WITH. I CAN'T BELIEVE THIS IS AS GOOD AS IT GETS, IN FACT IT SEEMS TO GET WORSE THE LONGER I AM ON THIS DRUG. | F | 57 | 1 years .05mg | 4/17/2013 | 3 | pituitary microadenoma | shortness of breath, can't concentrate, easily confused. no organ reserve. I have one speed, which barely gets me from a to b. can't do sports because i can't push myself to perform. feel like a zombie. | brought down my prolactin and my testosterone up but, can't get me to the normal levels | M | 42 | 2 years 2 pills 3X W | 12/6/2012 | 4 | Prolactinoma | Started out with high prolactin levels around 100-150 in 2011, but this year 2012 my level was at a normal 5, when I started taking Cabergoline the one suffering side effect was extreme fatigue and a dizziness that would not go away for about 3 months! After that everything seems to start adjusting, BUT not ended there; I started with mood swings and emotional stress. Today after one year, the one thing I notice the MOST and I am afraid of sometimes is the MOOD SWINGS! Sometimes I can't control them and anything (the most simple thing) can trigger it and I have hurt my boyfriend feelings many times. I pray to God to give me the strength to continue and be able to manage this anger issues. In all I feel 90% better than when I was first diagnosed, and I was able to drop half the weight I had gain since then.....I don't want to depend on this medication and I have faith I will be heal. I maintain a healthy eating habit, I started juicing and want to do more RAW and GREEN eating! I also t | F | 33 | 1 years 0.5 MG 1X W | 11/29/2012 | 3 | Prolactinoma | I first started with Bromocriptine and it was Awful!!!! I had the worst side effects I could ever imagine... Dr said I was taking to much. My Endo put me on Cabergoline this Sep. 2011, and my experience has been good and bad, I started with severe Vertigo(felt like I was spinning all the time)... Then it stopped. After that I've lost weight, also had little appetite and severe sexual urge. But that has also been minimized with time, now I'm more tired, fatigue is severe, always feel like sleeping. Also during the months I experience moods swings and feel very irritated and just Angry for no reason. My last blood test showed my prolactin a normal range from 150 to 5... I really wish I can just stop taking this, I feel like it worsen with time and I don't want to depend on it my whole life. I have also been going to depression, ups and downs. So I feel like it help on one end, but also worsen on the other. :-( | F | 33 | 1 years 1x1week | 11/6/2012 | 5 | Pituitary macroadenoma | None really to speak of that I can attribute to Dostinex | Firstly, I was fortunate to find out that I had a pituitary macroadenoma; a routine MRI found it, as I was asymptomatic. I was luckily able to avoid surgery and was started on Dostinex. My side effects could be attributed to the fact that my high prolactin level of 4000 killed my testosterone level completely. Have been taking weekly testo injections for the past year to compensate and that could be what is causing my increase in appetite and aggressive moods. Just did bloods and my prolactin level is now at 600 and dropping, so I would say Dostinex is definitely helping. Sex drive still not quite there but I do sleep at night and have no other side effects.All in all I would say a very positive drug for my condition | M | 53 | 1 years 2 mg 2X W | 10/12/2012 | 3 | prolactinoma | I can sleep more than 10-12 hours, feel very tired, depressed and sex is far away from my mind. I am not the same person. | All my life my periods are not normal, but this drug didn't help me with that. My prolactin level is ok now, I hope my endo will tell me to reduce or stop taking it. I also have proplems with my breasts - fibroadenomas. Please write me, if you have fibroadenomas and prolactinom. | F | 24 | 2 years 0,125 MG 1X W | 10/7/2012 | 4 | MEN1/prolactinoma | None the first time I took it. This time feeling groggy and not much of an appetite. | I was on Dostinex for about a year a few years ago. It helped bring my prolactin level down greatly. Then when i got my period back I got pregnant so i had to get off of it. I continued after child birth until i lost my insurance. Ive been off of Dostinex for almost 2 years now since its so expensive. I had tried Bromocriptine but it made me horribly nauseous. I never had any side effects before with Dostinex. I just finished my first week of getting back on Dostinex and I have noticed groggy/hungover feeling. Just feel blah most of the time. Also lack of apetite. I hope it brings my Prolactin level down though. Anyone else have MEN1? | F | 29 | 1 weeks .25mg 2X W | 9/10/2012 | 4 | prolactinoma | I am a 70 year old male, with a 3mm prolactinoma, diagnosed 2 years ago. Been on dostinex almost 2 years, my dosage is 0.25mg twice (that is a half a tab)a week. I ocasionally have that tired feeling on the days I take the medication. If you are taking .5mg twice per week, it could be too much, talk to your doctor and determine if that is the case. My hormone levels were not good for the last 20 years with no clue