Rapamune Friends

Join us if you are currently taking Rapamune.

Location: Transplant
Members: 72
Latest Activity: Mar 26

Discussion Forum

Rapamune and Elevated Lipids

Started by Michael. Last reply by mark Jun 14, 2013. 2 Replies

Rapamune and treatment by staff

Started by Pat Romano. Last reply by amberbot Jun 13, 2013. 14 Replies

Hypertension and Rapamune

Started by Michael. Last reply by SIMONE Jun 12, 2013. 4 Replies

The sweet taste of Rapamune

Started by Hostess Risé. Last reply by Chris Jan 8, 2013. 3 Replies

Cholesterol - How did you reduce your numbers?

Started by Hostess Risé. Last reply by Linda Jacobus Toscano Dec 31, 2012. 4 Replies

On Rapmune 1 year and 5 days after Heart Transplant

Started by Christine Hilton. Last reply by Christine Hilton Dec 22, 2012. 5 Replies

.5 mg Rapamune

Started by hearttxp. Last reply by Cora Dec 13, 2012. 16 Replies

Comment Wall


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Comment by John43 on December 27, 2013 at 5:32pm

I am due to start Rapamune on 1/10/2014, after the healing of my latest skin cancer surgery. I had been taking 2000mg of Cell-Cept daily until my doctor dropped it to 500mg when I was diagnosed with skin cancer (squamous cell carcinoma) and then she took me completely off of it on 12/11/2013, after my latest diagnosis. She is putting me on the Rapamune because some studies show it reduces skin cancer. I would appreciate your comments in regards to skin cancer or other skin disorders (I also have actinic keratosis, a facial and pre-cancer skin disease that appears as a flat pink spot then becomes scaly).

Comment by Joanie on December 19, 2012 at 9:30am

I have been on rapamune for 5 years now and my tongue is so sensitive to any kind of sauces. It burns when I do have any.

Comment by Joanne on July 26, 2012 at 10:00am

thanks for these great suggestions-I'm going to try the dental paste

Comment by Linda Jacobus Toscano on July 23, 2012 at 5:19pm
Well we did find something that worked really well for the mouth sores. You need a prescription, and it is a steroid, but it worked so well my daughter only needed one application at bedtime. It is called a dental paste (basically a topical cream to apply inside the mouth). The brand name is Kenalog. The generic name is Triamcinolone 0.1%. We also got this stuff called Magic Mouthwash, but she liked the dental paste the best. Oh and we were advised that she should switch to a toothpase that does not contain Sodium Laurel Sulfate, because this ingredient can supposedly trigger the sores to begin. Good luck, those canker sore are miserable.
Comment by Joanne on July 21, 2012 at 11:31am

I want to comment on the rapamune and mouth sores-Ive been on rapamune for about 3 years (changed from cellcept) I think its great but I get mouth sores every month-there is usually one or two but somewhat large and not pleasant- they stay for about ten days and then I get a few weeks sore free only to have them come back again in a different place. It's hard to believe that they could produce a drug with this awful affect but it is good in other ways. I can't believe the company expects people to put up with mouth sores. I take the nystatin but it doesn't really help or prevent. they just run their course. I'm hoping the company can do a little tweaking so this side effect is eliminated

Comment by Sue on July 13, 2012 at 7:58pm

I had my liver tx 14 yrs ago this month. I'm on both rapamune, 1 mg daily, and 0.5 of prograf every other day and so far am doing fine ! My tx was done at UNMC and the follow up has been great......every month they call to see how I am doing. Having said all of that I am a dialysis patient going 4 hours 3 times a week. The 2 drugs I take to prevent rejection have ruined my kidney so it is a vicious circle. I had the tx. because when I had my ileostomy they told me my liver was already infected with a secondary infection from the ulcerative coilitus I suffered with for 9 yrs. My creatinin was 8.9 when I started dialysis. SUE WILSON

Comment by Linda Jacobus Toscano on June 1, 2012 at 11:19am
Since my daughter has taken Rapamune, she gets a lot of canker sores in her mouth. Was wondering if anyone has experienced this common side effect, and if so, do you have any good ideas for treating them or for relieving the discomfort?
Comment by Jeff on February 16, 2012 at 4:07pm

Hi, I'm Jeff. I've been on Rapa for about 9 years now. I was reading some of the posts about acne. I'm one of the unfortunates that gets it. I was prescribed Erythromycin-Benzoyl Peroxide Topical Gel. It took about two to three weeks of use before I reallly noticed a difference. I get the 46.6GM size that lasts about two months.

Comment by Mike K on February 13, 2012 at 12:37pm
Hey bill I am so sorry to know of your kidney issues. For some reason switching from Cyclosporine to Rapamune resolved my developing kidney problems or at least have slowed them down for a while. I have read so much you have shared on this web site and have grown to admire you. You will remain in my thoughts and I wish only the very best for you.
Comment by Donna on February 13, 2012 at 10:38am

Bill and Scottie, sorry to hear about your kidney issues.  I hope things get better for you.


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