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I have also been diagnosed with DIPNECH and have probably had for 20 years. I have 20 tumorlets spread on both lungs. My cough became chronic and unbearable three years ago. What are the side effects from octreotide? Have you lost your hair or has it thinned?

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Replies to "I have also been diagnosed with DIPNECH and have probably had for 20 years. I have..."

@marciamiller Hey Marcia, I am on the 3 times a day, self-administered injections. I chose that route initially to see what side effects I might get. I figured they would be obviously easier to stop than having the drug in my system for almost a month with the I.M. version. I found my side effects to be somewhat mild. A slight change in my taste buds, and a little bit of hair loss. The worst has been overwhelming fatigue. I literally could sleep for 12 hours at a time. I'm hoping if I go to the I.M. version that will get better. I've been told it most likely will. The shots have helped with the constant cough and throat clearing. That has been a blessing. Hope this helps. 💕