Kidney transplant symptoms and conditions

After my kidney transplant I was taking 40mg a day and only weighed slightly over 100lbs. I felt all of the same side effects: trembling, sweating, bloated tummy, paranoia, confusion, horrible acne, insatiable hunger, bad headaches. I started taking the pill and this helped a lot with acne and hair growth that started to appear. Ask your doctor if you can taper down to a more manageable dose. I'm still on prednisone and probably will be for the rest of my life, but I was firm with my doc and got it down to 7.5mg MWF. This level is much easier to deal with, and although I still have a slight "moose hump" (some kind of name) and disappearing eyebrows, my hair loss has evened out and I'm happy with what I have. Like many of you I used to have really thick hair. Things will get better, you just have to be persistent. No one should live that way, it's horrible and I don't think that doctors understand the drastic drop in quality of life that occurs.

Constant weight gain. Just had a kidney transplant Dec 2008, started off with 60mg prednisone now I am done to 5mg but I will gain 5 pounds and will stay at that weight for several months then go up another 5 pounds. I am eating healthy and exercising. I need help and advice!!!!!!!!!!!!

My daughter-in-law had the Mirena inserted November 2008, when my grandson was about 7 weeks old. Our lives have been hell since, after months of headaches,nausea, fatigue,and just always pale, weak and lethargic. Many trips to Doctor's and hospitals, never any answers. March 12th 2009 blood test showed kidney failure, low hemoglobin requiring transfusions, and platelets so low they had to do plasma exchange every day for almost a month. Our answer TTP, this is a very rare blood disorder- in this case caused by the mirena IUD. 32 days in the hospital, after the Mirena was finally removed on day 26 her counts returned to normal ..with tons of lasting effects she came home, she lost her kidneys from damage that went on to long for her body to take, she is 20 and will never have another child, and continues to have lasting heart problems, as well as needing a kidney transplant. Please know that those of you who have it who have never had a child, that's not supposed to happen, its only recommended for women who have had a child. The list of side effects and who should and who shouldn't have it is not getting to the patient. Here is a link to a petition I found and continue to forward and post everywhere I can. Please keep this going so we can get the FDA to take this poison off the market.

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I had a kidney transplant feb08. I was put on prednisone as a rejection med. So far, i have gained 50 lbs, my hair has fallen out, had mood swings when first put on it. Haven't noticed them lately, have little bumps under my skin, not acne, have started noticing slight breathing problems, when trying to walk to lose the weight. Yesterday I was diagnosed with cataract. Eye doctor said that it is another side effect of the med. I am under the impression that, I am on this for rest of my life. Whats next?

