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Pregnancy and scleroderma


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#1 shennen0820

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Posted 07 November 2008 - 10:10 AM

Hi I am 33 and was diagnosed with sclero in July 2008...I have a 2 year old son and would like to have another child. I was wondering if anyone out there has had a baby while dealing with this disease. I am interested in knowing which symptoms were exacerbated and which symptoms were suppressed. I am not on any meds currently and am just trying to deal with this on a daily basis. I am in search of a new rheumatologist who is knowledgeable in this disease. I am seen a perinatologist (high risk pregnancy doctor) and was told to go ahead and get pregnant. Since there is not tons of information on sclero in pregnancy I am looking for some help.
Shennen

#2 GocartMoz

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Posted 07 November 2008 - 11:16 AM

Hi Shennen,

I can't give you any info from personal experience, for OBVIOUS reasons. Nonetheless, I thought this link to our medical section might answer some questions for you. I hope it helps.

http://www.sclero.or...tml#scleroderma

Good luck

#3 linda34

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Posted 08 November 2008 - 03:02 PM

Hi Shennen, I have always stayed anonymous,this is my first post. I have been reading all the posts for about 2 years now. I got really achy one day while shopping, I felt like I was getting the flu. I waited a few weeks but I never got sick, just the achiness. After the holidays I finally went to my primary care physician, he sent me for blood work and I had a +ana. So then I went to a rheumatologist. and with further blood work he found a + scl-70. My symptoms for the first year were extreme pain in hands, wrists, and arms with swelling in hands during sleep and in morning. Chronic burping and heartburn. I have dark skin patches on both temples moving down sides of face, and a 2 by 3 inch patch of numb slightly thicker skin on my back. Not enough symptoms for any diagnosis and just n-saids for pain. Anyway last December I was surprised by pregnancy (my third child) during my pregnancy all my pain went away, even negative blood work it was amazing. (still major heartburn)
It's been 3 month since I gave birth to my son and unfortunately the pain's been back for about 6 weeks, my back always feels tight, the numb spot is bigger. I went to my rheumatologist. and still no diagnosis, but now I'm going for a chest x-ray, pft, barium swallow, and to the eye dr. for an eye scan so she can put me on plaquenil.
Anyway, my pregnancy may have been the last time I will have been pain free. I actually yelled at my husband because I had a my tubes tied(my idea! How many kids could you really have?) My neonatal specialist told me it could go either way during pregnancy, I was lucky I got better.
Your choice has to be yours it is your life at risk. This is just my story and I should add that my pregnancy was a surprise. I don't think I would tried for a third baby in fear of getting sicker, but he is amazing and I'm so glad it happened.

#4 jefa

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Posted 08 November 2008 - 11:19 PM

Hi, Linda34. Thanks for jumping in with an interesting post on this subject. I am glad you have finally decided to discard your cloak of anonymity. Welcome to the ISN Sclero Forums -- I look forward to getting to know you.
Warm wishes,
Jefa

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#5 LisaBulman

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Posted 09 November 2008 - 02:56 AM

