I'm wondering if anyone has a problem with scar tissue inhibiting injection of Sandostatin LAR? I'm on 40mg every 3 weeks. I've been getting LAR injections for almost 7 years. In about the last year my doctor has been having problems injecting, and a significant amount of medication is spilled. At first I thought he wasn't thawing medication properly. But it's happening almost every month now. I also have hard lumps as though medication collects in one spot and doesn't distribute. I haven't tried massage extensively, but its very painful and doesn't seem to reduce lumps. My symptoms are trying to return and my IGF-1 is slowly increasing as I'm not receiving the optimal dose. Anyone with experience or suggestions?? I'm hoping I don't have to go the daily injection route. I imagine I'd eventually build scar tissue that way too. Thanks!
Update 9/11/13: I think I have the answer on the scar tissue, time will tell. I realized my doctor was giving my injections too high on the buttocks, and not rotating them as much as he should've. Not that I can blame him, he's my primary care doctor, not an endocrinologist. My horrible memory and lack of attention to details doesn't help either. So it's been two appointments since he's been injecting and rotating properly. The lumps from injection are much smaller, and there's no problem with administrating the medication (no spilling). I've also made sure to lay down when getting injections, to ensure that he can see the injection site properly.
Now I'm wondering if I need as high a dose, or as often an injection as I'm receiving! I've been extra fatigued and irritable. My GI problems seem worse. And my muscles are very sensitive and sore again. I'm guessing it's all Sando related. Hopefully it will clear up after a few months??
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The surgery you had did not sure your acromegaly? Does this mean there is still tumor tissue causing the elevated IGF-1 levels?
Exactly.
Have you tried Somavert? I have a microadenoma and haven not had surgery. I use Somavert once a day but also I have had sandostatin under the skin, so there is no scar tissue. I took sandostatin/octreotide sub cu 200m four times a day instead of long acting because I didn't want to use it intramuscularly. You can also take both sando and somavert as long as your liver can handle it.
No I haven't tried Somavert. I thought maybe laying down would help with injections, but I'm still getting a huge lump which I assume is from scar tissue. I didn't know you could take Sandostatin and Somavert at the same time. Thanks for the tip!
Hey. Read about anger you have been experiencing. Almost 7 years since my Pit surgery at Univ Fla and I take Somatuline monthly. Anyway, my anger outbursts are embarrassing but I can't help it. They don't happen daily but when they do occur I am sure I appear nutty as hell. Do you shake and stuff when this happens??
I don't usually have a problem with anger outbursts anymore. I did feel as though I was nutty as hell too! It's horrible to feel that way, and to feel so out of control. This is definitely a symptom of Acromegaly, or hormonal imbalance caused by it. Or maybe caused by some medications used to treat it and the multiple symptoms. If possible don't beat yourself up over it! I've had to forgive myself and let go of so much embarrassment over this. I had to realize this disease doesn't define me as a person. I'm not a bad person, although this disease has caused me to do bad things and feel that way. My outbursts were the worst right before I had surgery. I don't remember shaking, but I did feel enraged, and helpless to stop my behavior. And of course ashamed afterward. I also hit a point where I didn't trust myself anymore. I was afraid I would physically harm someone. At that point I started taking Lexapro which helped with my depression and anger. But what helped most was having surgery and taking the Sandostatin so my hormones were better regulated. After surgery my depression and extreme anger lessened so I didn't need Lexapro. On lower doses of Sandostatin I was easily stressed and angered, especially around the time I needed shots. Since being on 40mg I don't get stressed as easily, and I feel much more patient and more peaceful usually. I do still try to avoid things that I know will stress, aggravate or anger me though. For example I don't like crowds, I usually avoid shopping when there are more people around, I try to avoid driving during rush hour, I avoid people and situations - I've completely cut some people out of my life for my own health, etc. I realized I can't do things like camping because I can't sleep well and that will trigger an outburst. One of the biggest triggers for me is being fatigued and not getting enough rest. I hope you can find some peace. Maybe even something like practicing breathing or yoga might help. I tried it but it's not for me. Good luck! I'm available to chat further if it will help. I know how frustrating this is.
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