MCD remission and chance at having babies.

So after 28 weeks on Cellcept I was hoping to be better. Not so much the last 3 times I've had my protein levels checked it has looked like this...5.9, 2.1, and 3.7. I went and got a second opinion from a nephrologist at Creighton Medical Center. He thought I was receiving excellent treatment, but thought I could increase my cellcept to 2000mg a day and increase the lisinopril.
I asked him about remission and he said I may never reach remission. I asked about babies and he said it is a possibility, but not for sure. If I did I would have to go to a high risk OB. What have any of you heard? I am taking 1000mg of cellcept, 20 mg of lisinopril. I take the lasix as needed. I was on the roids and they kicked my ass. I am SLOWLY SLOWLY SLOWLY getting back to normal.
I know someone posted about pregnancy and fsgs, but I was wondering about mcd and pregnancy.

Also has anyone gone to Mayo for an opinion. I have an appt. because my in-laws are freaking out about the baby thing...

thanks for your time,

vanessa

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Regardless of what happens, adoption is alwasy an option for parenting. Good luck. Erich

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Just make sure if you do try to get pregnant you tell your neph. I know mine told me she would have to take me off of the lisinopril and a few other meds and switch things around before I start trying. I would hope they are on top of things, but I don't know how often other people go.

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Hello. My neph has told me not to get my hopes up on having a child even when my diagnosis was MCD and not FSGS (my diagnosis was switched this year after another biopsy). However, he told me that if I did end up pregnant I would have to go to a high risk OB. He asked me to make sure I gave the OB his phone number. My suggestion would to make sure they both know how to contact the other. Then I would also be sure that when one changes a medicine I would call the other to make sure (I do this with other doctors because I have more than 1 medical condition and we have caught things in the past and none of mine have been upset that I called).

I hope this helps and that things go well!

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sorry to hear that Vanessa. I am still hoping to reach remission but am scared about being able to conceive.

I do know that most of the drugs I am on I have to be off of for three months.

Has your Neph tried Tekturna or Enalpril in combination w/your other meds? Those really seemed to be my turning point. I am just on the Enalpril now, my insurance wont cover the Tekturna for the time being (long story). Though the Tekturna w/out insurance I think is $90 a month so even if I have to buy it w/out insurance I will.

I would be interested to know the effects of having MCD has on the fetus, I also worry about getting pg then having my MCD come back (assuming it goes into remission).

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That seems odd to me, as my OB and my neph told me it wouldn't be a big deal, they would just monitor me closely and and have a few more visits. They never said anything about high risk! I'm not sure if that is because I am 23..... also, my kidneys are still functioning. I do know I've read online that once your kidneys start to fail, it does become a lot harder. I have only had FSGS for about a year and a half now.... not sure what makes the difference. Good luck to everyone trying......I'm trying to get the husband on board!

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I was in the hospital in acute renal failure. I had to have blood transfusion because my kidneys were stripping the red blood cells from my blood at an astronomical rate. I was sceduled to go on dialysis on 7/3/07 and that is the day I went home. After chemo and prednisone in the veins and cellcept theraphy, my creatine levels went down and protein in the urine went down. In March, 08, my doctor told me I am in full remission. I am 59 now and doing and feeling great. I believe in prayer and my doctor seemed to think there was some divine intervention in my case as well. Good Luck!

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Thank you for all your comments. It really helps to hear feedback from other peoples experiences.

What about Mayo? Has anyone been? Should I be getting a second biopsy?

To Awesome son, sorry I don't know your first name, but I would maybe speak to your OB and discuss with her the meds you are on and what your disease is. I would be cautious, only because this medicine can be so nasty and you would hate for anything to happen to your baby. My sister has antiphospholipid and they gave her prednisone during her first pregnancy. Not to scare anyone, but the disease caused her to deliver a still born. She also read that prednisone can cause the umbilical cord to tighten. I teach Early Childhood Special Education children. To me, it may not be worth the risk to be pregnant and put my body through all of this and risk the development of my unborn child (sorry that is the teacher in me talking). But honestly, after being part of what my sister went through, I'm not sure I am willing to put myself, my husband, or my stepson through that. It was such a tremendous lose, fortunately, she was able to deliver a healthy baby. They took our little Audrey one month early. Blah blah blah...

Anyways, Beth, thanks for the suggestions about different drug treatments. The neph I went to to get a second opinion thought I needed to increase my Cellcept, which I kind of did with out asking my primary neph, just to see what happens with my results. I don't go in for lab until next week and then I see her on the 5th.

It is crazy to think this has been going on for over a year, this is what makes me concerned in may be FSGS. Morse, thank you for your input. I had a lurking feeling that pregnancy would not be such a good idea.

The husband is going back to school this summer so we aren't in a position right now anyways, but I heard just wanted others ideas or opions to prepare myself!
I'm ALL for adoption. There are so many children out there who just need a little TLC. Can you tell I'm a teacher?

Hope everyone else is doing well. We are gearing up for some fun thunderstorms in Omaha!! I HATE STORMS!!

take care....

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Well, I guess that is where different doctors do different things. My neph told me I could take prednisone while pregnant, so not to worry about relapsing while pregnant. My OB knows what I have, and she just told me that it would be hard to control my swelling and that I would probably be induced a few weeks early, because it would become hard on my kidneys towards the end. Both my neph and OB seem really comfortable with it, and said it wouldn't be normal, but wouldn't be hard. I just have to change some meds that will be baby safe. This is something I asked about when I first found out I had problems. I want a child so bad, that it was important for me to know before I wanted to start trying then find out I couldn't. My kidney's still fully function, so I wonder if that is why the doctors say it will be no big deal. Good luck....

Allison

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I too am very interested in having another baby. I was diagnosed with MCD about 6 months after the birth of my daughter. She is now 5 and constantly talks about a brother or sister. I am currently on Cellcept and Cyclosporine and have a protein level of .64 grams. I know that the Cellcept is not good for pregnancy and that it can cause abnormalities. Cyclosporine has not seemed to cause any birth defects or increased risk with the pregnancy. I am going to see a new OB next week basically for my annual but also to talk to her about the possibility of getting pregnant again.

I have the same mixed emotions as alot of you have. I don't want to cause harm to me or a baby just to have another child. I am blessed with a beautiful girl but sometimes I don't want her to be alone.

Thanks for listening

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I wonder if I never reach remission w/my MCD, if I go off all meds and then would it be ok to get pregnant? I could go back on them after, but it just seems like I will never reach remission, it has been 10 months and my last proteins were 2.6. UUUUUUUUgh!

I am going to get a second opinion, I like my Neph, but I just want to get better!!!!

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good for you...I am so glad i went with my second opinion. I wanted someone who is aggressive as you can be with this stuff. My new neph increased my cellcept an additional 1000 mg, because he thought it would be worth it.

good luck...

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