Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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swampy 10/21/2010

hi guys just got my IGF1 and GH levels from endo GH4.6 but IGF1 was still at 750 ive been given the ok from 3 departments at the hospital just waiting on last one to say yes to pegvisamont but i would love to know from our extended acro family what they think about it ,i am at this moment weighing up the PROS and CONS but input from others will help so please if you can help
CHEERS SWAMPY

Harmony22 10/21/2010

Hi Swampy,

Somavert is working for me. I take Somavert 15 mg daily and my IGF-1 is within normal range for my age. I don't tolerate drugs for acromegaly very well but Somavert is comparing to Sandostatin and Bromocriptine great for me. My side effecsts were on 10 mg daily: sometimes nausea and diarrhoea and on 15 mg daily I have light sleep. So there is nothing to worry about. The only down side of Somavert is that it doesn't shrink tumor.
Very kind and patient nurse has tought me how to give myself injections and now is this part of my daily routine. Easy peasy :-)
If you have more questions just send me PM.

Take care and good luck,
Harmony

spiegal 10/21/2010

Hi Swampy, my daughter had 2 ops and radiotherapy for remnant tumour tried all the medications,nothing was working quick enough, after one month on pegvisamont levels normal its been quite a while now, and so far no side effects,Good luck

deleted_user 10/27/2010

Good luck with the pegvisomont. It's the only thing that works for me. I am one of the few that have side effects with everything and the biggest problem I have is I don't sleep - period. I am on 20 mg a day and I have to take a sleeping pill if I want to sleep at all. At least it has lowered the igf-1 levels though. I have had radiation and the last two mri's have been okay - no tumor growth at all. I hope this works for you.

This is a cursed disease!

spiegal 10/28/2010

Hi Swampy how are things going, please let us know Take care

swampy 12/31/2010

Well guys i start on pegvisamont on the 20th of january my endo doc rang me today and advised me it was in

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