as to why, until I had an MRI and found the prolactinoma. Since I have been taking the dostinex my hormone balance is now normal for a male of my age, I have lost 20 lbs. with no real effort. All other side effects that have been reported by other male patients have been very minimal if any and not of a concern. So my evaluation of dostinex is between a 3 and a 4, it is effective for my condition. I have had no shrinkage in tumor size but no growth, that is good. If no growth continues in the future, surgery will be avoided. If surgery in needed, then the Denver area has on | M | 70 | 2 years .25 mg 2X W | 9/6/2012 | 3 | 1 days | 8/7/2012 | 2 | active prolactenoma | CRAZY in the head. Irrational. Nausea for 3 days after taking it. Sleep for 10 hours but don't feel rested. Sweat so much at night I think I peed the bed. Want to drink beer and lots of it. Lowered sex drive and drive in general. Dry mouth. This is the third time I have been on this drug. I am having the worst side effects I have ever experienced. I am on cabergoline this time instead of dostinex. I am going to stop taking it. I don't know what my next move will be but I know I can't live life this way. The active tumor makes me nausea, eat more, crave certain foods, gain wait and feel moody but at least I was happier and have a desire to be active and live my life when I wasn't on this medicine. I am glad for those that have had success with you. We all have our own medical journey to traverse. | F | 43 | 8 months 1 pill/wk | 7/10/2012 | 1 | prolactinoma | terrible weakness, unable to get out of bed, dizziness, ended up in the emergency room because of the symptoms, change in personality, appetite, everything. Very scary | I had to stop taking Dostinex after a trip to the emergency room. I now experience severe withdrawal effects. Dizziness is much worse than when I took the drug, i feel that I have to hold up my head, because it feels like something is moving in it. Does anybody experience withdrawal effects after stopping this medication? How long do they last and what do you do about it? Please email me! | F | 39 | 6 months 5mg 2X W | 6/26/2012 | 3 | Macroadenoma | Increased Libido, ability to loose weight, muscle mass increase, increased energy levels | The drug worked as advertised, reduced my prolactin levels from 15000 to less than 2 in less than 2 years and increased my T-levels from 70-600. However, although increased libido is of course good, hypersexuality is a problem and I find myself thinking about sex all the time...Watch out for compulsive behaviours (sex, drugs, gambling) | M | 38 | 2 years 0.75 1X W | 5/4/2012 | 2 | Prolactinoma | Pain, aches, chills and fatigue. | F | 40 | 9 months .5 mg | 5/2/2012 | 3 | hyperprolactinemia/ microadenoma | F | 25 | 1 months 0.5mg 1X D | 4/18/2012 History | 4 | Benign pituitary tumor elevated pro | I have taken carbergoline for years. Has helped a great deal--periods returned to normal, prolactin level normal, pituitary tumor undetectable on MRI. But just recently I have noticed heart palpitations and increased anxiety the day after I take it. Anyone else experience this? The heart palpitations are really starting to bother me. I don't know why I would start having these side effects after being on it so long and it didn't bother me for so long. | F | 46 | 4 years 0.5 mg | 2/27/2012 | 4 | prolactinoma of the paturitry gland | I started taking this medicine after using bromacriptine wich made me very sick, the day after the start of dostinex about 11 years ago my peranality changed withouhgt me even realising it. I got more moody and agressive. My wife has still put up with me to this day bless her. E-mail me if you need to no more as I believe I am the longast standing person on it to this day possably. | M | 40 | 10 days 4 | 2/12/2012 | 4 | microadenoma and high prolactine | tiredness, very sleepy, I could sleep 10 hours. very moody. If I don't take it with food I feel very bad. | It degrease the proclactin level from 960 to 120 in 2 months. very good medicine. | F | 35 | 2 years 25mg 1X W | 1/12/2012 | 4 | Pituitary Adenoma | M | 70 | 6 years 0.25mg 4X W | 11/28/2011 History | 5 | microadenoma 8mm | Slight nausea when first started taking medicine. Some dizziness, especially when getting up too fast. I take it at night before bed and it helps me sleep better. | Brought my prolactin down very quickly. Got my period within the first month of treatment and have been regular ever since. Prolactin 57 when first diagnosed. Prolactin now at 9. Recent MRI shows tumor is no longer clearly demonstrated. I'm glad there is a drug like this that is able to help reduce a tumor without surgery. | F | 46 | 5 years .25mg 3X W | 11/21/2011 | 5 | macroadenoma | Tiny bit of headaches, constipation | I think this is a great drug!! My sex drive over 4 years of being married plummeted!! I was not sure what to do? I was finally diagnosed about 2 months ago with a very high prolactin level a little over 3000. I had an MRI done about 1 month after it showed an macroadenoma 2cm x 3cm. I have been taking the medicine and can already feel a