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: 55-64 on Treatment for 1-2 years (Patient) Published: January 25

I take 2 mg daily for a rare lung disease called LAM. It is experimental and is not a cure but I am doing so much better. 15 months ago I had difficulty breathing and was on 5 liters of 02. I had problems getting dressed, sitting and bending over without turning up my 02. Now I am on 3 liters of 02 and breathe much better. My PFT's are proof it is helping me. My liver is being watched because it is affecting it and my chlolesterol is up also. If I get off this drug my disease will progress.

Comment from: BJK, 35-44 on Treatment for 10+ years (Patient) Published: August 09

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

Related Reading: cholesterol

Comment from: LNP, 55-64 on Treatment for 6 months - 1 year (Patient) Published: March 21

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.

Comment from: Lickcreeker1, 55-64 on Treatment for 2-5 years (Patient) Published: March 04

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!

Related Reading: neoral | hot flashes

Comment from: cyrgun, 65-74 on Treatment for 1-6 months (Patient) Published: February 13

developed a acne in my forehead and severe itching with a macular rash on my scalp.My triglycerides increased to 9000 and cholesterol to 300 after rapamune.Blood sugar control became difficult and CK were increase with achiness of legs.I was taking crestor for cholesterol as well.I had to stop rapamune and go to prograf.My creatinine remaine stable at 1.2 and my baseline after renal transplant was 1.3

Related Reading: rash | crestor

Comment from: Girlygirl, 45-54 Female on Treatment for 6 months - 1 year Published: October 25

My husband had a liver transplant,Jan.28,2009,and the side affects of immunosuppresant Prograf/tacrilimus were unbearable,they so bad on his kidneys,they almost shut down,but with rapamune,He has had no side effects,like he did with prograf,{hallucinations,BAD tremors{worsened while trying to sleep],insomnia,along with his kidneys nearly shutting down}Rapamune has been a great med for him since his successful transplant,its not an anti-rejection drug for kidney or heart transplant,IT IS GREAT FOR LIVER TRANSPLANT PATIENTS ALSO!!!

Related Reading: tremors | sleep | insomnia

Comment from: Dede, 35-44 on Treatment for 10+ years (Patient) Published: February 22

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.

Related Reading: Zetia

Comment from: wsnpc126, 45-54 on Treatment for less than 1 month (Patient) Published: August 20

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 transplant

Related Reading: fatigue


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