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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Guest_Jennifer_*

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Posted 31 December 2006 - 04:56 PM

Hello!
Lately, I've been thinking about having a child. I have systemic sclero and have it in the lungs...and their stats aren't so good. I know I cannot have a baby while on Cellcept. Does anyone have any info on going off Cellcept to have a baby..and, can my body even take it? I will be calling my Dr. on Tuesday but want more insight. If it will be to hard on my body I will consider adoption....and I'm afraid my Dr. may say no way can I go off Cellcept.
Thanks in advance,
Jen

#2 janey

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Posted 01 January 2007 - 06:02 AM

Happy New Year Jen!
What a wonderful thing to be thinking about on the first day of 2007!

We do have a section on Pregnancy and Scleroderma that you might want to browse. As you already know, it is considered high risk and extra monitoring must accompanying it; however, it is possible. This is something I would definitely discuss with your rheumatologist and ob-gyn and do lots and lots of reading.

In reference to the cellcept, here's what I found on drugs.com.
Mycophenolate mofetil has caused birth defects in animals, and there may be a similar risk in humans. Do not use mycophenolate mofetil if you are pregnant. Tell your doctor if you become pregnant during treatment. To make sure you are not pregnant before using mycophenolate, you may need to have a pregnancy test within 1 week before your treatment starts.
Unless you have had a hysterectomy, you must use effective birth control to keep from getting pregnant while using this medication. Birth control is recommended even if you have have been infertile (unable to get pregnant) in the past. Use two effective non-hormonal forms of birth control (condoms, diaphragm, or spermicides) while you are using mycophenolate mofetil and for at least 6 weeks after your treatment ends.

From this it sounds like you need to be off the cellcept for at least 6 weeks before getting pregnant, to be safe. But again - please consult the doctors.

I truly hope things work out for you, and considering adoption is also a great thing! I have a friend that has 12 adopted children and they all have some type of mental or physical disability. It's a beautiful family!!

Big Hugs,
Janey Willis
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#3 HeatherT

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Posted 01 January 2007 - 08:20 AM

Hi Jennifer,
I think about this same topic about 10 times per day everyday. I have a 15 month old right now and our plan (which Scleroderma was NOT a part of) was to be pregnant right now with #2. I too am on Cellcept right now and know its not possible while on the drug but In addition, I am newly diagnosed with Diffuse, so am advised not to even consider getting pregnant for at least 3 years.

So, adoption is something I am starting to consider as well, but again, not knowing how the disease will progress is making me hesitate on this option as well. How do adoption agencies view adoptive parents who are sick? Does anyone have any experience with this?
Thanks,

Heather

#4 Guest_Jennifer_*

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Posted 01 January 2007 - 09:34 AM

Heather,
Thanks for replying. You have a good question about adoption and being sick.

Are you on Cellcept for your lungs? I have been on it for almost two years. I just worry about complications and all....and recovering from giving birth, then being able to take care of the child.

I am glad you had your first cutie pie before all this happened!

I am looking forward to other people replying. I know several have had successful pregnancies but don't know who all had to give up Cellcept for it to happen. I was told at one point I'd always be on Cellcept. I live at a high altitude too, so that cannot be helpful.

Good luck Heather,
Jen

#5 peanut

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Posted 01 January 2007 - 09:50 AM

Hey Jen,
I think about this a lot also but I'm not on cellcept. My rheumatologist talked recently and he said one thing at a time, but he did mention that there are meds I can take to protect the baby. I did ask him about the studies that mention cases of women going into remission but he says that's more likely for rheumatoid arthritis. Scleroderma is more like lupus and may actually aggravate the disease, which I am willing to live with. We are going to talk more once my cytoxan regimen is done.

Let me know what your doctor says.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 LisaBulman

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Posted 01 January 2007 - 09:53 AM

