Hi Chileno,

Signifor is the tradename for Pasireotide....I participated in the clinical trial described in the article. Are you currently taking Signifor? Do you know anyone who is?

Ledgy

Hello Ledgy:
No, I am not on Signifor LAR and I don't know anyone who is.

After 3 surgerys and GK, my remanent tumor, although smaller, still keeps my IGF-1 in the 700s range. My HGH and Cortisol are in back to normal levels. I've been on Somatuline LAR for almost year. It doesn't lower my IGF-1 levels but it helps in relieving the symptoms.

According to the standards I should be treated with Pegvisomant (Somavert) but I can't get it.

I understand from the study that Pasireotide (Signifor) it is still not comercially available in its LAR form. Is this correct?

Greetings.

Pegvisomant (Somavert) is extremely expensive - 50-100 ($85 - $170 US) a day, or more - so is restricted in a lot of places including the UK. When the patent expires in a few years time, let's hope the price drops considerably to make it more available to those who need it.

Pasireotide is not yet generally available in its long acting version for acromegaly. Last I heard, licensing in Europe (and presumably the US) was scheduled for later in 2014.

Hi, everyone--
This is an old article, & I am certain it was probably posted in 2011, when it was new. But I just found it yesterday.

I am on the highest dose of Somatuline Depot (120mg/month), & the OGTT showed a normal growth hormone, but climbing IGF-1....currently at the high end of normal. The next drug would be Pegvisomant, but it is pricey and a daily injection, which does not really appeal to me. There isn't much showing on the MRI; it was believed that the entire tumor was removed in 2012. Still, my symptoms are back and I am experiencing side effects from the high dose after about months on it.

ANYWAY, if you click through to the link below, scroll down to where it says 'Medication' then 'combination therapy.' The second half of that paragraph suggests good results with improved quality of life with a low dose of Somatuline, then just a weekly (thus, also low) dose of Pegvisomant. And, somewhere else in the article, it states that the combination, due to both being a low dose, is considered to be more cost effective than either one alone.

http://www.news-medical.net/news/20110831/New-guidelines-for-the-treatment-of-acromegaly-a-serious-growth-hormone-disorder.aspx

Anyway, something else to investigate. On top of everything else, I am in the midst of thryroid problems which in turn are leading to heart irregularities.

Does anyone know of any updated info on this suggestion?

Re: Somavert. I'm in the US and thankfully my insurance approved it after learning I couldn't use the other available options. I was bummed to have to do daily injections, but by doing them looking in a mirror depersonalizes the action of doing such. A nurse taught me that! I also find that I have much less side effects than I did with Lanreotide. I would have such an awful week or two post injection. Then after a couple, I had a major reaction which I didn't have after the first two times. Apparently it is common to not have an initial reaction but to have it the second or third time. anyway, it ruled out all drugs similar to Lanreotide. I suppose I am thankful I am able to have no restrictions having Somavert available to me. I wish I could do something other than meds though! We all have our own experiences with these drugs - and there's so few people in the world that have this disease that many professionals don't even know much about them, so we gotta band together!
Best in your treatment!
Lauren

ledgy, what was your experience on pasireotide Signifor? I am being offered to go on a clinical trial for that, and need to decide whether to take that or Somatuline. Any insight would be great. thanks

I am collecting info on Signifor Pasireotide, here is the insert/data sheet with all info on the Novartis website:

http://www.pharma.us.novartis.com/product/pi/pdf/signifor.pdf

Note that this medication has an increased risk of elevating blood sugars (and possibly reducing cortisol levels). These side effects are rarer on Sandostatin and Somatuline. It is more effective in reducing GH levels but at a cost of increasing blood sugar. so perhaps consider it only if the Sando or Somatuline don't reduce your levels or the other side effects are too intolerable for your body. But each person is different, it could work better for some people.

Hi AZ,

I sent you a (much belated) response to your questions....also, my blood glucose levels did increase from mids 80s to 115-120 while on the pasireotide......my doctors told me it was not an issue for me, and when I finished the trial my glucose levels went back to normal.

Edgy

thanks Ledgy! the info about elevated blood sugars on pasireotide is super helpful.