Rapamune Friends

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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.

Comment by Donna on February 13, 2012 at 10:36am

Chris, that's good you've got something that works.  I have read it is very difficult for a lot of people to control and a lot of things have been tried.  Rapamune alters the cell cycle, and in the skin this seems to have all sorts of bad effects.  Maybe its so hard to treat these breakouts because everyone's skin is different and immunosuppressed patients could be getting a wide variety of infective effects based on the person.

 

Since I was transplanted I can't use anything to wash my face and neck that scrubs because any kind of microabrasion gets infected.  I have to use cotton squares with sterile water and exfoliate chemically to keep my pores clear.  I can scratch an itch and get a pimple!  :-)

Comment by Bill S. on February 13, 2012 at 6:41am

 I meant taken off of PROGRAF

Comment by Bill S. on February 13, 2012 at 6:40am

 Stottie my kidneys never got any better after I was taken off of rapamune. They continuously got worse to the point of me starting hemo-dialysis last Tuesday. I had been off of prograf for 3 years before I got to stage 5 chronic kidney disease. TALK to your Dr about anything he feels you could do to prolong the life of your kidneys.

Comment by Chris on February 13, 2012 at 2:56am

My dermatologist prescribed me benzoyl peroxide wash, clindareach kit (swabs and a stick to get to back, and clindareach lotion because my insurance does not cover the clindareach kit (but they cover the lotion) and the benzoyl peroxide wash. The wash is $60 and the clindareach kit is $96 out of pocket, but they do work. I get break outs from my Prograf tho even before I started Rapamune. The dermotologist also prescribed me minocycline capsules that also helps. He lowered my dose to once a day and the breaks outs occured. I do not use the wash, lotion, or kit everday though, seems to dry out sckin. I do not use a regualar wash towel though, I use something that scrubs the skin that is the size of a wash towel though, just can't think of the name, but it comes in a back scrubber also.

Comment by Donna on February 13, 2012 at 1:23am

I was using those things for other reasons (ketoconozole for fungal infections and dandruff (nizoral shampoo), alpha hydroxy for wrinkles and dark spots, hyaluronic acid in my contact solution).  When I got these new bumps, my usual alcohol treatment for acne flares made it worse.  So I just started putting things on it - benzoyl peroxide, salicylic acid, dandruff shampoo, wrinkle cream....  :-)

 

Comment by Mike K on February 12, 2012 at 7:11pm

I have an appointment with my dermatologist on Wednesday and will ask about everything we have been discussing. Thank you Donna for your comments. How did you happen upon the ketoconozole mix? And how often do you apply it?

Comment by Donna on February 12, 2012 at 6:49pm

I'm not sure how it all works, but for some cancers Rapamune lowers your risk and for others it increases it.  The rapamune dermatitis can be an unmanageable side effect for some people, though.  And dermatologists don't know how to treat it yet.  They will have to come up with a new medicine,  because regular acne treatments don't work.

I get it and by chance found I could use a combination of ketoconozole, alpha hydroxy and hyaluronic acid.  Rubbing alcohol, which I used to put on stubborn acne spots, makes it much worse.

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