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Most voted positive review

14 People found this comment helpful

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 dim...

Most voted negative review

3 People found this comment helpful

Rapamune is very dangerous especially for liver patients. if you dont believe me ask your doctor. This drug can and will kill you. I am kidney transplant patient 19 years. The Rapamune which I was on caused VENO OCCLUSIVE DISEASE and PORTAL HYPERTENSION, tiny veins in the liver are blocked causing ascites. I need paracentesis weekly to remove fluid from my abdomen, 2.5 to 2.8L every procedure. No...

Shared reviews and ratings

mirthofearth | 25-34 | Female | On medication for 1 to less than 2 years | Patient
2/4/2020
Condition: Lymphangioleiomyomatosis
Overall rating 2.7
Effectiveness
Ease of Use
Satisfaction

I have that rare lung disease Lymphangioleiomyomatosis (LAM) and Tuberous Sclerosis Complex (TSC) and I’ve been on Rapamune 1 mg for a while now. The first 8 months I was on it was pure hell. I had bad mouth sores (I was prescribed Dexamenthasone as a swish and spit to counteract them) and I gained a lot of weight since Dexamenthasone is a steroid. I dropped some weight after the worst of the mouth sores subsided but I’ve experienced depression, skin sores in other parts of the body, dizziness, lack of motor control, random crying, burning internally, dehydration, pain everywhere (especially in the stomach),, loss of appetite, muscle weakness, and exhaustion. I’m not a fan of this medication but I have no choice. I’m in a “Cake or death?” situation for any of you Eddie Izzard fans out there. Despite all these side effects, I can breathe better and the tumors in my kidneys and on my face have shrunk, which is the point. Things improved greatly after I was on the Rx for about 14 months and I had better energy, few mouth sores and things were improving. However, I had an issue with a pharmacy and ran out of medicine, and missed 3 doses. It felt like I was nearly back to stage one when I started taking it again. I’ve been back on it for a little over 3 months now and I’m still having a hard time but I’ve had fewer mouth sores this time and was able to treat them effectively with Lysine and tea tree oil. It took 3 weeks for the side effects to sideswipe me when I restarted my Rx. TL;DR: My specialists are pleased with the results and everyone comments on how much prettier I look even thought I’m a grump about it. I think this stuff sucks but it’s saving my life.Read More Read Less

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Slama | 55-64 | Female | On medication for 2 to less than 5 years | Patient
10/6/2015
Condition: Lymphangioleiomyomatosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Has kept my lung function stable for the last four years. My only side effect is the mouth ulcers.

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NJ | 55-64 | Female | On medication for 1 to 6 months | Patient
8/22/2014
Condition: Prevent Kidney Transplant Rejection
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

Having to mix it with juice was very inconvenient and it sent my cholesterol to over 600!

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Anonymous | 45-54 | Female | Patient
6/2/2013
Condition: Prevent Kidney Transplant Rejection
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction

Rapamune is very dangerous especially for liver patients. if you dont believe me ask your doctor. This drug can and will kill you. I am kidney transplant patient 19 years. The Rapamune which I was on caused VENO OCCLUSIVE DISEASE and PORTAL HYPERTENSION, tiny veins in the liver are blocked causing ascites. I need paracentesis weekly to remove fluid from my abdomen, 2.5 to 2.8L every procedure. Now I need a shunt in my neck called TIPS to help reduce the fluid. I wrote a previous review yesterday about the danger of this Rapamune but it was not published hopefully this one will.Read More Read Less

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Anonymous | 45-54 | Female | On medication for 2 to less than 5 years | Patient
2/20/2013
Condition: Prevent Kidney Transplant Rejection
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

I had my transplant in the fall of 2007, unknown donor, at first I was on myfortic and prograf. I was switched from the myfortic to rapamune in 2009, at first I was doing well, had very little side effects and felt well, however by the summer of 2010 I had developed lymphodemia in my right arm, for no known reason. I've read that this is a rare side effect from the rapapmune and I'm hoping to be taken off it soon before the lymphodemia gets worse.

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Junbug | 35-44 | Male | On medication for 5 to less than 10 years | Patient
7/23/2012
Condition: Prevent Kidney Transplant Rejection
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

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. Read More Read Less

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Dede | 35-44 | Female | On medication for 10 years or more | Patient
2/22/2012
Condition: Prevent Kidney Transplant Rejection
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

I had a kidney transplant 19 years ago... received it from my brother. I've been on Rapamune for 10 years with very little side effects. I just hate that now my cholesterol is high and I have to take Zetia everyday.

