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: elevenmilehigh, 55-64 on Treatment for 5-10 years (Patient) Published: August 31

I have experienced considerable swelling in my left leg and ankle since being prescribed this drug by my post transplant medical team. I have a bilateral lung transplant

Comment from: 35-44 Female on Treatment for 6 months - 1 year (Patient) Published: January 23

I had a liver transplant in March 2007 and was initially placed on Prograf and Cellcept. My HBP meds didn't work as well, so my post-transplant team changed my Prograf to Rapamune and my HBP stabilized. Other than the drug cost, I am highly satisfied with it. Unually Rapamune is not used in liver transplant patients, but doctors are finding that is work as wel as other immunosuppresants. I am glad I had a choice!

Related Reading: liver | Prograf | Cellcept

Comment from: BILLY, 65-74 Female on Treatment for 1-2 years (Patient) Published: September 20

I have been free of most side effects, but like the 24-year-old leukemia patient with a stem-cell transplant I TOO experienced severe hand and calf cramps. IT TOOK ME 10 MONTHS BUT I DISCOVERED I WAS LOW ON MAGNESIUM. AFTER TAKING 1-2 250 MG MAGNESIUM SUPPS EVERY OTHER DAY. CRAMPING ALL GONE! HOPEFULLY HE WILL SEE THIS AND TRY IT. MANY PHYSICIAN ARE NOT "SAVVY" TO THIS SIMPLE TREATMENT.

Related Reading: leukemia

Comment from: 714, 45-54 on Treatment for less than 1 month (Patient) Published: January 07

I had a kidney transplant in September 2008. I was on Prograf & Cellcept, both of which worked well for me. My WBC dropped because of another drug, and I was taken off the Cellcept and put on Rapamune. Within a week on Rapamune I had mouth ulcers that would not heal, and by three weeks I was bruising and retaining water. Fortunately my WBC improved so I could stop Rapamune and go back to Cellcept. It's an individual issue - some people tolerate Cellcept well (I do), others Rapamune (I didn't). Talk to your doctor. It's your body and you are responsible for it. You have options. Get on drugs that work for you.

Related Reading: Rapamune

Comment from: Ed, 55-64 Female on Treatment for 1-6 months (Patient) Published: February 26

I am using this for liver rejection. The Prograf for liver rejection like to have killed me, throwing up all the time and other side effects. Rapamune causes some itching but overall, it is good

Related Reading: itching

Comment from: 35-44 on Treatment for 1-2 years (Patient) Published: October 03

my triglycerides have gone sky high over 350, plus I have had occasional sore throats, once every 2 months? Not that often. Kidneys overworking throughout the night. Drink water 1/2 hr prior to going to bed 2 eight oz glasses..use rapamune for mild lupus 2mg one time a day

Related Reading: lupus

Comment from: Sophie, 35-44 on Treatment for 1-6 months (Patient) Published: February 21

I am 44 years old and had a kidney transpant in the fall of 2001. My brother was my donor, and we were a "perfect match!!!" My initial anti-rejection drugs were Cellcept and Prograf. Over the last several months, my Creatnine was going up around 2.0 - 2.3. Another transplant doctor reviewed my case and had me switch to Rapamune. Now I'm having issues with my skin and issues with mouth sores, (and sore throat). I'm trying to be positive and a good patient. I just don't feel like myself on this new medication. I had a follow-up visit and understand that my body is adjusting.............. I guess I'm just frustrated. I will try to remain optimistic and believe that Rapamune is a better drug for the long-term. Don't get me wrong, my post-transplant life has been amazing. I just want to feel like myself again.

Related Reading: sore throat

Comment from: Rozik, 55-64 on Treatment for 1-2 years (Patient) Published: September 11

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.

Related Reading: cancer


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