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 am so discouraged and angry right now. After a month of increased Sandostatin dosage (40mg!), my IGF-1 went from 805 to 1050! My GH went down a point (from 8 to 7). What the hell? I'm starting Pegvisomant next month, and that is literally my last hope.
Has anyone else had their IGF-1 go up despite decreasing GH?
Sometimes it's hard to believe that there's hope.
-Suzanne
Has anyone else had their IGF-1 go up despite decreasing GH?
Sometimes it's hard to believe that there's hope.
-Suzanne
Yes, I basically had the same thing happen. I can't recall specifically having my GH level tested that often after my initial diagnosis, but I did have my IGF-1 levels fluctuate, and even increase higher than they were pre-op, during the time I was on Sandostatin. If I recall correctly, my highest IGF-1 pre-op was in the 800 range. Post-op, my first IGF-1 was ~450, and things were looking up. The endo started me on Sandostatin almost immediately, and over the next year or so my IGF-1 fluctuated wildly, from ~400 all the way up to my highest ever which was ~1200! I personally had already been on 30mg/month when I hit the 1200, so needless to say, that was extremely discouraging. I ended up having a second surgery, but that didn't change anything either.
Eventually the endo switched me to Pegvisomant, at 10mg/day. My IGF-1 continued to be high, so we gradually increased the dosage. No results at all until I got up to 20mg/day, and then we finally saw a bit of a drop, down to ~600. He bumped me up to 25mg/day, and my next IGF-1 was (this past March) was 206. I was diagnosed in April 2007, and we didn't get my IGF-1 into the normal range until March 2011! That being said, I'm still waiting to hear back about my most recent bloodwork I had done last week.. crossing my fingers that it will still be in the normal range.
Sooo... I know it can be extremely frustrating at times, but don't give up!! Some people just don't react to certain drugs the way others do, and there's a lot of trial and error along the way. However, I'm sure you will get there eventually! Sometimes it just takes longer than we anticipate. I never, ever would have guessed it'd take 4 years after my diagnosis before we got my IGF-1 back to normal! But the main point is, we DID get there eventually.
Hang in there! *hugs*