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New Member - Tested Positive for Scleroderma after 3 miscarriages

miscarriage pregnancy scl-70 infertility positive ana

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#1 jennifer5976

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Posted 15 December 2009 - 07:56 AM

Hello Everyone,
I'm 30 years old and found out two weeks ago that I tested positive for ANA (with a titer of 1:1280) and tested positive for SCL 70 (3). I don't have any symptoms (other than cold hands - but it's winter) and the only reason I was tested was because I'm undergoing infertility treatment after having three miscarriages. My infertility doctor sent me to a rheumatologist for further investigation and he said he does not know if or how soon I will develop Scleroderma, but cautioned that my ANA titer was high. Has anyone else had a high positive ANA and tested positive for SCL-70 without developing the disease? It's been truly difficult for me the last couple weeks. Learning more about the disease has somewhat scared me and I can't sleep at night worrying about it. For now, my rheumatologist is recommending that I take one baby aspirin a day while trying to get pregnant again. Has anyone else had trouble with miscarriages while testing positive for both?



#2 janey

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Posted 15 December 2009 - 09:52 AM

Jennifer,
Welcome Darlin! I'm so glad that you found us and have posted your questions. Please know that you are not the first to ask these questions. We have had several members in the past with the same markers but lack of symptoms. I am not a doctor, so please take what a say with a grain salt; however, I will try to provide as accurate information as possible. The ANA and SCL-70 are antibodies markers that are used to identify the potential of one to develop scleroderma. However, as several of our members will testify, having the markers doesn't mean that you have scleroderma or will definitely develop it. Most doctors use a persons physical symptoms to make the diagnosis. For example, my initial bloodword showed that ANA was high but I didn't have my SCL 70 testing until 3 years after diagnosis and it was negative. My diagnosis was made primarily from existing symptoms which were numerous (Raynaud's, GERD, fatigue, swollen and curling fingers, etc, etc, etc.).

So in answer to your question - Yes, there are people out there that have a high positive ANA and positive SCL-70 that have not developed scleroderma and some will probably never develop it. Reading about this disease is very scary, so at this point, since the only symptom (and it may not even be a symptom) are cold hands, I would quit reading and start focusing on the positive things in life.

We do have several mothers on board that will probably chime in with their experiences. We also have a section on pregnancy and autoimmunity that you might take a look it. From what I can see, miscarriages are directly associated with scleroderma, but please talk to your doctors about that one. Have you discussed this with your OBGYN?

I hope this information helps.
Janey Willis
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#3 linda34

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Posted 15 December 2009 - 12:40 PM

Hi Jenifer,
I have a daughter born 1998, then I had 2 miscarriages. Doctor had me take baby aspirin, and progesterone for the first 3 months of my next pregnancy with my son born 2005. In 2006 I had extreme fatigue and joint pain had a positive ANA and SCL-70. (still have positive blood but no diagnosis yet) found out I was pregnant again in 2007 started baby aspirin and progesterone for first 3 months then just took the baby aspirin till 2 weeks before the delivery. I saw a neonatal specialist for the third pregnancy because of the suspect of sclero but all went well. Truthfully, when I was pregnant I felt "normal" again. Best of luck to you!!!!!!!!!!

#4 Sweet

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Posted 15 December 2009 - 01:34 PM

Hello Jennifer,

Welcome to the forums. I'm so glad you joined us and I bet you are too, because you received great info from Janey already.

I hope you continue post so we can get to know you better.
Warm and gentle hugs,

Pamela
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#5 jennifer5976

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Posted 15 December 2009 - 07:24 PM

Thank you so much for all of your kind words and helpful information. It truly gives me hope that I'll be able to have a baby. We're hoping to conceive in January!!! My thoughts are with all of you. I'm grateful that there is a forum like this, as I was feeling pretty alone until today! Thank you sooo much.

#6 Amanda Thorpe

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Posted 16 December 2009 - 03:22 AM

Hello Jennifer

Welcome to the forum! I hope you have lots of babies and no scleroderma! :happy-day:

Take care.
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#7 Amanda Thorpe

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Posted 16 December 2009 - 03:32 AM

Hello Linda

Welcome to the forum, I know you joined awhile ago but I hadn't said welcome before! If you're still searching for a diagnosis it might be worth your while to see a scleroderma expert.

Take care.
Amanda Thorpe
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#8 Jeannie McClelland

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Posted 16 December 2009 - 04:14 AM

Hi Jennifer,

I'm just chiming in with a welcome too. I had a giggle when I read Amanda's wish that you have lots of babies and no scleroderma. I'll second that!

