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Need Advice on Pregnancy and Scleroderma

scleroderma pregnancy pregnancy rna polmerase antibody esophageal dysmotility

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#1 Keelton

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Posted 26 April 2016 - 07:21 AM

I am still in the process of getting a diagnosis; at the present time I do not meet the criteria for scleroderma. I have a positive anti RNA Polmerase antibody and esophageal dysmotility. In my heart I believe I have this disease but it is presenting in an unusual way, I want to get pregnant again but am concerned that it may make symptoms worse; does anyone have experience in pregnancy? I am afraid that my esophageal dysmotility will get worse with the pressure of pregnancy. Has anyone that has esophageal dysmotility gone through a pregnancy and did it get worse or stay the same? I am scared that I won't be able to eat if it gets any worse.



#2 judyt

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Posted 26 April 2016 - 12:50 PM

Hi,

As you will no doubt come to know, everybody with this disorder is different.

 

Some people get to the stage of having to be fed through a port into the stomach, but lots don't.   I have had poor peristalsis for a very long time and have in the past wondered if I would get to that stage.   So far not, but I take a medication twice daily which helps my food to keep going in the right direction and stops me having unexpected vomits.

 

In the past year or so I have been diagnosed with a condition called Achalasia where the Oesophagus is distended and floppy but apart from having to be very careful what I try to eat I have no real trouble.   I have a good nutritious regime and I don't really feel too worried about missing out on the yummy things.   In fact, those yummy things we often are dissuaded from having and aften just the things I can manage :yes: .

Try not to worry too much about what 'might' be and get on with what you can do right now.   No doubt a diagnosis of some sort will come along eventually and worrying about it will only make you miserable.

 

Best wishes from the upside down side of the world

Judyt



#3 Keelton

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Posted 27 April 2016 - 02:56 AM

Hi Judy, thanks for replying,

May I ask what kind of medicine you are taking for your esophageal dysmotilitly? I was told there is nothing that can be done and no medicaton.

#4 judyt

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Posted 27 April 2016 - 11:47 AM

Hi Keelton,

 

You haven't told us where you live and in some cases that does make a difference.   We don't want to know your address but what country do you live in??

 

There is a medication which I and many others take called Domperidone or Motilium.   Unfortunately it is not registered in the US, for whatever reason I am not at liberty to tell you, but it is what I take twice daily and it makes all the difference to me.

 

In the past I had a lot of Gastritis discomfort.   Gastritis is inflammation of the stomach membranes as far as  I remember, and I had unexpected vomits.   That is suddenly I would get the feeling that something was about to erupt then woops!!   That doesn't happen any more.   I did test it a number of years ago.  I ran out of the medication, was not due to see the GP and we were off on a 3 day trip around in the back country so I just let it go and thought I could get a repeat in a few days time.

 

Big mistake :sick: :sick: :sick: :sick:  I spent those 3 days vomiting every now and then and had a very miserable time.   As others have stressed to you, we are not trained health workers and only have our own experiences to talk about but those experiences are mostly not to be discounted in the scheme of things.

 

Online pharmacies are a blessing of the internet and sometimes can make the difference to our comfort.

 

Judyt



#5 Keelton

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Posted 28 April 2016 - 08:02 AM

I live in New Jersey. I have heard of these medications but I read that they don't help with esophageal dysmotility on the rest of the digestive system.

#6 judyt

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Posted 28 April 2016 - 04:37 PM

Hi,

 

My father used to say believe only half of what you hear and none of what you read.   Trying things out for yourself is the only reliable way of deciding.

 

Judyt



#7 Shelley Ensz

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Posted 29 April 2016 - 06:54 AM

Hi Keelton,

 

With suspected autoimmune disease, you should consult your rheumatologist or scleroderma expert prior to becoming pregnant. There are many things to consider, such as timing in regard to flares or remissions, medications to avoid or discontinue, and discussions about the potential affect on the mother and the fetus. With careful planning, there are often successful outcomes -- it's the lack of careful planning that can be problematic or even life-threatening in some cases.

 

See our guide to Scleroderma and Pregnancy. And, if you haven't already, it would be a good idea to consult a listed scleroderma expert. Bear in mind that diagnosis takes an average of six years in the U.S. (which just shouldn't be, and there is now an effort underfoot to diagnose scleroderma sooner, but it will likely take years for that to actually catch on among the non-experts). But part of the problem is that autoimmune diseases often develop very slowly -- which is a great thing from the aspect of not getting overwhelmingly sick right away, but a bad thing in regard to not having answers right away, either.

 

What could matter for you is whether any treatments you could have for dysphagia could/would adversely affect the fetus. Dysphagia can often be managed with some lifestyle changes, like eating slowly, sipping fluids, avoiding difficult foods, favoring easier foods like smoothies or soups, etc.  But I guarantee you won't regret raising the question with your rheumatologist ahead of time so that you can make the best possible decision.


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.

#8 Kathy D

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Posted 29 April 2016 - 08:17 PM

I have diffuse sclero and had a miracle pregnancy (infertile), I had to stop a couple medications and I was under the care of a perinatal rheumy along with all the other specialists, check ups every two weeks the entire pregnancy.  I did not have motility challenges.


Diffuse Scleroderma Diagnosed March 2009

#9 Keelton

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Posted 02 May 2016 - 05:42 AM

Hi Kathy, that is great to hear. I know you said you didn't have any motility changes, I am assuming you have been diagnosed with dysmotility?? Also did you notice any changes better or worse in scleroderma symptoms during or after your pregnancy, like a flare up of some sort? The tough thing for me is I haven't been diagnosed yet. I am worried that it will suddenly come on during pregnancy or get worse after.

Thanks for the reply!

#10 Shelley Ensz

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Posted 03 May 2016 - 04:15 PM

Hi Keelton,

 

In my personal non-medical opinion (and keep in mind that I don't even have a valid First Aid Certificate), most health problems are likely to either stay the same or get worse during pregnancy, and not magically evaporate.

 

It's probably borrowing trouble to be concerned about it at the moment, when the very first order of business should be to consult a listed scleroderma expert. They could discuss whether you may have early scleroderma, or your odds of developing it, and the considerations for pregnancy in your particular case.

 

:hug-group:


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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