Discussions By Condition: Kidney conditions

Minimal Change Disease

Posted In: Kidney conditions 16 Replies
  • Posted By: lianerhymes1
  • August 4, 2007
  • 08:25 AM

:confused: I was recently diagnosed with Mininal Change Disease. Lots of swelling in my legs, feet,and ankles. Im now on Predisone, lasix, and 2 other medications. Does anyone out there going thru what I am going thru or ever had anyone go thru this??? Im lookign for someone to talk to about my sickness. It seems when I tell people what happened they are like..."What do you have again?" I have never heard of that before. It gets frustrating at times.... I have had trouble sleeping at night, waking up at 5 a.m with heart burn or thats what i think it is. Lots of things going onwith me. Is it from taking the medications? does it mean its working?
Anyone know anything that would help me.

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16 Replies:

  • I personally don't have it but my daughter was diagnosed at 18 months old with Childhood Nephrotic Syndrome. She has the most common form in children with NS, which is Minimal Change disease. It has been a very long road for us since the day she was diagnosed. She is now 4 1/2 yrs.old and is doing wonderful! In the beginning, when I first knew something was wrong, her eyes were swelling. Her eyes would be swelled shut in the mornings. I had taken her in to see the Ped. about it, but he said it was allergies or an eye infection (even though there was no redness), wrote a perscription for antibiotics & prednisone (to bring the swelling down) and sent her home. A month went by and the swelling did get a *little* better, but did not go away completely. I took her back in to see the ped. & this time he immediately did a urine test. The test showed extremely high amounts of protein & a small amount of blood in her urine. She was then admitted to the hospital & spent 4 days receiving IV treatments. Albumin & lasix was some of it. While in the hospital, she lost 6 lbs. of fluid!! She was sent home once her albumin was brought up to normal. She was put on a high amount of Prenisone and some penicillan. Everytime her Neph. would try to wean her off the prednisone, should would begin to relapse. She only had to go back once for IV treatments. Almost 2 years past and she basically stayed on Prednisone to keep her in remission, became steroid dependant. Finally the Nephrologist wanted to do a kidney biopsy to 'make sure' minimal change disease was what she had, so he could put her on a diffeent medication. In February '06 she had the biopsy done and shortly after was put on Prograf. With Prograf she looks & feels 100% normal. Only bad thing about it is the blood draws. She has to (not so much now) have her Prograf levels tested often to make sure the levels stay where they should. She's currently still on it but her Neph. plans to wean her off starting next month. I completely understand how you feel, seems like no one has heard of this condition before. Every nurse she sees (at other offices) has never heard of it before and always asks what it is. I'm just thankful she's doing well now. As much as I want (and so does she!!) to be off medications, I don't think she'll be off antime soon.:(I'm not real sure but the heartburn you're having may be from the Prednisone. I've taken some before & got it. Just a thought.Sorry I'm not much help but I wanted to share the experience I've had with this condition so far and to let you know your not alone! There are quite a few people dealing with this, you just don't hear much about it, yet.Best of luck to you!:)
    FireDiva 15 Replies Flag this Response
  • Yeah I'm going on 3 weeks and its tuff. I have good days and then I have bad days. I especially broke out into little red bumps over my face and that's hard to deal with when u never had any before. But I managed to control the heartburn with drinking a glass of milk right before bed and that way I can sleep good. It works!! But Minimal change disease is something else. I hope that I wont have to be on the medications for much longer. I can just imagine what Ur daughter went thru being in them for that long period of time. I tip my hat to her. But that gives me strength to keep my head up thru this.:D
    lianerhymes1 2 Replies Flag this Response
  • Hi - I know it has been awhile since you last posted your answers and questions, but thought maybe my 2 cents' might be worht something. Prednizone can cause heartburn, so can potassium supplements if you are taking them with your Lasix. I am an adult woman with MCD for a year now. I am surprised they did not do the biopsy on your little girl when they first suspected nephrotic syndrome - they wouldn't even treat me without one to confirm diagnosis. Mine was also in remission and I was almost weaned off of all my drugs when I started to get gastritis from the prednizone and potassium, despite also being on Nexium (this does help and if you are not able to purchase it Astra-Zeneca will help you). I started to get sick almost every morning, and did not realize I was throwing up my medicine, and therefore not absorbing enough of them. Even though I was on a low-dose of the prednizone at this time, I still needed that dose. Without I came out of remission and ended up back in the hospital on dialysis. Fortunately, it was temporary, and my MCD is back in remission, though my doctor is being more cautious about how fast we wean me off the meds this time. That's fine - as long as I don't have to do this all a third time! Kudos to the little girl for keeping her chin up for 2 years.
