User Reviews for Rapamune oral

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. Read More Read Less

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

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!!!Read More Read Less

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!

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.Read More Read Less

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!Read More Read Less

Mu transplant surgeons like low dose cocktails and I only take 1 mg of rapamune alone with 2 other drugs. I've had not obvious side effects but did sell my convertable due to sun exposure issues. Overall very satisified.

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.

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

I had a kidney transplant in April 05. Received it from my daughter who was a 4 out of 6 match....also a good tissue match. Originally I was on Prograf, but then switched to Rapamune a few months after the transplant. Rapamune has agreed with me 100%. I am closely monitored with monthly blood work and things are going good. Wish the rest of my body did so well.

I had a transplant in 1987 and was initially on cyclosporin liquid dosage (mixed with milk) and then on capsules. I developed toxic resistance to the drug and was then placed on rapamune. With all drugs there are the positive and negative implications associated therewith. It has been stated that based on research and from my own medical status shown, that one does have the tendency to have high LDL levels and thus must be prescribed statins to reduce cholesterol. Suffice to say I was fortunate not to have been treated post op on prednisone as is common with most patients due to the fact that the tissue was a direct match - sibling. The cost factor is very high here in South Africa where 1mg sells for ZAR 54.00. The cost is prohibitively high and the government hospital network here does not have the budget to support patients prescribed rapamune. I am very fortunate to be with Discovery Health Medical Aid, which has a Chronic Illness Benefit and thus can obtain my meds every month without stressing. Overall, the medication supplied by Wyeth is indeed effective and does provide for piece of mind knowing that each day is another day lived to the fullest. Nevill Dyer-Smith South Africa Read More Read Less

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. Read More Read Less

my husband has taken this medication for 10 years and has worked extremely well for him.

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

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. Read More Read Less

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