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 so sorry about your life on prednisone. I would like to remind everyone on this board that it is not just the prednisone that causes the problems. Minimal Change Disease in itself can lead to nephrotic syndrome and this will lead to swelling, weight gain etc. Prednisone is utilized for many diseases and we must always remember the side effects of the disease as well. Anyone with kidney disease is going to have swelling, weight gain, dry itchy skin, etc whether or not they are on prednisone. The prednisone is to help keep the kidneys from going into failure which then requires dialyisis and probable kidney transplant if lucky. It cannot all be blamed on the prednisone. I do have the psychosis from the prednisone but because I have a different autoimmune disease Ulcerative Colitis I do not get the weight gain and fluid overload. The skin is a bit itchy and I am bruised everywhere but my doctor gave me Xanax to deal with the rage and wanting to kill everyone; it also helps me get some sleep. After a week on Prednisone, as much as I hate it, I don't poop pints of blood and clots, I can eat without running to the bathroom after the first bite and did not need a blood transfusion. I encourage you to always speak frankly with your physician and if there is an Advanced Practice Nurse at your nephrologist office please utilize that person's expertise. I am an RN and I can tell you we want our patients to be involved in the treatment plan and no all the options. We want you to know the side effects and when to call us for help. Also, please search for clinical trials for Minimal change Disease and see if you might want to try one. If you are not happy with the care of your current specialist seek out another, even if you are on an HMO you can find another specialist - AND I STRESS YOU SHOULD BE UNDER THE CARE OF A SPECIALIST NOT JUST A PRIMARY CARE/INTERNIST/FAMILY MEDICINE DOCTOR. hope this helps