Everolimus and Itching: What Users Say

• its...
• Taken for 1 to 6 months
• June 9, 2014

Everolimus for Breast Cancer "I've been taking it for 5 months. After 6 weeks on 10 mg, my lymphedema arm got infected and really swollen. I was told it was shingles and Lyme disease. After 2 rounds of antibiotics, I went back on 5 mg. My subsequent scans show liver mets decreasing. My insurance cap was exceeded after 1 month ($$$), but I qualified for a Novartis program for free medicines-check it out. Side effects on 10 mg were intense-like chemo. 5 mg is much more tolerable, still, I must take Protonix every day for gastric upset. And I get really itchy."

• wrd...
• Taken for 6 months to 1 year
• August 31, 2015

Everolimus for Breast Cancer "Stage 4 with lymph and bone metastasis. Never on infusion chemo due to my autonomic diabetic nerve damage. Hormone treatments failed. Tamoxifen gave me terrible forgetfulness. Took Xeloda. At 6 months, scan showed cancer gone, except in a giant ulcer on the chest. Then Xeloda failed and cancer spread rapidly. Afinitor worked quickly with visible changes in two weeks. Four weeks, ulcer showing definitely better. Been about 5 months. Cat scan showed no cancer active. Ulcer a third smaller and still healing. Cancer itching totally relieved, although some itching as larger tumors heal. Had some slight nose bleeding issues early on, but with summer humidity, no problem. Chronic slight cough and congestion. Short of breath but can walk."

• Lif...
• Taken for 1 to 6 months
• March 15, 2016

Everolimus for Breast Cancer "Although the medication did effectively treat my cancer, the side effects were so severe that I decided to discontinue use of the drug and try an alternate treatment. Skin rash started on my hands initially and spread to my entire body, causing severe itching and scratching, which led to something looking like opened bug bites all over. Severe gum irritation, described by my dental hygienist as your gums are flapping in the wind, also red swollen gums, which caused me to be unable to eat anything not soft. Lost 10 lbs the first two months. Also, projectile vomiting, diarrhea, and nausea. At three months, I found it had made me diabetic and raised my triglycerides to over 500. That's when I opted to stop treatment."

• Anonymous
• Taken for 6 months to 1 year
• January 20, 2018

Everolimus for Neuroendocrine Tumors "I started this in April 2016. The side effects did not start until June. It started with diarrhea, then hemorrhoids, then itching, weight loss, and loss of appetite. I kept telling my doctor something was wrong, but he told me to eat anything I wanted. But the final situation was I got an infection in my right eye. I was in the hospital for 10 days. He only came once to tell me to stop taking the Afinitor. Upon release, I had to go to a doctor who specializes in infectious diseases for 2 months, and this was every day. Weight-wise, I went from 162 to 124. I am now just skin and bones. Also, the tumor just kept growing. I went to another cancer doctor, and he performed surgery to remove the tumor. This medication is the worst."

• Jul...
• Taken for 6 months to 1 year
• April 1, 2022

"I suffer from chronic allergies to almost everything since I was 32, 8 years ago, a horrible disease that I developed after being pregnant. Mast cell activation disorder (MCAD) is the name of the condition. For the treatment, a mix of desloratadine, bupropion, and curcumin to be stable. But now I also try this Everolimus; in the first 2.5 months at 1 mg/day, I had low immunity, mouth sores, and a flare of candida, also some acne and itches, a bit of hair fall and munchies, but I reduced the dose to 1 mg/2 days and got better, almost no sign of allergic reaction, full energy, normal life. So the reactions are very dependent on the dose and length of the use period. Of course, at high doses, the reactions could be violent. I believe that if it is not an urgency, the initial dose should be pretty low, like 1 mg/day and increased with time if needed. Good luck to everyone."

• mis...
• Taken for less than 1 month
• November 3, 2020

For Organ Transplant, Rejection Prophylaxis "At first, everolimus was okay, but after a few weeks, I developed bad sinus issues, flu-like symptoms, a heavy head, fatigue, and itching. Very strong drug and expensive as well."