Aa
How long does dostinex take to work?
I have recently been diagnosed with a 4mm prolactinoma and was wondering how long dostinex takes to start noticeably relieving the symptoms of a prolactinoma? I am taking 0.25mg of dostinex per week and have so far taken two doses. Also since I first started feeling ill which lead to this diagnoses I have been experiencing daily nausea and am wondering if anyone else with a prolactinoma has experienced this? My endo has told me it is not the cause of my nausea although I still wonder as I would think any hormonal disturbance could cause someone to feel sick although all other tests including some for other hormones have been within normal range.
Anyways thanks for reading! :)
Anyways thanks for reading! :)
If you have a prolactinoma and you are off meds, the tumor can and will grow. So yes, now you don't have medication side effects but you may/will potentially have a worse problem later on.
The side effects are troublesome - the doc should adjust you and you should be on a dose so that you can minimize them. Also eating with the dose, taking it at bedtime etc. can help.
There is also parlodel to try. I hope at least you are getting monitored on a regular basis so your hormones and tumor are being watched.
The side effects are troublesome - the doc should adjust you and you should be on a dose so that you can minimize them. Also eating with the dose, taking it at bedtime etc. can help.
There is also parlodel to try. I hope at least you are getting monitored on a regular basis so your hormones and tumor are being watched.
Also failed to mention that when I found out about dostinex myself by looking it up...as I was at a loss on how to stop my suffering and was cking everything myself nearly 2 yrs later and saw this info and asked dr to take me off it. Within one month headaches stopped completely as well as tinnitus and heart feelings reduced. Ive got to forgive and forget to move on. But my pain and suffering has chged the course of my life.
Its 1/14/15 and I see your comment from 2011. I hope your nausea got better and your prolactin level down. I was put on dostinex 2 yrs ago and 8 days later starting having cluster headaches...20-25 a day...tinnitus..feeling my heartbeat...tingling in legs..increased blood pressure. Dr said dostinex did not cause any of my symptoms. Never thought to look it up myself thru FDA on dostinex. Did so and in clinical trials 26% of patients stopped dostinex due to headaches and nausea. Also says dr needs to do a echocardiogram before starting patient on dostinex to be sure they did not have heart valve problems and blood pressure needed to be in control before starting dostinex....and caution needed to be taken with certain blood pressure medication interaction with dostinex. He honestly did not know this and thought it was only when the patient was taking 2mg a week. The normal dose is .25 twice a week. I suffered all this time because my dr did not know this information. When medicine came out in 1996 it was more about nausea and headaches and causing heart valve problems on large doses but in 8/11 I believe the FDA made a change to include all doses of dostinex due to reports of causing heart valve problems on even .125 and causing headaches and nausea. Recently went to heart dr and I now have 3 leaky heart valves. Also corgard had a moderate interaction with dostinex and they left me on both for a yr and I now have a mega cistern magna and enlarged tonsil in the brain. I am blown away and broken....:( all because my doctor did not know of new update in 8/11. Pull up fda information on label and letter and you will see it.
Rumpled is right on. For me it took about 2 months for the medication to kick in. Also the side effects lessened in about that amt of time too. I am back on Dostinex right now and I have found that taking it right before bed with a little snack really helps to reduce the side effects.
I would wait for the pituitary doc. Your GP cannot interpret the tests and you need the proper instructions for the tests and you need to do tests over time and properly.
Prolactin can still make you feel really lousy - I had that type of lesion as well.
Prolactin can still make you feel really lousy - I had that type of lesion as well.
I will definately try and get an appointment with the pituitary endo as soon as possible. Could you suggest any other tests I could get my gp to run in the mean time that might be helpful? And yeah I really want to treat the cause of my symptoms but so far the prolactin is the only thing that has been consistently elevated and I'm hoping that the meds will take care of it and my symptoms but as time goes on I start to lose faith and it difficult to stay positive when I feel sick everyday all day and no one can tell me for sure what is wrong :(
Get on the waiting list for the specialized endo please - you will need that type of endo for the monitoring that you need - and that endo will know more about the medications and all.
Thyroid issues can cause lactation - but the *stress causing lactation* comment just tells me that endo is out of her league - she/he does not know pituitary disfunction. The elevated cortisol should be looked at - that may be Cushing's syndrome (that can impact the thyroid - I know this since I had that as well).
It can take time before the meds kick in - but you have to make sure the right disease is being treated as well. Do get on the list for the other type of doctor.
Thyroid issues can cause lactation - but the *stress causing lactation* comment just tells me that endo is out of her league - she/he does not know pituitary disfunction. The elevated cortisol should be looked at - that may be Cushing's syndrome (that can impact the thyroid - I know this since I had that as well).
