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Scleroderma and Long-Term Use of Proton Pump Inhibitors (PPIs)

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#1 Choclit


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Posted 26 February 2016 - 03:09 AM

Last week National Public Radio did a story on the dangers of long-term use of proton pump inhibitors as well as the difficulty in getting off of them.  I was concerned enough about this story that scleroderma patients might try on their own to stop their PPIs without talking with their doctors first that I did a blog post on the topic, which is National Public Radio NPR Report on the Long Term Dangers of Heartburn Medicines.

Ed Harris
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#2 Kamlesh


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Posted 05 March 2016 - 07:55 PM

I have no choice, I am on Pantoprazole, 40mg twice a day + Ranitidine Tabs (which is 300mg prescription Zantec which is only 75mg over the counter). I have extreme acid reflux and I will not notice at all, except when I forget to take medications, my lungs will notice it.

Kind regards,


#3 Amanda Thorpe

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Posted 08 March 2016 - 02:28 PM

Let's also bear in mind the damage unchecked reflux can cause like Barrett's Esophagus which in turn can lead to cancer. For those with lung issues, aspiration pneumonia and death.

When you have a disease with the potential to limit your life, and you don't know whether it will until it does, quality of life becomes paramount and within that the struggle between side effect and symptom rages ever on.

Someone let me know the answer.

Take care.
Amanda Thorpe
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#4 Shelley Ensz

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Posted 08 March 2016 - 02:47 PM

Thanks for introducing and explaining this topic, Ed. 


As you, Kamlesh and Amanda all mentioned, I simply want to reinforce the idea that untreated heartburn can lead to disastrous changes in scleroderma patients, including Barrett's esophagus and even cancer. So it is very important to discuss potential side effects and our alternatives with our doctors, but it can be very detrimental to our health to stop taking any medication on our own accord, just because we read or hear something adverse about it.


Scleroderma is one thing, and occasional heartburn in healthy people is another matter, and those people may want to review this topic with their doctor if they question whether the side effects might be worse than the condition. For many people, sometimes including scleroderma patients as well, simple lifestyle changes might be all it really takes to put heartburn at bay, such as eating smaller meals, avoiding troublesome foods, elevating the head of the bed by about 4", eliminating alcohol and nicotine, or even not laying down or bending over within a few hours of meals. See our Hearburn resources for more ideas.

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Shelley Ensz
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#5 Kamlesh


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Posted 08 March 2016 - 05:55 PM

I am treating my heartburn to the maximum extent. I also visited UCSF, which is one of the top hospital. Even after treating heartburn to the full extent, my Demister score for acid reflux is 82 (normal person has 14 or less). My esophagus has no elasticity and my GI doctor has never seen such a poor Motility test, so he repeated again with same results..UCSF is recommending again (I went through in 2008 with great success) Partial Fundoplication surgery which tightens valve between Esophagus and stomach. My GI doctor would not recommend at all as tightening the valve  may stop food going in stomach and causing it to feeding by feeding tube. I am told that Partial Fundoplication surgery can fail.


Anyone can share their opinion?


But in my case, acid reflux, is not top issue to manage, there are several others such as Neuropathy Pain and side effects of medication, etc.

Kind regards,


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