Minimal change Disease

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kym1489
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/9/2008 2:32 AM (GMT -7)   
Hai, I am new here and i dont know where i should put this topic. Did anyone know or having this disease. I am now under medication ( prednisone and cyclosporine ). Actually i wanna find someone to share with me about this sick, cos my condition now is not so stable..keep swelling on my feet when i walk or sit too much. I already control my fluid intake and try to eat low salt diet..still cant get the problem solve. If someone have any information about this please let me know. Thanks.

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 4/9/2008 9:47 AM (GMT -7)   
Kym,
I found some basic information on the web. Hope this helps.

Minimal change disease from Wikipedia

MedLine Plus - Nil disease

Looks like it's very treatable. Good luck.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 4/9/2008 9:55 AM (GMT -7)   
Hi Kym,
I have some kidney issues myself that are as-of-yet undetermined; I've posted my questions in the lupus forum since there are many people there with lupus-induced kidney disease. The disease process is different but some of the diagnostic tests and procedures and specific treatments are similar, so you might want to try that to see if you get more responses :)
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2142
   Posted 4/9/2008 10:10 AM (GMT -7)   
Hi Kym,

I have Minimal Change Disease. Check out http://www.nephcure.org/NephSpace.html

I am also Beth75 on there as well. MCD is really a tough disease. If you read my profile on there you will see my story about MCD. For the swelling, I take fursomide 20mg every day, it helps some and I 'try' to watch my salt. You can see my meds I take below.

Probably best to contact me through the Nephcure website regarding MCD, you can put up messages and there is already a lot of posts you can look through there. I look forward to hearing from you. There is not much info out there about this disease and it is scary.

All my best,
Beth


Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.

Post Edited (Beth75) : 4/9/2008 11:39:44 AM (GMT-6)


kym1489
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/9/2008 10:34 PM (GMT -7)   
Thanks for the info. Beth75, this disease sound scary because of "unknown causes, cant prevent". Actually i had this disease 4 years ago, that time i having a temperory kidney failure and under dialysis for almost a year. quite painful experience for me and after all the hard work, it cure and now relapse again. So i am so scare that it would lead me to kidney failure at the end if it keep relapse.

I will try to look for more information on the site you mention.

Thanks a lot.

BlueEyesAU83
New Member


Date Joined May 2008
Total Posts : 1
   Posted 9/18/2008 12:45 AM (GMT -7)   

Hi,

I have recently been diagnosed with this, confirmed through biopsy.

For lack of better words it sucks. I also have type 1 diabetes and the renal doctors want to treat with only prednisolone. I had microalbuminuria earlier in the year, mid year a repeat overnight collection showed just under 3g protein and recent (August) 24hr collection was 4g/day. My kidney function is SLIGHTLY decreased and have messangial (sp?) deposits of IgM, C3, and C1Q. Legs swell up at the end of the day as does stomach (more than normal)

I'm trying to decide whether I want to treat this or not. I'm VERY resistant to the idea of steroids, mg blood glucose numbers have already been running high and steroids are just going to see me running 20+ (400) all the time.

Good luck and hugs.

 

 


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/24/2008 9:49 AM (GMT -7)   
I am glad that you all have found each other here. Please feel free to continue to use this forum for discussion of your condition. I wish I could be more helpful.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

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