ok its thursday ive had my injection and my endo doc is happy, my igf1 levels have dropped 30% from 1200 to 895 im happy i think just wish i didnt feel like crap, im on octreotide 30mg per injection he told me that the company that makes the sandostatin lar has a new version of it and that they are going to make some available for me .He is still trying to get the pegvisamant but the us company is not budging at all, so much for the four people here in australia that are on it they will have to either pay for it themselves or come off it .why is it that some pharmasutical companys are such (excuse my language ) assholes when people need a drug to help them i supose the bottom line is money ,they are just money hungry fat ass greedy pigs and dont really care about anything or one but there own pockets and how much they can stuff in them
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I totally with you on this one.It makes me so angry there are people who raise money alot of it eg.charity events to help with research which pays towards the costs of drugs and no one who is ill should never not be given drugs they need to give them a better quality of life it but you hear it time and time again you are right some of them are greedy and dont care about real people in the real world. JJx
AMEN Swampy! I am with you. I think that any meds they have for this horrible tumor should be available to everyone everywhere! Doughboy is suppose to start on the pegvisamant soon if the doctor can get it for him from the company. He can\'t afford it. He hasn\'t worked since August. I am sorry the company will not let you have it there. Hang in there! I hope you feel better soon. That\'s good news about your IGF levels. A hug for you. xx Doughboy\'s Mom
Man if the acro doesn\'t get you the system does!!!! Dang it is sooo frustrating...I wish there was something we could do...those dirty Baaaaa-----well I better not say it....that was a favorite saying of my husband\'s, I think it came from some movie... anyway you really do have some good news....30% decrease in your IGf will make a huge difference in how your feeling..also if your IGF is going down it could mean the tumor is getting smaller also...
FYI I was on 300 mg of octreotide before the surgery.. I took 3 100mg shts a day.. i injected myself. it really worked on me..also reducing both my GH and my IGF1.... IGf 840 then dropped to 554 before surgery after the shots and after surgery they say it dropped to 390...anyway I thought I would tell you cause if you have reacted and it is going down that is a gooooooood sign and focusing on that will certainly help....!!! mctrjt..
Hi Swampy! Ditto about the drug companies. They know this is a rare disease and they can get away with their crazy prices. The insurance companies are just as bad. Complete morons. Glad to hear your levels are dropping. I\'m waiting for my insurance company to approve the Pegvisomant so I can start taking it. Sando didn\'t work for me. XX