HUGE DIFFERENCE!! I have labs this thursday and cant wait to see what my levels are at now! My sex drive has started to slowly increase, my energy night and day difference, my motivation went from wanting to lay down on the couch and exhausted after 8pm most of the day to exercising 3-4 times a week and still perky at 10 and 11 pm at night. EATING HABITS A HUGE KEY FACTOR!! I went from trying to eat right to living it. My wife the angel that she is got us stated in GREEN SMOOTHIES, 60%fruit 40% veggies. I have never felt better. It the RAW diet, there's a family that lived in my home town that taught us a lot about eating correctly and my life has improved significantly. I would say that's why I have probably not had huge side affects like most people have bc I was willing to change my diet. I can almost promise you that as you do your health will increase and same with your energy. You can mix what ever you want in the green smoothies it just depends of what you like them to taste like. Any questions email me! Increasing meds this week | M | 27 | 1 months 0.25 2X W | 10/30/2011 | 5 | Pituitary Adenoma | Cabergoline - Fantastic Side: Reduced prolactin from 137 to 7 in just a few months. (Had already developed breast cancer by then). Reduced diplopia in both eyes quite a bit, although I traded that off for worse vision. Still that was a benefit because you can't get glasses for spastic diploplia (each episode lasting about 2 to 4 hours). Felt 100% better in about 3 days already. Was calling it the magic drug right from the start after having a brutal head-splitting incident with Bromocriptine. Solved some pretty serious intestinal issues. Down to 3 times a day versus 6. Gave me a great lift. I am almost a senior so I couldn't take it in the full dose because that kept me awake for 48 hours at a time. That's why it was reduced. It also made my heart beat faster which was great because I had bradycardia, possible LVH (EKG said) and extreme irregularities when it got too slow. So as far a I was concerned, it's these tumours that cause LVH and not Cabergoline. Didn't do a t | Got off of the Cabergoline. Violent reaction first few weeks. Worse than getting off of a drug like Paxil. Very violent depression. Felt awful instantly. Broke out in massive uncontrollable sweats! Started sleeping more. Started getting violent spasms in muscles from hip to toe - very violent! From one I was crawling for several days, and others I was sore for several days from less painful charlie horses. My body didn't like quitting this drug at all! Heart started getting too slow and irregular again at night. After three weeks overcame major depression but was still in some depression for next three months with odd bout of severe depression. Started on Cabergoline again. Don't know what prolactin level is now and don't know what tumour size is. Should find out soon. Not sure what to do about the stomach issue. Don't like "coated" pills because I believe that they cause cancer in the intestines. Might weaken it a little on occasion in the future, but I think I will need it for another few months at least. | F | 63 | 10 months 0.25 1X W | 8/6/2011 | 5 | Prolactinoma | I am a bit disgusted at some of the people commenting here. This drug cannot be causing some of the side effects they say they are experiencing as many of them are not even known side effects of this drug. I had NO SIDE EFFECTS AT ALL. After being on bromocriptine and the nausea that came with that drug, it was a relief. | There are lawsuits surrounding this drug at present and I think people are scapegoating this drug. I was on it for 15 years, so I was one of the earliest users of this drug for prolactinoma. Prior to this drug I was on bromocriptine and that drug caused me terrible nausea. Cabergoline supposedly causes impulse control issues like gambling, high sex drive, etc in certain people. My doctor never had a patient with these problems and I certainly never experienced them. I never had a single problem with this drug. | F | 45 | 15 years 100 1X W | 8/2/2011 | 3 | High Prolactin Level: 155 | Extreme fatigue. I can sleep for hours at a time. Also, I have GI upset, and just a sense of feeling blah. My appetite has also decreased. | I am taking 1/2 of a pill twice a week because of an irregular menstrual cycle. I haven't had a cycle since January, and this was even after a course of Provera. I was wondering if anyone could share their experience in terms of how quickly their cycle resumed after taking Dostinex. Thanks! My rating is low because I haven't been on the drug long enough to tell if it has lowered my prolactin level. | F | 38 | 9 days .5 MG 1X W | 7/27/2011 | 4 | High Prolactin Levels | Tiredness, lighheadness, nausea, feeling hungover, change in mental health, depressed, anxious and panic attacks got really bad, mood swings, change in personality, became a different person. | I have now stopped taking dostinex after two years on them i ended up in a psychiatric hospital, i am not blaming them totally for my mental health as i have always had mental health issues but thay made me alot