    Anonymous 42789 Replies Flag this Response
  • Hi - I know it has been awhile since you last posted your answers and questions, but thought maybe my 2 cents' might be worth something. Prednizone can cause heartburn, so can potassium supplements if you are taking them with your Lasix. I am an adult woman with MCD for a year now. I am surprised they did not do the biopsy on your little girl when they first suspected nephrotic syndrome - they wouldn't even treat me without one to confirm diagnosis. Mine was also in remission and I was almost weaned off of all my drugs when I started to get gastritis from the prednizone and potassium, despite also being on Nexium (this does help and if you are not able to purchase it Astra-Zeneca will help you). I started to get sick almost every morning, and did not realize I was throwing up my medicine, and therefore not absorbing enough of them. Even though I was on a low-dose of the prednizone at this time, I still needed that dose. Without I came out of remission and ended up back in the hospital on dialysis. Fortunately, it was temporary, and my MCD is back in remission, though my doctor is being more cautious about how fast we wean me off the meds this time. That's fine - as long as I don't have to do this all a third time! Kudos to the little girl for keeping her chin up for 2 years.As an adult I was started on prednisone in April at 75mg and on 10mg now with remisison inplace for Sept 2009. Cause seems to be my biological injections for RAMy ACR was in the thousanda but now about 45 while my blodd protein back to low normalRacidine > was used for reflux
    Anonymous 42789 Replies
    • August 22, 2009
    • 02:32 AM
    • 0
    Flag this Response
  • I personally don't have it but my daughter was diagnosed at 18 months old with Childhood Nephrotic Syndrome. She has the most common form in children with NS, which is Minimal Change disease. It has been a very long road for us since the day she was diagnosed. She is now 4 1/2 yrs.old and is doing wonderful! In the beginning, when I first knew something was wrong, her eyes were swelling. Her eyes would be swelled shut in the mornings. I had taken her in to see the Ped. about it, but he said it was allergies or an eye infection (even though there was no redness), wrote a perscription for antibiotics & prednisone (to bring the swelling down) and sent her home. A month went by and the swelling did get a *little* better, but did not go away completely. I took her back in to see the ped. & this time he immediately did a urine test. The test showed extremely high amounts of protein & a small amount of blood in her urine. She was then admitted to the hospital & spent 4 days receiving IV treatments. Albumin & lasix was some of it. While in the hospital, she lost 6 lbs. of fluid!! She was sent home once her albumin was brought up to normal. She was put on a high amount of Prenisone and some penicillan. Everytime her Neph. would try to wean her off the prednisone, should would begin to relapse. She only had to go back once for IV treatments. Almost 2 years past and she basically stayed on Prednisone to keep her in remission, became steroid dependant. Finally the Nephrologist wanted to do a kidney biopsy to 'make sure' minimal change disease was what she had, so he could put her on a diffeent medication. In February '06 she had the biopsy done and shortly after was put on Prograf. With Prograf she looks & feels 100% normal. Only bad thing about it is the blood draws. She has to (not so much now) have her Prograf levels tested often to make sure the levels stay where they should. She's currently still on it but her Neph. plans to wean her off starting next month. I completely understand how you feel, seems like no one has heard of this condition before. Every nurse she sees (at other offices) has never heard of it before and always asks what it is. I'm just thankful she's doing well now. As much as I want (and so does she!!) to be off medications, I don't think she'll be off antime soon.:(I'm not real sure but the heartburn you're having may be from the Prednisone. I've taken some before & got it. Just a thought.Sorry I'm not much help but I wanted to share the experience I've had with this condition