I had a high ANA, but have never tested positive for Scl-70. Like Janey, my diagnosis was made on the basis of other things (GERD, pulmonary hypertension, pulmonary fibrosis, fatigue, and a few other things). So what I think, bearing in mind I'm trampling all over a lot of researchers' theories, is that the value of a positive Scl-70 is that it scares patients silly unneccesarily, but does guarantee that their doctors will probably keep an eye out for developing symptoms.Posted Image

I hope you make us all honorary aunties and uncles in the new year. We'll all be rooting for you and a successful pregnancy.
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#9 Shelley Ensz

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Posted 17 December 2009 - 05:48 AM

Hi Jennifer,

Welcome to Sclero Forums! I'm sorry it is because of concerns about infertility issues. You've received a lot of good information.

I put dibbies on being Honorary Great Grandma!!

I agree, the Scl-70 can scare people out of their wits, but it still does not guarantee scleroderma and it might even evaporate in future testing. Plus the anxiety the whole thing can provoke, can just take all the fun out of the whole baby project. I can't tell you to ignore it, of course. But bear in mind, many people with scleroderma even manage to have healthy full-term pregnancies.

Therefore I put my dibbies.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Shelley Ensz

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Posted 17 December 2009 - 02:18 PM

Hi Jennifer,

Congratulations -- you are now graduating from the Welcome Forum into the Main Forum, and this thread will be moved there. So be sure to check the Main Forum for further posts and updates on your topic.

Here are your congratulations flowers: :flowers:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 Elizabeth28

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Posted 18 December 2009 - 07:55 AM

Hi Jennifer!

I wanted to write, welcome you to this wonderful board and add some words of reassurance. I, too, tested positive for ANA and scl-70 (1.6 on the first test in fall 2008, 1.3 on the second test in spring 2009) but, after two full check-ups with a rheumatologist who specializes in scleroderma, have been diagnosed as a false-positive. As with all potential health conditions, it's impossible to say where things will go in the future with my health, but my rheumatologist has urged me not too worry and to assume that I'll remain healthy. She estimates my chance at developing the disease as 1%; I've seen a number of published reports that suggest that in the absence of definitive symptoms for scleroderma, a positive scl-70 test by itself means you only have a 9% chance of actually having the disease. Testing for the ANA panel - which includes scl-70 - has become increasingly refined and more sensitive the last few years. As a result of increased sensitivity, however, specificity (e.g. the # of people who test positive and actually have the disease) has fallen. So, while more people with scl-70 are 'caught' by testing, less of those who test positive actually have scleroderma. I hope this makes sense! :-)

I'm the mother of four children, and have had difficulties in the past with miscarriages. My rheumatologist has said she feels its highly unlikely my ANA/scl-70 status has played any role in this, especially because my two miscarriages occurred prior to me testing positive (I'd tested negative before having a massive allergic reaction to antibiotics in fall 2007). I hope you can take some time to search this website for other entries concerning pregnancy, as well as scl-70. You'll find a surprising number of people who have tested positive and are, like you and I, disease-free.

Best wishes,
Elizabeth

#12 LisaBulman

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Posted 19 December 2009 - 04:47 AM

Hi Jennifer,
Welcome! You have already recieved some great advice for the other ladies!! I was diagnosed many years ago now, almost 17, I think, I lost count. I was in my early twenties. I had the disease for about 4 years the first time I got pregnant. I was able to have a mostly normal pregnancy until the end. I went into preterm labor at 33 weeks and delivered a healthy baby girl at 35 weeks, she weighed 4lbs 15oz. She is now 11 1/2. My second pregnancy was a bit different. I started contracting at 20 weeks. We almost lost the baby numerous times from the 20th week until I delivered. I was on bedrest for 13 weeks, went into full labor at 25 weeks for three days until it stopped in an instant. It was a horrifying three days. AT 33 weeks I delivered another girl, 3lbs 13oz, Grace. She is now 9.

Just know that it is possible, it may not be easy, but possible. As I look back at the experience I can't believe what I went throguh and how we all made it through. To see the end result, I would do it all again. Maybe not now at 39, but if I was a bit younger.

Hope this gives you a bit of hope.

Hugs,
Lisa
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#13 Duchess_of_O

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Posted 20 December 2009 - 12:42 PM

Hi Jennifer,

First, please know my heart goes out to you for your losses and I hope that you are successful with your doctors' help. I'm a newbie too, in that I haven't posted on the forum before, but your story has my mental wheels turning a mile a minute!

