dx'd w/Minimal Change Disease 9/6/07

Hi All,

I am new here and was just diagnosed w/Minimal Change Disease on 9/6/07.

The Nephrologist can't say for certain what caused it but I believe I know what did.

In March 2000 I was dx'd with ulcerative colitis and since then have been on drugs that contain mesalamine until 2 days ago. Within a year of begining those drugs I began to have edema (at 24 years old) symptom of MCD and went to the dr's several times, the range of answers was, "it's your shoes" to checking my uterus for cysts.....all ok. Doc's and I could find no answers.

Well my gastroenterologist found hematuria in my urine and sent me for a urinalysis about a month ago, they found proteinuria 4.7grams a day and sent me for a biopsy 8/29. I researched kidney diseases and out of all of them prayed for nothing but if I did have one, MCD seemed like the best prognosis and I found out on 9/6 that I have MCD. I don't think my Nephrologist ever had anyone be excited to have MCD but I was scared of FSGS or worse (still can't 100% rule out FSGS, but my biopsy just showed MCD).

I then researched all my meds and found out the mesalamine if you are 'hypersensitive' to it can cause MCD. So that is why I believe I know what caused it.

I called my GI and we have been playing phone tag. Anyhow the mesalamine for my colitis is for mild/moderate colitis and the prednisone the Nephrologist prescribed is also prescribed for really bad colitis. I made an executive decision as president and owner of Beth, Inc. (me) to stop taking my mesalamine drugs and just take the prednisone for now. If it can cause it , I've been taking it, and I have it, that's all I need to know, plus I don't want the drugs to counteract eachother in my kidneys and have to be on prednisone for longer.

I am on 60mg of prednisone a day, started yesterday for 1-2 mos then will taper 4-5 mos, also Diovan 80mg a day, Simvastatin 20mg a day, Fosomax 70mg 1xweek, Calcium 500mg w/Vit D 2xday. I have normal blood pressure and am not a diabetic, also my bun and creatine levels are fine. I do have high cholesterol, could be from the MCD, though high cholesterol also runs in my family (maternal)

Neph says I have a 70% chance of achieving remission if not will need another round of predisone (hopefully shorter round) and if neither work then have a bigger problem.

I am hoping to find others out there who have MCD and anyone that can offer opinions and advice.

I was scared out of my mind, you hear kidney disease and google it and it says, transplant, dialysis, ESRD, etc.

Thanks!
Beth, 31

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Hi Beth,

I believe there are several factors that can cause MCD with environmental factors and genetic predisposition among them. However, I think stress was the straw that broke the camel's back for me. Chances are you are probably right about what caused MCD for you. You know your body the best.

I was diagnosed at 21. I started on similar drug regiment as you. 60mg Prednisone, 80mg Lasix, 10mg Lisinopril, 10mg Atorvastatin (Lipitor). I switched from Lisinopril to Losartan (brand name is Cozaar, similar to Valsartan whose brand name is Diovan) and then to both and then now just Lisinporil. I took Fosamax (70mg / week) and Calc + Vit D supplements while I was on Prednisone. HIgh cholesterol also runs on my mother's side of the family, but mine was around 425 when I was first diagnosed. That's too high to just be genetics, plus I was a pretty healthy 21 year old at the time. I don't have any problem taking statins. I think they are pretty safe drugs. They've recently shown to help protect against heart disease and prostate cancer, though I believe in higher doses than what I'm taking.

I was on Prednisone for about 9 months. It worked in that I wasn't spilling protein, but that was too long to be on steroids. Luckily for me, the side effects of the Prednisone were not bad for me. Some people don't handle the drug well though. I switched to Cyclosporine about 10 months ago and have been doing well on it. I still need the drugs to keep from spilling protein, but it is better than the feeling of edema and kidney failure and all that.

When I first went to a doctor about my edema, I went to a general doctor at the clinic where I went to university. She saw the proteinuria and other symptoms of MCD and knew my kidneys were failing. She freaked me out with words of 'dialysis' and 'transplant'. That's also all I could find the internet about kidney disease. I don't worry about it now though. Buddha said it best for me:

"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly."

Hang in there.