so far and to let you know your not alone! There are quite a few people dealing with this, you just don't hear much about it, yet.Best of luck to you!:)My daughter also was diagnoset exactly like your daughter at 2years old and now she is 27 years old. Her kidney doctor but her on prograf and predison 2 years ago when she tried to be on her own. She lost her job and for medical insurance to cover her cobra came in for 18 months. Her new job insurance carrier said that she is uninsurable because previous conduction so in the mean time her previous insurer under cobra said prograf was a specilty drug and 1 month copay is going to cost her $500.00 a month for generic prograf and after cobra insurance runs out she can not get medical insurance. So as her father we are lost what to do and for now. In the mean time I order her med from canada. Prograf for 100 pills is $174.00 she takes 3 in the morning and 3 at night. I am letting you know what to expect in the future.
    Anonymous 42789 Replies Flag this Response
  • Hello there - also recently diagnosed with MCD, and I've put my experience to date here: http://www.flickr.com/photos/vicg/4695453355/, which, despite the initial shock at diagnosis, has been largely positive.When you read the list of side-effects, especially with the steroids, it's hard not to panic - but remember that all side-effects have to be listed by law (at least, in the UK), and there's every chance they might not happen to you. Be patient and think positive, that's what my consultant told me, and I'm sticking with that.Here's to our future good health :)
    Anonymous 42789 Replies Flag this Response
  • I was diagnosed with MCD almost 2 years ago. My doctor just decided that prednisone isn't keeping me in remission so he put me on Cellcept. I will take it for the first time tomorrow and am wondering if anyone has taken it and if it worked. I am relieved to be off of prednisone but my new medicatiion is an immuno suppressant so i'm a little nervous.
    Anonymous 42789 Replies Flag this Response
  • Hi there! I was diagnosed with MCD for over 4 years, but I've overcome it so now I'm perfectly healthy and happy :)I just wanted to say that it was such a hard journey for me. I went through SO many different medications to find the right one. I had charts I made for each day that listed all the meds I needed to take. Prednisone, cellcept...etc. Eventually, I found that prednisone worked the best for me, as it usually does for most people. Although it helped, there were nasty side effects from this medication and my condition combined. I was only allowed to eat food with low sodium content and drink less water than usual. My legs, feet and face were heavily swollen. Every time I relapsed, I had to go to the hospital where they would give me albumin to "drain my body". I would lose about 10 pounds of water after the treatment. Then they would send me home with a higher dosage of meds. It was the same cycle for years: weaning of meds, sent back to hospital, weaning off meds, sent back to hospital etc. I spent most of my elementary and middle school years in the hospital. I went through several biopsies and one major operation.Eventually, I think time just overtook it. I eventually got to the stage where I didn't need meds at all!!! My doctor said that if you can stay off meds and be fine for two years, THEN THIS DISEASE WILL BE PERMANENTLY GONE. and thankfully, it did for me :DI look great now, really healthy and so happy that I can return to my normal life. The only thing I regret is all the Prednisone I took. IF ANOTHER MEDICINE WORKS FOR YOU, DON'T TAKE PREDNISONE. I had to because it was the only one that worked for me. It not only GREATLY increased my appetite (I was seriously fat) but severely stunted my growth, especially the growth spurts I was supposed to go through. Now I'm 16 and only 5'0'' but I'm pretty sure that if I didn't take Prednisone I would be at least four or five inches taller.So that's about it. I just wanted you to know that THERE IS HOPE and STAY STRONG for the journey to come, because it will be a huge step to overcome but when you do, the feeling is ABSOLUTELY WONDERFUL.Write back if you want. I've never met another person who has MCD.
