Minimal change disease symptoms and conditions

I have now tapered to 10mg prednisone every other day and will end 75mg Cytoxan Aug 19th. Just went to the Dr. and she said protein is back in urine (bad) but also rising in blood. (good) I can continue to taper prednisone but will have to have another 24 hr urine speciman to determine wether I have to go on cyclosporine. Was originally diagnosed with Minimal Change Disease, but now she thinks it could be another kidney disease. Has anyone had successful tapering with the addition of cyclosporine? Does the urine protein ever get higher? What about side effects of cyclosporine.

I have been on prednisone since November 2007 for minimal change disease, 65 mg, in May I started to decrease the dosage (per Drs. orders) and by the time I got to 15 mg all my symptoms came back and I swelled up again. I was again put on a higher dosage of prednisone and put on Cytoxan 75 mg. I am now decreasing prednisone, back to 15 mg every other day and will be off Cytoxan next month. Hopefully this will work. Right now my main complaint of side effects is chest pressure, anything I eat or drink makes my stomach swell and I feel like I can never take a full breath. I recently had chest and abdoman xrays and an ultrasound, all negative. Does anyone have this symptom? I also have moon face, weight gain, hump on back, insomnia, headaches, digestive problems ,shakes, night sweats, vision problems, extreme tiredness and hair loss. How long before all this goes away?

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.

I was on Prednisone for just over two weeks for a bad skin rash (allergic reaction). I went to the ER they gave me an injection on Prednisone. The next day my Doctor puts me on 40mg a day for 10 days then down to 20mg, and then 10mg. The side effects were (and are) crazy. Blood sugar and Blood pressure are through the roof. My heart pounds,races, skips beats. Hands shaking, nervous, and panic attacks. Yeah, sure, the rash is gone, but I feel like a train wreck. I took my last dose 2 days ago, and have been told it can take 2 to 4 weeks for this to get completely out of my system and end the side effects. Can anybody else verify this?? Good god, what a mess!!

I am a 25 year old, who was perfectly healthy prior to recently when I was diagnosed with Nephritic Syndrome and Minimal Change Disease and possibly FSGS (kidney diseases) I was put on 60 mg of Prednisone for 1 month then I was lowered to 40 mg for one month and I am then dropping to 30 mg. I am also taking Fosamax for my bones and a Vitamin D pill because my last lab test showed low vitamin D levels.

I am dizzy constantly and can not live a normal life, I can not drive or do any activities that I had previously done. My chest is so tight and constricted all of the time, my heart rate is so fast and pounds at my chest. I have no energy to do anything, I can barely open a door at times. I am beginning to grow unwanted hair on my face. My abdomen is always bloated. I have pain in my rib cage, and shoulders. I feel very sore throughout my entire body. I do not really sleep at night, so I look very tired all the time.

I have actually lost weight, I have no appetite at all. I am down 10-15lbs.

Now for the Pro- my Kidney Diseases are currently in remission and this has happened much faster than the Nephrologist had thought.

I am very anxious to getting my life back to normal and getting off the Prednisone.

Has any one else experienced increased heart rate, chest tightness, or rib pain?

I wish everyone the best in their roads to recovery!!

Hello -- I was diagnosed with Minimal Change Disease and have been on Prednisone for about 2 months at 80mg. The first couple of weeks I was full of energy and since I was bloated up to 212lbs because of my kidney disorder...I quickly came down to about 170lbs in about 3-4 weeks. But the fourth week the side effects really became noticeable. I went through extreme moods swings and the weight slowly started returning. So I decided to hit the gym to battle the nervousness, anxiousness, swelling and fatigue. To start it truly works to drink a lot of water. I still battle with the mood swings, but this is a great start and I work out about 4-5 times a week and make frequent visits to the steam room. You have to also me careful to not get exposed to germs, so bring handy wipes with you since the Prednisone weakens your immune system. Next week the doctor will take me down to about 40mg. I guess the mood swings are really still the hardest to deal with and for the people who love me the most.

