Slideshows Images Quizzes

Copyright © 2018 by RxList Inc. RxList does not provide medical advice, diagnosis or treatment. See additional information.



Comment from: My2Livers, 55-64 on Treatment for 5-10 years (Patient) Published: January 12

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!

Related Reading: hair loss | depression | prograf

Comment from: 45-54 Female on Treatment for 1-6 months (Patient) Published: October 21

Pain in the feet and the legs combine with the headaches has made this drug an evil necessity.

Comment from: bev5419, 55-64 on Treatment for 5-10 years (Patient) Published: July 07

I had a liver transplant on 12/13/2001 at Jackson Memorial Hospital.I receive my liver from my daughter which is such a blessing to get a second chance in life. My transplant was due to Cryptogenic Liver Cirrhosis. My life changed dramatically but I have no complaints because I am ALIVE. I have been on prograf since my transplant. I had a rejection in 2004 when my enzymes went up and a bx was done. Since the rejection I have been taking 2mg in the am and 1 mg in the pm along with 8mg medrol twice a week. Since May of this year, my liver enzymes elevated and my doses were increased to 2mg in am and 2mg in pm. My Drs also increase the medrol to 12 mg.Thank God so far my enymes level went down to normal and I hope they stay normal. I just did my labs on 7/5 hopefully the results are normal. I am hoping my Drs will be dcreasing the meds again. SIDE EFFECTS High BP, anxious,ect but the benefits to me is greater than the risk of side effects. But its been a life change since my transplant. No complaints at all because I am so very happy to be alive now. Thank God for my daughter and the medications. God bless everyone and thankful for all.

Related Reading: liver | cirrhosis | medrol

Comment from: VSTRAWBERRY, 55-64 on Treatment for 5-10 years (Patient) Published: January 06

I actually have had very few problems with Prograf in almost 8 years until a recent dip in my liver & prograft levels that resulted in a higher dose for a few weeks. I started severe headaches several weeks ago that will not go away and have constant nausea so bad I can hardly eat. I do have to take a sleeping pill at night because of insomnia I think is caused by the Prograf. All in all, I feel that I have done very well and have been lucky not to have had some of the bad side effects I have heard others talk about.

Related Reading: prograf | insomnia

Comment from: My2Livers, 55-64 on Treatment for 5-10 years (Patient) Published: January 16

I used Prograf for 5 yrs post-liver-xplant, and became increasingly paranoid, confused and delusional during that time. My docs said "You're bi-polar" & put me in the mental hospital. I'm not bi-polar, but I sure appeared to be. After doing my own research, I discovered that brain damage, paranoia, hallucinations, mania and even hair loss are COMMON side effects. I showed my doc my print-out w/ my symptoms hi-lighted, and he weaned me off prograf. Now I'm only on cellcept. That was 3 years ago, and I'm no longer crazy. But I have psoriasis, which just spread to my face, and just discovered that prograf topical is used for psoriasis! hmmm.. lose my hair and my mind or walk around w/ red blotches all over my face? I'm alive anyway, and I'm glad for all of U who are similarly blessed. Has anyone tried this stuff for psoriasis? Maybe topical won't affect my psyche! thx for any input. Peace.

Related Reading: cellcept | psoriasis

Comment from: diamondave, 45-54 Female on Treatment for 1-6 months (Patient) Published: October 30

I am 3 months post transplant and have been on prograf from day1.Along with many other drugs.All in all they all work well to do their job but makes it hard to determine which drug causes which side effects.I have the shakey hands and achey muscles.Only occasional headaches tho.Thru my joining Transplant,Ive learned that drinking much water helps considerably and is also necessary to prevent toxicity in the body.Prograf will ruin your kidneys if you dont drink a minimum of 64 ounces of water a day! If your on this drug,drink water!!It also helps to limit the side effects.

Comment from: Roger, 65-74 Female on Treatment for 5-10 years (Patient) Published: October 16

I was transplanted Nov 22 1999. After transplant I was taking 15 mg twice a day. Now after almost 10 years I take 2 mg twice a day. The first year was very rough for the side affects but after that everything has been going smooth

Comment from: 55-64 on Treatment for 2-5 years Published: April 24

have taken this since heart transplant 4 years ago, no rejections, and feel great most of the time.

Comment from: 25-34 on Treatment for 2-5 years (Patient) Published: December 02

I've suffered serious headaches as a result of this medication, in the form of tension headaches. Unfortunately, muscle relaxers don't work for me (because of other auto-immune diseases), so sleeping them off is my only option. Also, major changes in the dose of this medication cause me to have flu-like symptoms for two to three days after the change.