PREDNISONE.... a word that is unknown to the naive and despised by the the knowledgeable. Before i begin i want to tell you that prednisone for lack of better word F***ed me up. So heres my story with the pill. About a year ago i was officially diagnosed with Minimal Change Disease, now remember i am eighteen at the time, and was prescribed prednisone to cure the disease. Now being unaware of the severity of the drug and disease i casually continued life while taking 80mg per day of prednisone. Well this was good and all because it did in fact put me in remission, but the side effects were starting go surface. My face ballooned up "moon face", started experiencing random series of depression, became insomniatic, and unfortunately gained several pounds. Well this was not the end of side effects as for me. I continued with the medication and after 6 weeks of 80 mg i began my 5 week course of 60mg. Then after that i started 4 weeks on 40 mg and began tapering 5 mg every 2-3 weeks afterwards. Toward the middle of 60 mg the drug started taking its toll on my body as my skin lost its elasticity so i started getting gruesome strecht marks all over my body. I also became constipated for whatever reason most probably prednisone was at fault. I became very frightened actually terrified so i started to research about the drug in hopes of finding ways to avoid some side effects. In doing my research i found out very disturbing information regarding prednisone. Along with all the side effects that i mentioned above, prednisone also causes cateracts, glacoma, diabetes via insulin resistance, and osteoporosis. Now these i consider as the more severe permanent side effects as the list unfortunately is much longer. Finding out about the side effects i became extremely paranoid and started a very strict diet to hopefully avoid some permenat side effects. I admit reading about the information on prednisone created my paranoia and/or possible phycosis which ultimately led to my stress which led to my severe depression. Now this wasn't any old type of depression, i was sersiouly in need of some help. Everyone around me could tell something was wrong and really i dont blame then for in fact i felt as if my soul had died, the very essence of my being. Now magin if you can someone taking away your youth from you, sucking the very life out of you... thats exactly how i felt. To add along with the depression my grades became a wreck in college as i dropped several classes, lost a friend, developed problems with my parents as they tired to help me, and disrespected family relatives with my uncontrollable mood swings. A few weeks in of dieting and exercising i lost a lot of weight (15-20 pounds). As far as side effects non had changed i still had to deal with all that was mentioned above especially with the fragile skin that was a real burden as i had even a few stretch marks on my face from sleeping on my side. At this point of my long and what seemed to be a never ending journey i become exteremly weak. My body had no energy to run on as i refused to eat and when i did eat it was either foods that are considered free foods or protein nothing else. Everything at this time had been taken away from me including smoking marijuana (marijuana drops blood sugar as this would cause me to start feeling faint and lightheaded), alcohol (same as marijuana drops blood sugar), and the fact that i was not comfortable in my own skin (literally). I was driving myself insane. Everyday i was behind the computer searching for more and more. I was obsessed and became my worst nightmare. Oh by the way half in the medication therapy i showed 1+ grams of protein in my urine which my doctor possibly thought it could have been a relapse. This news i did not take lightly i had lost it and was prepared of comiting suicide. I cant lie, i really did not want to live anymore i just wanted to end this and suicide seemed like a very real and convienent possibility. If it had not been for my parents talking to me giving me a 3 hour speech and lecture i do not know what i would have done. Suicide at that point became out of the question because i could not do this to my family. So i went and purchased urine dip sticks to monitor the protein. The doctor had given me a 2 week window or chance to get back into remission or else he was going to prescribe me cytotoxic agents aka chemo therapy drugs. This was horrible news to me. So as i monitored my protein i found out of a very interesting trend. I noticed that my protein levels in the afternoon were in fact positive for protein and were usually up and down as far as how much but in the mornings i noticed i was always negative. Now this give me a huge bit of hope because when in researching about MCD months earlier i found out that there is a coniditon called orthostatic proteinuria which affects mostly young adolecent males and is a condition described as for some unknown reason there is protein loss in the afternoon when the person is upright and active then when they are supine or laying down the kidneys do not allow any portein loss. This condition is in fact harmless. I was very happy from then news and i told my doctor, he was somewhat doubting, but i don't blame him he is looking out for my best interest, but sure enough after the 2 weeks had past i went in again for my appointment after testing and i was negative for protein as i had expected. We began tapering after that point and i continusouly monitored my own tests at home and eventually i got off the steroid, actually today is that day after a 9 month period of heartache and distress. You know people say that they went to hell and back in a hard moment in life, well i went to hell stayed there for 9 months then came back. I feel so everyone who as ever needed to take steroids for long periods of time, i know its tough but believe it as it is indeed a potent drug and in most cases a miracle drug. It gave me a second chance at life and no matter how hard it was or how much pain it put me through i cannot complain for it did in fact cure me and thats why i can never hold any grudges. So thats my story i kno its not pretty but what can i say it is indeed mine whether i like it or not.

Hi,I am a 54 year old male and a recipient of a kidney transplant in mid 2006. I have been on a variety of different drugs mainly the two that i am most concerned with are Prednisone and Fosamax. I stopped the Prednisone with my doctors blessing as my transplant went very well. However i have been suffering from joint pain first in my feet at the joint of my big toe and then my knees and right hip, next my neck. The knee pain is the worst and my legs feel fatigued most of the time. I am active however it is difficult to remain positive when you experience constant pain. I don't know if this is being caused by Fosamax. I now believe that the Prednisone was masking the pain. Any thoughts?

I had a kidney transplant a year and half ago, and had to take Prednisone as one of my post-transplant med's. I was on it for about 2 months and I went through a lot of the same side effects mentioned by other people, increased appetite and weight gain in odd places, sleeplessness, and acne. Then recently I had an allergic reaction to an antibiotic and was again prescribed prednisone for three weeks, but this time the acne is so bad it looks like a rash, and it's all over my back, chest, neck especially, and on my face. I can deal with it because I realize it's what I need to do, and I am grateful that there is a drug that can treat the symptoms from the allergy, but I am wondering how long it will take for the acne to clear up once I finish the 3 weeks? Does anyone know how long it takes when you've been on it for that amount of time? Any thoughts would be helpful. Thanks.
Megan

