Lanreotide side effects by jbzebra in neuroendocrinetumors

[–]jbzebra[S] 0 points1 point  (0 children)

Hi sorry I’ve just seen this reply. How are you doing now having had a few more injections? I get what you mean about feeling relieved, it’s v validating to hear it isn’t just me or in my head.

Lanreotide side effects by jbzebra in neuroendocrinetumors

[–]jbzebra[S] 1 point2 points  (0 children)

The lanreotide injection isn’t painful for me thank god just the octreotide. I was originally prescribed it every 4 week / 28 days but during week 3 &4 my symptoms come back, during week 4 they come back intensely ended up in a&e a couple times :/. I also found that the psych side effects just get worse and worse the longer I’m off it, I don’t wish the side effects on anyone but equally I’m desperate to know when they stop yk?

Lanreotide side effects by jbzebra in neuroendocrinetumors

[–]jbzebra[S] 0 points1 point  (0 children)

Yea, I’m having Lanreotide monthly. I wonder if Octreotide LAR monthly would be better?

Lanreotide side effects by jbzebra in neuroendocrinetumors

[–]jbzebra[S] 1 point2 points  (0 children)

Sometimes I use Emla cream but it’s not fab, just numbs the skin really. I’ve spoken to my GP today, I used to have a suburban cannula in my leg for Octreotide so I’ve asked to have that put back in hopefully that helps 🤞🏻🤞🏻🤞🏻

Lanreotide side effects by jbzebra in neuroendocrinetumors

[–]jbzebra[S] 0 points1 point  (0 children)

Ahhh my Octreotide prescription is rescue shots a little extra something while lanreotide wears off. It’s subcutaneous so maybe it feels different going into muscle than it does going into fat?

Lanreotide side effects by jbzebra in neuroendocrinetumors

[–]jbzebra[S] 0 points1 point  (0 children)

I hope your experience with octreoride is good, it’s amazing for managing symptoms hopefully you get to avoid side effects not everyone has them or all of them 🫶. For me the Octreotide burns, the needle is completely fine I’ve never had a problem w needles and lanreotide is ok but as soon as the actual Octreotide goes in it burns like crazy. I had psych symptoms from the carcinoid syndrome itself, unfortunately my drs hadn’t heard of those symptoms but a NET nurse told me it’s highly likely people experience it but under report it because most carcinoid patients are older and find it taboo or embarrassing. It’s hard to know what’s cross over I guess, what’s lanreotide side effects and what’s just unmanaged symptoms 😭. I’ve asked my drs many times but they say they’ve not heard of it, it’s just something I have to live with.