Ken

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Hello Beth,

I was diagnosed with chronic kidney disease at nineteen months of age. Thank goodness they have come a long way from back in the day when I was first diagnosed. As a child I took 60 mg of Prednisone, Penicillin and other trial medications. Not much was known back in the early 60's, they named it NIL disease/Nephrotic Syndrome/Minimal Change Disease. They doctors told my parents that MCD was the "more kidney friendly" disease to have. It's like a roller coaster ride with the ups and downs of increasing and decreasing of Prednisone. Try being a four year old and refusing to take your Prednisone because you are tired of being sick and having to take medication! Mama called my pediatrician and he suggested to crush it up and put it in my favorite food which was applesauce .... lol Seeing tiny white flecks inside my applesauce I pushed that bowl away. Many who know me have heard this story before ..... Mama said, "Young lady you can either sit there and eat that or I'll spoon feed you like a little baby, that's your medicine and it's expensive and it will not be wasted so it's up to you." Well at four years old I surely didn't want to be called a baby so I sat there and ate my laced applesauce. I was able to get off all medications at age seventeen and didn't have anymore problems with my kidneys until twenty-two years later. I started seeing the signs that I knew all too well when growing up, the bubbles in my urine after using the bathroom. My first reaction was oh God please no not this again. I knew what I had to do was to find a nephrologist and then I'd have to have a biopsy. SEPT '99, I had the third ever biopsy done and it showed MCD once again. Longer story short, I found another Nephrologist and he treated me and didn't like the way I wasn't responding to the medications that he had me on and he wanted to do his own biopsy. AUG 2002, I had my fourth biopsy and that showed that I had FSGS but with my childhood history that's probably why it's in that stage. I don''t want to scare you into thinking that you will develop FSGS.

They are finding that people who have taken the Ibuprofen drugs are developing MCD more and more. I remember my Mama telling me not to take Advil when I was in my early twenties and I told her that I wished she'd told me that sooner because I had just finished my first bottle but never took anything with Ibuprofen again.

I'll never truly know why kidney disease re-entered my life but I will try my best to let everyone know to stay away from Ibuprofen types medications and to watch their sodium intake along with protein intake in their diet. I've cut out sugar as much as possible because diabetes runs in my Dad's family. Now my oldest brother showed up type II just a little over a year ago. Dad's oldest brother has been on insulin for 30+ years and now their sister is now two years into type II diabetes. We have to educate ourselves and others that we only get one body and we have to take care of it now.

Wishing you and others all the best~

~ Gail ~

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Beth:

Hang in there Beth. A book that helped me was "Coping with Prednisone". As you probably now know, the stuff can really effect sleep, eating and energy patterns. After a few weeks of 60 mgs per day I get hypomanic, four hours of sleep and I am ready for the next day. I have MCD and used Mesalamine prior to getting this disease in 2000 for proctitus but never made any conection between the two. But I also took a lot of Motrin prior to getting MCD too. My nephrologist says that my disease is "idiopathic" meaning that they are not sure what caused it. My sister had it when she was in her 20's but has not relapsed since then. So I am not really sure what caused it and no longer think it matters since there are such a limited range of treaments.

So I finished a course of Prednisone in August and am stilling leaking protein at sub-nephrotic levels. Foamy pee, a full abdomin, rings on my shins from my socks, and fatigue all make me concerned about where this is leading. Trying to avoid being a hypochondriac, trying to avoid worrying my wife and daughter. This must be relapse number 7 or 8 so they are now actually fairly comfortable with the situation but there is an expectation that I stay on top on things. But I still obsess and hence search the web for a site like this. Despite what they say about MCD being one of the less severe kidney diseases because it does not lead to renal failure, having nephrotic syndrome with severe bloating is definitely a scarey thing to happen. Made me think about dying and living for that matter.

I am not a doctor but having hematuria is not ususually a symptom of MCD but rather of FSGS. What does your nephrologist say about that?

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Hi Everyone,

Thank you so much for your responses, it's good not to be alone.....but at the same time I wish I was that other people did not have to deal with this.

John - I need to look at the biopsy report but I think it basically said that the hematuria is a result of something in my kidney I think the some of the tubes are narrower than most people's and it is a genetic defect. My brother (we do not have the same father, so we think it is maternal) has unidentifiable hematuria, and he has had things put in many crevices to find out why but not had a biopsy. He has a special license and every two years they test his urine, find this and do many more tests to no avail. The Nephrologist said that this is hereditary and that the only way to identify this would be with a biopsy. So since it is familial and I have hematuria w/a dx (b/c of the biopsy) and he would need a biopsy (which they would not do just for that) so I think that is what he has too.

Are you still taking the mesalamine drugs? I have stopped taking them b/c I beleive them to be why I have MCD and my Gastroenterologist agrees it 'could be', though that limits my drug options for my mild colitis. I was afraid to keep taking them and not be able to put the MCD in remission.

I am hoping to put this in remission so I can start a family next year (Doc says if I put the MCD in remission and it stays there a year would be about the right time frame).

