smanda

Still waiting ...

22 posts in this topic

Hi and thanks for your response. Did absolutely everything come back negative, all immunology results ... ANA, ENA etc

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Jefa and Judy,

 

I also have the gastric paresis big time!! My doctor prescribed an old but tried and true medication called Domperidone. It works great! That doesn't mean I can eat a whole "normal sized" meal 3x/day, but if I stick to small meals I do OK with the combination of life-style changes AND the domperidone. The first year or so that I took it I had to get it from Canada because it wasn't FDA approved in the US. I eventually stopped taking it because it was just getting too expensive - about $200.00 for a 2 month supply. Then just as I was thinking about dipping into my meager savings to go back on it my GI doctor called and said a local pharmacy could compound it. Now I pay $78.00 for a 6-week supply (sometimes it's a little less than 6 wks, sometimes a little more depending on how I'm feeling -- average is 6 weeks supply). You may want to ask your doctors about it. When I'm taking it the nausea is bearable (kind of a "Gee, I'm a bit nauseated" feeling, not "I'm going to vomit" feeling).

 

Soaring Eagle

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Hi smanda,

Yes there have been many times absolutely everything came back normal with me also. If you look under the classification for some of the autoimmune diseases you will find what doctors need to diagnose these diseases. Systemic lupus has 11 criteria for diagnosis; you must have 4 out of the 11 to be diagnosed. The criteria for scleroderma has just been revised. Some of these CTD's or autoimmune diseases don't need a positive lab at all to have the disease diagnosed and many do. I read an article somewhere, where a Doctor had symptoms that would come and go. It just so happened a good friend of hers was a rheumatologist that watched her for 12 years and would check for specific labs periodically. On the 12th year she had a +ana and + ra factor and was diagnosed with rheumatoid arthritis. I don't believe that the criteria has stated that the labs must always stay positive even though many do.

For some people the labs never become positive and the symptoms go away for ever. For others I have read their labs are positive but they never develop symptoms.

Keep you in my thoughts.

Judy


A happy heart is good medicine.

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Hi Soaring Eagle,

 

Thank you for the info about domperidone. If the current regime doesn't continue to help I will ask my gi doctor about it.

 

Keep you in my thoughts.

 

Judy


A happy heart is good medicine.

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Judy -- You're welcome! I hope your GI symptoms ease up, but if not, I hope they at least become manageable. To me the nausea is the worst thing to deal with!! I was so glad to get the Domperidone! :rolleyes: It definitely improved my state of mind!

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To all those who have mentioned Domperidone, please note that this drug is NOT approved by the FDA for any purpose in the USA. The FDA is still issuing warning letters to pharmaceutical companies and compounding agencies about its use.

FDA Alert: Detention without Physical Examination of Domperidone, brands names Motilium, Euciton, Cilroton, Praxis, Seronex, Emiken. Domperidone is not approved for any use in the you.S. There have been several published reports and case studies of cardiac arrhythmias, cardiac arrest and sudden death in patients receiving an intravenous form of domperidone. U.S. Food and Drug Administration (FDA). 2004.

This warning is found on both our FDA Warnings page and our Overview of Gastrointestinal Involvement page.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Jefa - thanks for sharing that. I have not had any side effects. I did have cardiac tests a couple of months ago that found everything to be absolutely normal (imagine that, one of my systems is actually normal!!!). I will discuss this info with my doctor, however. It looks from the FDA page that the main concern is with the IV form. I was on cisapride but had stopped it because it wasn't effective in me. Shortly after I quit taking it, it was pulled from the market. I'm glad to know that FDA warnings are posted on this website. I am still exploring it. It is a wonderful service and vehicle for sharing with others going through some of the same things. I love all the positive attitudes!

 

I hope everyone has a good weekend!

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