Rapamune User Reviews

Rapamune - User Reviews

Rapamune User Reviews

Now you can gain knowledge and insight about a drug treatment with Patient Discussions.

Here is a collection of user reviews for the medication Rapamune sorted by most helpful. Patient Discussions FAQs


Comment from: Terry FM, 45-54 (Patient) Published: February 13

I am kidney/pancreas transplant patient, post 6 yrs. After 2 years of Prograf, I began to lose my hair. Was swithched to Rapamune in addition to Prednisone and Arava, on alternating days. Once I began this therapy, I felt AMAZINGLY better and have continued to feel great. Only down side, at 6 year mark of transplant and 4 years on Rapamune, developed severe edema (fluid retention) in entire left leg, hip and groin, which kidney is on left side. Am treating with fluid pills and compression stockings. This helps. Due to feeling great and beautiful lab work on Rapamune, made decision to stay on it. I really do LOVE this drug!

Related Reading: Arava | edema

Comment from: Female on Treatment for 6 months - 1 year (Patient) Published: June 24

I am a 26 year old recent leukemia survivor who had a stem cell transplant. Before I was diagnosed almost 2 years ago, I was very active and energetic. I am again now, but the rapamune has been very hard for me. Especially with my trying to play drums (a passion of mine). I get really bad hand cramps. I also get cramps in my back, forearms, neck and feet. The only way to stop it is moving, shaking and constantly massaging the area cramping. It can be very frustrating. Trying to write can be a very long ordeal. Drumming gets interrupted by trying to work the cramps out. The cramping in my hands can happen even if I'm not doing hand intensive activities. There have been no other noticeable side effects. So if this medication is helping keep me alive, than I gladly accept them and am very thankful.

Comment from: Junbug, 35-44 Female on Treatment for 5-10 years (Patient) Published: July 23

I received a kidney transplant in 2006 from my brother; 5 of 6 marker match. I was initially on Prograf but had problems. Doctors said it restricted my veins/arteries. I was switched to Rapamune and thought I was doing well until reading the contradictions listed here. I have had trouble with acne and sleeping for years and recently I started swelling in my feet and legs. I also suffer with neuropathy in my extremities. I was recently off Rapamune and noted the tingling in my hands and feet stopped. Has anyone else had this experience? Please so not misunderstand…I am very thankful for my second chance at life and enjoy each day but, I just wonder if there is a better drug for ME???? The tingling in my feet is a big distraction for me as it causes difficulty walking.

Related Reading: acne

Comment from: luckie, 55-64 on Treatment for 2-5 years (Patient) Published: February 10

I have had my kidney transplant 32 years. I was on a combination of Imuran and prednisone. However the Imuran was allowing so much skin cancer to develop, it was alarming. Three years ago I was switched to Rapamune and prednisone. The only negative side affect is some edema around my feet and ankles, especially the side where I had extensive skin caner with lymph node removal. The Rapamune has diminished the level of per-cancerous skin lesions. Other than that I hardly know the difference. Now seriously, the drug I wish I could dump is the prednisone, but my doctor has me on the lowest dose possible. Oh well. I am alive and enjoying life to the fullest.

Related Reading: Imuran | skin cancer

Comment from: John T. , 65-74 Female on Treatment for 2-5 years (Patient) Published: May 07

I had a kidney transplant 5 yrs. ago, given to me by my youngest daughter. I was put on Prograf, but they said long term use could cause kidney problems, so I was switched to Rapamune. I have been on it for over 4 yrs. with what I thought was no side effects. But reading some of the patients reviews makes me wonder if my badly swollen ankles, legs, and cramping in the groin and fingers could be another side effect. I am taking large doses of Lasix with little relief. My triglycerides are sky high, but some of my doctors think statins,etc. will help.......they haven't. Its like shoveling against the tide. Does anyone out there, who is on Rapamune, have swallowing problems? After being on it for so long, maybe serious side effects are starting to surface. All medications have side effects, but Rapamune has kept my kidney functions completely normal for over 4 years. I highly recommend it.

Related Reading: Lasix | statins

Comment from: ponga, 45-54 on Treatment for less than 1 month Published: November 15

My husband had his Kidney transplant in January 2006,he was doing very well with his Prograf and Cellcept, his Kidney doctor checked on him and his labs regularly,until he got a new transplant doctor who had put him on 9mg of Rapamune x1 then 3 mg everyday. He started having change of condition -body weakness, high blood sugar (which by the way was the reason why he was put on the Rapamune- to lower his blood sugar)and the most miserable - mouth sores, couldn't even talk. I wish he would have just been left alone with whatever was working for him. After 2 years of working - he is now just starting to use his sick benefits.Not good!


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