It can take time before the meds kick in - but you have to make sure the right disease is being treated as well. Do get on the list for the other type of doctor.
Hi rumpled,
Thanks for the reply :). i have been getting copies of everything that has tested for, which have included ACTH, prolactin, IGF-1, cortisol, free testosterone, SHBG, DHEAS, FSH, LH, oestradiol and progesterone along with LFTs +E and TFTs - although ive noticed with all TFTs T3 has not been tested once and it makes me wonder as i have been experiencing tinnitus which i have read can be associated with thyroid disorders?
From reading over my results the only abnormalites i can see is that one of my cortisol readings were evalated at 1131 nmol/L (160 - 650) but i think it may have been due to the time it was taken (9am) and the medication i was on at the time (BCP) as i had the cortisol retested at 7:30am after a month off of BCPs and my cortisol was back within normal range at 620.
The only other abnormality besides the elevated prolactin (which has been slighty elevated since the first time it was tested but was told it was most likely due to stress), is the SHBG which is borderline low at 20 nmol/L (20.0 - 110.0). I am also unaware if my reproductive hormones at within the normal range as im not sure what phase i was in at the time of the test, but when I read through the levels of each phase and compare it to my own levels atleast one of the hormones is off, but I've been told it is normal?
I also made sure i had the insert that comes with the med to read and talk to the pharmacist as to what is the best way to take it because my endo said it can cause nausea and i wanted to try to minimise the side effects to try not to add on top of my existing nausea. For that reason it is hard for me to tell whether i am sick because of the meds or it is just the same sickness from before so i will give my body a few more weeks to adjust a see if it relieves any symptoms.
Unfortunately my doc is just a regular endo, because she was the only one that could see me in a reason amount of time rather than the 6 month wait to see one that specilised in pituitary problems (didn't really feel like waiting 6 months to be told its got nothing to do with your symptoms lol).
Anyways, thanks again! It is really appreciated. :)
Thanks for the reply :). i have been getting copies of everything that has tested for, which have included ACTH, prolactin, IGF-1, cortisol, free testosterone, SHBG, DHEAS, FSH, LH, oestradiol and progesterone along with LFTs +E and TFTs - although ive noticed with all TFTs T3 has not been tested once and it makes me wonder as i have been experiencing tinnitus which i have read can be associated with thyroid disorders?
From reading over my results the only abnormalites i can see is that one of my cortisol readings were evalated at 1131 nmol/L (160 - 650) but i think it may have been due to the time it was taken (9am) and the medication i was on at the time (BCP) as i had the cortisol retested at 7:30am after a month off of BCPs and my cortisol was back within normal range at 620.
The only other abnormality besides the elevated prolactin (which has been slighty elevated since the first time it was tested but was told it was most likely due to stress), is the SHBG which is borderline low at 20 nmol/L (20.0 - 110.0). I am also unaware if my reproductive hormones at within the normal range as im not sure what phase i was in at the time of the test, but when I read through the levels of each phase and compare it to my own levels atleast one of the hormones is off, but I've been told it is normal?
I also made sure i had the insert that comes with the med to read and talk to the pharmacist as to what is the best way to take it because my endo said it can cause nausea and i wanted to try to minimise the side effects to try not to add on top of my existing nausea. For that reason it is hard for me to tell whether i am sick because of the meds or it is just the same sickness from before so i will give my body a few more weeks to adjust a see if it relieves any symptoms.
Unfortunately my doc is just a regular endo, because she was the only one that could see me in a reason amount of time rather than the 6 month wait to see one that specilised in pituitary problems (didn't really feel like waiting 6 months to be told its got nothing to do with your symptoms lol).
Anyways, thanks again! It is really appreciated. :)
What other hormonal tests did the doctor run? Did you get a copy or are you relying on the doc to just tell you it is normal?
Dostinex has some side effects... did you read the insert that comes with the med or talk to a pharmacist? There is another medication to try if that one does not work out for you. Otherwise you have to do surgery or radiation.
Side effects can be transient so you may just have to endure a couple of bad weeks and then it can be smooth sailing. Since the doc is being a dud - and is the doc a proper pituitary doc BTW??? - find a pharmacist or a proper pituitary doc to get the help you need to get the right testing and support that you need.
Dostinex has some side effects... did you read the insert that comes with the med or talk to a pharmacist? There is another medication to try if that one does not work out for you. Otherwise you have to do surgery or radiation.
Side effects can be transient so you may just have to endure a couple of bad weeks and then it can be smooth sailing. Since the doc is being a dud - and is the doc a proper pituitary doc BTW??? - find a pharmacist or a proper pituitary doc to get the help you need to get the right testing and support that you need.
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
