Average Rating: 2.5 (12 Ratings)

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 Type: Rx Drug

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Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)

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More on RAPAMUNE: Reviews Summary  |  Drug Safety Information

 2  Immune deficiency Diarrhea, sore stomach, excruciating migraine, pain, nausea First day I had no side effects. Second day I spent on the toilet. That settled by the third day so I thought, "hey thats fine". Fourth day I had the weirdest pain in my arms. Then about a week after, I developed a migraine. The migraine did not go away and in fact only got worse for 4 days until I gave up and messaged my immunologist to ask if I could stop. She agreed and now I have stopped. Migraine stopped. Seriously only be on this medication if you *have* to. F 27 11 days
2mg 1X D
 4  Heart/liver transplant Head aches, mouth sores, tiredness F 52 1 years
1.5 mg 1X D
 1  Kidney Transplant I was on Cellcept and Cyclosporine for 16 years. Had multiple skin cancers, so my transplant nephrologist switched me to Sirolimus and Prednisone. Within 30 days, both legs blew up from water retention. Groin area was so swollen, I had hard time urinating. Stopped and went back to Cyclosporine / Cellcept which worked well for over 16 years. They switched me to Sirolimus and Prednisone due to skin cancer. I have my body checked for skin cancer more often now, and stopped Sirolimus. My taste buds were way off while taking Rapamune. The Lymphoedema I experienced in the 35 days I took med was crippling. My hope is that Lymphoedema will subside, since I took Rapamune for less than 2 months. M 59 44 days
 5  LAM High blood pressure, high cholesterol I am taking it for LAM, it has saved my life F 59 5 years
 2  Liver transplant Joint pain.Headache.Stomach pain. My daughter had a liver transplant cause her liver had cancer growth.Her doctor put her on this medicine one year after her transplant. She later developed numbers tumors on her liver and her lungs and she died age seven. Was it ok for her to be on this medicine? Cause she had liver cancer and it plainly states don't take if you have cancer or liver transplant.I feel like this medicine Cause her cancer to progress faster and growth happening. Please help me with my question please F 6 1 years
1 ML
 4  Treating PEComa cancer Diarrhea,fatigue, edema of left foot and right hand,nausea, dizziness, hair loss, bruising, headaches, insomnia, frequent urination,trouble focusing Appears to be stabilizing my cancer so side effects are a small price to pay F 44 6 months
8 mg
 4  Treating PEComa cancer Diarrhea,fatigue, edema of left foot and right hand,nausea, dizziness, hair loss, bruising, headaches, insomnia, frequent urination,trouble focusing Appears to be stabilizing my cancer so side effects are a small price to pay F 44 6 months
8 mg
 1  heart transplant rash, severe peripheral edema, mouth sores, swollen tongue, swollen eyelids, red around the eyes, breathing difficulties, pneumonitis. Side effects can increase over time, rather than show themselves immediately. Doctors do not have great familiarity with this drug, nor is there a good amount of data about dosing and side effects. Take with caution. Report all side effects to dr. M 45 60 days
.5 1X D
 1  Kidney Transplant - anti-rejection Zits everywhere, hair loss, skin tone went pale, nausea, loss of vision in right eye (corrected later surgically, apparent scarring), Charcot Foot (increased neuropathy caused bones to shatter, foot injury is permanent - surgery would have 50% chance of losing foot). Transplant doctors wanted to try to treat 'side effects', but when vision started to fail I stopped taking it - bad effects lingered. It apparently stops my body from fighting bacteria and slows growth (eg:hair). Hair recovered somewhat when I quit, with rogaine it is recovering well. Fortunately surgery fixed my vision (infection of cornea), but foot damage is permanent so I'm now handicapped. M 55 2 months
 5  Kidney Transplant Elevated cholosterol Great drug!!! No side effect accept for the higher cholesterol. No rejection. I feel as if I did prior to getting sick 5 years ago. F 30 2 years
 1  Kidney Transplant Anemia, elevated lipids, malabsorbtion of food, liqiud stools, wounds wouldn't heal, scarring from simple scratches, bruising, feelings of hopelessness, high blood pressure, rapid heart rate I had to go on mulitple medications just to treat the side effects of this drug. I lost 20 pounds because my food was not being absorbed into my body. I could hardly walk by the time I was taken off of it. My resting pulse was 130! I had to switch transplant centers just to find a doctor who could see that it was the rapamune making me sick. My lipids were so high I was told I was going to have a heart attack. I was only 25 at the time! Run far away from this drug. It seemed like a miracle drug at first, but turned into a nightmare. My dose ranged from 2mg to 12 mg because my absorbtion was so bad. It is an unpredictable, dangerous, killer drug. F 27 2 years
 1  Liver transplant Rash, reduced white count, reduced platelet count, severe edema, increased creatnine. All counts were way out of limits. Dr's said Rapamune attacked my bone marrow. Had taken NEORAL for eleven years following liver transplant when Dr switched me because Rapamune is supposed to be easier on the kidneys. This drug may do wonders for others but apparently I'm allergic to it. Result was nine days in the hospital having my stomach tapped, receiving platelets, hemoglobin and various meds to repair what this drug did to me. NOT ENOUGH WARNING ABOUT POSSIBLE SIDE EFFECTS!!! F 68 6 days

RAPAMUNE  (SIROLIMUS):  Sirolimus is used with other medications to prevent rejection of a kidney transplant. This medication belongs to a class of drugs known as immunosuppressants. It works by weakening your body's defense system (immune system) to help your body accept the new organ as if it were your own. Sirolimus may also be used to treat a certain lung disease (lymphangioleiomyomatosis-LAM).   (Sources: U.S. Centers for Medicare Services, FDA)