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Dave
Member Username: Mitch561
Post Number: 9 Registered: 07-2013
| Posted on Wednesday, September 18, 2013 - 07:16 pm: |
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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: |
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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 |
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Dave
Member Username: Mitch561
Post Number: 12 Registered: 07-2013
| Posted on Friday, September 20, 2013 - 06:20 am: |
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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: |
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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 |
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Dave
Member Username: Mitch561
Post Number: 13 Registered: 07-2013
| Posted on Tuesday, September 24, 2013 - 08:12 pm: |
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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: |
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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 |
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Dave
Member Username: Mitch561
Post Number: 14 Registered: 07-2013
| Posted on Saturday, October 12, 2013 - 08:55 am: |
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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: |
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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 |
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Hostess Risé
Board Administrator Username: Rise
Post Number: 17868 Registered: 05-2003
| Posted on Saturday, October 12, 2013 - 11:02 am: |
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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!
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Dave
Member Username: Mitch561
Post Number: 15 Registered: 07-2013
| Posted on Tuesday, October 15, 2013 - 07:50 pm: |
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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: |
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Best wishes! Keep us posted on your results.
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