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 Published: October 03, 2007 ::

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! Published: January 23, 2009 ::

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. Published: September 20, 2008 ::

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 Published: August 31, 2008 ::

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. Published: June 24, 2008 ::

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 Published: February 26, 2008 ::

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. Published: January 07, 2009 ::

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. Published: January 25, 2008 ::

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! Published: November 15, 2008 ::