I have been on 60mg of prednisone now for almost 2 weeks. I think I am doing pretty well so far, no weight gain (yet) have been watching salt 1500mg a day and refined carbs and sugar (so much fun). So far I have been getting flushing on my face, kind of a hot flash type thing (I am almost 32) which I see is a side effect of the pred.

I wish you luck on beating this and hope they can come up with something to help you get into remission.

I do my labs on 9/24 and meet w/my Doc on 10/05. Still have foamy urine, so not sure if it's working yet, probably takes more than 12 days though......

I have my biopsy forms at home and I will try to get on the computer at home to post the info about the hematuria. So far no FSGS, but if treatment does not work, could be a possibility.

Best of luck and my thoughts are with you!

Beth

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Hello Beth,

I too was diagnosed with MCD by biopsy. I was never able to determine any probable causes, but was experiencing severe edema and my blood work was abnormal with respect to cholesterol, bp, protein and thyroid. I too underwent high-dose steroid treatment and as I was type II diabetic, I had to begin insulin. I found the steroids extremely uncomfortable - experienced severe loss of muscle in my legs and had other less troubling side effects. After tapering off, and being without steroids for a month, I relapsed.

For me, Cytoxin was the answer - I took cytoxin for about a month, it cleared up the protein and other symptoms - I did loose most of my hair - it grew back - but I never relapsed again - that was 4 years ago.

I do hope the steroids will work well for you and that you too will enjoy a lengthy remission.

Linda
MCD at 53

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Hi Beth! Your story sounds similar to mine. I found out in late August that I was leaking protein and blood in my urine (by applying for a life insurance policy). I had a renal ultrasound and IVP and both came back fine. It is not diabetes and my blood work is fine. I feel fine and have no symptoms - go figure. I am a mother of 3 and I too have googled "protein in urine" and was scared to death. I have no idea what may have caused this. The only thing I can think of is the enormous amount of stress I have been under that past several months. The only kidney issues in my family is my grandmother had diabetes - that's it. Is MCD something they can treat? Also, if someone has FSGS, do they have any symptoms? I know you are not a doctor, but you sound like you're a few more weeks ahead of the game than I am. I meet with the neph on 10/29. I am also going back to the urologist on 10/23 for a systoscopy (to rule out any bladder issues). My primary care doctor told me not to worry. How was the biopsy? Did it hurt? How are you doing?

Teresa

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Hi Teresa,

Yes, it is terrifying especially googling all the information and seeing ESRD, kidney failure, dialysis etc.

For the biopsy I was terrified but really did not need to be. The nurse and doctor were very nice, I don't remember much of the procedure. The couple of days after I was pretty sore and over the next week began to feel like normal, took about 2 weeks for me to feel up to going to the gym again. Take it easy the first few days and week, you will be sore but not a lot of pain, I went to work the next day (have a desk job). When you go in they sedate you and lay you on your stomach and give you oxygen, then stick the needles in, which I don't remember much of. They check one kidney b/c it affects both. I do prefer a colonoscopy to a biopsy but that is my own sick humor.

MCD can be caused by many things and I think many times the cause is unknown. When they do the biopsy they send your results to a lab and they use and electron microscope to see the changes, which they cannot see under a regular light microscope and MCD could be FSGS, there is not guarantee but if it responds to treatment and you are able to go into remission, it is probably MCD. Here is some good info: http://www.nlm.nih.gov/medlineplus/ency/article/000496.htm

When you meet w/your nephrologist, bring a notebook to write stuff down. I had a lot of questions and also, keep track of all your meds and appointments and stuff.

I hope that whatever is going on with you they are able to treat it quickly and get you better soon!

All my best,
Beth

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Hi Teresa,

I found out two Februaries ago that I was spilling protein. I, too, had a renal ultrasound, which came back fine. It's good to know that you have no symptoms. I was spilling a lot of protein and lost so much in my blood that I gained a lot of water weight from the edema (swelling).

I had a kidney biospy, and it too was pretty much normal, so I was diagnosed with MCD and put on prednisone among other things. It's generally treatable. Most people respond to prednisone, but it has side effects. If it doesn't work, they can try immunosuppresants like Cyclosporine or Cyclophosphomide. (There are others too.) All of these drugs have side effects. There is a balance between kidney function and unwanted side effects. It depends on your wishes, how bad the proteinuria and kidney function are, how you respond to the treatments and so on.

Usually, they give a statin, like Lipitor, and an ACE inhibitor, like Lisinopril. The statin is for high cholesterol which is commonly seen in patients with MCD. The ACE inhibitor is a vasodilator. It dilates your blood vessels which helps lower your blood pressure and spill less protein. A diuretic is often given also depending on how much edema you have. You say you have no symptoms, so you may not be given one. These drugs usually have more benign side effects than the ones mentioned in the previous paragraph.

