Question---

I am on a low-grade insurance plan presently and must pay out of pocket for the Cabergoline.

Local pharmacy has it for $270 for a one-month supply (8 .5 pills). My insurance plan gave me a rebate card that brought the price down to $113. My doctor suggested the Costco pharmacy.

Any tips on how to get it for less?

Thanks

Hey everyone I have a question regarding everyone's prolactin levels when they were first diagnosed. My prolactin is a bit elevated when they did an initial blood test for some gynecomastia I developed (35 ng/ml; the normal being 8-12).

I had an MRI done and since it was relatively low compared to others, my doctor didn't think they would find anything. But it turns out they did find a pituitary tumor about 1 cm or an 1/2 inch. My General practitioner seemed to think it was prolactinoma and referred me to an endocrinologist to see whether or not he wanted to prescribe medicine or surgery.

When I got to the Endocrinologist he seemed to think that my gynecomastia was simply a coincidence, and he thinks my tumor could be non secretory. After all my estrogen levels and my testosterone levels were in a normal range according to him. Right now I'm waiting on blood work to see whether or not my pituitary gland is malfunctioning because of the tumor. I'm not sure whether or not this could indeed be a prolactinoma but I was pretty convinced since I am still getting gynecomastia.

Initially I was taking a weight gainer supplement (optimum nutrition pro complex gainer) and working out, and both doctors believed it to be related since they thought the gainer could contain steroids. I stopped use after and they told me to come to them if my symptoms persisted. After 2 weeks staying off I went back to them, and that is when they first ordered me to get bloodwork done.

I have now been off the supplement for almost a month, and I still am developing gynecomastia, and now I just finished my second blood work screening and am awaiting an answer from my endocrinologist.

Is it possible for my pituitary tumor of 1 cm to be secreting prolactin at relatively low levels (35 ng/ml ) compared to prolactinomas that secrete in the 100s or 1000s?

I forgot to mention I am also 20 years old.

in reply to jrandall11
my prolactin level was in the hundreds when I was first diagnosed of 6mm. I can't remember exactly because it was a long time ago, sometime before you were borne. More importantly, it's not just the hormonal effects you need to consider but a pituitary tumor if left untreated can grow and press against your optical nerves and damage your eyesight.

in reply to craig65
I was shocked to read that the price for Cabergoline in your pharmacy is $270. It looks to me like both you and your insurance are being ripped off. The cost of most of my medicine is subsidised by the Australian Government but the pharmacist puts the full cost amount on the label. In the case of Dostinex that's $65.44 for a bottle of 8 X .5mg tablets made in Italy by or for Pfizer. Sometimes I have had the generic version called Tinexa from Sigma Pharmaceuticals ( Australia ) Pty Ltd. also for $65.44. These prices are in Australian dollars and an Australian dollar trades for 85-90 US cents. A few years ago amongst the spam e-mails were lots of offers to sell "cheap" Cabergoline for around $90 from Mexico.

I was initially on bromocriptine which made me feel sick and then changed to Dostinex when it first became available at .5mg twice a week and I was free of side effects. The tumor has shrunk enough to be undetectable in a scan and I am now on .5mg of bromocriptine once a week. I noticed that early in this list there are several reports of severe side effects from people using Dostinex and these seemed to be associated with very high doses. Wikipedia has an article on Cabergoline and I already know that Wikipedia is not an authority on anything but as it agrees with what I know on the subject I think it is worth a look, especially the section on dosage.

