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.
Hey all,
Just thought I'd check in with an update.. After a few years of very poor and inconsistent results with Sandostatin LAR, my endo started me on Somavert back in March 2010. After a bit of tinkering with the dosage, in March of 2011 I had my FIRST normalized IGF-1 levels since I was diagnosed in April 2007. Although I never thought it would take 4 years to get my IGF-1 figured out, things were looking good! Stayed pretty much normalized for the rest of last year..
Then towards the end of the year the HR department at my company sent out an email to us all that our prescription drug insurance coverage was changing - effective Jan. 1, 2012 - in order to make it sustainable for everybody. They were capping it @ $10,000/year, and removing specific drugs from the plan altogether, one of them being Somavert. You can imagine my disappointment..
They did put those of us afffected in touch with a 3rd party company to help us find other options (and are paying for whatever option we choose), but there were really only two choices. "Alberta Blue Cross", which is a public program here in Alberta, OR getting some sort of "compassionate care" coverage from Pfizer directly. We've since found out that Pfizer does not provide a compassionate care program, but there is something similar (the name escapes me right now), and I've gone through the application process, but it's a LOOONNNNG process. I hear from the lady once every couple months it seems..
So in the meantime, we went with Alberta Blue Cross. BUT, they do not provide coverage for Somavert either, only Sandostatin, Somatuline, Bromocriptine, and Cabergoline. When questioned, they say when they did their research, Somavert hadn't been proved to work any better than the others, and that in order to "re-evaluate" Pfizer would have to initiate the process themselves.
Since I had already been on Sandostatin LAR and Cabergoline in the past with very poor results, my endo and I decided to try Somatuline this time around. I have to admit that I'm having a hard time being positive about it, since they're both so similar (both "reotides"), but my endo tells me after speaking with his colleagues that they've had some who had no results with one, but good results with the other, and vice versa. So we'll see! Had my first injection a couple weeks ago.. Needles don't really bother me at all (I would imagine it's the same with most of you, since we get poked and prodded so much.. you get used to it), but I can think of a few other things I'd rather do than have an 18 gauge needle being 'slowly' pushed into my bum. :) Thankfully the needle is subcutaneous, (not intramuscular like the 19 gauge Sandostatin needle), so it's quite a bit shorter. My nurse explained that the medicine itself is about the same consistency as vaseline, so I'd most likely feel a bump in the injection site for most of the month as my body slowly absorbs it. She was right.. totally weird.
Anyways.. I won't have a blood draw until after injection #3.. but I'll make sure to touch base and let you all know how its going at that point.. But if there's any of you out there that did NOT have success with Sandostatin, but DID have success with Somatuline, I'd love to hear your experience!
In the meantime.. I hope you're all doing well!
Ryan
Just thought I'd check in with an update.. After a few years of very poor and inconsistent results with Sandostatin LAR, my endo started me on Somavert back in March 2010. After a bit of tinkering with the dosage, in March of 2011 I had my FIRST normalized IGF-1 levels since I was diagnosed in April 2007. Although I never thought it would take 4 years to get my IGF-1 figured out, things were looking good! Stayed pretty much normalized for the rest of last year..
Then towards the end of the year the HR department at my company sent out an email to us all that our prescription drug insurance coverage was changing - effective Jan. 1, 2012 - in order to make it sustainable for everybody. They were capping it @ $10,000/year, and removing specific drugs from the plan altogether, one of them being Somavert. You can imagine my disappointment..
They did put those of us afffected in touch with a 3rd party company to help us find other options (and are paying for whatever option we choose), but there were really only two choices. "Alberta Blue Cross", which is a public program here in Alberta, OR getting some sort of "compassionate care" coverage from Pfizer directly. We've since found out that Pfizer does not provide a compassionate care program, but there is something similar (the name escapes me right now), and I've gone through the application process, but it's a LOOONNNNG process. I hear from the lady once every couple months it seems..
So in the meantime, we went with Alberta Blue Cross. BUT, they do not provide coverage for Somavert either, only Sandostatin, Somatuline, Bromocriptine, and Cabergoline. When questioned, they say when they did their research, Somavert hadn't been proved to work any better than the others, and that in order to "re-evaluate" Pfizer would have to initiate the process themselves.
Since I had already been on Sandostatin LAR and Cabergoline in the past with very poor results, my endo and I decided to try Somatuline this time around. I have to admit that I'm having a hard time being positive about it, since they're both so similar (both "reotides"), but my endo tells me after speaking with his colleagues that they've had some who had no results with one, but good results with the other, and vice versa. So we'll see! Had my first injection a couple weeks ago.. Needles don't really bother me at all (I would imagine it's the same with most of you, since we get poked and prodded so much.. you get used to it), but I can think of a few other things I'd rather do than have an 18 gauge needle being 'slowly' pushed into my bum. :) Thankfully the needle is subcutaneous, (not intramuscular like the 19 gauge Sandostatin needle), so it's quite a bit shorter. My nurse explained that the medicine itself is about the same consistency as vaseline, so I'd most likely feel a bump in the injection site for most of the month as my body slowly absorbs it. She was right.. totally weird.
Anyways.. I won't have a blood draw until after injection #3.. but I'll make sure to touch base and let you all know how its going at that point.. But if there's any of you out there that did NOT have success with Sandostatin, but DID have success with Somatuline, I'd love to hear your experience!
In the meantime.. I hope you're all doing well!
Ryan
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