hello
I am very scare since i am new to this kind of disorders.please for those with experience,could you tell me how it was ?
Nene what are your symptoms?
back pain and foot swollen
Hi,
I have a prolactinoma too, I know its all really scary initially. I was diagnosed about 5 years ago, with a macro adenoma, I think it was about 11mm. I was started on quinagolide which reduced my prolactin levels but on the second MRI scan the tumour hadn't shrunk. All we did was increase my medication dose and 6months later it was no longer visible on MRI!
We tried stopping my medication after 2 or 3 years (as in some people it completely resolves), but my prolactin level was high again so I am back on quinagolide.
Which medication have they put you on? I do tend to get some side effects after starting on them or increasing the dose but it does improve after a few weeks.
Chutney xx
they put me on Bromocriptine but i had side effects which back pain and foot swolling.My doctor told me to stop it until i see endocrinologist again?
I would do as your doctor suggested and stop them. When will you be able to see your endocrinologist again? It must be reassuring to know the signs you have are just side effects and hopefully they will resolve pretty quickly.
I was put in cabergoline at one point as quinagolide was out of stock and they made me feel awful so hopefully there will be a different medication that will suit yo u better
i am not sure when i will see the endocrinologist .I hope they give me good medication because now i have spent a week without being able to do anything for myself.
Hi sorry for late reply, this went to my junk email. I found it difficult too as I didn't know anyone who had the same thing so no one really understood what I was going through, and I'd never had any health problems before. I'm not sure where you live but I spoke to the pituitory foundation helpline nurse. Could you speak to a counsellor? I took a few months off work to begin with as I was feeling really tired and tearful. I think it was a combination of the medication side effects and being worried. I hope you see your endocrinologist soon if you haven't already and once you're on a different medication for a while you should feel alot better.
hello. I've been on the cabergoline for a couple years now. recently, my Endo increased it 2 half a tablet 3 times a week and I started having swelling behind the knees and in both legs and I started having problems with my feet. I did not realize it was the cabergoline causing this. my primary care increase me to one tablet twice a week because he felt the levels were too high. after 3 weeks on the higher dose I started to have itchy creepy crawly sensations in my legs and arms and I could not sleep at night. I also started having really bad anxiety and panic attacks which I never had before. and then I started having intense hypersexuality and I've been divorced for 6 years and I don't even date. I also had joint pains all over my body.The feelings were so intense that I ended up in the hospital. none of the doctors could figure out what was happening. with days of not being able to sleep I was able to do research online and found some articles where people we're having really bad anxiety on cabergoline. I looked at the side effect profile and everything I was feeling is a side effect from the drug. I've been on the medication for a couple years at a low dose so it never occurred to me that it would be this medication causing the problems. my endo told me to stop the medication for two weeks to see if I feel better. I am now off the medication for almost 3 weeks and I don't quite feel myself. I still have the jittery and tingly in my legs. I am praying that everything goes back to normal as the symptoms are horrible. I am in the US and I am also a pharmacist but when your body is going through thousands of changes it's hard to pinpoint what the cause is and because I was on cabergoline for so long it took me awhile to realize it was causing these issues. has anyone else had any of these side effects and how long did it take to go away after stopping the cabergoline?
Hi sorry that you're going through this it sounds horrible. I've just come out from endocrinologist appointment. I'm currently on quinagolide but it s not working well to lower my prolactin, so I may go back to cabergoline as apparently its stronger. I used to take cabergoline from 2009-2013 when I became pregnant and then stopped for a couple of years as breastfeeding. I don't remember having adverse affects when stopping though not sure as I felt rubbish from pregnancy symptoms. My mood and anxiety definitely worsened after pregnancy and I haven't gone quite back to normal. I'm not sure if you can get dopamine agonist withdrawel when stopping, I have heard of it but not sure if it effects people on this kind of dosage? I hope you feel better soon.
And like you said there are lots of different factors, it's hard to know what's what. Having high prolactin affects your mood too. I also got really strong sexual feelings when on my highest dose as previously had no sex drive then I became pregnant, by my partner!
Hi Charlotte,
I am also on quinagolide, stopped it briefly a year or so ago and my prolactin levels came back up so restarted. For the week or so after stopping it I felt horrible, it did coincide with a very long and busy week at work but I have never felt so down. I mentioned it to my endocrinologist and he said it could potentially be related. I luckily felt better after a couple of weeks but I am thinking if I stop it again I might gradually reduce the dose first
Hi, stopping it gradually sounds like a good idea then definitely. Do you feel OK on the medication and is it controlling your prolactin?
hello, are you feeling any better?
yes but my foot is still swollen
I feel OK on the quinagolide most of the time, if a miss a dose and then restart or after a dose increase I get nausea and low blood pressure. Currently on 150ug a day and it's controlling my prolactin
what are you doing for the swelling? are you soaking them or elevating your feet. did you notice any decrease in swelling over the past 2 weeks?
I put my foot in worm water and salt.It is increasing instead of decreasing and hurts.I cant wear any shoe expect slippers.I no longer know what to do .I feel like depressed now.I am always crying things have become too much. Thank you very much people for the care .
i'm sorry you're going through this. while you're waiting to see an endocrinologist, see if you can see a podiatrist and maybe a vascular doctor. they may be able to help or give you something to take away the swelling. how long have you been off the medication? I pray that everything gets better for you soon.
I stopped taking medication for week but now am back to it.My endocrinologist said the swelling for the leg has nothing to do with the medication that i am taking.