1. < Autoimmune Diseases

Sjogrens and Lung issues

Posted by dunbun13 @dunbun13, Dec 3, 2024

I have Sjogrens and I am having lung problems. Getting a CT scan tomorrow, I have questions about ILD… anyone here with Sjogrens and ILD?

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mazel47 | @mazel47 | Dec 29, 2024
In reply to @sbtheplumber1 "@artemis1886 I use Miebo it’s prescribed by my eye doctor. After using it for almost a..." + (show)
@sbtheplumber1

@artemis1886 I use Miebo it’s prescribed by my eye doctor. After using it for almost a year I love it because it’s an oily drop , but I just lost my Medicaid and my insurance isn’t wanting to approve it. It is expensive

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I started using Miebo for a month.
Getting the drops into my eye is rather tricky. I find that it evaporates very fast. I asked my eye dr to send the prescription to Blinkrx, so far I didn’t have to pay for the 2 Miebo prescription

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1 reply
spannell | @spannell | Mar 26 2:35pm

I have Sjogren's and ILD. I have had Sjogren's for many years but I was diagnosed with ILD about 3 years ago. I am very fortunate in that it has remained stable.

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spannell | @spannell | Mar 26 2:44pm

Your experience is very much like mine. I believe I have had Sjogren's for over 40 years. I was erroneously diagnosed with Lupus after my son was diagnosed in utero with complete atrial ventricular block. That diagnosis was changed about 9 years ago. I was diagnosed with LIP about 3 years ago. I am very fortunate that it is stable. I am glad you are in remission.

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jeannef2025 | @jeannef2025 | Mar 28 9:28am
In reply to @artemis1886 "I had the mouth biopsy for Sjögren where they take four glands send it off for..." + (show)
@artemis1886

I had the mouth biopsy for Sjögren where they take four glands send it off for testing. I tested positive. I now been diagnosed with Sjogrens. My ENT doctor did the biopsy. Just an fyi it’s been a month and I don’t feel my lip.

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I had lip biopsy Jan 2024 and as of March 2025, I have most of the feeling back. I doubt if it will all return. Mine was done by an ENT surgeon specialist.

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1 reply
beverly48 | @beverly48 | Mar 28 10:19am
In reply to @autumn1917 "Autologous plasma eye drops are the only thing that have worked for me." + (show)
@autumn1917

Autologous plasma eye drops are the only thing that have worked for me.

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I am not familiar with Autologous plasma eye drops. Can you elaborate more on what this is and how it works to moisturize your eye please?

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1 reply
carlybull1 | @carlybull1 | Mar 28 9:00pm

My Dr mentioned it.
What are yiur symptoms.

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artemis1886 | @artemis1886 | Mar 28 11:08pm
In reply to @jeannef2025 "I had lip biopsy Jan 2024 and as of March 2025, I have most of the..." + (show)
@jeannef2025

I had lip biopsy Jan 2024 and as of March 2025, I have most of the feeling back. I doubt if it will all return. Mine was done by an ENT surgeon specialist.

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Well at least there’s hope getting the feelng back

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autumn1917 | @autumn1917 | Mar 31 2:57pm
In reply to @beverly48 "I am not familiar with Autologous plasma eye drops. Can you elaborate more on what this..." + (show)
@beverly48

I am not familiar with Autologous plasma eye drops. Can you elaborate more on what this is and how it works to moisturize your eye please?

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….”Autologous PRP eye drops are created by concentrating a patient's own platelets and separating them from other blood components. A small amount of blood is drawn from the patient, and then processed in a centrifuge to separate the PRP. “. I have blood drawn at a compounding pharmacy.

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1 reply
beverly48 | @beverly48 | Mar 31 4:20pm
In reply to @autumn1917 "….”Autologous PRP eye drops are created by concentrating a patient's own platelets and separating them from..." + (show)
@autumn1917

….”Autologous PRP eye drops are created by concentrating a patient's own platelets and separating them from other blood components. A small amount of blood is drawn from the patient, and then processed in a centrifuge to separate the PRP. “. I have blood drawn at a compounding pharmacy.

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Thank you. My platelets are low so I don't want to lose any of them.

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pm56 | @pm56 | Apr 1 12:23pm
In reply to @mazel47 "I started using Miebo for a month. Getting the drops into my eye is rather tricky...." + (show)
@mazel47

I started using Miebo for a month.
Getting the drops into my eye is rather tricky. I find that it evaporates very fast. I asked my eye dr to send the prescription to Blinkrx, so far I didn’t have to pay for the 2 Miebo prescription

Jump to this post

I too am on Miebo - I get it for free every month through Blink Rx!

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