Comment from: Uzma 25-34 Transgender less than 1 month Caregiver Published: August 09

First I Thanks to Allah Dostinex is the best of best medicine ?? I highly recommend this My prolactin level in June is 128 ng/ml I just eat 8 tablets in one month Now my prolactin level is under range .

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Comment from: Kym 19-24 Female 6 months to less than 1 year Patient Published: November 02

Firstly, Dostinex is a dopamine agonist, not an antagonist as the article says. Dopamine helps inhibit prolactin, which is why itâ??s agonist effects are helpful in the treatment of prolactinomas. When starting on the Dostinex, I experienced postural hypotension (a change in my blood pressure when standing), which made me feel faint and dizzy. However, the medication has lowered my prolactin levels back to normal, saving me from having to undergo transsphenoidal surgery for tumour removal. I am thankful that there is a medication out there which can do this.

Related Reading: dostinex | dopamine | treatment

Comment from: Mary 35-44 Female 1 to 6 months Patient Published: May 06

My prolactin has been around 30 (because of stress). I took half pill per week for two months. My prolactin fell to 20, but I suffered depression. I had panic attacks and a constant feeling of fear, anger and sadness. It has been awful. Fortunately when I stop taking the pill, these feelings started to fade until they were gone. Now the doctor said i should try it again but I am terrified.

Related Reading: stress | depression | panic attacks

Comment from: Ronnie 45-54 Male less than 1 month Patient Published: August 19

I finally have a more full & better erection,oh and my sex appetite is back too. I would highly recomend this product. No side effects at all for me.

Comment from: Jeff 25-34 Male 1 to 6 months Patient Published: May 15

I was diagnosed with a 7cm prolactinoma just this March. It was discovered when I saw the opthamologist and was basically legally blind. Had a surgical resection of the tumor endoscopically via the nasal passages and my doctor was able to remove 80% of it. He's awesome and he saved my life! I have been on Dostinex (Cabergoline) for nearly two months now (0.5mg) twice a week and it appears to be working like a dream. My prolactin level was at about 2000 before surgery and it is now down to 23 as of my last blood test. Hoping this means the tumor is shrinking. I'll be having an MRI again at the end of June but my doctor seems to be really happy with the results of Dostinex. It's a great drug for treating these types of tumors. I do sometimes feel tired but I'd rather be a little tired once in a while and know that my prolactin level is approaching normal if not already there. As a 31 year old male, it was a bizarre feeling to learn I had a prolactin producing adenoma, but I'm glad this drug appears to be working. It is expensive, close to $300 for 8 pills but it's worth it.

Related Reading: prolactinoma | dostinex

Comment from: FedupandHungry Female less than 1 month Patient Published: July 30

I haven't been on the drug long enough to know if it is dealing with my prolactinoma. I am often queasy until about 2 pm and was slightly dizzy for the first couple of weeks. Have had some heart palpitations but had those before the Dostinex. Also experiencing a lot of fatigue but am on iron injections for anemia, so may not be dostinex related. Before I went on the Dostinex, I managed to bring my prolactin levels down from 795 to 424 (within normal) by eliminating wheat from my diet. Something to consider trying. Still eating rye, oats, barley and other glutinous grains. I live overseas and 8 pills cost about USD 40 here.

Related Reading: prolactinoma | palpitations | dostinex

Comment from: gemo 35-44 Female 10 years or more Patient Published: August 29

I have a lot of hair loss since using this treatment. Is this related to this drug ?

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Comment from: dostinex 55-64 Female 2 to less than 5 years Patient Published: March 12

when i first started takind dostinex was very light headed now ok i take half tablet twice a week

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Comment from: Grizz 35-44 Male less than 1 month Patient Published: January 17

After years of waning lidido, worsening depression and chronic fagigue i had my MD check my Testosterone which turned out was nearly non existant. In follow up we found Prolactin levels over 100 and a 5mm pituitary tumor. I started Testosterone injsections and within a week had increased energy, libido, and mood. Saw the Endocrinolgist who started me on Cabergoline. Been on it 2 weeks and though Libido back I dont have the energy to do much about it, to my wife's dismay. Seems like depression comming back too. I guess im wondering if its endogenous depression or side effect of Cabergoline. At this point am pondering re starting anti-depressant (Effexor worked well in past to an extent) and hoping to normalize hormone levels. Time will tell i suppose.

Related Reading: depression | effexor

Comment from: Edith 45-54 Female 2 to less than 5 years Patient Published: June 22

I take this medication because I have no choice. I fell tired all the time. There is some days that I just feel like lying down. I don't have the energy to do anything. I have headaches at less 3 days a week.I experience tenderness on my breast. I gained weight since I'm taking this drug and I take only .25mg.