Hi Shennen,
I was diagnosed three years before I had my first child. I wasn't on any meds at the time and my pregnancy went pretty well until the end. I felt great during my pregnancy. At 33 weeks I went into preterm labor, spent two weeks in the hospital on bedrest going in and out of labor and delivered Emma at 35 weeks. She was 4lbs 15oz. After my daughter was born I still felt really good for a while. When she was 5 months old I was rushed to the hospital withsever pains in my stomach. They took out my appendix bt two months later the pain was back. Many tests later and a few dr.'s they discovered the sclero had moved into my intestines. I continued to loose weight.. a lot of it... about 20lbs in a month and half. At my lowest I was under 100 lbs. I regained some weight and when my daughter was 18 months old I got pregnant again. I felt so great!!! But this pregnancy was MUCH different. At 20 weeks I started contracting and was put on bedrest with many meds to try to stop the contractions. At 25 weeks I was in full blown labor for three days. The dr.;s were giving me so many meds to stop the pregnancy I was becoming toxic. They prepared me to loose her and said I could only have one more dose of meds. If the meds didn't stop my contractions I was going to deliver her and she would be alittle over 1 lb. For some reason after contracting every two minutes for three days and dialing to 2cm everything stopped. The dr.'s were amazed. I spent the next 7 weeks in the hospital, in a private room with no one to talk to and on strict bedrest. I had to ask to take a shower! At 33 weeks I delivered Grace 3lbs 13oz. SHe spent 6 weeks in the NICU and finally came home weighing 4lbs 9oz. Both of my girls are healthy now 8 and 10. At that point I was told no more children. I have never, not for one second, second guessed my decision to have children. Sometimes they are what feeps me fighting! Since my children my disease has been progressing. It could be the natural path of the disease though. You need to be prepared for the worst and hope for the best. Have a plan for family and friends to help you if you need it.

Sorry for rambling.. just wanted to get you some first hand info.

Hugs,
Lisa
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#6 shennen0820

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Posted 09 November 2008 - 03:27 AM

Thank you to all of you for sharing your stories...it is such a hard and scary decision to make with sclero in the equation. I actually had a great and uneventful pregnancy with my son...except also having my appendix out 7 weeks after delivery. It ended up turning out to be a great time to have the appendix out as it bought me 8 more weeks home with my son. I am a critical care nurse and had to have the appendix out with the "open approach" because is was so bad vs having it done with the scope, so my physician did not want me going back to work with all the heavy lifting that is done during a typical work day. Anyways thanks again for all of your stories...
Shennen

#7 elizabeth harris

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Posted 09 November 2008 - 07:41 AM

Hello Shennen
Before being diagnosed but clearly suffering from symptoms of scleroderma/systemic sclerosis, I got pregnant and at 7 weeks went into hospital for bed rest due to bleeding, my baby kept trying to go into spontaneous labour from 17 weeks, but managed to continue untill 33rd week, result one beautiful boy, now 30 in prime health,Thank goodness, second pregnancy premature birth at 26 weeks, boy, died
three days later, but hospital staff saw something in my afterbirth that made them sugest post mortem and reffered me to specialist who diagnosed the disease, told could'nt have more children, but third pregnancy, despite a drug to prevent labour and a suture in neck of womb, baby born 26 weeks, now age 26 beautiful girl in prime health.
During each pregnancy I was in a form of remmission and so well it was unbelievable and my children gave me the will to fight on regardless, I never thought I would still be here, so pregnancy is possible but with some complications and no regrets.sorry if it sounds scary.
Would'nt have missed it for the world. Elizabeth Harris

#8 aka79

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Posted 10 November 2008 - 03:23 AM

Hi Shennen,
I have not been diagnosed yet; but most likely I have very early stage diffuse; currently not taking any medication. My Rheumatologist told me that it is safe for me to get pregnant right now as long as I am closely monitored. We have been trying for a few months with no luck though.

What does your perinatologist have to say about scleroderma and why does he/she think that it is safe for you?

I would say if your doctors think is ok you should go ahead and do it if you feel good about it. I would definitely try to find a sclero expert to give you the clear. Also remember about medication and how toxic it can be for the fetus, if you are taking anything right now. Something to ask doctors as well.

Good luck and let us know what doctors tell you!

Ana

#9 shennen0820

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Posted 11 November 2008 - 04:28 AM

Basically the perinatologist said I would just to be followed more closely and I could either see my regular OB more often or I could be followed at Yale. Since I feel very comfortable with my regular OB I think I would just be followed there and have an occasional visit with the perinatologist. He stated that I would need to have more ultrasounds (like one every 4-5 weeks) to monitor the babies growth. That sounded great to me...who doesn't like to have ultrasounds when they are pregnant! I have read (somewhere online) that normally the skin tightening does not interfere with the babies growth. It is too bad that is not more information regarding pregnancy and sclero...Do you have any children Ana? Also you said that you have not been diagnosed yet...what symptoms do you currently have? I am in need of finding a new rheumatologist...Doctors are scary!
Shennen

#10 aka79

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Posted 11 November 2008 - 05:40 AM

Hi Shennen,

Unfortunately, we have not been able to conceive due to endometriosis. I am 28 and have been married for 5 years. The best of my life. I am actually having surgery this month for the second time with a technique called LAPEX which is supposed to increase my fertility by 80%....

