Team Rapamune

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23 Comments

Comment by Jeffrey Isaacs on September 30, 2008 at 11:54am

Wow, it is just amazing how everyone reacts to medications differently. Some have bad side effects and others have none.

That is why I always read the information that comes with the pills. It is enough to scare you into not taking them. But without them, where would we be.

This is the reason to watch how you react and to keep your blood tests up to date.

Wonder if the type of transplant we had or the disease we had makes a difference? No matter what, I am still happy with my Gift of Life, even if there are strings attached to it.

Comment by Andrea on September 23, 2008 at 6:40pm

Hi Donnia,

Not to scare you, but I've a lot of bad side effects from Rapamune, including some pretty bad acne break out, mouth sores, a rash, abdomnal pain,gastro intestinal issues and crazy mood swings,anxiety etc... It has been pretty unbearable and as of today, my Dr. switched me back to Neoral. Although my liver and kidney function and other blood work looked great, my quality of life was really negatively impacted.

Talk to your docs about all the side effects so they can monitor you closely.

Comment by Robyn on September 18, 2008 at 6:51am

Hi Donnia,
My doctor said it can be normal for some patients, everyone reacts different. He also said I need to start drinking more water - which he has been on my case about anyway lol =P
I have like 2 pimples so far and I too am freaking out! In my teen years I never went through having acne or breaking out, I would get a pimple once a year maybe! He gave me some cream though to put on them twice a day and hopefully it works, keeping my fingers crossed!! :o)

Comment by Donnia on September 17, 2008 at 7:29pm

Robyn,

What did your doctor say?

I too am experiencing horrible headaches. Sometimes I wake in the middle of the night with my head hurting so bad that the pillow touching it hurts!

I have one pimple.... which is a pretty big deal considering I have had maybe 20 pimples in my LIFE!

Comment by Robyn on September 15, 2008 at 6:04am

I see him tomorrow, I will ask him about the side effects then. I only had the headaches the first 3 days. So far no more (knock on wood). I am starting to notice a few pimples though, which I read is a common side effect. Oh and no sores yet either which is good!

Comment by Jeffrey Isaacs on September 12, 2008 at 10:40am

Robyn: Sorry to hear you are getting bad headaches. I am a lucky one I guess, never had problems on Prograf or Rapamune. I am only on 2 mg of Rapamune and was only taking 2 mg of Program ( 1 mg in am and 1mg at night. Now only take Rapamune in the am. Have you checked back with your doctor about it?

Comment by Robyn on September 12, 2008 at 9:40am

Anyone get headaches while on Rapamune? I have had horrible headaches, and some mood swings too? Which are similiar to the ones I had while on a high dose on prednisone but since being lowered haven't had any but lately they are back..?

Comment by Jeffrey Isaacs on September 9, 2008 at 12:54pm

I only had a small sore on my tongue a few days after starting rapamune. It went away after another few days, nothing since.

Comment by Robyn on September 9, 2008 at 10:26am

When do you start to get mouth sores from Rapa once taking it? Just switched off Prograf to Rapa 7 days ago, nothing yet, knock on wood - should I be expecting anything soon? Does it generally happen to everyone taking it? =/

Comment by Donnia on September 9, 2008 at 7:07am

I too have had horrible mouth sores from the Rapa, but from what I hear of Prograf... I prefer the mouth sores :) My triglycerides are high too so my neph told me to start taking 4000mg of fish oil tablets. You know, I think we are on soooo many meds.... I am not sure what side effects are from what medicine LOL LOL!

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