MCD Study

MCD Study

By amelieMA
Posted July 21, 2008 at 9:20 am · 10 replies
In Adults with nephrotic syndrome

I would like to share with all of you who have been diagnosed with MCD this elaborate study that I found. There are not that many studies done on this disease and our impression is that there is quite a mystery around this illness. First of all they really don't know how one gets it and secondly the medications are somewhat "trial and error". This study is very involved and it will take you awhile to absorb but it might give some more insight.

http://cjasn.asnjournals.org/cgi/content-nw/full/2/3/445/

Take care, Amelie

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By Beth75
Posted July 21, 2008 at 1:31 pm

Amelie,

Thanks so much for posting this. Gives me hope that if Tekturna does not work for me that maybe one of the second line ones will.

I did reach 'partial' remission and so think I had a parital response to steriods, which is better than none.

Still have to wait and see if I really have FSGS and my biopsy just showed MCD.

Thank you, I printed this out and also sent it on to family.

By amelieMA
Posted July 21, 2008 at 3:17 pm

Hi Beth,
Thanks for your response. How do you know that you have "partial response" and how does one diagnose "relapse"?
I hope you have MCD; will you let us know once you find out? I think the doctors are pretty well in the dark about a lot of this disease and why patients react to the different meds.
Take care,
Amelie

By johnh
Posted July 21, 2008 at 8:07 pm

Amelie:

Great article. Thanks for posting it. For me it is quite encouraging. Though I am a frequent relapser I respond to steroids. I think of remission as going to "trace" levels on the Bayer Albustix. I count relapsing as going into 3+ range which is the beginning of NS, though I seem to gradually increase proteinura each week during my so called remission. According to the article I would qualify as steroid dependent, but I don't feel that it is accurate. I really need those 3 to 4 months off steriods to recover, feel normal, not be so jagged all the time, to sleep a bit more.

John

By Beth75
Posted July 22, 2008 at 9:08 am

my proteins went below 3 for 3 months so that was considered partial remission.

I see Neph in 6 weeks and hope to report good news.

thank you!

By melj
Posted July 22, 2008 at 10:01 am

Thanks for posting this.

I do a lot more reading on this site than I do posting. But I wanted to let you know that I appreciate the discussions that all of you generate and all the links to informative sites. (My son was diagnosed 1 year ago with MCD. Due to his lack of response to drug therapy, we are suspecting he has FSGS.) I learn a lot from everyone in this community. I especially appreciate all the positive attitudes you have. Thanks!

By amelieMA
Posted July 22, 2008 at 11:30 am

Thank you all for your input. This community helps us all in trying to understand what is happening to the kidneys. The doctors only tell us as much as they need to. This site is probably known to you all:
http://www.nephcure.org/Info_aboutfsgs.html
It tells me that there actually is no cure to repair the little filters as far as I can read it. Thus my conclusion that we are all trying to find the best medications to keep things under control. Which means remission, hopefully.
Take it one day at a time, Amelie

By amelieMA
Posted August 4, 2008 at 11:05 am

Steven now has been on the glutenfree diet for two weeks and we don't see any change. All I can say is that I read others on this site with MCD do a lot better
in the fact that they go to work and seem to lead a fairly normal life while taking the meds that the nephs have prescribed. Steven is almost bedridden because 1) his feet are so swollen that it hurts to walk and 2) extreme fatique. He now is being weaned off prednisone - 10 mg every other day - and is taking twice a day 100mg cyclosporine. In fact we think he is a bit worse then he was before. He was diagnosed with MCD in Sept. 2007. Any comments?
Amelie

By mamagemini
Posted August 5, 2008 at 9:48 pm

thank you for the article, it had a lot of info. none good for me though...apparently I am a steroid non-responder.
yeesh. but good to know what to be on the look out for now.

By Beth75
Posted August 7, 2008 at 3:54 pm

the swelling w/the prednisone is way worse for me than it was before pred. Some days it is very difficult for me to walk after work. I get up every hour from my desk and walk on the treadmill for 30-45 min a day, I watch my salt, I wear compression stockings (which do help) but as soon as I take them off, I can literally watch my ankles and feet swell up to twice their size. I am tired too. Maybe b/c I am younger, it is not as hard on me physically????

I am so sorry this is so hard on your husband, you figure you work hard all your life and it should get easier, right??? It must be hard on you too.

I wish you both the best!

After I get of pred, I never want to go on it again!

By amelieMA
Posted August 13, 2008 at 5:04 pm

Hi Beth,
It has been a while since you wrote me. In the meantime we saw a FEMALE fam. doctor who prescribed the suppression stockings, knee high, for Steven. This is the first time, after you, that a doctor mentioned these for the swelling in his feet. They were all male physicians and maybe not so informed about the stockings. We will try them to-morrow. Unfortunately Steve got an agonizing pain in his big toe last week;
antibiotics were prescribed and he was very nauseated. I presume from the antibiotics but I think the cyclosporine does not help in that respect. We have given up on the glutenfree for now as that did not seem to get him any better. Maybe the toe is gout....how many more things does he have to suffer? For someone who is perfect weight, had tons of energy all his life - we have been married 46 years- never took any pills at all, now is taking them by the handful....we take it day by day and are thankful when a good day comes along. You take care and all the best to eveyone on this site.
Amelie

Steven now takes 7 1/2 mg predn. every other day and 200 mg cyclosporine along with all the other stuff.

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