the drug manufacturers don't tell us about hair loss, brain damage, severe depression, hallucinations, spinal cord damage, memory loss, cognitive problems, shaking, etc. I've been on it for 5 years and my pre-prograf MRI of my brain was fine. Now I have brain damage. I've also been diagnosed as severely bi-polar, and my once thick hair is all but gone!
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2 People found this comment helpful
Lots of side effects, hair loss is severe. Tingling, blurred vision, and insomnia. I am very thankful for my liver. Six months tomorrow 8/5/2014.
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Neil | 65-74 | Male | On medication for 6 months to less than 1 year | Patient
4/17/2009
Condition: Prevent Kidney Transplant Rejection
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction
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[email protected] | 19-24 | Female | On medication for 10 years or more | Patient
2/3/2009
Condition: Prevent Kidney Transplant Rejection
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction
Iv'e been taking prograf for the past 14 years because of my kidney tranplant. Knock on wood, Iv'e had no problems with this medication and no kidney rejection.
4
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yankeeflyer72 | 55-64 | Male | On medication for 1 to less than 2 years | Patient
1/30/2009
Condition: Prevention of Liver Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
Feb. 19th '09 will be 1 year since Liver Tx due to Cirrhosis caused by Hep-C. Also development of liver Cancer. Initially I was taking 3.5mg twice daily, increased to 4mg daily, gradually reduced dosage until now I am at .5mg(1/2mg.) daily. Blood work shows Prograf level at 6.4-6.9. Type 2 Diabetes was controlled by diet prior to Tx. Now must use insulin. Very happy with results. Also taking Ursodiol, Magnesium supplement, Mega-Vitamin supplent.
8
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SHARITA | 35-44 | Female | On medication for 2 to less than 5 years | Patient
1/29/2009
Condition: Rejection of Liver Transplant
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction
I CAN SAY LIKE MOST FOLKS THAT COMPARED TO MY LIFE BEFORE IM PLEASED. PROBLEMS NOTICED: MEMORY LOSS(NEED EXTRA TIME UNLIKE BEFORE). SKIN DISTUBANCES THAT WERE SEVERE IN THE BEGINING. HTN AND DIABETES AS WELL. I CONTROLLED THOSE TWO BY LOSSING WEIGHT AND CHANGING DIET WHICH HELPED.EXPERIENCED JOINT CARTILAGE DISTRUCTION WHICH LEAD TO ACL RECONSTUCTION,WHICH WAS VERY SUCCESFUL. IVE BEEN ON MEDS 3 YEARS NOW.
2
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Sonyia | 35-44 | Female | On medication for 1 to less than 2 years | Patient
1/16/2009
Condition: Other
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
I have a Mast Cell disease that almost cost me my life. I broke out in hives so bad for over 7 years. The last two I was taking over 7 epi shots a day, 100mg of predinsone, and 5 anti histimines, and I am a type I diabetic for over 13 years. I went through several treatments of IVIG. (you can look that up on internet if you are interested in knowing how it is used.) I quit responding with it, I was also on cyclosporen and after three months ended up in the hospital. It quit working. When I say sever hives I mean to the point I was taking epi shots just to breath. Several times taken by ambulance and spending days at a time in the hospital on breathing treatments. I was at the end of the line when one of my Doctors said lets try prograf and if it does not work we will try Chemo. I also later had to be put on Gastrocrome. Well 2 years later no epi shots, no hives and the only down side is my hair is thin and does not grow as well. Only shave about once every 3 months also. LOL. I do get sick alot, but it is better than dying or wanting to. Blood pressure use to run 112 over 62 and now it is up to 142 over 84, but still not that bad. Good luck to you all who have to use it. I hope that my insurance will make sure I never loose this drug. Read More Read Less
1
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bruter | 35-44 | Male | On medication for 10 years or more | Patient
1/16/2009
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
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rj | 55-64 | Female | On medication for 6 months to less than 1 year | Patient
1/15/2009
Condition: Prevention of Liver Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
It has been nearly a year since my transplant. I am taking 4 mg am and pm. Night sweats is my biggest complaint and some sleepness nights. All and all has been very good for me and I am very pleased.
4
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My2Livers | 55-64 | Female | On medication for 5 to less than 10 years | Patient
1/12/2009
Condition: Prevention of Liver Transplant Rejection
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction
the drug manufacturers don't tell us about hair loss, brain damage, severe depression, hallucinations, spinal cord damage, memory loss, cognitive problems, shaking, etc. I've been on it for 5 years and my pre-prograf MRI of my brain was fine. Now I have brain damage. I've also been diagnosed as severely bi-polar, and my once thick hair is all but gone!