worse i felt like i was loosing my mind. I am seeing the endo tomorrow as i have been of them three months and my psychiatrist and therapist said i need to make sure he listens to me that i can't take them. I am now afraid my levels will rise they were 30 when last tested and that was on the meds before is started them the levels were almost 4000. This is my third posting here i really think we need to be listened to about this medication. | F | 35 | 2 days 0.5mg 1X W | 7/21/2011 | 1 | Prolactinoma and level of 1950 | M | 46 | .5mg 4X W | 6/26/2011 History | 3 | High Prolactine 265.0 | Please contact me if anybody is experience the same or similar as me. This is a moment in my life when I really need a friend with my same problems so we can help each other. I started taking Dostinex to reduce mi Prolactine Level. During the 4th weeks I am experiencing a huge change in my temper, i have terrible hot flashes, nauseas and I feel i gain weight. I don't have any desire for sex, not at all, I don't even want to sleep close to my husband it bothers me a lot. I thought this pill will help me in my sex life but it doesn't. | I started taking Parlodel 6 years ago in small doses and increasing at 2/day... it was horrible, i can't work well, think, drive my car, sleep, talk to people, it was a horrible experience, I had horrible migraines my vision started becoming black by the pain in my brain I called the ambulance several times and it cost me thousands of dollars...., because all this i lost my job and i went to a deep depression. after 1 year taking Parlodel i quit. Then I didn;t do anything for 5 years, of course i did wrong my prolactine went higher... 3 months ago i experienced bad headaches and terrible migraines and the dr. told me to start with dostinex, not bad at all in comparison with parlodel this is much better. I am having terrible hot flashes now like 20 times a day, and this just started last week. I lost my temper for no reason, I am sleepy I do not want to have sex and i hate my life this way. I just lost my job again, this time I had a Government Job and the medicine effects cost my Job I am very upset , under stress and very very frustrated; this time in the middle of my treatment and now i will have to stop the treatment again, I only have 2 pills left for the next 2 weeks and that's it! I have no insurance for the expensives MRI, Dr's Appointmens and either for the medicine. Who can help me :-( I already have an appointment in 2 weeks and I don't think so the Dr. from the Baptist Medical Hospital will allow me to get in without paying... | F | 35 | 5 weeks 0.5 2X W | 6/2/2011 | 3 | elevated prolactin | fatigue, headache, dizziness, "hung over" feeling (particularly 24-48 hours after the dose), depressed mood, lack of energy, needing 10-12 hours of sleep a day. | I have a 5mm pituitary microadenoma that secretes prolactin. My prolactin level is 40 w/o meds, and that is high enough for me to miss periods. Also, I have extreme difficulty sleeping when my prolactin is elevated. I also had extremely painful periods (cramps so bad I couldn't leave the house) for 11 yrs prior to my diagnosis, and still for 5 years after I started the meds. Now they are pretty much pain free but I don't credit the meds, just increased age and a much improved, plant-based diet. With cabergoline (they don't make the brand name, Dostinex, anymore) my prolactin is usually around a 5, but since the generic came out it doesn't seem to be working as well and the side effects are more pronounced. Junk. I take the smallest possible dose to keep my period regular and make sure I am sleeping. HOWEVER, the drug has problems. The side effects are consistent and have not gone away after 10 years of use. I feel hung over for 24 to 48 hours after my weekly dose (I used to take it 2x/wk, but due to the side effects, I'm down to 1x/wk with my doc's approval). On Dostinex, I require a LOT of sleep, 8-10 hours at night and often a long nap during the day. It is very disruptive to a productive life. When I first started taking it years ago, I had increased sex drive, but after about 6-12 months it went away (so those of you on it only a few months, don't expect it to last). Also, since Dostinex is a dopamine agonist, expect mood changes. Still not sure it's worth it. | F | 35 | 10 years 0.25mg 1X W | 6/1/2011 | 5 | Micro Prolactinoma | Had mild cramping like a period was due but they didnt start. Also have felt more moody. | I went on Dostinex for a few months back in 2008 to make my period regular and I fell pregnant the first try. After pregnancy my Micro Prolactinoma grew from 4mm to 8mm. My prolactin was 5000 (range 85 - 500) but after this past 8 weeks back on dostinex my level has dropped to 499. Hopefullt a period will soon follow. | F | 31 | 8 weeks 0.5mg 1X W | 5/25/2011 | 3 | Prolactinoma | Extreme increase in sex drive and mood swings. | This review is about my ex-wife not myself, just to inform people about the drug. I love and hate what this drug did to my ex-wife. It saved her life, for that I will always be gratefull. However it's side effects of