Rash/Hives with Octreotide injection

Thanks for your post! I thought I might be the only one with reactions to octreotide! I took lanreotide first and developed rash, hives and some respiratory symptoms. I was off the medication for 2 months and then switched to Sandostatin/octreotide. I did well with the first dose. I developed rash/hives with the 2nd dose which persisted. On dose #4 I developed chest pain within 10 minutes of the dose which was eventually ruled to be an allergic reaction. With dose #5, I was pre-treated with steroids and 8 hours post-injection had an anaphylactic reaction. We stopped the octreotide for 10 months until the hypoglycemia became so severe (I have insulinomas) that I needed the benefits of the medication. In Dec 2022, I did a desensitization to octreotide and have been on it since. I still have some reaction to the medication but not anaphylaxis. I work with an allergist closely to provide anti-allergy regimens that help keep reactions under control. Best wishes in your journey!

@katinka58, I hope you saw the helpful post from @ahtaylor. Your husband is not alone.

How is he doing?

The rash is clearing up slowly, some months he gets it worse. He hurts as well as he has also been diagnosed with bone cancer this just sucks !!! Thank you

I have to take Benadryl prior to my injections to prevent a respiratory reaction, my first shot I was in the emergency room within 30 minutes of receiving the injections…

@ahtaylor Thank you for sharing your allergic reaction experience. I had a bad reaction to my first dose of lanreotide and mentioned your experience to the allergist I saw. They were not aware others had experienced this before. If you don't mind sharing, what was the desensitization process? Where abouts did you get allergy care. If possible, I'd like to connect my allergist with yours as they may consider something similar -- with more information. Thank you and take care.

I have the Carcinoid Syndrome Symptoms itching (among other things) but not an allergic reactions from the shots. However, I have heard from others , that they have allergic reactions to the shots. This sounds like a good question to submit to the Neuroendocrine Cancer Foundation’s “Luncheon with the Experts” series. They are usually held once or twice a month on Thursdays. I think others could benefit too. Perhaps unusual side effects are not as unusual as thought?
https://www.ncf.net/events

@emh1214 I would be happy to share. The desensitization process was done in conjunction with my oncologist in NC and my endocrinologist and allergist @ Mayo. They worked together on a protocol. I was admitted to the ICU for the procedure. The note below from my stay best describes the process and response:
Admitted to
the hospital for octreotide
desensitization for treatment of her recurrent, severe
hypoglycemia secondary to insulinoma. arrived to
hospital in the evening of and decision was to
hold initiation of her Octreotide desensitization until
the morning in case she had a severe reaction. On
Octreotide 1 mcg IV over 30 minutes was
initiated with pre-medications. She began having
tachycardia within 5 minutes of infusion thus it was
held. Her heart rate became normal and she was
asymptomatic. She was given Dexamethasone 20 mg
then infusion was re-initiated 5 minutes later. She
tolerated her first-third (1 mcg, 5 mcg and 10 mcg
doses) bags of Octreotide however during her third
infusion, she began experiencing "throat tightness,"
shortness of breath and rash. She informed the nurse
upon completion of Octreotide 10 mcg and was given
additional Famotidine and Benadryl. Evaluated patient
one hour after reaction, she was sitting up in bed and
eating her lunch. Was not having any difficulty
swallowing, shortness of breath or evidence of
rash/itching. States that she did not have any
associated wheezing with her SOB. Vital signs during
assessment were stable with no tachycardia and no
hypotension. Lungs were clear to auscultation with no
wheezing or diminished breath sounds. Discussed
with patient's primary oncologist. Gave Ativan 1 mg IV
then repeated Octreotide 10 mcg over one hour. Then
proceeded with remainder of Octreotide doses (bags
20 mcg and 40 mcg) however increase infusion time
from 30 minutes to 1 hour. Patient tolerated treatment
well noting only a 2/10 chest pain after completion of
the Octreotide 40 mcg. She was given Octreotide 50
mcg subcutaneous approximately 2.5 hours after
completed of the Octreotide 40 mcg infusion.
Early am on 12/08, patient had slight facial and neck
flushing. She was treated with Benadryl 20 mg and
Famotidine 20 mg with resolution.
Patient continued to do well and had no further
reactions. She was started on Octreotide 50 mcg
subcutaneous TID and received her first dose
inpatient. After a fwe hours of supervision, she had no
other symptoms and was discharged home with premedication,
Hope this is helpful! Best wishes!

I continue to receive pre-medications of decadron, benadryl and pepcid IV for 30 minutes before each injection. I also stay in the infusion center 30 minutes after each injection. Very occasionally, I will have mild breakthrough reactions.