By the way, the biopsy was easy. I laid on my stomach. They put an anesthetic in my IV and I felt high as a kite. I was awake, but didn't feel much of the needles or really anything. They put a bandage over the area and it was healed within a few days. Nothing to it.

I was treated with prednisone for 9 months. It worked but not as effectively as time went on. I was switched to Cyclosporine about a year ago and have been on that since then. It's very effective on me. I haven't spilled any protein since I've been on it.

In general, MCD is idiopathic. There is no known cause. Sometimes it can be occur after you have a strep infection, but in general, you can't really say there is a direct cause. There are factors that can increase your chance of getting MCD, however. I believe stress is one of them. I was stressed out shortly before I starting spilling protein. Other factors might be history kidney disease, genetic predisposition, and others. I'm not sure how much is known about such factors.

Children are usually the ones diagnosed with MCD. Usually, they "grow out" of the disease. As they near adulthood, they go into remission without any treatment and stay that way for the rest of their lives. I couldn't find much about this type of remission in adults who get MCD.

Anyway, I wouldn't worry too much. The biopsy will be fine. You are not experiencing any symptoms. It's treatable. You have many years to live.

I will echo what Beth said though. Learn as much as you can about your body and the treatments and the diseases you have. Ask your doctor(s) questions. Learn what the numbers on your labs mean. Learn about the potential side effects of drugs you are taking or may take. Learn about your treatment options. For me, I feel better knowing about what is going on with my body. It is my body, after all. Plus, the treatment is between my nephrologist and me, not me doing what he says without question. There aren't any surprises if I know what's going on.

I live my life as normal -- working, staying active and all that. I just take more pills than most people do. I don't like doing it. I know what the drugs can do. But thems the breaks. Stay positive.

Cheers,
Ken

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Thanks for the encouragement. I met with the neph dr. about 2 weeks ago (they make you wait 1 month to get in to see them as a new patient - more nerve wracking). He reviewed all of my information and told me this is nothing to worry about. He believes it is something called "IGA Nephropathy." One of the reasons people develop this condition is from having many bad tonsil infections - go figure!! But during the past 2 years, I had strep several times and wound up with a cyst in my tonsil. I had my tonsils taken out in 1/2007. After reviewing all of my medical records from the past 2 years, it was found that I had blood and protein in my urine in Nov. 2005!! I was at the ER for a severe tonsil infection and they did a urine test and they treated me for a bladder infection. While I was pregnant, one of my urine tests from 3/2006 also said I had blood & protein (amazing how my OBGYN never mentioned anything to me). So, the dr. feels even more confident that it is IGA since the issue has been there for a couple of years and nothing has progressed. He said my chances of this being MCD or FSGS were about 5%, so we are going to do the biopsy just to confirm. He said he would teat me with fish oil supplements and a low dose of high blood pressure medicine. He aslo prescribed me some valume for the biopsy, so I'm not sure how much they are going to sedate me for the biopsy (which is scheduled for 11/19). We felt much better after meeting with the dr., because a million things ran through my mind. I even had a life insurance co. deny me for coverage because of this. So, of course it made me think, well, if they won't insure me, I must be dying soon. Hopefully the biopsy will come back with good results. Thanks for your comments.

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Hi Ken - thanks for your response. According to my nephrologist, he doesn't think this is a major issue (not MCD or FSGS). He recommended that I take Fish Oil supplements and he may put me on a low dose of blood pressure medicine. He also said that I didn't need a biopsy, but it's my choice to get it done and know for sure. Friends of ours have a son with FSGS (diagnosed at 6) and it is heart breaking to see what he is going through. And like I mentioned, I have 3 small kids that rely on me. It's funny, but according to my medical records, I had blood & protein in my urine in Nov. 2005 and March 2006. In Nov, I was treated for a bladder infection (go figure). The March 06 test was taken when I was pregnant and nothing was ever mentioned to me by my OBGYN. This is another reason the neph doesn't think this is a major issue (had it for 2 years with no symptoms). He believes it is IGA Nephropathy and most people get it from chronic tonsil infections (I have had bad infections as a kid and most severe ones over the past 2 years causing me to get my tonsils out in 1/2007). The Neph said that when kids have this problem, they take their tonsils out - who would have thought!! I am keeping my fingers crossed. I have the biopsy on Monday and hopefully will get good news for Thanksgiving!!

I am glad to hear you are doing well and that your treatment has been successful - enjoy your Thanksgiving and I'll keep you posted.

Teresa

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