Hello all, I am new on this blog and I am so happy to see so many people are here to help out.
I am 43 yrs and have suffered from Prolactinoma for last 8 years, thats when it was initially dx. My prolactin levels were >1000 in Jan 07 and I was put on Cabergoline and within few months it came down to around 125-150 range. I had Macroadenoma >2.2cm if I remember correctly...decided to go for surgery after researching the best EndoNeuro surgeon in Canada..even went to Boston to consult with Dr.Laws and he recommended one in Toronto.
After Surgery was done in 2010 Mar...my Prolactin levels went up to around 500 range and they found later that after they removed the tumor that they could see, they found same size tumor behind my eyes where they can't access and it could be fatal.
Recommended to go for Radiotherapy after consulting different options and knowing all the SE that might come later.
Still after many years of struggle no change in Tumor size and still dealing with high prolactin levels...still on Cabergoline 1 tab twice a week with all the SE...feel like zombie, dizzy spells, severe constipation, no energy because of low T levels...recently tried Androgel and Prolactin levels went up by 50%.
My sincere advise would be do your due diligence and make sure you get the right doctor and don't be too optimistic...If you r lucky than it might be succesful ...good luck

Hi everyone,

This is my first post in this thread which I read last fall and am glad more that there is recent activity on this thread.

I don't have time tonight to post my history but will hopefully be able to right some more this weekend.

Reading what you all have written is both heartening and scary. I was diagnosed a year ago with a 4.5cm tumor with prolactin of about 6400. I take 4mg of Cabergoline a week and I don't know what it is like to be not experience this really.

A few responses:
Craig65 - If you are located in the US, depending on your state, there are now some great drug plans on the ACA marketplace. I just signed up for a platinum plan which, while it costs a bunch, ends up saving me so much cabergoline and androgel that it makes up for the cost. Also, check out http://www.goodrx.com/ they have prices listed for lots of different pharmacies in different areas and will allow you to compare prices. At one point there was a $5 off androgel coupon I saw there too (as though that helps at about $400 a month).

Jrandall - Most pituitary tumors are measured in mm not cm. If you have a 1cm prolactinoma it is not something to ignore. Prolactin levels, from my understanding, can vary a great deal from tumor to tumor. Here, as elsewhere, size does not really matter. I was diagnosed at prolactin of 6400 with a 4.5 cm tumor. While the tumor has shrunk a bit it is still rather large yet my prolactin has dropped (currently) to 817.

Thank you all for posting. More to follow in the coming days...

Also, apparently I have lost the ability to write "write" instead of "right." A clear indication that it is time to try and sleep!

What do you guys do to sleep? At this point I take 20mg of melatonin, sometimes something stronger, and hope I get some sleep. Currently this is one of the biggest problems I have. I can't sleep, when I do I wake up feeling like I have not slept, it takes an huge amount of coffee to get me going, then the caffeine hurts my sleep the next night again. Has anyone found any solutions?

I promise more proofreading in future posts.

Hi guys,

I'm also new to this forum and I was surprised to find one related to prolactinomas. I was diagnosed just back in March with a 7cm prolactinoma which, according to my neurologist (who was incredibly awesome and saved my life) is all the way to the right on the bell curve of prolactinoma size. 12 hours of surgery and 8 days in the hospital later and the tumor is 80% removed. It was everywhere and there is still some wrapped around the coratid artery but I have also been on 0.5mg of Cabergoline twice a week.

My prolactin level before surgery was 2000> and as of a month ago, it was down to 23. It looks as though the medicine appears to be working.

Aspenser - Yes it can definitely vary with respect to prolactin levels. By most other prolactinoma standards, mine being 7cm was considered huge and over a 2 month period, I lost my vision which, thank God, is back now, though my prolactin level at its highest was 2000 and is now 23 or less.

This has been a life-altering experience for me. I often struggle with depression and I feel sad about the world. Then again, I've always been a complex individual so that can also account for some of my sensitivities. I highly recommend Standard Poodle therapy as I have 3 and they tend to make you feel better about life because they're happy 24/7.

Jeffdn:
Glad to hear your surgery was a success!

Hi guys!