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Anonymous | 35-44 | Female | On medication for 10 years or more | Patient
2/11/2012
Condition: Prevention of Cardiac Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Only issue is that it increases your cholesterol and triglicerides - so need to take medication for them (statins), otherwise the drug is great for kidney.

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luckie | 55-64 | Female | On medication for 2 to less than 5 years | Patient
2/10/2012
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

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.Read More Read Less

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Rozik | 55-64 | Female | On medication for 1 to less than 2 years | Patient
9/11/2011
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I had akidney transplant in April of 2009 my son was the donor,I was on cellcept and prograf and prednisone, but on July of 2010 I was diagnosed with central nervous system lymphoma,had intense chemo for the last 14 months,they switched me to 2mg.daily use of rapamune with no side effects,my cancer is in remmision and the kidney is doing perfect.

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Rapamune | 65-74 | Male | On medication for 2 to less than 5 years | Patient
8/12/2011
Condition: Prevention of Cardiac Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Have been on this medication for 3 years following Heart transplant and have had no symptems of rejection.

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BJK | 35-44 | Female | On medication for 10 years or more | Patient
8/9/2011
Condition: Prevent Kidney Transplant Rejection
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

I have my transplant for 10 yrs now and 1mg Rapamune has been in my daily med list. My right leg has edema/swelling I wear a severe compression stocking for the last 3 1/2 yrs and this is on my right side, same as Transplant- my donor is my mother. cholesterol also high

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LNP | 55-64 | Female | On medication for 6 months to less than 1 year | Patient
3/21/2011
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I had my kidney transplant 6 mo ago. I'm on 1 mg/day of Rapamune and 4 mg/day of Prograf. My creatinine is 0.7. I do not have any side effects with this dosage.

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Anonymous | 55-64 | Male | Patient
3/3/2011
Condition: Prevent Kidney Transplant Rejection
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction
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Terry FM | 45-54 | Female | Patient
2/13/2011
Condition: Prevent Kidney Transplant Rejection
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

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! Read More Read Less

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tweetcam | 35-44 | Female | On medication for 5 to less than 10 years | Patient
10/10/2010
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I was very happy to start on this medication. It has a lot less side effects for me than the Cyclosporin I was taking before I started on the trial for it. I take 4mg per day and I have never had a rejection prolem in the 7 years I have been on it.

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wsnpc126 | 45-54 | Female | On medication for less than 1 month | Patient
8/20/2010
Condition: Prevent Kidney Transplant Rejection
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction

I had a kidney transplant 1.5 yrs ago. Due to minor skin cancer lessions, the doctors decided to try Rapamune vs Cellcept. They thought this would help decrease the speed of lessions appearing. I did not realize I was experiencing side effects from the Rapamune until a friend looked at this site. I had half of the side effects. (The ultimate was a major mouth ulcer, chicken pox on the back of my throat and fatigue.) I started the med on a Thursday and by the following Monday - the first symptom appeared. I am no longer on Rapamune! Thanks to everyone - I now know, don't let them fix something that isn't broke! Happy life after transplantRead More Read Less

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John T. | 65-74 | Male | On medication for 2 to less than 5 years | Patient
5/7/2010
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

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. Read More Read Less

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pres | 45-54 | Female | On medication for 1 to less than 2 years | Patient
3/31/2010
Condition: Other
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

I had a liver transplant September 2008.I was on Prograft and Cellcept.I had a stroke November 2008. Liver MD's said they had never had a patient who had this very rare side affect.I was placed on Rapamune and doing well. Only issues are very high lipids and BP which is being treated with meds.

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Lickcreeker1 | 55-64 | Female | On medication for 2 to less than 5 years | Patient
3/4/2010
Condition: Other
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I am a liver transplant patient of 8-3-05. I could not take prograft, or neoral. Then they changed me to Rapamune and it was great. No tremours, tingling sensations, it was a nightmare before. All was going great and then they wanted to add Neoral as my new Transplant Dr. thought i should be on 2 anti-reject drugs. It was a nightmare again. I can only take Rapamune. I am monitored closely each month and i can actually tell when my levels are up as i have hot flashes. Then they tell me to take 1 less miligram. The only side effect i seem to have is when i am very nervous i have mouth ulcers and i was told they are a side effect and if they continue they will take me off of Rapamune. Let's pray they don't. Overall, This was a lifesaver too!Read More Read Less

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