what meds are working for you?
borpy
Posts: 38
I recently started dostinex (cabergoline) and am finding it a lot better than bromocriptine. I only have to take it twice a week and then in a few months once a week so I only feel sick one or two days instead of every day. I feel really positive about this medication. What is working or not working for you?
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I need more blood work done next month so I'm stil not taking anything to regulate the prolactin levels. I am taking Desmopressin nasal spray for my ADH deficiency though, and since I started it last June I have gained 10 more pounds. Coincidence or no? Not sure but I know I am eating about an average of 1600 cals daily and I should at least be maintaining if not dropping at least 1/2 pound a week. Which I am not. Is the dostinex helping with your weight loss or havent you been on it long enough to see? Hope it helps you.0
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I haven't been on it long enough yet, but i will let you know if it helps my weightloss.0
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Hi...I have a personal question for....sorry...I havent had bloodwork done for about 6 months so I dont know what my prolactin level is at now. But , I have been having unusual symptoms that Im a bit afraid of. For one I cannot lose any more weight no matter what kind of food I eat or how much I exercise. Two: my breasts are so sore I cant touch them and I havent had period in about a year. Three: my waist line is nonexistant....my figure has completely changed from what it used to be. I have always been bottom heavy with large thighs and butt. Now, I fit in the same size pants I have been in but I have sooooo much excess flab around my waist! Its terrible ... Im going to see my endo at the end of the month but just wondering if my levels have risen and causing these changes? Thanks so much for listening!0
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sorry for not getting back to you sooner. My computer has been acting weird and I haven't been able to post in this group for whatever reason.
As for your question.
All those things happened to me. I haven't had a period in a year and I'm not yet 30. My breasts would get so sore that wearing a bra was impossible, and I started gaining weight like crazy. It was very scary, at first my doctor had me checked for diabetes, hypothyroid, and breast cancer, then thought maybe I was entering menopause super early. All very scary things. I think the best thing is to get your doctor to check for all those things as well as check your prolactin, estrogen, and testosterone levels. It's best to rule everything out. And if something comes back ambigious get it tested again. I'm also a firm believer in second opinions and having a list of questions prepared ahead of time. If your doctor has planned to spend 5 minutes talking to you and you have an hours worth of questions you stay for an hour. I always try to keep in mind that knowing about my health and understanding what my doctor is telling me is my right. It might even be a good idea to bring a patient adocate with you if you have those where you are.
As for weight loss, I know it sucks but you really have to work three times as hard for the same result. In my house there are 3 other ladies trying to lose weight and our weight loss plans all look entirely different. For me I try to eat well but I always make sure that i can have some sugar once a day, and I have to work out (walking, weights, swimming) for 2-3 hours every other day and walking at least 40 minutes every day. doing that I get the same results my mom gets from just eating less carbs, or that my sister gets from jogging. And sometimes it sucks, sometimes I'm on my 3rd hour of activity and I'm tired and I just want to be sitting watching cartoons, but it passes. The scale will keep going down, just VERY slowly, but still down That's what I try to focus on.
I hope this helps, and I hope that good news comes from your appointments.0 -
Dostinex Update:
Well I've been on dostinex(cabergoline) for a month now and have figured out a system for not feeling so sick. It still makes me dizzy and nauseas but gravol takes care of the upset stomach and taking things easy for the day relieves the dizziness. It is a little hard to get used feeling under the weather two days a week but it's better than 7 lol I like to plan stay at home activities like movie marathons for the day. As of yet no sign of my period but here's hoping. I have 2 more months before i go back to my doctor but I will update again in a month.
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I haven't been put on any meds yet for my prolactin levels. Since I also have hypothyroidism, my PCP thinks that may be giving me high prolactin levels, so for now I am just on thyroid meds. However, I do go see an Endocrinologist in August (earliest appointment for a new patient), and I'm not really sure what he will do.
Anyone else have this problem?0 -
A quick update: I'm going to the doctor August 1st but I have already noticed that the dostinex is starting to work. It's been almost 3 months and I'm hardly lactating at all! The dostinex still makes me dizzy and kinda weak on the days that i take it but the nausea has gotten better. And for me some of the best news is that I am finally losing weight! I've lost 20 as of today since april 1st. All the hard work and eating better is now having an effect. And since the meds only make me sick 2 days a week I can still work out pretty hard.0
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Well I go see my doctor tomorrow, but the good news is that I got my period on saturday. My prolactin has gone down enough that it's back. I'm pretty happy
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well I've been taking Dostinex for 8 months now and I have to say I am still happy with the results.
I went to the doctor today and although my levels are still high they are nothing like they were and i'm finding I have more good pill days than bad.
I take it twice a week and am usually able to at minimum go to school and some days I can exercise and have a totally normal day.
My levels going down have also helped my body to lose weight, and I find I have more energy to go to the gym which of course also helps me lose weight.
I've hit a plateau and my doctor suggested going on a low carb diet like paleo but not as strict as atkins(which I've done and only lost 10lbs). So I'm starting the Paleo diet, I'm in phase one so I can have 3 non paleo meals and I'm hoping that'll make it easier than atkins to stick to. Although Atkins really did help me to start eating WAY less processed foods.
So, so far so good.
I'll update again after I've been doing Paleo for a few months. 0 -
Hi, just wondering how everyone is doing. I'm on Bromocryptine. I like it better than Dostinex. I've had hyperprolactinemia & hypothyroid for about 15 years. Nice to connect with others in the same boat!0
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Hi, just wondering how everyone is doing. I'm on Bromocryptine. I like it better than Dostinex. I've had hyperprolactinemia & hypothyroid for about 15 years. Nice to connect with others in the same boat!
Hi Group! I am so happy to see this topic exists here. I am struggling with pituitary macroadenoma (prolactin) - also 15 years - and now have hypothyroid and just experienced adrenal dysfunction. I've been experiencing severe adverse reactions to Cabergoline since starting it 6 months ago and I thought I was getting used to it until a set back a couple weeks ago. Sometimes I feel like I'm moving 5 steps forward for months on end only to go back to the starting line in a wink of an eye. Fortunately, with the help of the Cabergoline, my prolactin level has greatly reduced. And, with the help of hydrocortisone and levothyroxine, I've been able to loose almost 40 lbs in the last 6 months (lots of water retention, mostly). But, now I see lots of yo-yoing in my weight. I'm working hard to consume 1200 calories. Yet, just like a lot of the posts made in this group, I often see my weight go up for a long time before it returns and looses just a little. It's frustrating, especially since exercise and my basic activity level isn't easy for me to do right now. Any words of wisdom? (Thanks!)0
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