We were very excited about this surgery but then a positive scl-70 result came along...

I have been feeling different this year, my symptoms are GI problems, achy fingers, hands and ankles. I also suffer from back pain but I don't know if it's related. I do have a few red spots or spider veins on my face. I am waiting for some tests results to see if I have any organ involvement; but my rheumatologist doesn't think I do. She thinks I don't have enough symptoms for a diagnosis. No swelling, no itching, not breathless or tired, none of that.

I know what you mean about doctors being scary. I have actually been to 3 Rheumatologists just in case and they all have said the same. They all think I can pursue a pregnancy. Besides the positive ANA; all of my bloodwork is normal.

I sometimes think that I need to pursue this before it's too late. I feel like I still have time before sclero progresses and maybe it will not progress at all. :lol:

It's great to find another young person in this forum, sometimes I feel like it's unfair that these diseases (closely related) did not give me a chance to start a family with hubby. I wish it would have waited a few years. That is why I am more determined to give it a try as long as my doctor is okay with it.

What have you been diagnosed with?

Good luck and hugs to you!!!
Feel free to PM me too :D

Ana

#11 Kiwi

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Posted 12 November 2008 - 10:56 AM

Hi there,

I know we are all different and me being a 36 year old (single) girl who has been through chemo with this condition is somewhat disenchanted that I will ever have kids due to my egg numbers being reduced.

In saying that I will probably see if I have any eggs left and in what condition they are..... if I ever meet a man!

My question is: how does the belly cope with the swelling? Mine is quite tight. And how does one get down on the ground for a toddler and change nappies and fiddly little buttons on babies when their hands are immobile??

Ever hopeful, Kiwi
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#12 shennen0820

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Posted 14 November 2008 - 08:15 AM

Supposedly per the high risk pregnancy physician I have seen, the skin in the stomach will stretch. For me I am early in this awful disease and my hands still work pretty well...getting down on the floor is another story...my knees kill me. So I usually will sit on the ottoman or the hearth of the fireplace to play. When my son was smaller I just had some elbow soreness and a little stiffness in my hands so it was not an issue to get down on the floor. He is 2 now so he walks and stands so it is a little easier...I guess if I decided to have another I would have to find ways around this. I never really thought about it to tell you the truth....
Shennen

#13 Kim T

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Posted 14 November 2008 - 06:26 PM

I know this is a very personal decision but you might consider if having an only child is really that bad. For awhile we considered a second child and now that my son is almost 16, I'm so glad we didn't. I am "mom" to a bunch of his friends and would rather focus my limited energy and awake time on being the best mother I can be.

PS, Our dream family was going to be 2 girls. I'm now coach of a robotics team and I get to work with the most wonderful girls who join the team. There are many ways to be a mom.

Kim

#14 HeatherT

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Posted 16 November 2008 - 06:10 PM

Oh how I want another baby! Unfortunately, cI am told that cellcept and babies do not mix. I am 38 with a three year old at home and almost 3 years into this disease. I have toyed with the idea but am presently investigating adoption. I'm not sure the adoption agencies are handing out babies to mothers with Scleroderma frequently.

I don't want an only child but if thats all I can have...I'll take it for sure!

Good Luck!

#15 shennen0820

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Posted 17 November 2008 - 02:59 PM

Heather T

I so know what you mean...I have not been on any meds yet or started any treatments so hopefully I will become pregnant soon! It is just scary because who knows what will happen...get better or get worse during pregnancy. I will have to see what happens
Shennen