Hi Jen,
I have had two pregnancies while having sclero. I have nevere been on Cellcept so I can't help you there. Here is my long story...I'll try to make it short.
In 1997 I became pregnant with my first child. My OB was very familiar with me and sclero so that helped a great deal! Everything was great, regular pregnancy until 33 weeks. At this time I was very crampy and I went to the dr.'s. They told me I was in labor and had to go to the hospital for some meds to stop the labor. Well two weeks later I was still in the hospital, after laboring almost every night. They sent me home at 35 weeks with complete bedrest. The next night I was back and this time it was to deliver Emma, 4lb 15oz. She was beautiful and healthy and came home with us two days later. After I had her I was the normal, lack of sleep tired until few months later. I was getting horrible pains in my stomach. I called my dr., they sent me to the ER and the next thing I knew my appendix was out. Two months later I had the same pains and now very confused. Well after 3 colonoscopies and a dr telling me I was anorexic (because I lost 20lbs in less than a month) I gave up and just dealt with it. For the next year and half I struggled with daily life as I became more sick. Somehow I found the energy to become pregnant again in 2000. My OB told me what to look out for and by 20 weeks I was having contractions, on full bedrest, meds to stop the contractions. Week 25 I was in the hospital in full labor for three days. The doctors did everything they could to try to stop it. I signed the papers for a c-section with the knowledge she would probably not survive and if she did she would have numerous complications. All of a sudden, everything stopped..... No one could believe it. The dr.s' were successful in holding me off until 33 weeks when Grace came along...3lbs 13oz. She was healthy for a week then became very ill, needing to be on a respirator and receiving two blood transfusions. She was home with us a month and a half later. During both pregnancies, I felt great! After both deliveries I got sicker and sicker. Not sure if it was the course the sclero would have taken anyway or not. I am so thankful that I have my two ladies. After Emma we were not sure if we were going to have another or adopt. After Grace, my OB told me that he would not approve of me having another. He said it is better to be a great mom to the two I have than to leave three with out a mom.Either way, please make an informed decision.

Hugs and good luck,
Lisa

If you want to ask any questions, please feel free. :)
Lisa Bulman
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International Scleroderma Network (ISN)

#7 HeatherT

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Posted 01 January 2007 - 10:59 AM

Hi Again,
As an answer to your question...As of June 2006 I had no lung involvement. I am due for another Pulmonary function test this month and of course I am a little nervous. All obvious skin involvement has progressed quite a bit since June.

Good luck with your decision Jennifer.

Heather

#8 peanut

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Posted 01 January 2007 - 11:40 AM

Lisa,
Thank you for sharing your story. It is good to hear that having healthy children is possible!

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#9 Claudia-DR

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Posted 02 January 2007 - 05:30 AM

Hi there and happy New Year to all! I'm also a sclero mommy. When I was 29 was son was born and unfortunately that led to the activation of the disease. I was diagnosed 2 years later.

I had a great pregnancy though.

Whatever you decide to do, I agree with the others that it should be an informed decision.

Good luck!

Claudia

#10 Guest_Jennifer_*

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Posted 02 January 2007 - 11:17 AM

Everyone has such different stories. Unfortunately, my Dr. said he would not advise pregnancy given my age (39) and combined with interstital lung disease. He said I could but it could aggravate the sclero/lungs either during pregnancy or after birth. He was afraid that being off Cellcept that lung could cause decrease I lung function and I would not bounce back. I'd have to take Prednisone as replacement while pregnant. I am also on oxygen supplement 24/7, so keep that in mind...guess my lungs can't even handle supplying myself with enough oxygen let alone a baby. I was also told that it could put too much stress on my blood vessels and cause pulmonary hypertension. So, it's high risk, but I could if I wanted to but it could cause major problems. It is a gamble to say the least. As a father, my dr. said he'd not want me to miss out on parenting so he said he would support me in my choice. That's just what he advised me....we are all so different so do not let this information get anyone down.
Thanks,
Jennifer

#11 Claudia-DR

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Posted 03 January 2007 - 05:55 AM

Oh Jennifer! I bet you're driving yourself silly thinking whether to have a baby or not. I agree with your Dad that you shouldn't miss parenting. In your first post you mentioned adoption. I just wanted to say that my aunt adopted 2 kids while she lived in the US (this was many years ago). She loves her kids so much that once when a Dr. asked her how many pregnancies she had had she actually said "2". She had never been pregnant in her life! It's just that her adopted children ARE so much her children that she felt she gave birth to them. While it's true that pregnancy is an unbelievable experience, parenting starts after the baby is born... and that's when it gets good. Best of luck on whatever you decide. Hugs, Claudia

#12 janey

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Posted 03 January 2007 - 06:30 AM

Jennifer,
I was surfing the Mayo Clinic site last night and came across a female doctor who states her Interests as
Scleroderma, systemic lupus erythematosus, pregnancy in connective tissue diseases.