I am a Diabetic with a Kidney Transplant and of course alergic to Penicylin. I have before taken Cipro and have had reactions to it. It actually does work, I do feel pretty sick for 10 days, but I really cannot take anything else that works. I do feel bad, but for some reason it does make me feel good after a month after the prescription is out of my system.

i been taking prednisone for 4 years now since my kidney transplant, and i have experienced everything that everyone eles has posted, the moon face bothers me the most it changed my face appearance and does not make me look nice anymore, i look totally different and all the side effect, frequent ER because of infections, diabetics is overwhelming too, i hope that god sees this and help well come to all of us, I wish everyone love and caring, that it well be better for all of us soon.

I´ve had a kidney transplant 8 weeks ago and had to have 3 cures if high dosages of prednisone the late time was 1000mg for 3 days and i still have a moon face i have to take 10 mg per day does anyone know how long it takes for the4 moonface to go down??

I have been on this med for 8 yrs and trying to get off it. It is a horrible drug. i take it because i had a kidney transplant that messed up my blood preasure. I had all the syptoms of anxiety because this med and now taken lexpro to balance out the anxiety. im glad i came across the page cause i take so many meds for my transplant and on top of the blood preasure and now anxiety meds its taken a tole on my liver. so i will definitley talk to my doctor about getting me off the lexapro and trying a different blood preasure med. I also gained alot of weight but it might because of all the meds i take. i went from 170-263lb in 8 yrs

I have been suffering from severe pain and tingling in my hands and feet for over 12 months, now. Initially it was blamed on immuno-suppression drugs following my kidney transplant. When the immuno-suppression drugs were changed, the problem remained. It was then that the doctor suggested that the problem lay with Levothyroxine. However, he didn't have any suggestions to make to ease the problem.

At times, I can't touch anything or feel anything as the pain is so intense. I get hot sweats and it causes a ringing in my ears. It makes cold water feel hot to the touch. I have trouble sleeping some nights when the pain starts.

I am a kidney transplant recipient and take Prednisone along with anti rejection medication. I have been on and off for about 15 years. I have been on 45mgs on down. I have experienced SEVERE mood swings!!
I feel fine one minute and the next, going so far as to packing up the kids and leaving. We are just now discovering the side effects and are devising a plan to get through these 'mood swings'! I have also experienced stomach, aches and pains as well as peptic ulcers, and the classsic 'moon face'

I cannot imagine that you would be able to sue the company.
With WARNINGS posted on the box and all the literature, it's
almost spelled out in black & white. I guess everyone is free to make up their mind..........which is the lesser of the two evils? Do you breathe, or...........do you use the medication?
That seems to be the choice. My Dr. did take me off the Advair, but I ask for it back because I could not get my breath. So I went back on it knowing what the outcome could be.
I believe it's true with MOST of the medications. I know a person with a heart transplant. The anti-rejection medication gave him cancer. He was told that before it was started, but he had to take the medication or his heart would reject.
Now, his kidneys are ruined from it too and it's a kidney transplant to dialysis. There were a lot of risks with all of it, and I believe that can be the case with all the medications.
It's a choice we all have to make personally.

Hello,
I have been on Prednisone since October of 1987,
I take it every morning 10 mg. one morning alternating to 5mg. the next morning back and forth to keep from rejecting a Kidney Transplant that I received.
My side effect is: I have Bone deterroration in my Spine from it and I cannot quit taking it or I will loose my Transplant and have to go back on dialysis, that I was already on for 10 years befor I received the Transplant.
That dosn't give me much of a Choice.

Very strange, I also had an attack of vertigo with nystagmus (hoizontal) that was thought to be Meniere's disease. Kept on same dosage (3000mg a day) due to Kidney transplant. Otherwise, fatigue and weakness are only other direct side effects.