I'm 35.
Having migranes about 6 years and also neck pains and eye pains and even back pains. I visited 4 neurologist, having 3 MRI and no one can diagnose a tumour. Also, for a many years I had sleep dreams about something strange in my head. Two dreams were about loud thunder in the center of my head. I waked up after that and was very scary. Another dreams was I'm in hospital and the doctor says "You have a tumor in your head and you needs a surgery". I started to cry "No, no!" and wake up with the real tears in my eyes... I started to have problems on my job because of migranes. It usually started at 13:00 PM and then increasing till the evening. The peak of the pain was in the evening. So I have to take different drugs to get out off pain - aspirine, ketorolak, etc... Pain usually dissapeared only at night after the sleep. In the morning I can go to work and felt well for some days and then migranes returned again... I also wanted to sleep every time, every day and was very angry to my family because they can't understand why I want to sleep.
One day my headaches starts to change - they become more strong having another spectrum. I went to another neurologist (5th!!!) and she ask me to go to MRI again. So prolactinoma is diagnosed now. It was about 1,7x1,2x0,9 mm. I started to take Dostinex (cabergoline) 500mg two times a week (1000mg total). After a 6 months it shrinks to 1,2x0,9x0,8 mm. After 12 months it
does not shrinks any more. It's stable. My terrible headaches has gone. My prolactin level decreased from 15000 to 500, but normal is 413. And my libido is very high now. It's very sad about my lost years with non-diagnosed tumor... So, now I'm glad to spend every day of my life. But what is the future? Thank you all for your stories.

Soryy - not mm, but cm.

Hey guys, would like to share a positive experience. Was diagnosed 4 years ago with a 7mm prolactinoma. Was on 2 pills a week for 3 years. Had quite the emotional ride but it's levelled out now. After a year the 'noma didn't change in size, but my prolactin levels were around 0 and testosterone was quite high.Was then dropped to 1 pill a week. I just had my first MRI in 2 years and my doctor just told me the tumour is gone!, I was so shocked. I need to stay on cab till my next apt in August and he'll ween me off the medication. I'm curious what side effects I don't notice anymore will go away.

Hello everyone! Sorry for jumping in like this in a post. I'm totally new to the website. Just wanted to know the opinion from other people if they consider my symptoms to be classic prolactinoma. For info i'm a 22 year old male. Ok so my symptoms are loss libido like there's an interest in women but the connection is just not there anymore to give me wood. I already been diagnosed with low testosteron. I also had migraines, headaches, weird sensations in my face especially behind my left eye and like an empty feeling in my head the past 3 years. Had numerous anxiety attacks and I'm an anxious person in general. Neck stiffnes, pain, cracking of the neck etc... easy irritated and grumpy. Tired 80 % of the day, brain fog getting worse and worse. Also find myself not knowing what i'm actually doing some moments. Depression or lack of motivation towards most things in life. Like zero body or facial hair and real hard time gaining strength and muscle at the gym. Feeling weak in my muscles most of the time. Also there's another thing I read that when a man orgasm prolactin is released to make him loose interest and loose his erection. That same feeling you have at that moment is basically the same feeling I have all the time. Even if the hottest women would walk right in front of me it's just like no connection. It feels like I just had sex and that I can't go again no matter the stimulation. This is the one reason why I believe this has with my prolactin levels to do with. I have done a prolactin test now with most other hormones and I'm waiting for results. I'm happy to post them if anyone is interested to see them. I'm just worried that I might have slightly elevated or an early stage or something and the doctor will let it slip by. I mean I have all these symptoms and I really don't want to be wrong diagnosed. Thanks alot for anyone reading and helping me out! It makes me super happy actually that i am not alone and when i read the posts here i feel for all of you. I feel having this when your 22 and should be chasing girls aint that fun and man reading people here going with this stuff for years getting wrong diagnosis. I seriously think I would kill somebody. You guys are sucha strong people and my respect to you.

Hey dougydoug I feel your pain man totally. I don't have any doubt that it's classic prolactinoma as you say I've felt the same for over 2 years now, I'm 36 and married so at the stage of wanna start a family soon but how can that happen when I've no desire or even when I do it doesn't happen anyway. I don't know if it's tumour or drug related (I'm on cabergoline) but all I know I'm sick and tired of it, I'm gonna push for surgery my next endo appointment hopefully then my prolactin levels would go down and my testosterone levels up.

Ps my wife has been amazing through all this which really helps.