Her name is Catherine Harmon and she's at the MayoClinic in Scottsdale.
Janey Willis
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#13 LisaBulman

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Posted 03 January 2007 - 11:59 AM

Hi Jennifer,
If I couldn't have children on my own, I was going to adopt because I knew I was meant to be a parent!!!

My sister in law had never met that someone special to settle down with so she decided to put her name on a list at an adoption agency as a single parent. With in 4 months someone chose her to be the parent to her now daughter, my niece who is six years old. She was called the day the girl went into labor and she arrived at the hospital just in time! It was a miracle that she was chosen but miracles do happen!

We are all here to support you!

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#14 americanmike

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Posted 03 January 2007 - 07:02 PM

Hi Jennifer--

I just wanted to chime in here. My sister is adopted and I'm sure my parents loved her more than me :D growing up! She was a much nicer kid.

Seriously, there is no difference. Adopting a baby vs. giving birth. Once you hold the child in your arms night after night... The love bond is formed stronger than all emotions...Parent to child.

I think you should adopt because you'll have the same joy. Safer health. You'll make a childs life so great. And your natural child would face many perils with your health and age as well.

As for being sick and adoption agencies... I don't know but I wouldn't let that stop you. You can always go overseas where there are still orphanages and many many children in need of good homes. Plus you'd be a great mom!

Good Luck and keep us posted. I know my daughter is the best thing that ever happened to me. If you can be a parent do it one way or another!

Michael in Florida

#15 Guest_Jennifer_*

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Posted 04 January 2007 - 03:36 PM

Dear Janey, Lisa, Lisa, Heather, Claudia, Mike and Heather,
Thank you so much for telling me your stories, advice, thoughts, etc. I took it all in and of course, still unclear what is best. I may decide to call the specialist in Scottsdale. Adoption is an easy choice...I know that love is love, for me anyway.
I'm very uneasy about bringing an unhealthy child into this world and not to mention, me becoming worse and then what.....
I'll keep you posted if anything happens. I just know I"d make a wonderful mom and I feel like it's my calling.
xo
Jennifer

#16 HeatherT

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Posted 05 January 2007 - 02:20 AM

Hi Jennifer,
Please keep us posted! My husband and I just had a discussion and have decided to start moving forward with investigating adoption. I too agree that If after another 2 years, my progression is in check and I am feeling good, I really don't want to risk kicking it off again with a pregnancy and sacraficing my health. And like you, I don't want to risk the health of the baby either!

Good Luck!
Heather

#17 Patty

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Posted 05 January 2007 - 03:50 AM

Hi Jennifer,

I really should not be posting on this thread but I wanted to tell you that I am in the middle of an adoption. I took in my grand baby when she was 4 months old. My daughter has already terminated her rights to the baby and now I am waiting on dad to go to court for the same to happen. I am 43 and this is the best thing I have ever done in my life! This baby makes me smile everyday. I have bad days yes but just looking at her makes me fight more for my health! I say adopt and me a mommy. I do not know you but from your posts I feel like I do and seems to me you will do great as a mom. If you adopt have you given thought what age you would be looking at? my baby is 2 and she just started going through the not sleeping at night stage again so its like having a new born. up every 2 hours. She gets in my bed and I don't like to have her do that. I guess what I am saying is, I am tired a lot now because of this and I know being tired is harder on me because of the sclero. just something to think of.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#18 nan

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Posted 06 January 2007 - 04:34 AM

Jennifer,
I am all for adoption! My husband and I were unable to get pregnant. I wasn't sick at the time. We adopted my son when he was 26 days old. That was 14 years ago. He is so awesome!!!!!!!!!!!!!!!!!! I couldn't ask for a better son.
Good Luck!
Nan

#19 Guest_Jennifer_*

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Posted 07 January 2007 - 10:17 AM

Nan,
Thank you for telling me about your son and the adoption. I love to hear those kinds of stories. If you would not mind sharing, would you private email me and tell me a little more about what it took for you to adopt...and more specifics?
Thanks Nan!!! I am set on being a mom now.
Jennifer

#20 Guest_Jennifer_*

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Posted 07 January 2007 - 04:55 PM

Yay Patty for your adoption. You are soooo lucky. I hope all goes well for you in court and you will be a wonderful mom. I am really excited. Now that I have this idea in my head it won't go away.
Bless you,
Jennifer