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TransplantBuddies.org Forums » Kidney - Pancreas Transplant » Archive through November 23, 2013 » Rapamune « Previous Next »
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Dave
Member
Username: Mitch561

Post Number: 9
Registered: 07-2013
Posted on Wednesday, September 18, 2013 - 07:16 pm:   Edit Post Delete Post Print Post

I just started rapamune a week and half ago first test 5.5 then 6.6 and today 18. Has anyone had rapamune get that high that soon. I take 2mg once a day.
Cora
Member
Username: Cora

Post Number: 526
Registered: 06-2007
Posted on Thursday, September 19, 2013 - 02:52 pm:   Edit Post Delete Post Print Post

I've had my prograf go through the roof and it was because of an anti-fungal drug. (fluconazole I think). Apparently these drugs can do the same thing to rapa levels. I know the last time I was on one of those drugs, they did cut my rapa dose.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
Dave
Member
Username: Mitch561

Post Number: 12
Registered: 07-2013
Posted on Friday, September 20, 2013 - 06:20 am:   Edit Post Delete Post Print Post

Yea understand that happens, but right now because of my WBC, which is back to 4.1 now. They only have me on 2mg rapa once a day, and 1.5mg am - 1mg pm for prograf, and thats it nothing else. I am only 3 months post tx and worried I am not being protected enough.
Cora
Member
Username: Cora

Post Number: 527
Registered: 06-2007
Posted on Friday, September 20, 2013 - 01:00 pm:   Edit Post Delete Post Print Post

Dave, don't confuse the amount of the drug with the level of your protection. It depends on your absorption and your blood levels. We all absorb differently. A friend of mine was also on prograf. Our prograf levels were roughly the same. I was on 1 mg am and 1/2 mg pm. She was on a total of 13 mg per day.

Congrats on being at the 3 month mark. The first year is filled with paranoia. Don't worry about your WBC level being at 4.1. I have spent time there and didn't catch a thing (use your hand sanitizer when touching stuff outside the home). In fact, I had CMV and had a level less than 1. And even though I was in the hospital (not a clean environment) and it was flu season and I hadn't had my shot, I didn't catch anything then either. Just be careful.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
Dave
Member
Username: Mitch561

Post Number: 13
Registered: 07-2013
Posted on Tuesday, September 24, 2013 - 08:12 pm:   Edit Post Delete Post Print Post

Thanks Cora for all the help/advice. Does prograf or rapa cause red bumps that itch. I have been to dermatologist and he said its folliculitis. But it come and goes and mainly on my scalp now and is irritating.
Cora
Member
Username: Cora

Post Number: 531
Registered: 06-2007
Posted on Tuesday, September 24, 2013 - 08:31 pm:   Edit Post Delete Post Print Post

Dave, are you on prednisone? it can cause skin issues. I have some skin stuff right now (not on pred) but I'm not sure it's the rapa because I've been on it for years and the break out is recent.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
Dave
Member
Username: Mitch561

Post Number: 14
Registered: 07-2013
Posted on Saturday, October 12, 2013 - 08:55 am:   Edit Post Delete Post Print Post

Stopped prednisone 3 weeks after TP, and red bumps on scalp have got worse since rapa, but maybe just prograf causing it with rapa not sure. It wont go away and it makes my scalp really sore. The bumps are all over and have tried tea tree oil, Wen shampoo and moisturizer but nothing is helping. I wish there was a answer because this cant be fore the long term.
Cora
Member
Username: Cora

Post Number: 535
Registered: 06-2007
Posted on Saturday, October 12, 2013 - 09:21 am:   Edit Post Delete Post Print Post

Dave, I would suggest seeing a dermatologist. I know, I know, it's horrible to have to keep adding docs. Mine knows quite a bit about transplants etc. I have recently had stuff on my face and scalp and was quite worried. Basically, at the age of 50, I've developed acne. Bummer. The doc has given me something topical that helped a bit and an antibiotic. It's only one pill per day and doesn't upset my stomach, so I am happy.

Hang in there and best of luck.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
Hostess Risé
Board Administrator
Username: Rise

Post Number: 17868
Registered: 05-2003


Posted on Saturday, October 12, 2013 - 11:02 am:   Edit Post Delete Post Print Post

Hi Dave

Most recently, I have been told that I am extremely low in vitamin A and D.
I have tried supplementing with the both and still no level has improved.

Dry skin could be related to low vitamin A. Perhaps Rapamune depletes Vitamin A. I have no clue- there are many unknowns.

For the past two years, I have been seeing these red dots on my nose. They will clear up or improve with calendula ointment. They even sell calendula oil that is only used for topical use. It might help.

I have also seen improvements with Rose hip seed oil from the company NOW but will all improvements they have not totally disappeared for a long time they do appear from time to time.

The best improvement that I have seen overall has been adding more teaspoons full of Cod liver oil. Just upping my dose in one day has left my skin smooth without a dry feeling like I have never seen before.

What this is telling me that I am absorbing the cod liver oil which is high in A and D and my skin is responding.

I would have your vitamin levels check and possibly try some of the skin treatments that I mentioned.

Drugs have their side effects but hopefully we can find remedies to counteract them.


I forgot to mention that I eat extremely Healthy. Gluten free and tons of veggies. I love to eat healthy!
CF- dx at 2yrs. 2nd double lung tx-05 JMH
My Photos on Transplant Friends

Facebook-TransplantBuddiesfriends

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Contact: transplantbuddies@gmail.com
Dave
Member
Username: Mitch561

Post Number: 15
Registered: 07-2013
Posted on Tuesday, October 15, 2013 - 07:50 pm:   Edit Post Delete Post Print Post

Thank you I will try some of your suggestions. I have been using tea tree oil, and just started with baby shampoo which was recommended by TX nurse. Also I eat mostly a vegetarian diet with fish. The Derm told me it was folliculitis a hair follicle problem. But thanks for yours and Cora's help.
Hostess Risé
Board Administrator
Username: Rise

Post Number: 17883
Registered: 05-2003


Posted on Wednesday, October 16, 2013 - 11:01 am:   Edit Post Delete Post Print Post

Best wishes! Keep us posted on your results.
CF- dx at 2yrs. 2nd double lung tx-05 JMH
My Photos on Transplant Friends

Facebook-TransplantBuddiesfriends

Twitter-transplantbuds

Contact: transplantbuddies@gmail.com

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