EXTREME sexual arousal and mood swings destroyed our marriage and family. She went from never wanting sex at all, to cruising the internet for men to sleep with and having unprotected dangerous sex with strangers. After she filed for devorced to sow her wild oats I found out I had been exposed to STD's through her and had to pay hundreds of dollars out of pocket to have myself tested so it wouldn't affect my health insurance rates. Be carefull when you or a partner uses this drug. | F | 46 | 1 years 1X W | 5/19/2011 | 4 | Prolactinoma | Increased libido, weight loss of 10 lbs down from 190 to 180, increased energy, less sleep required, overall I'm feeling much better than before the Prolactinoma was diagnosed. | M | 58 | 6 months .5 MG 2X W | 3/14/2011 | 2 | Pituitary Microadenoma | Constipation, occasional headache, the most disturbing s/e elevated LFTs- 5 times over the normal | I was Dx with elevated Prolactin level 3 years ago- had no symptoms, exept mild osteopenia- I'm 43 y/o now. I never had any problems with my cycle, always regular. All other hormons are normal ( FSH, LH,testosterone, Estradiol..), Prolactin level initially decreased from 37 to 18, then went up to 42, the dose was increased to BIW, no significant effect since. My last Level was 41, yet I had to stop this medication d/t moderate elevation of my Liver enzymes. | F | 43 | 30 months .25mg 2X W | 1/27/2011 | 3 | High prolactin level | Nausea, dizziness, hangover feeling on day after taking the pill, lack of appetite, bloated feeling, headaches, depressed, unable to concentrate for long. | It took 4 weeks for any of these side effects to be felt. I was relieved to find that my lack of drive and my unexplained feelings of depression are a result of this drug and not some break-down! I'm battling to work out how to do my job effectively while feeling this way. It's like feeling sick all the time which I'm not used to as I am otherwise very healthy. I'm willing to take this as long as possible to see if it increases my chances of falling pregnant. | F | 37 | 5 weeks 0.25mg 2X W | 1/9/2011 | 4 | High level prolactin | No side effects when started , but now after 5yrs and reading some of the comments I can associate to change of mood, anger for nothing, strong PMS, SEX never enough ... | Started with Parlodel but could not tolerate the side effects, in 2004 started 0.5mg/wk. Had my successful pregnancy in 2007 healthy daughter now 3yrs, but had to do ovulation control with my GYN and first attempt positive, stoped medication during pregnancy and started again after my daughter was 1yr. Now I am on medication for 2yrs straight and I am having all those strange feelings in my personality and last week the endocrinologist mentioned a heart disease in people that use Dostinex for long period, does anyone of you on long term know anything about it or have done a heart scan ?? I cannot stop thinking about it and want a check up done !! | F | 33 | 5 years 0.5 1X W | 12/28/2010 | 5 | micro adenoma | M | 43 | 1 years 0.5 1X W | 11/26/2010 | 4 | High Prolactin | This is my second posting on this drug, only noticeable side effect now is tiredness and that hungover feeling. It has brought the levels down to normal. I posted again because i have noticed a complete change in my personality since taking this drug, which is confusing as i had mental health issues such as depression and panic attacks before starting it but they got worse after, i now do things totally out of character. My doctor says its not the medication that made me this way and even if it was i would still have to take the medication anyway. Just wondered if anyone else felt like this, that their personality changed. Medication still working and i am slowly adjusting to my new personality. | F | 35 | 19 months 0.5mg 1X W | 11/24/2010 | 3 | Pituitary Macroadenoma | No specific side effects | My tumour has not responded to the dostinex, the tumour is now compressing my optic nerve and I am scheduled for Transphenoidal surgery in Jan. Has anyone had this? Would really appreciate if you could email me and let me know what to expect. Thanks | F | 30 | 2 years 0.5 1X D | 11/21/2010 | 5 | Extreme tiredness, almost comatose sleeping in random places. Weight loss, and abnormal emotional reactions (almost unemotional) | After having 1st baby at 18, i was without period for 2 years and even after breastfeeding ceased i was secreting milk, i also found it hard to lose weight. after failure to conceive i was diagnosed with a 5mm tumour hormone level 800. I was given dostinex 1 x a week and within 5 weeks had my period back. After 8 weeks i fell pregnant again (unknowingly) and thus continued taking dostinex fro 4 more weeks. After vomiting non stop for about two weeks and no period realised i was pregnant and stopped dostinex. I was still very sick for about 6 weeks which was when the dostinex cleared out of my system. I was monitored very closely during pregnancy and had a perfectly normal baby. Now after 4months of breastfeeding am back on dostinex now 2x a week because hormones level are at 5000. have only been back on for 