When I was taking pred. I was always losing my balance and pitching here and there. I was on pred. for 4 yrs. and have been off of it since June 10th of this year. I know how u feel. Low blood sugar can also make u very weak. I have Diabetes and had a kidney transplant over four yrs. ago and that's why I was on pred. Be very careful when u excercise. I have a reclining stationery bike that also has the arm things that u use. I got mine at Walmart. Try to get one of those. It beats falling down, I know. To answer about muscle aches and joint pain, comes from the pred. It also happens when u go thru withdrawal from pred. It lasts just a while, not to long, but it also depends on how long u r on pred. All of u r in my prayers, keep me in yours,

Angela,
It broke my heart to read your post. U sound just like me after I had a kidney transplant and had to take pred. I ballooned up so big. My face certainly had "MOON FACE" like I've mentioned in my other posts, I have three sizes of clothes. It's very depressing and no matter how much support u have, it's still your body and it is all about us. We can't help how we feel about ourselves. It's the pred. The self-esteem flys out the window. I've gone thru this so much. I was on pred. for 4 yrs. I have been off pred. for three months. I've lost weight but I have about 25 more to go. I gained around 75-80 lbs. myself. I've lost 33 now. I was so skinny before pred. because of dialysis. I don't want to be that skinny again, that's why I want to lose only 25 more. It's very hard to lose. How long do u have to be on it?
Withdrawal is very hard,also. No matter what people say, when we look into the mirror, it's depressing. I promise u, after u stop taking it, tho it will take time, u will lose it. U r in my prayers. I'm so sorry that u have to feel like this because I've been there, am there, and have a ways to go. Maybe as time goes on, your body will eventually will adjust. I assume u will be on it for some time. I certainly understand the depression. God Bless You Trailblazen

How about we all get back to what's important? Hello jules! Hello, Matt! I'm now 9 weeks off of pred. The sadness is still there but I'm checking into some info. I was given by jules. Of course the insomnia is still there, I'll wait it out. Saw my kidney doctor (kidney transplant four yrs. ago) All my lab work was perfect! I was worried about being off of pred. could affect my kidney count. It was .8 which is fantastic. It's better than my nurse's. I'm very thankful. Don't ever give up on knowing the side effects will go away. Each person is different and it will depent on the dosage and the length of time someone is on pred. At first, four yrs. ago, when I was started on pred. my hair was falling out like crazy. I even checked into a wig or clip in real hair. A lady at a salon told me about "power plus" It's shampoo, conditioner and a tonic. After I started that, my hair grew back and haven't had a problem since. In the last four yrs. I bought the product about three times. Now I don't bother with it. It's costs around $40 and is worth every penny. God Bless Everyone Trailblazen awayyyyyyyyyyy............

I really appreciate the info. Jules777 I hope u got my apology from the other posts. The sadness has been the worst part after coming off of pred. The weight is coming off really well. What about insomnia? I'm really suffering with the insomnia. I will look into the B Vitamins. Very interesting on what the adrenal gland does. I wonder why they put me on pred. after a kidney transplant? Thanks again for the info. I will take it to heart.

Just wanted everyone who has polycystic kidney disease and is on lisinopril to know that I've been on it for seven months and already my cysts are showing a decrease in size. My nephrologist said this may be the drug that turns my condition into one where all I have to do is take a pill rather than need a kidney transplant (like my dad needed). She's right. And at 10mg, I'm not having any side effects. In fact, I feel much better being on this bp med rather than the older one...I'm more active and generally feel great. Everyone's different so don't be afraid to try it.

I had a kidney transplant at age 20 and now I am almost 23. My prednisone dosage started at 20 mg/day and I've had three rejection episodes (which resulted in prednisone drips at the hospital and subsequent slow tapering). I seem to be very sensitive to the level of prednisone so I have to taper extremely slowly. I've tapered down to 5/2.5 alternating, going down by 2.5 mg every month and a half. luckily no increase in creatinine since my last episode about a year ago (when I have PCP pneumonia concurrently), so the taper has been pretty constant.

My face started to go down at about 12.5 mg / 2.5 mg (that's 12.5 mg one day, 2.5 mg the next, so an average of 7.5 mg/day). Now, after 4 months of tapering (down to 5/2.5) my face is looking better but not even close to how it used to be. It's funny, I've been working out for the past few months, the rest of my body is tight, but my face and neck look like I weigh 200 lbs (I weigh 170 lbs / 5'11"). So I still don't know when the moon face will go away.
My doctor said that usually alternating lower doses results in less side-effects, so those of you who are using prednisone for chronic problems (like maintenance after kidney transplant) check into it.
As far as the mood swings, depression, weight gain, hunger, headaches, muscle pains - those began to decline in intensity after an average of 10 mg.
That weight is very hard to get off. For those of you going through this while high school and college, I feel for you - I went through my last two years of college on an average of 20 mg/day and 1 hospital visit a semester.. and it sucks.
Good luck all.