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Comment from: allisonsmommy, 45-54 on Treatment for 1-2 years (Patient) Published: January 23

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.

Related Reading: sandostatin | somavert | octreotide

Comment from: dollysdaddy, 35-44 Female on Treatment for 6 months - 1 year (Patient) Published: March 02

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.

Related Reading: fatigue

Comment from: Xxxs, 25-34 on Treatment for 1-6 months (Patient) Published: June 02

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

Comment from: Ninnian, 45-54 on Treatment for 6 months - 1 year (Patient) Published: September 17

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.

Related Reading: liver


Medical Editor: John P. Cunha, DO, FACOEP

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