I have been on drug for a few years now..I have not had surgery..I started off on the lowest dose..I was sick and had diarrheoa.not a pleasant side effect..but the good side some of my symptons was eased one immediate was was my intense burning..I could feel what cold was like..to me this was amazing..my levels didnt drop not to what they wanted them to..so I was put on to the next dose size..again yes sickness..but my symptoms inproved but I had a energy boost and got up to some jokish stuff..I went hyper with the energy..but to me this was better than being asleep and no energy..I then started to look really well..but it was decided to put me on larger dose ..I started improving even more..the tumour was shrinking away from my optic nerve..so my eyesight got better..I want to say here that some things improved but some things it took longer..the one thing I will add is when the drug was administered and not at room temp..I was very ill..I was really sick..so this one is a must for people on somatuline autogel..also I had some rough times with depression and anger because of this..but when it was realized the drug needed to be administered when its been out of fridge ..Ive not been sick and it made a big difference..my levels have been the lowest ever..

My first injection was in October (90 mg) - about an hour after shot I experienced a pounding headache and felt weak and so exhausted I had to go to sleep. Woke up about 4 hours later with mild stomach ache which lasted for 2 days but headache was gone. I felt tired and weak the next day and at one point became light-headed for about 20 minutes but after that just some gas for about a weak.

My second injection was November 25th and again I got headache, tiredness and weakness same as first but less mild stomach pains. Next day I felt better but then 4 days later I had bouts of tiredness and weakness for 2 days.

I still have large lump at injection site from first shot but it is very slowly getting smaller. Small lump after last shot.

Endo took blood right after 2nd shot and called last week saying IGF-1 went down dramatically but still slightly above high normal. Ten days til next injection.

WorriedWife, did your husband's endo check his Growth hormone/IGF-1 levels yet?

Now that you mention it, he has been alot more tired recently. Such a busy time of the year, I didn't even consider it being from the med. We haven't checked levels yet. We're following the standard protocol of 3 months treatment and then check IGF-1. I'll definately post once we get new levels.

Happy New Year to all! Had my 3rd injection on December 23rd. Got bad headache again where even my teeth hurt this time. Did not feel the tiredness nor weakness like before but had mild stomach cramps for 2 days. So I thought that was it for this month - but this past Monday I got bad stomach cramps and it was like Mt. Vesuvius erupted - for 4 days now I have been running back and forth to the bathroom. So medicine really kicked in. The good news is that my endo called on Sunday with results from blood test - IGF-1 dropped to below high normal - 270. My range is 70 to 279. We'll see what results from next test will bring at end of month. Wishing everyone a healthier and happy 2015 - Mimi8

Happy New Year!
I've been on this drug for a year and a half now. Starting dose was 90mg then 120mg then back to 90mg every 4 weeks. Lately, though, I've been stretching it to 5-6 weeks. The side effects were pretty unbearable on the 120mg. I had/have all of the same side effects you talk about in varying degrees. Right now (got my injection 12/30) I am so tired & lightheaded I could collapse. But, for the last 2 nights, my sleep has been a bit less restful than usual. I also get joint aches (especially my knees). At first I thought that was the acro, but as my IGF-1 is pretty much in the normal range (mid to mid-high), I am convinced it is the drug after all of these months. The headache concerns me, as there is another poster in this group who had headaches & wound up with a cavernous malformation & brain surgery earlier this year. His endo was suspicious of the somatuline due to the timing. And, even my thyroid endo reminds me that 'We really don't know exactly what this drug does over the long term.' I haven't seen him post in quite a while.

This last injection, I let the drug sit on the heated passenger seat in my car for the 1+ hour drive to the hospital. The nurse commented that it was the easiest injection she's had. Since I have had considerable discomfort at the site, I've decided that is a prudent thing to do in the future. The old nurse practitioner told me that she called Ipsen & they told her the drug could be at room temp for 24 hours and be perfectly safe.

Those of you who commented that the side effects might have been worse when the injection was colder make an interesting point. Some of my months have been really bad, but I'm not sure whether or not it correlated with the more difficult injections.

The stomach stuff varies. I think someone once posted that their stomach got bigger. Unfortunately, I must agree with this. My weight is essentially the same, but my stomach is definitely bigger.

Happy New year everybody..... it's been awhile since I've been able to post anything. Sept 1 of 2014, we moved the house renovations into high gear and moved into the camper for what we thought would be a 4-6 week period. New electrical system, hvac system, sheet rock, new kitchen and finishes through out......nothing every goes as planned or scheduled in a whole house renovation. Needless to say, the 4-6 weeks turned into 4 months and while the camper had a propane heater in it, the only thing I can say is thank God for those North Face sleeping bags......although a wee bit larger water heater would have been nice too. We got back into the house proper just before Christmas and loving it. Still unpacking stuff and finally got my computer system back up.

Several things I learned - 1. Ainlt never doing this again....too old and too hard on me. Next house will be a condo. 2. When the cabinet contractor says 4-5 weeks to build and install, if his lips are moving he's lying. 3. Never order old world glaze from Italy....still waiting on it.

As to the Somatuline Depot.......by all means let the med come to room temp before injecting. The injection will be less painful and in my case the side effects are lessened as well. My only side effects have been the gastro ones.....a couple of days of severe cramps and I don't get too far from from the bathroom. Does leave me feeling like a mild case of the flu for a couple of days, but that passes. I just take some of the pink stuff for the gastro stuff and stay in bed . Haven't really noticed in change in fatigue due to the shot or the med.........that comes if I get slack with the corteff......miss a dose of corteff and I hit the brick wall.

Haven't heard anything from manufacturer in relation to the malformation issue........turned out it was a tumor (benign). Will have a follow up MRI in April. Headaches lessened after the surgery, but are back again.... not as often, but when they hit are just as severe. Beyond that everyone is happy with the IGF-1 levels .... last blood work in Nov. levels at 97.

Still having the cognitive and memory issues and pretty well have accepted that this is the way it is going to be....

Hope this finds you all healthy (as possible) and ready to face 2015...........