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Rapamune

USER REVIEWS

Comment from: luckie, 55-64 on Treatment for 2-5 years (Patient) Published: February 10

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.

Related Reading: imuran | prednisone | skin cancer

Comment from: 45-54 (Patient) Published: June 02

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.

Related Reading: rapamune | liver | portal hypertension

Comment from: 45-54 on Treatment for 2-5 years (Patient) Published: February 20

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.

Related Reading: myfortic | prograf | rapamune

Comment from: Junbug, 35-44 Female on Treatment for 5-10 years (Patient) Published: July 23

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.

Related Reading: prograf | acne

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: cholesterol | zetia

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: 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: cellcept | cancer

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: 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: 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: Terry FM, 45-54 (Patient) Published: February 13

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!

Related Reading: prednisone | arava | edema

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: 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

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: rapamune | lupus

SLIDESHOW

Kidney Stones: Symptoms, Causes, and Treatment See Slideshow
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: rapamune | edema | cholesterol

Comment from: ponga, 45-54 on Treatment for less than 1 month Published: November 15

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!

Related Reading: prograf | cellcept

Comment from: Nevill, 45-54 Female on Treatment for 10+ years (Patient) Published: August 09

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

Related Reading: rapamune | statins | prednisone

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.

Related Reading: liver

Comment from: NJ, 55-64 on Treatment for 1-6 months (Patient) Published: August 22

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

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: John T. , 65-74 Female on Treatment for 2-5 years (Patient) Published: May 07

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.

Related Reading: lasix

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: acne | rash | cholesterol

Comment from: Female on Treatment for 6 months - 1 year (Patient) Published: June 24

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.

Related Reading: leukemia | rapamune

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: skin cancer | rapamune | cellcept

Comment from: jchampion, 45-54 on Treatment for 10+ years Published: May 19

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

QUESTION

The only purpose of the kidneys is to filter blood. See Answer
References

Medical Editor: John P. Cunha, DO, FACOEP

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