    Anonymous 42789 Replies Flag this Response
  • I was on Cellcept for a couple of years, and I have to say it did help quite a lot. In the end, I had to revert back to Prednisone to keep from relapsing, but the side effects of Cellcept were so nice in comparison. My doctor also told me it was a immune repressent, and that I would get sicker a lot easier that others. It wasn't that much of a big difference for me. I always got sick naturally about three or four times a year. Maybe it varies from person to person. The thing that I hated about Cellcept was how it causes hair to grow. All of a sudden - hair everywhere! Legs, arms, especially eyebrows! I had the hairiest eyebrows *shudder*It was definitely a high point in the course of my treatment. I hope this helps and good luck to you!!!!!
    Anonymous 42789 Replies Flag this Response
  • Hi there! I was diagnosed with MCD for over 4 years, but I've overcome it so now I'm perfectly healthy and happy :)I just wanted to say that it was such a hard journey for me. I went through SO many different medications to find the right one. I had charts I made for each day that listed all the meds I needed to take. Prednisone, cellcept...etc. Eventually, I found that prednisone worked the best for me, as it usually does for most people. Although it helped, there were nasty side effects from this medication and my condition combined. I was only allowed to eat food with low sodium content and drink less water than usual. My legs, feet and face were heavily swollen. Every time I relapsed, I had to go to the hospital where they would give me albumin to "drain my body". I would lose about 10 pounds of water after the treatment. Then they would send me home with a higher dosage of meds. It was the same cycle for years: weaning of meds, sent back to hospital, weaning off meds, sent back to hospital etc. I spent most of my elementary and middle school years in the hospital. I went through several biopsies and one major operation.Eventually, I think time just overtook it. I eventually got to the stage where I didn't need meds at all!!! My doctor said that if you can stay off meds and be fine for two years, THEN THIS DISEASE WILL BE PERMANENTLY GONE. and thankfully, it did for me :DI look great now, really healthy and so happy that I can return to my normal life. The only thing I regret is all the Prednisone I took. IF ANOTHER MEDICINE WORKS FOR YOU, DON'T TAKE PREDNISONE. I had to because it was the only one that worked for me. It not only GREATLY increased my appetite (I was seriously fat) but severely stunted my growth, especially the growth spurts I was supposed to go through. Now I'm 16 and only 5'0'' but I'm pretty sure that if I didn't take Prednisone I would be at least four or five inches taller.So that's about it. I just wanted you to know that THERE IS HOPE and STAY STRONG for the journey to come, because it will be a huge step to overcome but when you do, the feeling is ABSOLUTELY WONDERFUL.Write back if you want. I've never met another person who has MCD.WOW! It is so nice to hear a happy ending!! God Bless you! My son has been on Pred for 9 months now, he is 5 yrs old. At the last doc. appt I panicked that he had not grown at all since diagnosed with MCD 9 mo ago. We are deciding on a new med for him since he is steroid dependent and I think I am going to go with Cellcept. I hear such positive reviews of it from others who have/are using it. The Neph is suggesting Cytoxan but I am not comfortable with that drug.Best wishes to you!!~janet
    Anonymous 42789 Replies Flag this Response
  • Hi there!!I am Anna. 21 yrs old, Just been diagonised with MCD. being treated woth solondo 50 MG. Got acne from that(( Can somebody tell what should I change in food, life style or general anything to be better? What kind of food will make my kidney happy, which not? What can i do to lessen the effects of drugs... I just know nothing about it, I will really appreciate ur advices.Best,Anna
    anna910805 1 Replies Flag this Response
