I was sick as a dog on this drug at first I got to be best buddies with the loo I would be in customers houses and was sick they never knew I would just carry on and smile I am glad I perservered because everyone says you look so well .I am glad you are not giving up I am on the largest dose but it wasnt instant had quite alot of things to go through but looking back its worth it :)

agreed! my hubby says that my face is getting to how it used to be and im nearly 'fit' again lmao! cheeky bugger. but i feel loads better and most acro symptoms are now gone. apart from my sweatyness and achyness. but not half as much as it used to be. so glad im sticking with it now. the loo was my best friend too lol, but glad to say not any more

WTG Flouncy, love your new avatar picture, I'm on the 120mg dosage once a month,my latest blood test is sitting on 30, it was 29 last time so it's holding okay but she still wants me to stay on the largest dosage.
Hopefully she'll start to stretch it out a little in between.

I started off on the 90 mg dosage which worked for a while, but was increased to 120 mg about 6 months ago as hormone levels started to go up. Side effects settled down after a while. Went to my endocronologist appointment yesterday and was told levels down to 30 (the lowest since I started treatment). Prolactin levels are good too. Unfortunately sugar levels are creeping up (6.8) so have to work at losing weight, getting fit (I have increased karate to twice a week) and eat a lot better. Have to confess balancing life with working full time, commuting to Sydney and 2 teenagers is busy so we don't always eat properly and/or at a decent time. Will have glucose tolerance test and MRI prior to next appt in 6 months time. Let's hope the tumour has started to shrink!

what brill news for you both!! now the countdown for my resyluts begin, i go tues. 6 days to go! im so nervous im hoiping that my levels have come down a bit more. they were slowly creeping down from 120 odd now down to 70 something, i was on cabergoline then so ive got everything crossed for my results. if my levels got to 30 i would be dancing around like a mad woman...lol all the best for the scan. i havent had one in a year still waiting. i should have one again shouldnt i?? maybe ill ask my endo next week. heres to tumour shrinkage :) the wonder drug somatuline!

Fingers and toes crossed Flouncy, sending positive thoughts to you , you will get great results, good luck.

Hi,

Well we have had some funny results, 3 weeks off cabergoline and my levels was 6 back on for 3 weeks and its 20, (GH) no igi-f results given, he says he does not understand these results, they were done in southampton this time instead of Barts of London, im really worried, this must surely mean that the disease is till active, he is taking me in again on thursday to do another day curve, any one had anythng like this, do you think it could mean the cabergoline is not working? also in Lanreotide autogel 120mg very 3 weeks, funny thing is the facial pain has been so much better, really cant understand this.Anyone throw some light. Thanks.

ALso so sorry, meant to say that that is such good news, especially when you can see the changes, and others can also, do you suffer any pain now, if I remember rightly your arms used to hurt, Hope thats also gone Take care

My results just in and alittle bit higher that so gobsmacked me I look well feel good fingers slimed lost weight even finally got periods regulated and then walk in and get told they are higher I have been under alot of stress been on a bit of an emotional rollercoaster but when put forward would stress affect results answer didnt think it would affect results my ass I think it can lol.I am staying where I am and if next results come back worse then I will talk to encro well thats if he is still working probably he needed a drink after seeing me oh so ROFLMAO

Hi,

Funny that you should mention stress, my daughter has just started a new job, and has been up to high door learning different things, I did mention to doc could it be stress related, no comment, but GH is a stress hormone isnt it, think that is a good idea watch and wait and see if there is any change, we are back to Barts in new year, so fingers crossed.

spiegal, yeah my arms have been realy good thank you, untill i started doing more than i have been the past year. someone at the hospital did warn me not to strech myself too far yet but me being me thought i would do it anyway. and my arms began to hurt again and my legs through walking so much. so i will be so pleased to strat being a lazy cow again..lol but to your cabergoline question, i was on that for a year and it diodnt bring my levels down enough although it did help with acro symptoms, i was then off them for 3 weeks untill i got my new meds in that time my levels did go up and my arms and legs really hurt and i had bad mood swings!

I know that this is a really old thread, but it seemed the most appropriate to me.

I had my third jab on Monday, and boy are these drug side effects bothering me! I do believe that they are getting less severe as the months go on, but it's a bit of an endurance, especially at the beginning of the month. Is there light at the end of the tunnel?

I have not had diarrhoea to speak at all, so I should be thankful for that I suppose, but with the, erm, volume and ferocity each morning you'd have thought I had swallowed some drain cleaner to clear out the pipes. Also I have had quite a bit of cramping and nauseous feeling, on and off, but mostly in the mornings. (I am not pregnant) I have still been getting into work though, but taking a bit of time as holiday days and to go see the GP as needed.

The GP actually gave me some antispasmodic (Colofac -- mebeverine) which has been helpful. Also he's told me it's fine to use Motilium (domperidone) as and when needed for the nausea. I have taken Motilium in the past for the nausea I usually get with migraines, so know it works.

After an incident with a few chips a couple of months back, I have been eating a really low fat diet (gosh how boring!!) for the few days before and after the jab.

And yes Jokey, before you remind me that I was so starved of interesting food I baked myself a cake, it really was low fat!

Now I need all of you old hand to confirm what I have read, that the side effects really do go away/settle down after the first few months.

I was started on 90mg. I get my GH/IGF checked just after Easter to see whether they want me to go up or down (or if it is working at all).

John

By the way, do you lot get cold on this drug? I was so cold in the house last week that I got chilblains on my feet! Haven't had them since I was a kid. (Yes, I do heat my house)

John

I had my injection today and saw the nurse who gave me one of my earliest injections..She asked hows it going she said she can see a difference...for myself its taking time and Ive had some funny things happen..But its been worth it..I was very sick and the D was not good...For myself to feel the cold... to not be in exreme pain my carpel tunnel went... to just work... to not ache... to not fall asleep..For people to look surprised when they find out Im older they think that I ten years younger..Oh J get some chocolate cake down you...LOL..I think this drug has to be given a chance our pit has been working wrong for years in some casesmy encro wanted to change drug but Im pleased I said I want to stay where I am for now

Just ate some crisps... couldn't stand the temptation much longer.

It's my "trial bag".

Low fat meal tonight still.

John