Author |
Message |
christine
Member Username: Christine_l
Post Number: 4 Registered: 11-2010
| Posted on Tuesday, November 02, 2010 - 05:37 pm: |
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My transplant time decreased my prograf 1mg and increased my Myfortic to 720mg twice daily. They said studies show Myfortic gives the same coverage as prograf but less damaging to the kidney. Has anyone having this protocol with your center? It's concerning because I have no problems but don't want to start having trouble. Myfortic has not been around long enough for this type of study I feel. I'm not the doctor of course but would like any information I could find on this. Christine |
Jason
Member Username: Jason
Post Number: 31 Registered: 02-2010
| Posted on Tuesday, November 02, 2010 - 07:06 pm: |
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Christine, I don't have this protocol at my center. I read your other post where your creatinine went up .1. Did your prograf level come in a little high? A high prograf can cause your creatinine to rise. Normally a .1 increase is nothing to be concerned about. Drink plenty of water before your next test. Jason |
christine
Member Username: Christine_l
Post Number: 6 Registered: 11-2010
| Posted on Tuesday, November 02, 2010 - 07:36 pm: |
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Will do. No my prograf is fine and was fine. They just changed my protocal on studies. Kind of interesting that no one has heard of this protocol though. Have you had your transplant? If so what is your creatnine been? |
Jason
Member Username: Jason
Post Number: 32 Registered: 02-2010
| Posted on Tuesday, November 02, 2010 - 11:07 pm: |
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Christine, I had my third kidney transplant in August 2009. My creatinine run 1.3-1.4. Jason |
miocean
Member Username: Miocean
Post Number: 43 Registered: 07-2010
| Posted on Wednesday, November 03, 2010 - 10:14 am: |
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My Prograf dose has varied based on my level. I seem to be very sensitive to it. Right now I am on 4.5 mg a.m. and 4 mg p.m. I also take Myfortic, currently 720 twice a day like you. It started out at that dose and I had such bad diarrhea and a low white blood cell count that it was lowered to 360 twice a day. About a month ago it was raised again. I have the same side effects, but not as severe. My doctor told me that over time he will eventually reduce the prograf level.
Diffuse Scleroderma Kidney Transplant March 11, 2010 St. Barnabas Medical Center, Livingston, NJ |
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nickchick
Member Username: Nickchick
Post Number: 14 Registered: 08-2010
| Posted on Sunday, November 07, 2010 - 06:46 pm: |
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At month 3 my WBC dropped so low that I was hospitalized (.05). I was told it was due to a virus or an infection...but they never found anything..just loaded me up with antibiotics and neupogen (ouch and yuk). Since then, I have had two more occurrences of low WBC but not so low that I was "segregated". My docs thought it was from the Cellcept (Myfortic) so they took me off of it and once again white count in the toilet. I tried to tell them that it could be the Prograf and they dismissed the idea until it happened the 3rd time....So off to cyclosporine with me and we'll see what happens. The regular protocol at my transplant center is not to use steroid therapy at all, if they can. They put us on approx 6 mg Prograf twice daily and 750mg Cellcept twice daily to start with. The Prograf level is adjusted according to the levels (tacralimus). However, they don't appear to do blood testing in regards to the Cellcept (Myfortic) so I'm not sure how they can check levels until you have a bad reaction from it.....a little frustrating to say the least! But, it beats the alternative
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sslgot5
Member Username: Sslgot5
Post Number: 25 Registered: 10-2010
| Posted on Sunday, November 07, 2010 - 09:19 pm: |
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I will ask my doctors about this protocol.. I would like to just be on myfortic instead of prograf because prograf is making my hair fall out..
Come celebrate with me that every day something has tried to kill me and failed. |
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ChuckZ
Member Username: Chuckz
Post Number: 979 Registered: 05-2006
| Posted on Sunday, November 07, 2010 - 09:57 pm: |
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This is interesting. I had my transplant five years ago at UPMC, which has done as many or more transplants as any center in the world. When I was in post transplant step down clinic, I showed a bit of progaf toxicity because my levels were bouncing a lot (this was a few weeks after my surgery). I asked the docs about cellcept and was told that they did not like to use it. The feeling is that it is not as effective as prograf. Despite their problems, CNI immunosuppressants, cyclosporine and its successor, tacrolimus, revolutionized transplantation. Prior to their use, five year graft survival was 50% or less, CNI drugs improved this to close to 90%. This being said, there is much to be said in favor of lowering prograf levels. Typically patients are given standard protocols which do not always favor longer term graft survival (they are graded on shorter term - acute rejection- percentages). Christine, I would go a long with your doctors but only if they are monitoring you closely, weekly blood tests for several weeks. It would also be good if they run donor specific antibody and cylex tests. Chuck |