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Latest Activity: Mar 26
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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).
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.
thanks for these great suggestions-I'm going to try the dental paste
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
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
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.
Bill and Scottie, sorry to hear about your kidney issues. I hope things get better for you.
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