Newly Diagnosed and new forum member

Please join the discussion if you wish to share about the pituitary condition Acromegaly

Re: Newly Diagnosed and new forum member

Postby member_41389 » Tue Apr 24, 2018 7:31 pm

Hi Richard
It's interesting to hear your comments about therapy. I'm now on octreotide after a year on lanreotide - the side effects of the octreotide are less than lanreotide for me.
They did try me on cabergoline first; I was on 1 tablet per week as two doses on Wednesday and Saturday. It was disastrous after 2 weeks I couldn't breath or exercise (25 metres was too far) so they said stop and it took anouth 6 to 8 weeks before I'd got rid of all the impact. This was all for a 20% chance that it would have any effect on GH.
Hope all goes well for you
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Re: Newly Diagnosed and new forum member

Postby plum » Thu Apr 26, 2018 9:01 pm

i have been on lanreotide since 2011.
they did add cabergoline at one stage to control the prolactin but my mood went 'odd'. although that could be because it coincided with coming off antidepressants.
anyhow the cabergoline was stopped since it had done its job and i was put back on the antidepressants.
but my prolactin is going up again and my mood is becoming more 'volatile' so who knows....
there is nothing 'settled' is there?
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Re: Newly Diagnosed and new forum member

Postby stevea » Mon May 07, 2018 1:47 pm

In reply to the lanreotide injections. I started on them a few months ago and have had no problems. Injection can hurt but it is pot luck where the nurse injects. generally it is ok
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Joined: Tue Sep 07, 2010 10:24 am

Re: Newly Diagnosed and new forum member

Postby member_46623 » Tue Mar 17, 2020 8:00 pm

Hi tabi,
Welcome to our ‘special’ club! I was diagnosed with an active Macro Adenoma early 2015. A visit to the GP about a lump on my neck culminated with a hospital consultation at the Ear, Nose and Throat Outpatients Dept. I hadn’t even sat down before the Consultant asked, ‘How long have your hands been like that’? To cut a long story short, a chat with the Consultant resulted, after blood tests with a diagnosis. Amazingly I was told that my condition had started up to 10 years earlier as growth is extremely slow! At this point everything made sense, Hands and Feet swelling, had rings cut off and had to resort to Crocs in every colour and style as my shoes became redundant! Sleeping in separate bedrooms as my snoring was off the scale, Sleep Apnoea contributed to my angst that I wasn’t ageing with dignity! Carpel Tunnel syndrome, blurred vision etc etc ... All coupled with the added joys of the Menopause! All this time I resigned myself to the ‘Ageing’ process! My wonderful Consultant advised me to avoid all medical websites except our amazing Pituitary Foundation. Such a complicated and daunting condition but, with the comfort of reading everything empathetically explained I felt as if someone was holding my hand. My fear diminished with the endless access to the knowledge about the condition. I feel blessed that living in East Anglia my treatment was and is under the exceptional care of a nationally renowned Neurologist Professor at Addenbrookes in Cambridge. Mark Gurnell and his team are incredible and at no time did I feel afraid. 18 months of exhaustive tests prior to the Trans Sphenoidal Surgery, including 7 monthly injections to stabilise and shrink my Tumour. During this time I came to look on Mark and the Endocrinology team as friends which continues to this day. March 1st 2016 I had my operation, a full on headache relieved with strong painkillers, not a single bruise or black eye but .... Felt like a donkey with a best described as a ‘nosegay’ draped under my nose for 6 days! In short a tampon with loops either end to tuck round the ears! I’m now monitored with regular blood tests and annual MRI scans and will be for the rest of my life. A great way to have an annual MOT! The positive of all of this is that I feel safe and sure in the knowledge that should it start to grow again it will be ‘nipped in the bud’. My advice to you sweetheart is ‘Trust’ and don’t be afraid, life for you will carry on with the added bonus that someone is holding your hand. JGthP XX
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