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  • Dear Anna; My 38 y/o son has been diagnosed with MCD and recently he went to Mayo clinic and was started on Prograf--far fewer side effects than high steroids-Bactrim to protect his lowered resistence to disease-Weaning off the steroids--down to 10 mg now. His blood sugar went to the 400 's with high steroids--ended up on three oral hypoglycemics-he's down to 2 blood sugar lowering meds --before 3 months ago he never had a blood sugar problem... For his skin he is using an oatmeal wash from Wally world-generic. Gets the red out-eye medication generic over the counter med helps pop the zits on his face.There's a chinese tea that helps to pull the protein out of the urine--he's going to try it.Also, there an over the counter--med Prelief-- that takes the acid out of food--not an antacid--that makes the PH more alkaline --it is the acid in the protein doing all the damage to the tubules...glomeri--and he's been on a statin drug(Tricore) all along for high cholesterol apparently there is a study that statins protect the glomeri. Low sodium foods are helping to control the edema the high proteinuria causes in his legs and feet-- especially and also lasix 160 mg total in a day with 20 MEQ of potassium in a day(takes half in AM other half in PM). He was supposed to take the ARB drug Cozaar(lowers protein in the urine--) but his blood pressure dropped too low and he had seizures--so Cozaar's on hold...He also was on an extremely strong diuretic Metalazone--took 16 lbs of fluid off in 2 days... but it is on hold too as he is doing fine on just the lasix again--He went into remission 3 times on the high steroids but everytime he weaned down off the high steroids he got the disease back.There's books-- (Barnes and Knobles) on low sodium recipes and lower glycemic recipes.I got those and .a smoothie book there for my son--My son is allergic to soy but it is touted as a great food for this condition. There's tons of soy food recipes--can google them.There's a malaria drug just starting to be used for proteinuria--atresunate My son hasn't had his return appointment with his regular nephrologist but will raise the question of using this drug-- since he has had so much trouble with the steroids and blood pressure meds---.I am learning so much more than I ever wanted to know about this disease--but my son was my first patient--He tells me-- "be my mom not my nurse--"I tell him --its the same thing... Your stuck with nurse mom--get over it....Hope this was helpful--Ill update as I learn more..Nurse mbegeman RN
    mbegeman 1 Replies Flag this Response
  • Hello, I know this thread has been open for some years now and it's been a little while since there was a reply, but I wanted to go ahead and put my 2 cents in and possibly help out anyone who comes across this thread in the future, and maybe even get some help myself.Basically this is going to be somewhat of a summary of everything that has happened to me with this disease, so you know what could happen to you, but will not always.In 1995, at age 2, I was diagnosed with Nephrotic Syndrom Minimal Change Disease. Here it is now 2013, and I'm now 19, still dealing with this, and will have to deal with it for the rest of my life.When I was first diagnosed, the doctors put me on liquid prednisone that had to be given to me in a syringe because I was too young to take pills at the time, but eventually I was moved off that and started taking pills, even at age 2!I was doing great for a while, but then around age 5 or 6 (I can't really remember...) I started to have problems again, so I was put on a Immunosuppressant called "Cyclosporine" and at the time I was prescribed it, it was kind of an experimental drug, but it was used to help get me off the prednisone, because I had become steriod dependent, and it was starting to mess with me (the side-effects). Also at the time I was prescribed it, it was only in liquid form, and I had to take it by mouth with a syringe, daily.Around the year 2000, or 2001 (I can't remember the exact year, just one of those 2), I had side-effect from the Cyclosporine happen to me, that shocked everyone. One of the side-effects of that drug is it can cause "Pseudo Tumors" which if you know what pseudo means, it basically means "fake". So the Cyclosporine caused me to have a "fake" brain tumor that caused me to have a seizure and go blind (I was only in the 1st grade when this happened).When I went into the hospital for the reaction, I was immediately taken off Cyclosporine and put on CellCept, and was told it's the same thing as Cyclosporine, but not as powerful, and also doesn't have the same side-effects, so it was safe. I was still on the Prednisone (about 40mg every morning), and also on the CellCept, to try and get me off the Prednisone.I was on CellCept for a very long time (I think it was like 5 years or so). But then I moved, and I had to get a new doctor, the doctor that I got didn't know anything about CellCept, but knew a lot about Prograf, so she took me off CellCept (because it wasn't working for me anyway) and put me on Prograf, 3 in the morning, 3 at night. I was with that doctor for 6 years, and around the 4th year I was with her, she noticed that I was having problems with my Vitamin D levels, experiencing muscle cramps, high blood pressure, and chronic migraines (the migraines were from the seizure I had). So she prescribed a few different medications, I was put on Lisinopril so lower my blood pressure, Nexium to control the heart burns that I got from the Lisinopril, Vitamin D, Carnitine (stops cramps), Calcium (also stops cramps), Magnesium (also stops cramps), and a Growth Hormone that I injected into my leg (the long-term prednisone caused me to not grow properly).I was taking all that, plus the Prednisone and Prograf, every morning (except the growth hormone, that was at night), in total I think it was like 13 pills, I can't remember too well.I took that for a total of I think 2 years, then I moved again (now we are in the present). The doctor I am currently with has taken me off prograf because it wasn't working either, and has put me back on Cyclosporine, but this time in pill format. She has put me back on it because it was the only one that I seem to respond to, and it allows me to stay in remission.I am still on all the other pills (except for the growth hormone, it wasn't working) and am still having to deal with this, but it's not stopping me from doing anything, and I don't let it. Just keep your head up, and keep on moving, that's what I always say.If you have any questions for me about this disease, and other complications, I might be able to answer them, just send me a PM, and I can try to answer it the best way possible, since I have dealt with this for so many years, I may be able to help.
    unlucky4ever 1 Replies
    • January 9, 2013
    • 10:19 AM
    • 0
    Flag this Response
  • Hello, I know this thread has been open for some years now and it's been a little while since there was a reply, but I wanted to go ahead and put my 2 cents in and possibly help out anyone who comes across this thread in the future, and maybe even get some help myself.Basically this is going to be somewhat of a summary of everything that has happened to me with this disease, so you know what could happen to you, but will not always.In 1995, at age 2, I was diagnosed with Nephrotic Syndrom Minimal Change Disease. Here it is now 2013, and I'm now 19, still dealing with this, and will have to deal with it for the rest of my life.When I was first diagnosed, the doctors put me on liquid prednisone that had to be given to me in a syringe because I was too young to take pills at the time, but eventually I was moved off that and started taking pills, even at age 2!I was doing great for a while, but then around age 5 or 6 (I can't really remember...) I started to have problems again, so I was put on a Immunosuppressant called "Cyclosporine" and at the time I was prescribed it, it was kind of an experimental drug, but it was used to help get me off the prednisone, because I had become steriod dependent, and it was starting to mess with me (the side-effects). Also at the time I was prescribed it, it was only in liquid form, and I had to take it by mouth with a syringe, daily.Around the year 2000, or 2001 (I can't remember the exact year, just one of those 2), I had side-effect from the Cyclosporine happen to me, that shocked everyone. One of the side-effects of that drug is it can cause "Pseudo Tumors" which if you know what pseudo means, it basically means "fake". So the Cyclosporine caused me to have a "fake" brain tumor that caused me to have a seizure and go blind (I was only in the 1st grade when this happened).When I went into the hospital for the reaction, I was immediately taken off Cyclosporine and put on CellCept, and was told it's the same thing as Cyclosporine, but not as powerful, and also doesn't have the same side-effects, so it was safe. I was still on the Prednisone (about 40mg every morning), and also on the CellCept, to try and get me off the Prednisone.I was on CellCept for a very long time (I think it was like 5 years or so). But then I moved, and I had to get a new doctor, the doctor that I got didn't know anything about CellCept, but knew a lot about Prograf, so she took me off CellCept (because it wasn't working for me anyway) and put me on Prograf, 3 in the morning, 3 at night. I was with that doctor for 6 years, and around the 4th year I was with her, she noticed that I was having problems with my Vitamin D levels, experiencing muscle cramps, high blood pressure, and chronic migraines (the migraines were from the seizure I had). So she prescribed a few different medications, I was put on Lisinopril so lower my blood pressure, Nexium to control the heart burns that I got from the Lisinopril, Vitamin D, Carnitine (stops cramps), Calcium (also stops cramps), Magnesium (also stops cramps), and a Growth Hormone that I injected into my leg (the long-term prednisone caused me to not grow properly).I was taking all that, plus the Prednisone and Prograf, every morning (except the growth hormone, that was at night), in total I think it was like 13 pills, I can't remember too well.I took that for a total of I think 2 years, then I moved again (now we are in the present). The doctor I am currently with has taken me off prograf because it wasn't working either, and has put me back on Cyclosporine, but this time in pill format. She has put me back on it because it was the only one that I seem to respond to, and it allows me to stay in remission.I am still on all the other pills (except for the growth hormone, it wasn't working) and am still having to deal with this, but it's not stopping me from doing anything, and I don't let it. Just keep your head up, and keep on moving, that's what I always say.If you have any questions for me about this disease, and other complications, I might be able to answer them, just send me a PM, and I can try to answer it the best way possible, since I have dealt with this for so many years, I may be able to help.I was diagnosed with MCNS at age 5. I am now 42 and I am still dealing with this issue. As a child I was on high dosed of steroids (prednisone) and could never be totally off it. After a course of (cyclo-something) in my mid-teens, I was off medication for 1.5 years. By the time I was in my twenties, I was only relapsing 3 or 4 times a year, each time requiring high doses of prednisone.The specialist decided to switch me over to Cellcept. At this time I was also prescribed lisinopril. It took several years before I was totally done with the prednisone and only on the Cellcept. However, after being on Cellcept for roughly 13 years, I had complications and was instructed to discontinue use. That was January of this year (2013). About two months later, I had a relapse and decided I would try a product that was made of fish peptides. The proteneuria was up and down, but wasn't high enough for my nephrologist to prescribe prednisone. Time to try something else - I switch to taking my lisinopril(10mg) & fish peptides (1000mg) at night. I also started taking CoQ10(100 mg/day) triple Omega tablets - basically fish oil, olive oil, flax seed oil. I take one tablet 3 times a day. Five days after starting this regiment, my urine was protein free. I've had an occasional blip to trace on the dip sticks. I do plan to try cutting out the fish peptide. They're difficult to find and a bit pricey. The triple omega and CoQ10 are available and often on sale for buy-one-get-one-free. I'm not sure this will help, but hang in there. I know it can be miserable and frustrating.
