one piece of advice..is make sure before you inject you have it room temp..I was being very sick when it hadnt..the leaflet instrctions was wrong for myself..since Ive got it sorted..so muh better..also the injection cleared up some of the symptons..some its took longer to correct..some not..

Thanks, Jokey. I appreciate your letting me know this.

:) youre welcome

Mimi8,

I started taking Somatuline injections about two months after my surgery last Novemebr. I started on 90 mg but after three months my IGF was not going down fast enough for my endo so he put me on 120mg. After three months on 120 mg my IGF started going back up so he put me on the daily injections of somavert and after 15 days my IGF went way down. I still feel very fatigue though. I have to get both knees replaced, the first is scheduled for next month. I hope my IGF continues to stay down and that my energy level will get back to normal.

As far as the Somatuline, they do want you to take the med out of the refrigerator 30 minutes prior to injection because it is like a gel, the needle size is an 18 gauge which is kinda of a large needle. I also had a lot gestural side effects from the med. the first injection was the worst. It usually took a couple of days for these side effects to kick in. I had a lot of gas, belly cramps and loose bowels which last three to 10 days.

It is kind of weird because I went to an Acromegaly seminar and was talking to people where the somavert injections didn't work but the somatuline injections did for just the opposite just like some other people, I guess it just depends on your body chemistry for each person.

good luck

Ken/klssr3737

Thank you for sharing your experience, Ken. I wish you all the best as you continue your journey.

God bless you.
Mimi8

You are doing it the right way to have the injection sent to you & take it to the office to have it injected. My first shipment went to the hospital & it got lost. It was a mess! We have done it the way you are doing it ever since!!

BUT, the nurse at the time did a fair amount of research on the drug. Really, it can be left out of refrigeration for up to 24 hours without being compromised. The injections can be uncomfortable, especially if they are not warm enough. Now, I take it out of the refrigerator the morning of my appt as soon as I come downstairs & put it in my handbag, around 7 a.m. My appt is usually around 10or 11, but sometimes not until 2. I do not let it get really hot in the summer (i.e., I keep it in air conditioning), but basically do not fuss over it. THAT makes it much easier to bear!!

The initial stomach issues diminish by around the 3rd month. Then, there are occasional mild recurrences, but it is bearable.

Somatuline is among the few drugs that works on the tumor itself.

My story is remarkably like yours, except a micro. My (new) endo told me just today that adenomas of less than 2mm do not show on MRI, & that 85percent of micro cases resolve w/surgery. Though my surgery was deemed a success & there is no visible tumor, my IGF-1 is a bit of a battle. At one point, we went to 120mg. After a few months, though, the side effects were unbearable. It is better @ 90mg for me. My IGF #s are okay, not great. Endo feels that the drug might ultimately shrink what little is there & the drug may not be 'forever.'

Good luck.

--Fran

..a funny side effect that happened to me and it has happened to one or two members..energy levels shot up..it could be part of my personality..but I had some hyper moments..nobody knows at work..but I got comments of how I became more hyper usually after injections..I would say..I guess ive eaten to many sweets..but to me at least hyper was better than the dreadful tireness..it has calmed down and Im more balanced..

Thank you, Fran and Jokey. All of this information is really helpful and I truly appreciate it.

God bless you.

just to clarify the amount of time from taking out the injection..30 mins before having injection..was not enough time for myself..I make sure its out at least two hours een more usually four..I have not had any bad reactions..30 mins and ohmy am I a mess...one other side effect when first startig did hae cramps in legs at night but could of been because I was being sick..I took a natural tonic which had vitamins in and iron wich cleared that problem up..the other thing is before next drug is due..I kind of kick in my sleep a leg restlessness..this is from a week to a day before..I know its hard when youve had surgery to be told you could need a drug..I think mindset is the tumour removed levels drop you think yes..so its probably a bit of a shock but the good side this drug has made a huge difference to my life.