Acromegaly Support Group

Hi Yari, I'm not on it yet, but Dr. Barkan mentioned it as a possibility when I saw him last week. I'm not clear yet on how likely it is. Keep us posted on what you decide and how it works for you.

Hugs,

Rose

Thanks, Rose. It is supposed to be very effective, but I am not sure about side effects.

I'm using my daughter's computer which is not really wonderful and I had hoped to give you a link to a site I was on where I was researching it. It looked pretty harmless according to that first look. One person in that study had an issue with weight gain and a couple of people had some liver issues so you have to have some frequent blood work to monitor your IGF-1 levels, of course, and to monitor your liver functions, too, according to that article. Eventually, I'll be able to give you the LINK to the site, too.

Hugs,

Rose

It also looks like you would have to handle it similarly to how diabetics would handle insulin, in that it has to be kept refrigerated until you use it, not allow it to freeze, inject it within 6 hours of preparing the solution & I don't remember seeing it in so many words, but I'm assuming you probably need to give yourself the injection at about the same time each day.

Hi Rose,

Here is a monograph on this drug -
http://www.pbm.va.gov/monograph/Pe...

I am thinking of having one injection every week. It is supposed to work in combination with Somatulin. Here is a study on this: http://jcem.endojournals.org/cgi/c...

Yarik

Pegvisomant is very well tolerated and very highly effective. In studies conducted, with 160 patients, IGF-1 values were lowered to below the age-related upper limit in 97% of patients.

Source: "Long term treatment of acromegaly with pegvisomant., a growth hormone receptor antagonist." Lancet 2001;358:1754-1759

Trystan
www.acromegaly.wordpress.com

Thanks, Trystan. What surprises me is that so few people are on this medication. I wonder what's the reason if it is so effective.

It's to do with how it's licensed - it the European Union it's licensed for use only when other treatment methods are inadequate or not well tolerated.

I'd imagine it would be similarly licensed by the FDA in the US.

My personal opinion is that the reason for the restriction is that the long term effects of GH floating around in the bloodstream is unknown. (Pegvisomant, does not suppress the GH at all - but blocks the GH receptors.)

Trys, you may be right. But I thought there were many people whose levels cannot be controlled with surgery or other medications. There are many drugs which are relatively new (e.g. Cabergoline), but still they are used as a first-line therapy...

Yarik,

You're right. There are a number of people who's levels cannot be controlled. Cabergoline though falls into the group of Dopamine Agonists and as a group they are well understood by now.

Growth hormone receptor antagonists though, because they still result in uncontrolled Growth Hormone (but normalised IGF-1) need the definition of "cure" or "remission" to be generally agreed (changed).

In some ways too, I'd expect economics comes into it. ;)

Trystan
www.acromegaly.wordpress.com