I had a macroadenoma of 4.5 cm and had transphenoidal surgery to remove a piece of the tumor and radiotherapy to continue shrinking it! Im also taking 10 mg of Somavert a day for the last 3 months but plan to suspend it to get pregant! Im just going to test for 2 months and see if my GH levels dont go up without Somavert
An acromegliac,I have had unsuccessful surgery,and 7 months treatment with first Lanreotide then Sandostatin were frought with little help, ongoing and progressive nausea,vomiting and gallbladder difunction. My Dr suggested Somavert as a last ditch chance,and counciled me not to be too hopeful. Somavert lowers my IGF-1 to almost abnormally LOW levels.At 10 mg, teh lowest dosage :) I do have to watch my blood sugar levels, as this doe stend to lower them. We also track my liver funstionsclosely, after having had issues with Lanreotide and liver/GB function imparement. It may not work fo ryou- but its been an unlooked for saving grace for me.
I have Acromegaly and considered "non-responsive to treatment". I was on Sandostatin for 8 years and felt great; however my IGF-1 levels never decreased. My doctor put me on Somavert 1 year and 3 mo ago. I've felt horrible, gained weight and lost my quality of life. If neither drug is effective to my IGF-1, then why not at least have quality of life with Sandostatin. It has a generic version, Octreotide, that's easier to handle financially too. Acromegaly is a long term disease that I've been told I'll always have. My only desire is to manage it in a way that I can be the a good wife & mother that I desire to be. For all you fellow Acromegliacs that are feeling the effects of this disease, I pray for you.
Acromegaly is a rare and powerful diesease. After two attempts to remove my tumor, my doctor perscribed Somavert. It took almost a year to lower my IGF to a normal level, but I am not certain that I am going to continue with the drug. I find myself with more fatigue and emotional issues while on the drug. The side effects are signifant enough to impinge on the quality of my life. I am aware of the detrimental effect that and elevated IGF level has on an adult, so I am very unsure how to proceed. If you have this diesease, I wish the best for you.
I had surgery to remove my pituitary tumor that was unsuccessful so underwent gamma knife radiation and began taking Lanreotide injections once per month. When the lanreotide was no longer showing results, my doctore prescribed Somavert injections to be given daily. From there, i noticed major changes in my health. Increased pain and headaches, nausea, fatigue, significant weight loss. I was a shell of myself. After 2 years, I was finally taken off the Somavert. It's been almost one month and I am starting to feel like myself again. Curious if anyone else had a similar reaction.