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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)Comment receiving replies
Reaching to to anyone taking Ocreotide
In October I finished my 4th and last PRRT treatment with Ocreotide directly afterwards
November I started my every 28 day treatment of Ocreotide
I am having major issues with my blood pressure and pulse elevating
When it happens I can’t walk straight I feel like I will fall to the side and I have fallen
My cardiologist has put me on Nebivolol which takes a few hours to work but it dose
However now my blood pressure is barely 100/50 and I am afraid of taking Nebivolol
My cardiologist believes it is from the Ocreotide my oncologist says it is from my carcinoid syndrome and I need to take the Ocreotide
Has anyone had this issue
Please let me know
I hope everyone has had a Happy Thanksgiving
Replies to "Reaching to to anyone taking Ocreotide In October I finished my 4th and last PRRT treatment..."
Hi @sophiarose
I'm sorry to hear about your blood pressure/heart rate problems after the injection. It makes it more difficult when the specialists don't agree on the cause.
Have you considered changing the time of day when you take the Nebivolol? I see that this is classified as a beta blocker. You might talk with your cardiologist and ask if you can take it at night and see if that reduces the symptoms during the day when you are up and about.
Will you post again and let me know how you are doing?
@sophiarose
I’ve been taking octreotide injections for lung NETs and DIPNECH for 3.5 years and it lowered my BP and heart rate. I had to reduce my atenolol (per my cardiologist) to almost nothing because my heart rate was in the 40s — scary since it had always been high. BP was too low so I felt faint when standing up. I’d go off atenolol altogether but it helps the muscle cramps and fasciculations from my rare neuropathy. My cardiologist told me he wants my BP at a minimum of 100/60 or my brain and organs are not getting sufficient oxygen. I’m not suggesting you change anything without doctor approval. Just sharing my experience. Octreotide has really controlled my respiratory symptoms so I stay on it. I hope things improve for you.
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Sophiarose Hope your thanksgiving was good. I’ve been on Ocreotide for 18 months, it does control my carcinoid syndrome. I haven’t experienced what you described. I have a respiratory reaction when I receive the shots. Were you on Ocreotide prior to the PRRT Treatments, or has this started since the treatments.. I have my first PRRT treatment Thursday, with my ocreotide shots to follow, I’ll let you know if I experience the same.. It is a crazy journey…