Comment from: 35-44 Male 1 to 6 months Patient Published: January 05

High levels of prolactin had killed my sex drive and started effecting everything else. Needless to say my hormones were out of wack. My doctor prescribed Dostinex and what a change. My sex drive is back and my hormones are in balance. It's worked for me and I recommend you ask your doctor about it.

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Comment from: Chase 45-54 Male 5 to less than 10 years Patient Published: November 13

Extremely satisfied with the drugs performence but I have to wonder why it was discontinued by its maker in the U.S and when you call them you get no explaination.The only place I have been able to find this is overseas at $30 a pill. The company offers no subsitute and Parlodel and Promax cause me bad side effects.My Docter will no longer prescibe this drug as rports indicate Heart damage from it.Any help out there would be greatly appreciated.

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Comment from: lorette 65-74 Female 5 to less than 10 years Patient Published: October 22

severe dizzines tired hi blood pressure ringing in the ears tired sleeplessness

Comment from: Stacy 35-44 Female 5 to less than 10 years Patient Published: October 12

In '95, I was diagnosed with high prolactin after seeing a doc because I was lactating though not menstrating. My endocrin doc said I could never have children and put me on Parlodel. I took one pill & became so ill I refused to take any more (vomiting and severe head pain). I went several years w/out menstrating. After I was married and wanted a second opinion on ability to have children, I had my prolactin levels tested again. They were high and diagnostics found a pituitary tumor. I asked my doc about the Parlodel but explained I did not like the side affects. He said that's all there was. I stuck it out and eventually had a baby girl. When I decided I wanted my 2nd child, I asked another Gynocologist (female) about a Parlodel alternative. She said of course, Dostinex. It has been quite a blessing. Shrunk my tumor to almost nothing and I actually take less than prescribed (due, in part to cost but also because it's difficult to remember to take only a few times a week). There is hope for babies on Dostinex. I also take the generic now and it works fine for me.

Related Reading: parlodel | dostinex

Comment from: 25-34 Female 1 to less than 2 years Patient Published: July 28

had excellent experience with it. no nausea or any side effect experienced so far.

Comment from: Navarch 25-34 Male 2 to less than 5 years Patient Published: June 13

I have had a cerebral operation (prolactinoma) at april 2007 (prolactine level is over 6500) and upto now i am still using dostinex 4x2 total 8 pcs 0.5mg, 4mg/week but prolactine level is still 269ng/ml (monomeric is 236, macro+big is 33) and it should be normally max 15. As you can imagine the level of decreasing is very very slow. I am using now max.dosage. But i think it is the best for this,and we have to use it unless there is better.

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Comment from: Pansfolley 35-44 Male 2 to less than 5 years Patient Published: April 16

I was having milk production. Being a male, that was very wrong. They found that I had a pituitary tumor about 4 years ago. I was placed on the medication because I didn't want to do the operation that the doctor said I should have done. I can't say it was just the medication, but the tumor is now gone. It has completely vanished. My prolactin levels remain between 5 - 7 which for a male is just fine. It did make be a bit sick when I first started using it, but it was so worth it now.

Comment from: 35-44 Female 5 to less than 10 years Patient Published: April 07

I was diagnosed with prolactinoma around 1996. I have been taking dostinex for about 5 years now and my prolactin level went from 75 to 20. I did have some side effects when I first started taking it, nothing major. Now I have no side effects. My tumor has not grown at all. I do still lactate, but not as bad as before the dostinex.

Related Reading: prolactinoma | dostinex

Comment from: [email protected] 25-34 Female 5 to less than 10 years Patient Published: April 06

I was diagnosed with a pituitary tumor when I was 15 years old. Can you imagine what my parents thought when I was lactating at 15? My GYN prescribed Parlodel. I tried it for 2 years and it made me horribly ill the entire time, and it never lowered my prolactin level. Finally, I was referred to an endocrinologist. He put me on Dostinex. It is well worth the price. For a couple years I had no insurance and could not afford the medicine. After I got insurance again and began the dostinex again I could tell an amazing difference. When I was first diagnosed at 15 I had never had a period (a secret I managed to keep from my mother). I was told at that time that I would never have children. I put the hope out of my head then and decided I never wanted them since I couldn't have them. When I was 22, to my amazement, I became pregnant. My husband of course took all the credit for "curing" me. We now have a 4 year old son. After I had my soon, my tumor did get worse but I am still taking my Dostinex and my prolactin levels are normal, they used to be 1,300-1,400. Dostinex is they best thing that has ever happened to me. For all the women who are told you can't have children because of this, keep believing and keep trying! If it happened to me it can happen to you!! Good Luck!!

Related Reading: parlodel | dostinex


Medical Editor: John P. Cunha, DO, FACOEP

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