    Anonymous 42789 Replies Flag this Response
  • Hello, I know this thread has been open for some years now and it's been a little while since there was a reply, but I wanted to go ahead and put my 2 cents in and possibly help out anyone who comes across this thread in the future, and maybe even get some help myself.Basically this is going to be somewhat of a summary of everything that has happened to me with this disease, so you know what could happen to you, but will not always.In 1995, at age 2, I was diagnosed with Nephrotic Syndrom Minimal Change Disease. Here it is now 2013, and I'm now 19, still dealing with this, and will have to deal with it for the rest of my life.When I was first diagnosed, the doctors put me on liquid prednisone that had to be given to me in a syringe because I was too young to take pills at the time, but eventually I was moved off that and started taking pills, even at age 2!I was doing great for a while, but then around age 5 or 6 (I can't really remember...) I started to have problems again, so I was put on a Immunosuppressant called "Cyclosporine" and at the time I was prescribed it, it was kind of an experimental drug, but it was used to help get me off the prednisone, because I had become steriod dependent, and it was starting to mess with me (the side-effects). Also at the time I was prescribed it, it was only in liquid form, and I had to take it by mouth with a syringe, daily.Around the year 2000, or 2001 (I can't remember the exact year, just one of those 2), I had side-effect from the Cyclosporine happen to me, that shocked everyone. One of the side-effects of that drug is it can cause "Pseudo Tumors" which if you know what pseudo means, it basically means "fake". So the Cyclosporine caused me to have a "fake" brain tumor that caused me to have a seizure and go blind (I was only in the 1st grade when this happened).When I went into the hospital for the reaction, I was immediately taken off Cyclosporine and put on CellCept, and was told it's the same thing as Cyclosporine, but not as powerful, and also doesn't have the same side-effects, so it was safe. I was still on the Prednisone (about 40mg every morning), and also on the CellCept, to try and get me off the Prednisone.I was on CellCept for a very long time (I think it was like 5 years or so). But then I moved, and I had to get a new doctor, the doctor that I got didn't know anything about CellCept, but knew a lot about Prograf, so she took me off CellCept (because it wasn't working for me anyway) and put me on Prograf, 3 in the morning, 3 at night. I was with that doctor for 6 years, and around the 4th year I was with her, she noticed that I was having problems with my Vitamin D levels, experiencing muscle cramps, high blood pressure, and chronic migraines (the migraines were from the seizure I had). So she prescribed a few different medications, I was put on Lisinopril so lower my blood pressure, Nexium to control the heart burns that I got from the Lisinopril, Vitamin D, Carnitine (stops cramps), Calcium (also stops cramps), Magnesium (also stops cramps), and a Growth Hormone that I injected into my leg (the long-term prednisone caused me to not grow properly).I was taking all that, plus the Prednisone and Prograf, every morning (except the growth hormone, that was at night), in total I think it was like 13 pills, I can't remember too well.I took that for a total of I think 2 years, then I moved again (now we are in the present). The doctor I am currently with has taken me off prograf because it wasn't working either, and has put me back on Cyclosporine, but this time in pill format. She has put me back on it because it was the only one that I seem to respond to, and it allows me to stay in remission.I am still on all the other pills (except for the growth hormone, it wasn't working) and am still having to deal with this, but it's not stopping me from doing anything, and I don't let it. Just keep your head up, and keep on moving, that's what I always say.If you have any questions for me about this disease, and other complications, I might be able to answer them, just send me a PM, and I can try to answer it the best way possible, since I have dealt with this for so many years, I may be able to help.I was diagnosed with MCNS at age 5. I am now 42 and I am still dealing with this issue. As a child I was on high dosed of steroids (prednisone) and could never be totally off it. After a course of (cyclo-something) in my mid-teens, I was off medication for 1.5 years. By the time I was in my twenties, I was only relapsing 3 or 4 times a year, each time requiring high doses of prednisone.The specialist decided to switch me over to Cellcept. At this time I was also prescribed lisinopril. It took several years before I was totally done with the prednisone and only on the Cellcept. However, after being on Cellcept for roughly 13 years, I had complications and was instructed to discontinue use. That was January of this year (2013). About two months later, I had a relapse and decided I would try a product that was made of fish peptides. The proteneuria was up and down, but wasn't high enough for my nephrologist to prescribe prednisone. Time to try something else - I switch to taking my lisinopril(10mg) & fish peptides (1000mg) at night. I also started taking CoQ10(100 mg/day) triple Omega tablets - basically fish oil, olive oil, flax seed oil. I take one tablet 3 times a day. Five days after starting this regiment, my urine was protein free. I've had an occasional blip to trace on the dip sticks. I do plan to try cutting out the fish peptide. They're difficult to find and a bit pricey. The triple omega and CoQ10 are available and often on sale for buy-one-get-one-free. I'm not sure this will help, but hang in there. I know it can be miserable and frustrating.
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  • I know exactly what you are going through. I have just found out that my MCD has returned (for the 5
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