1 1/2 weeks. So far very tired. | F | 21 | 13 weeks 2X W | 11/20/2010 | 3 | high prolactin | no sever side effects. Much better than Parlodel in side effects | I'm wondering whether Dostinx is effect to me..My prolactin level did be lowered from 80 to 45 in three months, but my cycle is longer than before which was about 30-day when I took Parlodel and now was 42-day,taking Dostinx. My basal body tempreture is not byphase any longer which I think is not good for pregenancy. I took MRI this morning. | F | 31 | 3 months 0.5mg 2X W | 10/22/2010 | 5 | Prolactinoma | No side effects yet | I was diagnosed with a peutitary tumor on the anterior side of the gland ( back side ) the size of the tumor was 1.5" and as far as I knew i didnt have any problems... after starting on the drug.. i started to feel amazing.. sex drive is near uncontrollable..(good) sex itself has become unbelievable.. (feeling intensified, increased size of unit, rapid regeneration,) 60 lbs of weight lost. Energy level increased dramatically, daily outlook is brighter. this drug should have a nickname = the happy drug.. i have felt zero side effects from the drug. only positive effects ( don't be afraid of taking this drug it has increased my quality of life ten fold..) I wont lie either... i told a friend about it and gave him some pills... ooh and did he enjoy them.. Thank you very much for the developement of this drug..... | M | 31 | 6 months .50 3X W | 9/28/2010 | 1 | Prolactinoma | I have no control over the way I feel.I can be happy for a few hours or a day, Then fall into pieces and cry.Sad and depressed with the slightest thing bothering me.I give importance to what I shouldn’t .I am angry with people and when I am not sad I am not.Sad memories keep me crying.Anything negative hurts me Noises have made me so upset.I shake.Headaches.Fatigue.Wake up wet with sweat.Upset stomach.Near blackouts.Irrational conclusions and behavior.Inability to make dependable decisions Unable to concentrate.I forget things- it’s like having a cloth between me and what I want to remember.I just cannot handle ANYTHING.I feel desperate and so dependent .I have lost eagerness- Nothing interests me.I know who I was and I feel like I am going crazy not being that person | For the longest time I thought it was ME trying to cope with life- but after research about cabergoline and a “modest” reassurance from my doctors, I believe I have been horribly affected by cabergoline. I can't cope.I hate waking up.For a long while I couldn't even sleep.I can't function. I just get angry so suddenly by the slightest thing.My mind reels around sad thoughts and sad memories.I don't trust my own judgement anymore.Things (that should be easy) are just absolutely impossibly difficult.I woke up drenched the other night.I've had near blackouts.I feel like...I try to swim up and out of the water to get air to find that there IS NO AIR.This is so scary because it is not tangible! it is a feeling of complete, sad, emptiness.I should have filled gallons with tears by now. I shake.I lost over 30lbs.Everything is a blur.Remembering is such a task.It's like having a veil in front of your eyes that keeps you from the real world. My rationale is gone! I have never felt so horrible in my life. I was taken off the medication on Aug/8th. I still feel these effects, although the intensity is less and less (after 7 weeks I am still very sad).I am scheduled for surgery in Nov because I refuse to try Parlodel or antidepressants. I just want to be normal again and capable and independent and HAPPY.I am now trying to find out as much as I can about the medication and surgery, and anything related to short or long lasting side effects of both. | F | 29 | 3 years .5 mg 2X W | 9/27/2010 | 4 | pit tumor 6.4 cm x4.2 | nausea, stomach upsets dizzy abdomical pain mood swings | worked for awhile 3yrs due to very high increase of prolactin level, endocoloogist said should have been dead 5 yrs ago, trying radiation therapy to see if there is any shinkage of tumor in pit uary gland | M | 61 | 6 years 3X W | 9/18/2010 | 5 | micro prolactinoma | mood swings, predominantly | my tumour completely disappeared. my infertility issues disappeared along with the tumor. | F | 44 | 6 months 10 1X D | 8/27/2010 | 1 | macroadenoma hyperprolactinemia | Chronic fatigue, weakness, car-sick feeling of mild dizziness and nauseous, making it hard to concentrate and be functional. Depression, depression, depression. | Diagnosed at age 12 with Prolactin of 1600. Responded well to Parlodel and Permax but both made me violently ill and unstable at school (passing out constantly). When Dostinex hit the market, I switched over, same side effects but more spread out with the time release effect. I can't tolerate enough of the medicine to get Prolactin below 120 so having surgery at Stanford to remove the tumor and the need for the Dostinex. Tumor is still a Macro but has been on the Micro/Macro border for many years. Some important stuff I've gleaned from many doctors: -the high prolactin level and Dostinex can cause or worsen Depression. -Depression is treated