I was a very healthy 23 yr old female. I cant believe that I finally found someone going thru almost what I am going thru. My name is Liane and My life changed on July 7th, 2007. I went to the hospital for frothy urine. They told me it was a UTI and gave me Levaquin for 7 days. I took it for only 5 days cuz ( I was allergic too) then were gonna start me on macrobid. Mean time my hands,face, and bottom half began to swell up. Me thinking it was from my period but this was different. I work in a jewelery store and once my rings that are a size 6 DID not fit at all I panicked. I had extremely bad back pain, high blood pressure. I did not feel same. On July 13th (Friday) I went to a hospital here in southern california and talked to a doctor and she said.."sweetie u don't have a UTI, I don't wanna scare u but I think that U have a Kidney Disease called Minimal Change Disease"!!!! WHAT!!!! Am I gonna die? She says no but come Monday u need to see a specialist and confirm. Now here is a Lasix pill to help take some of the water weight that u have gained away. Its already about 1:30am on Saturday the 14th. She says u will not sleep cuz u will be urinating all night. I said well anything to help me, i had went from a very healthy 5' 7" 155lbs woman, I worked out in the gym 5 days a week with my boyfriend who is a Police officer and bodybuilder for fun, so me swelling up and devastated me. I took the pill. and went to sleep. Nothing happened to me. That meant something was wrong. Later that day Saturday I felt BAD. My face kept swelling, blood pressure kept going up, heart racing. I went to E.R and told them I felt like I was gonna die, I think I have minimal change disease I need a specialist now. They admitted me for 5 days. My specialist came in and saved my life. I had a ultrasound and kidney biopsy and they confirmed what I already knew. I had Minimal change Disease. I ended up being allergic to Dilaudid, and compozine in the hospital. I was released on the 20th of july. and now began my treatments. 3 x's a day of Prednisone at 20mg each, simvastatin 20mg once a day for high cholesterol now, lasix 20mg once a day, and omeprazole 20mg once a day to prevent ulcers from the Prednisone., I hate the Prednisone. I broke out so much on my face. And its not pimples it bumps. I wake up every morning at 5a.m with nasty heart burn. then wake up every 2 hours after. Doctor told me to take all my meds at once and it helped a bit but still not completely. I too feel bloated in the mid section. I still suffer from edema in my legs down to my ankles. During the day gets worse but once I put my feet up and elevate them I'm OK. I have bad mood swings I don't know how my loved ones put up me. One minute I cry, 20 minutes I'm happy and wanna go out for a walk. This drug is gonna help me but then Do I really need to put myself thru this? But there is not other way. Just thought of sharing my story.

I have a kidney disease - minimal change disease - which was diagnosed in 2000. Started out on 60 mg of prednisone every day, got close to completely tapering off and the disease symptoms returned. Increased the dosage, tapered again, and finally was off the medication about 10 months later. Had all the same symptoms that everyone has shared. It was horrible. Thankfully I went into remission for 5 years. In September 2005, the disease reared its ugly head again. I started taking 120 mg of prednisone every other day for one month, then 100 mg for one month, then 60 mg for a month. Now I'm taking 40 mg for a month and the taper will hopefully continue. I still have some side effects, gained 15 lbs., moon face, a little difficulty sleeping, water retention in my hands and legs but it seems like it's manageable this time around. Maybe taking the prednisone every other day is the difference.

I was diagnosed with a quirky little disease called "Minimal Change Disease" - my kidneys decided that my body did not need any protein, and without any protein in my system, I gained 55 pounds of water weight, along with few other nasty side effects like having cholesterol in the 800's and blood clots in my lungs. At this point, I have been on the drug for a little over three months - 70 mgs for the first 6 weeks, the point at which the disease went into remission. The last 6 weeks, I've been tapering off - and will be off Prednisone by the end of this week. Ironicly, I had been taking a drug that causes water retention to fight a disease that causes water retension. Fortunately, after losing the 50 pound of water weight in less than three days, I didn't see any of the massive weight gain some have reported. I have gained about 8 pounds in the past 6 weeks that I've been tapering off the drug. The only other side effect I had was this euphoric, ethereal feeling I would have about mid-morning where my concentration was that of a 2 year old (I have experience in that because I have a 2 year old), and by mid-afternoon, I would race around the office in a flurry of activity - and get absolutely nothing accomplished. It was a weird sensation - kind of fun, but disconcerting - of being giddy as though I was drunk. I had to really sit down at my desk and force myself to behave and do my work. I also had quite a few nights in which I would wake up in the wee hours of the morning and to force myself to read the dictionary just to fall back asleep. Sure the drug has some nasty side-effects, and can really mess with your head, but so can being a 200 pound albino blueberry. And there were no Oompa Loompas around to take me down to the juicer. As to the side effects, I realized that the euphoria wasn't permanent, and I had to have a bit of fun with it when I could, and as to the weight gain, five pounds is nothing - though, there is much in my closet right now that I can't wear.