Good news. I'm on a new dosing schedule for Sandostatin 40mg - every 3 weeks now instead of every 4 weeks. I was tested after 3 months on the new dosing schedule. GH is 1.8, IGF-1 is 379. But, my numbers were basically the same on Sandostatin 40mg every 4 weeks. I'd hoped to see a dramatic improvement. I'll be seeing a new endocrinologist at UCSF end of October to discuss whether I should go back to the old dosing schedule, and a possibility of re-operation (slim in my opinion based on my MRI).
Also on Sandostatin side effects, my blood pressure may be slightly higher. I haven't been taking blood pressure readings every day, since I've been jogging daily and at my doctor's appointments my blood pressure is always low enough. And any other issues are negligible, although I do worry about potential damage to gallbladder.
On another note, I believe the high doses of Sandostatin had been causing almost daily muscle pains. Any time I exercised (it was very infrequent before), or did even a small repetitive activity I would have muscle pain for days. Since I started jogging daily (jogging or jog/walking 15-30 minutes) I haven't noticed the muscle pain, so that is wonderful! It seems I may have less Sandostatin side effects due to exercising, even a small amount daily. I did approach my new exercise plan carefully and slowly, and I don't push myself too hard. I'm naturally a very lazy person, but I'm realizing that not exercising doesn't seem to be an option for me. It's imperative to my health.
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Hi Jenny,
Glad to read that you feel healthier since you started your new exercise plan and have less joint pains. I on the other hand was telling my hubby today that my joints are killing me since starting up again on my Sando injections since the birth of my daughter. I started my exercises a few weeks after her birth and boy do my joints hurt. Funny, I was not getting my injections during pregnancy and had no joint pains at all.
Too bad that your IGF-1 has not decrease since you switch to every 3 weeks :( My readings decreased when I was receiving my Sando on a 3 week schedule instead of every 4 weeks. I felt a huge difference. Do you feel any difference since the 3 week injections eventhough your readings are the same?
Best of luck,
Julie
Sorry about the joint pain Julie. It wouldn't surprise me if Sandostatin is the culprit. I'm glad that it can keep the Acromegaly under control, but at the same time like most drugs there are side effects. For me, I don't think it was really joint pain, it was muscle pain. I'd feel like somebody used me as a punching bag every day, it was that kind of sore.
And yes, I think I do notice a difference since I've been getting shots every 3 weeks. Or maybe it's since I've started exercising? I'm not as tired, I have more energy, more endurance. I don't notice needing to rest for the few days before and after the shots like I used to. I used to do nothing except lay on the sofa those few days pretty much. I seem to be able to focus a little better, although I still have concentration and memory issues. Good luck to you too. I can't imagine trying to deal with Acromegaly and being pregnant, or having small children at the same time. What a challenge!
The anti-inflammatory effect of exercise is well known. Have you tried vegetable juicing? Vegetables contain high levels of antioxidants, which act as powerful anti-inflammatories. When you juice vegetables you get these effects in concentrated form. When do you ever sit down and EAT 12 carrots at a sitting? Never--but when you juice, you get the beneficial effects of all those veggies in one drink. It's simply excellent for controlling any inflammation in the body. It's best to juice organic vegetables!
Juicing is also a fast way to raise potassium levels and lower blood pressure. Vegetables are very rich in potassium.
I didn't know that. Thanks for the tip!
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