Then I think back to my own history, when my first pregnancy ended abruptly when it lodged in the Fallopian tube and grew to the point of rupturing it--a classic ectopic (non-uterine) pregnancy. I married young, at 18, and my husband and I tried again. 9 months later, my next try resulted in a toxic pregnancy with terribly high blood pressure and pre-eclampsia. My daughter was born healthy but small at 5 lbs. My doctor warned me at the time not to have any more children but didn't really tell me why. What did I know--I was 19! I didn't get pregnant again until age 24, and we knew something was wrong early on when at 4 months my blood pressure was already rising. This time I went into full-blown kidney failure, suffered seizures and finally had to deliver two months early. My preemie son was a 2-pounder but blessed with few complications and is now a strapping 27-year old man in good health.

So now I wonder, could these have been signs of my condition even then? Now, at 52 and having survived permanently damaged fingers from Raynaud's, a major heart attack and a fairly large eschemic stroke, I remember times in my life when odd medical episodes happened and only now are the pieces are fitting into place, but I wasn't diagnosed with Scleroderma until age 48.

The point of this post is, my 32-year old daughter has had several miscarriages also and the cause has been a mystery. She had one miscarriage, then a beautiful daughter followed by at least 4 more miscarriages. She has given up but still grieves for those unborn children, and so do I. I'm going to ask her to get tested as soon as possible; we didn't have any idea she may have inherited my troubles, and yet when I consider it she has already developed an early form of arthritis and is very prone to sinus or respiratory infections. Thank you for sharing your information, you have given me some hope for my daughter!

#14 Sheryl

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Posted 20 December 2009 - 03:57 PM

Duchess thank you for putting your story into words for others to read and learn from. Let us know what your daughter finds out. We are getting more and more people joining the forum that have parents that also have scleroderma. Or parents that have children with the same symptoms. Some are never diagnosed but share many of the same symptoms.
Linda, Jennifer, and Duchess welcome to the Sclero Forums. Keep posting and keeping us informed on what you are going through. If others can help they will jump in when possible. You will learn a great deal here.
Strength and Warmth,
Sheryl

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#15 Duchess_of_O

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Posted 20 December 2009 - 09:04 PM

Dear Cheryl,

Thank you for the warm welcome and kind encouragement! I've been following the forums for a while and learning how much we all have in common. It helps so much, when in our families and at work we feel so different! You want to talk about it, and then you realize that while people are sympathetic at first, you soon lose them if you tell them too many details. It all sounds like so much is wrong they wonder how much of it you're making up! What a blessing that we finally have the medical community (mostly) acknowledging our symptoms and we are getting actual diagnoses, when so recently we would have been dismissed as hypochondriacs (and sometimes still are).

My first try at joining a forum was a Raynaud's group and I was very shy about sharing information about meds and symptoms, but now I can understand how it helps us to learn different coping techniques to discuss with our families and rheumatologists. I'm fortunate to have a very understanding, empathetic doctor. My husband is more understanding now than he was at first when it seemed that we were always dealing with the "symptom of the week". That is great but I feel terribly guilty for being unable to pitch in and do more for myself and our household. Now I know these feelings are something we all have in common to some degree, and it's tremendously validating!

Best Regards to all,
Josephine (remembered to add my name this time!) :P

#16 jennifer5976

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Posted 23 December 2009 - 07:53 AM

Hi Josephine,
I'm so sorry to hear about all the miscarriages your daughter has experienced. I know exactly how she feels. If it wasn't for me seeing a fertility specialist I would have never known to be tested since I don't have any symptoms. It's hard to believe that doing something as easy as taking one baby aspirin a day can help prevent miscarriages according to my fertility doctor and rheumatologist. I also tested positive for something called an "MTHFR" gene mutation (which pretty much means my body doesn't produce the enzymes required to process Folic Acid, which is crucial while pregnant). So I was put on high doses of Folic Acid to help with that. I don't know if Scleroderma runs in the family, but I just found out that my Grandma was told a few years ago that she may have it (due to skin thickening, and Raynaud's). Please keep me posted on you daughter. I'm seeing my rheumatologist next week to get the results for all the tests they ran, then hope to conceive a week after that! Hope you have a great holiday.

Jennifer

#17 Keelton

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Posted 27 April 2016 - 04:41 AM

I know this is an old topic, but I am curious if Jennifer, who was concerned about having a positive SCL-70 without symptoms ever did end up being diagnosed with scleroderma? Did you end up having a successful pregnancy? I am in the same boat, positive RNA polmerase and esophageal dysmotilitiy but that is all for now. Really want to try for another baby but scared and would love to know your outcome.

Thanks.



#18 Shelley Ensz

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Posted 17 May 2016 - 11:26 PM

Hi Keelton,

I'm sorry there's no answer to this inquiry yet, but as you know, it's an old thread. I was really hoping for a reply to it, too.

Have you had a chance to discuss this concern with your doctor yet?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.





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