Birchy, I too was on Sando LAR, then on Pegvisomant 10mg/day. I am now up to 30mg/day for the past month. Just had a 3-month visit with my endocrinologist on Monday. She had blood drawn, and I am now within normal range for my age! I can really tell a difference. I will see her again in 6 months and have an MRI done to see if anything is going on with the suspected residual tumor, which she doesn't anticipate will cause any more problem as far as size. I will continue to have liver function tests and IGF-1 tests done every month to stay on top of things (liver only slightly elevated, no big deal). There's a possibility the dosage could be reduced later on, she said. I have had no unpleasant side effects from this medication.

I am greatly encouraged, so hang in there. I went from 1034 to 199.

Fingers crossed for you Birchy that the increased dosage results in your levels getting to within the normal limits for your age.

Excellent news Granin, are you just on pegvisomant now or Sandostatin as well? You must be feeling so much better now you're under control.

I AM feeling better, thank you Shelley. It took a while to get to this point...started on 10mg back in April and went up from there. I could tell the Sandostatin LAR was improving, but not enough to satisfy my endocrinologist. She has mentioned depending on how things go later on, that I could move to two or three times a week on Pegvisomant instead of daily, or even pasireotide. So I guess this is an ever-evolving life.

I am just happy to see some continued improvement in facial features, fluid retention, ring size. Feet are still plenty big, though! I would love to be able to wear feminine shoes rather than men's sneaker. I'd go back to wearing the tailored office attire that I used to. But I'm grateful for this much at least.

Keep us informed on your progress, Birchy. Im sure you'll have questions come up, as I did. The info passed along this past week through this forum has been incredible, thanks to folks doing research and passing it along. Very encouraging.

It must be your positive attitude that helps Granin, that makes a huge difference, though sometimes it's hard to remain positive when there's so much to deal with.

I think we were all hoping for a great reduction in hands and feet, but realistically I think the reduction is generally more the swelling rather than the width because our bones have grown. My fingers definitely aren't as puffy, but still too large at the knuckles to get even XL rings on, but that's a minor thing!

What ever route we take its so good when we kick ass of this conditon...for myself drug route only..Ive just come back from my doctors and oh yes..blood pressure is in the best range for me ever...130/70 a big yes...Anyone who reads this post..Some things instant and some have took a while but from going from a state to a decent life..Hold hand up things have not been easy I have fought very hard..But Im one happy smiley LOL

Had a follow up with the endo yesterday and my most recent IGF-1 was 851 after about 2 months on 15mg/day. It's going in the right direction, but very slowly. He bumped me up to 20mg/day starting yesterday.
He had his most senior resident shadowing him yesterday, and when he introduced me, he described my case of Acromegaly as "particularly stubborn".. or something along those lines.

Other options we discussed were going back on cabergoline again, either with Somavert, or possibly Sandostatin. Reason being, my best IGF-1 to date - 459 - was ~2 years ago when I was briefly on Sandostatin in conjunction with Cabergoline. It was only for ~2-3 months, and then I lost my job and my insurance coverage. Another surgery is basically out of the question, barring a major regrowth of the tumor. My endo, my neurosurgeon, and myself all feel that she got all the tumor that she can with the 2 surgeries I've already had.
And then of course, at the very bottom of the list of options, is the focused radiation. He's very hesitant to go the radiation route yet, because I'm only 29, and the long term side effects can be quite challenging. I agree.

Anyways, just wanted to give you all an update. I have to admit, I'm starting to feel a bit disheartened. But whenever I feel that way, I make sure to come on here and read comments from you guys who have "been there, done that" and are doing better now.

- Birchy

Hi everybody, im glad you are all having good results with the Pegvisamont, i see most of you are on a daily injection, my daughter who is also on Peg is doing well with her levels, she went back to normal after a month, but she does have a lot of facial pain everyday, I just wondered if she would be better doing the same as yourselves, and injecting daily, I have enquired with her endo, he said he thought he would give her it this way, as it was just one injection a week. does anybody have any ideas, do you think you feel better doing it everyday.Wish you all well

Birchy, your Endo can still take you up another notch on the pegvisomant. I can't remember how long it was before my Endo would increase the dose (two or three months, I think). I'm now on 30mg daily and it's working beautifully. My liver function tests and IGF-1 are checked every month. I expect to hear any moment about the last check last week. Liver function was slightly elevated, then improved. Last IGF-1 was within normal range. I have been doing many of the things I used to be able to do (exception: an extra 40 lbs mostly mid-section) so I am happy. My levels were about the same as yours til my Endo kicked my dosage up one more time, and that did it. Best wishes and don't get discouraged yet!

Eileen

Sorry, Birchy, I didn't read your post thoroughly...was thinking you were on pegvisomant. That's what I get for being in a hurry! Best wishes to you...you haven't run out of options. My levels dropped and then went back up on the Sando LAR, which is when she switched me to pegvisomant. Pfizer has a program to help with the drug. Maybe that is a possibility to look into?

Eileen

You were right, I am on Pegvisomant. I always just call it Somavert because that's the 'bigger name' on the box. haha He MIGHT put me up even higher yet, we'll see.

Glad to hear it's working for you!