Anyone with uncontrolled acromegaly?

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Anyone with uncontrolled acromegaly?

Postby Pat » Thu Nov 10, 2016 3:59 pm

In light of a High Court ruling expected tomorrow, we may be asked for patient comment on the impact of available drugs for acromegaly. If anyone here has uncontrolled acromegaly and would be willing to give us a comment please do contact fraser@pituitary.org.uk
Pat
 
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Re: Anyone with uncontrolled acromegaly?

Postby member_41028 » Tue Apr 24, 2018 7:41 pm

Hi, I’m not sure if my condition can be described as ‘uncontrolled’ but my consultant wasn’t happy at my last review that it was sufficiently controlled and advised increasing the dosage of the medication I take for it. That is Cabergoline, which I’ve been taking for coming on for 2 years, I think, because I’d had enough of the roller-coaster emotional and physical ride I got from Lanreotide. So, since January, I’ve been taking the Cabergoline 3 times a week instead of only 2. It’s due to be reviewed in July. Prior to that I was on Lanreotide (Somatuline) monthly injections, but found the mood swings and fatigue too much to live with.

I tried to reply to the e-address given but it was blocked, saying ‘the hop count was exceeded’, that is there were too many links in the chain of connections. This doesn’t make much sense, given I was replying directly to what looked like a valid address.

Hope this is of some help.

Richard Billam, Exeter
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Re: Anyone with uncontrolled acromegaly?

Postby Pat » Wed Apr 25, 2018 2:16 pm

hi Richard

the email address isn't in use as Fraser left late last year and the post was from 2016.

Has your consultant mentioned pegvisamont to you? maybe worth asking about this.

many thanks

Pat
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