Related Reading: flu

Comment from: britlite3, 45-54 on Treatment for 5-10 years (Patient) Published: December 10

Had a kidney transplant 6 years ago and no problems until a few months ago. Vision would go from being great and seconds later blurred - sometimes back to normal, could not trim shrubs without having to stop 5 mins. later from shaking, can't sleep without the help of 1/2 to 1 tab of Valium before bedtime - that does the trick- Then, there is weight gain - maybe from the junk food :) But I consider myself very lucky - I started out taking 1.5 mg 2x daily - now it's been reduced to 1 mg. 2x daily. This drug is great - it's given me a chance to see my girls grow up. Much better than being on chemo and dialysis any day. I had RPG with P-ANKA - so I'll take the Prograf anytime. Thanks to this great drug company for giving us another chance. We are the lucky ones - never forget that. Stay positive :) you could be back where you were before your transplant. God is good :) Life is good!!!

Related Reading: valium | prograf

Comment from: yankeeflyer72, 55-64 Female on Treatment for 1-2 years (Patient) Published: January 30

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.

Related Reading: liver | cirrhosis | liver cancer

Comment from: lucky chucky, 55-64 Female on Treatment for 5-10 years (Patient) Published: April 12

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 beats dying.

Related Reading: nightmares | xanax

Comment from: wsnpc126, 45-54 on Treatment for 1-2 years (Patient) Published: August 20

Like others I experienced the hair loss side effect. I have a great hair stylist - they work with the American Cancer Society Look good feel better program. They recommended I use the scalp/hair treatment chemo patients use - Nioxin. It is wonderful! About 1 month after treatmend - new hair started growing in - I had long hair, had it cut short and kept it that way until the new hair was long enough, you couldn't tell the difference. Now it's growing back out and looks great. Good luck I hope it works for anyone going through this. Being a recipient is great but being female without hair, it's a vanity thing! It gave me glimpse into the life of a cancer patient. Much respect

Related Reading: hair loss | cancer

Comment from: 19-24 on Treatment for 10+ years (Patient) Published: December 02

i had alpha 1 as a kid- was transplanted march 21 1992. i am 17 years post surgery. i had an episode of rejection 2 years ago but have quickly recovered. i take 2.5mg 2x per day :]

Comment from: 35-44 on Treatment for 10+ years (Patient) Published: September 25

Eleven years post-transplant with no problems except need for small dosage blood pressure meds. Use 3 mg 2X/day. Very occasional tremors and no other discernable side effects.

Related Reading: tremors


Kidney Stones: Symptoms, Causes, and Treatment See Slideshow
Comment from: KyBlueJay41, 35-44 on Treatment for 10+ years (Patient) Published: September 21

I don't like the it because I am now a diabetic and have high blood pressure because of taking this medication, But it has kept me from rejecting my liver for 11 years now.

Related Reading: high blood pressure | liver

Comment from: ASH, 45-54 on Treatment for 6 months - 1 year (Patient) Published: August 04

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.

Related Reading: hair loss | insomnia

Comment from: Hoping, 55-64 Female on Treatment for 1-2 years (Patient) Published: November 01

My experience has been great except for serious shaking or trembling of my hands and now my arms at night. I hear this goes away in time but I'm 18 months in and getting worse. Any help out there?

Comment from: patty, 25-34 on Treatment for 1-2 years (Patient) Published: April 13

I had a kidney transplant 18 months ago. In the very beginning I had hair loss (so much it was coming out in clumps), horrible sweating, hand tremors. Those eased, but currently have short term memory loss, stomache problems, and mood swings. Transplant drugs are difficult, but you MUST take them to save your transplanated organ!!!!

Related Reading: tremors

Comment from: pophorn54, 45-54 Female on Treatment for 1-2 years (Patient) Published: May 05

I`ve been taking it for 14 months,now I`m down to 4 mg 2x a day(when I remmenber only miss 1 or 2 night a week sometimes) have a appointment tommorrow going to ask if I could try to only take 1 pill a day hope it works out? Had only one week2 live so son gave part of his liver what a life saver! before transplant had pain in thighs still have don`t know what it from, know my feet hurt like there sowen but I live with it.

Comment from: 35-44 on Treatment for 1-6 months (Patient) Published: December 10

the medication is okay, but it gave me alopecia. was not listed as side effect.

Comment from: Peache1, 55-64 on Treatment for 5-10 years (Patient) Published: October 28

I am dissatisfied with the severe effects of this drug. I have severe nerve and muscle pain. I will be an invalid soon. It is hard to accept the fact that this drug is used to give me life yet the life I am living is not worth living, not with constant and excruciating pain.

Comment from: Einman, 65-74 Female on Treatment for 1-2 years (Patient) Published: July 12

I have been taking 3 mg of prograff two times a day for 1 year and have only experienced slight hand tremors and gastrointestinal distress. The GI distress in the form of slight nausea and diarrhea has been an increasing problem as time has passed. Have appointment next month and will try to get dosage reduced. The drug has been very effective in preventing rejection episodes. I have had no additional side effects.

Related Reading: diarrhea

Comment from: scal0123, 65-74 on Treatment for 10+ years (Patient) Published: April 20

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.

Related Reading: diabetes

Comment from: ron0614, 35-44 Female on Treatment for 5-10 years (Patient) Published: March 15

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.

Medical Editor: John P. Cunha, DO, FACOEP

Health Solutions From Our Sponsors