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.
Hello Friends,
I am just wanting to hear a bit from our fellow members who have been taking the drug Somavert (Pegvisomant). It has been added to my Sandostatin LAR 30 MG, as my IGF Levels have not lowered further.
My Specialist believes that Somavert and Sandostatin work well together as they compliment existing therapy. One works on the Pit Gland, the other on the Liver.
Has any of you had a combination of the two, or just the one after being taken off of Sandostatin? I am curious.
As well, this drug is incredibly expensive! I was wondering if you had insurance and drug company assistance with your payment of it.
Thank you.,
Wes
I am just wanting to hear a bit from our fellow members who have been taking the drug Somavert (Pegvisomant). It has been added to my Sandostatin LAR 30 MG, as my IGF Levels have not lowered further.
My Specialist believes that Somavert and Sandostatin work well together as they compliment existing therapy. One works on the Pit Gland, the other on the Liver.
Has any of you had a combination of the two, or just the one after being taken off of Sandostatin? I am curious.
As well, this drug is incredibly expensive! I was wondering if you had insurance and drug company assistance with your payment of it.
Thank you.,
Wes
That is great to hear about your daughter. That must have been one large macro! Did they get it all through her surgery, or was some GH tumor left over? With mine, my cells are a bit scattered GH type so it is hard to get them all.
I am thrilled to hear that it has been 5 years on and she is doing so remarkable with her GH levels. Keep up the good work! God bless her and you!
Wes
Anyway - Somavert is a freaking miracle, in my opinion.
I am glad to hear that your second operation has went well, and that it was at least somewhat more comfortable than that of your first. Wow, espeially with that lumbar drain, second time around. Your strong.
It will be free for me as well. I have insurance here in Canada, it's tricky applying for the medication as it is so expensive it takes almost up to three months for the Government here in Ontario to approve of its payment. Which is understandable as it's cost is $30,000 a month.
If it is normalizing your growth horomones after such trouble you have had, then I certainly hope I shall have no problems lowering mine. I am currently around 200 above normal.
I just cannot get over the syringe a day, everyday... I was just 'cured' from my first surgery from having had Type I diabetes 7 shots a day of insulin. Only to switch one daily set of needles for another! How do you handle making it into your routine? Taking the time to self mix the vials and then administering to yourself that is.
Wes
Here in the UK it is uncommon (though not unheard of) to get Somavert/pegvisomant approved, due mostly to cost. Cost to our health service starts at 50 a daily dose, about $80 CAN. That's a minimum of 18,250 a year...
Good luck!
John
John - I've been a longtime advocate of national healthcare here in the US, but seeing how hard it is for people to get this drug in some countries has made me really take pause. I still believe in it, I just think the UK is an example of how not to do it. Our health care in the US is criminal. I was without insurance for 5 years, all the while harboring this tumor, and was completely unable to get ANY care, even though I was working 60 hours per week. Then I got my current job with a large corporation, and anything I need is handed to me on a silver platter. It sounds nice, but what happens if our grant money runs out (I do grant-funded psychiatric research) and I'm laid off? Our government will just let me die. It's criminal.
I understand. We have very similar Healthcare such as the NHS and my Provincial OHIP. For me, the Somavert has to go through a panel which oversees the Exceptional Access Program and a "Compassionate Review" Process. I'd imagine it is the same circumstances in the UK, for unlisted drugs on Universal Healthcare.
Typically, a Doctor or specialist like my Acro specialist won't ask for the drug if he knows it likely would not be approved to be covered. Dr. Ezzat here in Toronto, he was the main Doctor to have the stuff Approved by Health Canada his self. They have not had many turn down's here?
Suzanna. It is great to see how amazing the Health Support lines are with their chat groups online the Pfizer Website here in Canada and the US. As well, they do both for Sandostatin by Novartis, they go above and beyond to help you as a patient.