with Dopamine inhibitors and Dostinex is a Dopamine antagonist, rendering treatment for Depression, ineffective at best. | F | 33 | 13 years 0.5 mg 1X W | 8/26/2010 | 3 | Pituitary Tumour | Before: unbearable migraines, loss of menstruation, breasts enlarged, depression, loss of libido, obscure dreams. After: migraines disappeared, menstrual cycle returned but severe cramps now and can last 2 weeks,returned libido, wake up in the mornings after taking it feeling terribly weak, obscure dreams, sleeplessness. | I'm not 100% sure what symptoms are actually related to the tumor and the dostinex or what's just me. I can't properly remember the details i think it was 1cm with prolactin 2000 or 3000. The first mri i got was distorted because of my braces and the second was only last year which showed slight reduction. Dostinex worked wonders it brought the prolactin down to 200 i think within a month and my agonizing headaches were cleared up quickly. The only major issue i've had is the painful and heavy mensuration that's crippling once a month. Origionally i was on 5gm twice a week but within the first 6months this was reduced to once a week because i couldn't handle taking two weeks off every month! I've been on it over 2 years now and everythings been going well but in the last weeks my breasts have began to swell and lactate and my headaches are returning. I'm rather worried that the medicine is no longer working but is that even possible? I would greatly appreciate any feedback on this. | F | 20 | 2 years .5mg 1X W | 8/10/2010 | 5 | prolactinoma | The first dose made me very tired the next morning, felt like a hangover, but nothing else. After one month i was fully adjusted to it, no more side effects, maybe mildly more tired the morning after i take it. My prolactin dropped from 300 to 18 in one month! on half a pill a week. Fantastic result. And i lost 5 pounds. I am very active all the time and over the last 2 years i had these couple of extra pounds i could not lose, and i have a strong suspicion it was the high prolactin. The weight dropped off as soon as my levels went back to normal. Also, improved sex drive (husband happy!). | worked great for me. My doctor said that for women that suffer nausea etc, it can be taken vaginally - so those of you that have more side effects may want to check in with your doctor. | F | 34 | 2 months half a pil 1X W | 8/9/2010 | 3 | Prolactinoma | Mood swings, depression, severe anxiety, cold hands (blue fingernails), increased levels of anger and aggression, OCD type-thoughts, hair loss, tendency to OD on booze and other (legal!) experiences which make me feel high. | My prolactin reading was approx 12,000 before taking this drug. Has reduced levels down to around normal for a man, but I am convinced it is playing havoc with my mood and mental well-being. Plus sides include severe weight loss so I am now down to my target weight, more energy. I was also prescribed this with testosterone replacement so not sure if that has played a part on my weird moods. Get very angry, then anxious to the point of shaking. Although I look healthier, inside I feel mentally very unwell. | M | 40 | 18 months 5 MG 2X W | 7/30/2010 | 5 | hig prolactin, for pregnancy | Hey, Sorry for interruption. I have the same problem with high prolactin like you. My level is 60 firstly then 47 and now 80..I hope to have a baby and am wondering to take Dostinex.Your experices inspire me a lot.Do you continue to take the medicine after the pregnancy or stop it? Is there any relationship between Dostinex and your little girl's unlucky disease? Is she ok now? Many thanks if you can give me some advices. Good luck,Sonia | F | 30 | 0 days 2X W | 7/8/2010 History | 3 | Depression, drowsiness, sever fatigue, anxiety, fat | I have been taking the medication for about 4 months and have seen my levels drop pretty fast, but not fast enough to have a cycle which i havent had in years. I want to have a baby but since i dont ovulate i dont know when or if that will ever be possible. this has just been a nightmare for me, but finding this sight helps. To see that there are others having this problem really helps me cope. I just dont want to take medication for the rest of my life. I really dont know why this has happened. Has anyone consider surgery to remove the tumor or know anyone who has with success? I just want to know what other option are available rather than taking this medication. | F | 30 | 4 months 3.5 1X D | 7/7/2010 | 5 | high prolactin levels | Nausea, dizziness, tiredness, exhaustion, depression, change in personaility,the day after i take it i feel like i'm hungover. | It did work well in terms of that it brought my levels down from 3000 to 30,i also got pregnant twice while taking dostinex the first time just six weeks after starting it, previous to that i had no periods for 3yrs so it worked really well. It keeps my body regular but i find the side effects hard to deal with espically the tiredness but the plus side is it does work. | F | 34 | 15 months 0.5mg 1X W | 6/29/2010 | 5 | Elevated Prolactin | EVERYONE NEEDS TO READ THIS!!!!!!!! PLEASE READ ON........ | THERE IS A LONG BLOG WITH THE SAME TITLE "EVERYONE NEEDS TO READ THIS!!!!!!!!" THE EMAIL ADDRESS HAS CHANGED WITH THAT BLOG, SO IF YOU NEED TO CONTACT ME, PLEASE CONTACT ME THRU THIS CONNECTION. SORRY FOR THE CONFUSION, I DONT KNOW HOW TO CHANGE THE EMAIL ADDRESS :) lol | F | 40 | 17 years 0.5 mg 1X W | 6/24/2010 | 2 | Pituitary tumor,Prolactin level:380 | Unbearable headaches, nauseus, exhaustion, mood swings, anger, dizziness. I've been out of work for 3 weeks now. I'm not able to function on this medicine. I've seen 2 different endocronoligists and a neurologist. They keep telling me there must be something else going on with me and that it isn't the medicine causing me to feel like this!!But all the research I've done on cabergoline I'm finding out that others are going through the same thing! I'm so frustrated and don't know where else to turn! I can't keep missing work! Is this something that will eventually go away? | I gained 12lbs in 3 days!! And I wasn't eating b/c I've been so nauseus! I keep having burning sensation in my chest(kind of heartburn). My endo ran more test yesterday on my pituitary and to check my prolactin levels since I've been on the medicine. Won't get the test results back until July 1st. I don't know if I can make it another 2 weeks of waiting! My PCP feels I should stop the cabergoline, but the neuro and endo both said no! | F | 28 | 4 weeks .5mg 2X W | 6/17/2010 | 3 | none | I have a question, I have been on this medication for about six months now. I have a relatively small tumor on my pituitory gland (9mm) and I think that I am just now starting to feel the effects of this medication. I now wnat to do things like excersise, watch what I eat, and I am now sleeping better. So my question is how long has it taken for most of you to feel this medication take effect. Thanks | M | 46 | 6 months 5 1X W | 6/14/2010 | 5 | Macroprolactinoma | Constipation (resolved by increasing fibre in diet), Energy levels reduce massively in the evening, morning after taking dose I feel a bit groggy | Taking Dostinex after being diagnosed with a 25mm x 25mm macroprolactinoma 7 weeks ago. Prolactin level at diagnosis was 14,750 which reduced to 4,500 within 12 days on the lowest dose. It's since reduced to 450 at last test having been on 500Mg twice per week. Sight tests also improving so I hope that means the tumour is shrinking too. I have had some side effects - constipation and feeling groggy the day after taking dose. Also find my energy levels in the evening plummet - hardly surprising though if my body is fighting to get better and a small price to pay for the results it produces. On the plus side I'm feeling much better now than I've felt for a couple of years - libido returning too which is a massive bonus. | M | 33 | 6 weeks 500 2X W | 5/22/2010 | 4 | Pituitary tumor (benign) | Early on-headaches, nausea, increased sex drive (difficult combo). Now, very sleepy, nausea. | I was first put on Parlodel and stopped after 1 dose- made me violently ill- vomiting every 2 minutes. Several years later, went back on (with reduced dosage) and suffered through the side affects until became pregnant with my daughter. When wanted to have a 2nd child, was put on Dostinex. 50X better than parlodel. But now, 4 years later, having trouble with sleepiness (literally ready to fall asleep while exercising), nausea and low blood pressure. I'm interested to know from others with these side affects how they dealt. | F | 36 | 4 years .5 mg 2X W | 5/4/2010 | 4 | Micro Adenoma | Tiredness and no energy, very bad Bloating, Forgetful and bad memory, Always Hungry which resulted in weight gain and i am finding it very hard to loose weight, PMS very heavy and very painful - i have to get other drugs to help with this, very low sex drive, painful breasts, slight depression but not too bad. | I have less heaches and my cycles have regulated which is great. My husband and i want to start trying for a baby and not sure how dostinex is during pregnancy. | F | 29 | 1 years 1X W | 4/26/2010 | 4 | micro adenoma | impossible to lose weight instead gains quicker, always tired, headaches, migrains,constipation, dizzy,low bp, acne,hair loss,cannot take stress , endurance level very low while sports e.g, swimming, running, jogging, skipping etc.very late orgasms. | i was diagnosed 4 years ago, and have been on dostinex since the past 3 years. Although i face quite a few side effects but my prolactin levels have gone down drastically, but when i stop taking it then it rises. | F | 24 | 2 years 0.5mg 4X W | 4/23/2010 | 4 | microadenoma | none. | I have a 5.5mm microadenoma causing hyperprolactinemia. I have been without periods for 4 months. After 5 weeks on this drug, I have a period! I am not looking to make more children, but I am excited that this shows I probably have a more normal prolactin level now (it was originally 110). So probably also my tumor is shrinking which is the best of news, and all of this with a very small dosage and no noticeable side effects so far. | F | 44 | 5 weeks .25mg 2X W | 4/21/2010 |