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.
I've been on Somavert now for ~6 months, started at 10mg/day and was gradually increased to 20mg/day.
I've been on 20mg/day now for about 6 weeks and just had bloodwork done last week. Got a phone call from the Endo's office today, and although they didn't give me a specific number, I was told "we've made significant progress, but you're not in the normal range yet". So that was nice to hear! He's upping my dosage to 25mg/day starting today.
I've been telling my wife and others the last while that I FEEL like it's been working, but at the same time, I wasn't getting too excited about that because I've felt better in the past too and then my next IGF-1 would still be way high. Looks like my feelings were right this time.
Also.. as a side note.. if any of you are in North America and collect Air Miles.. I recently found out that the Safeway (grocery store chain) Pharmacy does 7x Air Miles on every $20! Doesn't matter if your insurance benefits pays the bill or not. Do the math.. it's absolutely crazy when your drugs cost ~$8000/month! I switched my pharmacy within an hour after I found this out.. too bad it's not retroactive!
I've been on 20mg/day now for about 6 weeks and just had bloodwork done last week. Got a phone call from the Endo's office today, and although they didn't give me a specific number, I was told "we've made significant progress, but you're not in the normal range yet". So that was nice to hear! He's upping my dosage to 25mg/day starting today.
I've been telling my wife and others the last while that I FEEL like it's been working, but at the same time, I wasn't getting too excited about that because I've felt better in the past too and then my next IGF-1 would still be way high. Looks like my feelings were right this time.
Also.. as a side note.. if any of you are in North America and collect Air Miles.. I recently found out that the Safeway (grocery store chain) Pharmacy does 7x Air Miles on every $20! Doesn't matter if your insurance benefits pays the bill or not. Do the math.. it's absolutely crazy when your drugs cost ~$8000/month! I switched my pharmacy within an hour after I found this out.. too bad it's not retroactive!
It sounds like very soon you'll be feeling a whole lot better on Somavert, so I'm sure yo'll enjoy a well-deserved vacation too.
Trystan
www.acromegaly.wordpress.com
Harmony
Cripes, I never knew drugs could be so expensive in America, $8000 a month, that's absolutely crazy! Thank heavens you've got insurance.
February IGF-1 = 626 (this was the one where he said "there's been significant improvement, but we're not quite there yet).
March IGF-1 = 206!
WOOHOO!! So happy right now! Don't want to put the cart before the horse yet... but it sure does look like we've finally hit the right dosage with the Somavert (25mg/day). So this is probably the first time my IGF-1 has been in the normal range since my high school years in the late 1990's! It's been 4 years since I was diagnosed.. 2 surgeries and multiple drugs and dosages later, and we're finally getting some good results.
I know it's not over yet by any means, but just wanted to say to those of you who may be just going through the initial diagnosis/treatment stages.. you'll get there eventually! But it definitely takes patience!
Trys
www.acromegaly.wordpress.com
I can tell too when it's working. I'm on 30mg/day however.