14
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berdon | 55-64 | Male | On medication for 6 months to less than 1 year | Patient
12/24/2008
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
high creatinine level
1
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snicks | 35-44 | Female | On medication for 2 to less than 5 years | Patient
11/18/2008
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
Had a kidney transplant Dec. 23,2006 started on Prograf but had massive hairloss and was switched to cyclosporine. Hairloss was due to the surgery (massive trauma to the body as told by my Dermotologist) swithced back to Prograf I've had no rejection issues but sideffects include sweating (not as bad as when first started, I use Secret Clinical, it helps) and thining hair on the crown of head. My dermo said to wait 18 mo. after surgery until the hair cycle gets back to normal then my hair stylest said to wait another 5 mo. to see new hair growth. That comes at the end of January 2009. But like another reviewer said if this is all I have to deal with, I think I'll be OK.Read More Read Less
4
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Anonymous | 25-34 | Female | On medication for 10 years or more | Patient
11/14/2008
Condition: Prevent Kidney Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
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nangal | 35-44 | Female | On medication for 1 to 6 months | Patient
9/25/2008
Condition: Prevent of Transplant Rejection
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction
I had kidney txp in 2000 and took cyclosporine - lots more side effects. Had pancreas txp 5/2008, some initial rejection issues and prograf level too high caused strange pains and inability to grip. Tremors starting to go away and bowels back on track (loose before) - now that dose lower. Newest issue is hair loss. Hoping that improves - or I'll get a wig! Happy so far, though it is a pricey med. No complaints after getting the gift of organ donation!
3
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Anonymous | 45-54 | Female | On medication for 5 to less than 10 years | Patient
8/2/2008
Condition: Prevention of Liver Transplant Rejection
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction
Prograf has worked well for me for 8+ years. I developed high blood pressure and diabetes after transplant and due to the drug. Some leg/joint pain which prevents significant exercise. Overall, the side effects do not limit me from enjoying life. I have not experienced any episodes of rejection to date. Prograf is the only post transplant drug I've used, so can not compare to any others.
2
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johnnys33 | 45-54 | Male | On medication for 5 to less than 10 years | Patient
7/9/2008
Condition: Prevention of Liver Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
Prograf is a life saver, transplanted 1/2/2000 and doing great after 8+ years. Took heavy doses of steroids right after transplant but quickly moved to prograf. 3mg twice a day keeps the doctor away. I have diabetes just diagnosed this year, but I need to lose some weight (20 lbs.) and I'll be fine. Thanks to the transplant team and clinic follow-up at Univ of Penn.
4
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airmech3usa | 45-54 | Male | On medication for 6 months to less than 1 year | Patient
4/28/2008
Condition: Prevention of Liver Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
I have been taking this medication due to a liver tx 5/2007 I am down to 2 mg twice a day. I take it with myfortic,ursodial, bactri and magnox, and so far I have had no rejection episodes or any side effects from any of these medications. I thank all of my liver transplant team for keeping me off steroids and going with the ones that I am taking now. It will be year 5/2008 since my transplant and I feel great. The first year is the hardest. I have not had any bad experiences so far and I hope that this will continue on.Read More Read Less
3
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Anonymous | 55-64 | Female | On medication for 2 to less than 5 years |
4/24/2008
Condition: Prevention of Cardiac Transplant Rejection
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
have taken this since heart transplant 4 years ago, no rejections, and feel great most of the time.
9
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scal0123 | 65-74 | Female | On medication for 10 years or more | Patient
4/20/2008
Condition: Rejection of Liver Transplant
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
After 13 yrs, still going strong. Last year levels were higher than should be, developed high blood pressure & diabetes. Have a lot of foot & leg cramps, hard to maintain magnesium levels.
5
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choo | 55-64 | Female | On medication for 1 to 6 months | Patient
4/18/2008
Condition: Prevent Kidney Transplant Rejection
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction
some loose stools on higher dose still have some night sweats tremors on higher dose
2
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lucky chucky | 55-64 | Male | On medication for 5 to less than 10 years | Patient
4/12/2008
Condition: Prevent Kidney Transplant Rejection
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction
I'm satisfied because I haven't rejected (8 yrs and counting) but I did have absolutely the most horrifying nightmare the first time I used it (as I was warned to expect). After that no nightmares, but I have not been able to sleep since (I'm not a wuss - it's not because I fear another nightmare - that was a one time event -- but more because it happens to be one of the side effects.) I take one half milligram of Xanax at night and sleep well and wake up easily and rested. Bottom line.....it beats dying.Read More Read Less
8
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ron0614 | 35-44 | Male | On medication for 5 to less than 10 years | Patient
3/15/2008
Condition: Prevent of Transplant Rejection
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction
Took this medicine 5 years caused multifocal leucoencephalophaty and now I am confined to a wheelchair. Worked good while I took it, but side effects terrible.
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