Author Topic: Lung Disease  (Read 287 times)

MarieB

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Lung Disease
« on: July 12, 2020, 04:23:12 PM »
Does anyone have interstitial lung disease? 
I've been diagnosed for a few months but my pulmonologists thinks I've had it for much longer.  I've been on oxygen for about a year. 
Before that I had much difficulty breathing -- for at least 2-3 years. 
The outlook for survival is not that great.  I can handle that.
But I'm wondering if I go on a strict veggie diet if that would slow down the inflammation.
The inflammation is what is causing the scarring, right?  So lower inflammation, lower scarring? 
Thanks for any input. 
Best, Marie
Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014

Robi5

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Re: Lung Disease
« Reply #1 on: July 14, 2020, 03:21:41 PM »
So sorry to hear that Marie.

This is info you've probably seen, but I thought I would post something until some more knowledgable people chime in.

https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/diagnosis-treatment/drc-20353113

It lists some possible treatments. 

As far as a Vegan or anti-inflamitory diet, there is a lot of people who swear by it.  I personally value a balanced approach and believe everything in moderation is fine.  Probably its worth a try for a month and see how things improve. 

Hopefully you are getting good care from your doctors and specialists regarding this.  It seems like one of the most serious complications of Sjogrens.

MarieB

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Re: Lung Disease
« Reply #2 on: July 15, 2020, 01:09:19 PM »
Thanks so much Robi5. 
I'll check out the link.  Yeah, I was surprised to get the diagnosis.
I do have good doctors.  The pulmonologists is very easy to talk to but since Covid I have not been into the office in person.  I hope to ask a lot of questions next week when I go.  For a while the interstitial disease did not really show up, so we were calling it COPD, with a close watch for other deveopments.  Then with the last CT scan it seems to have shown up strongly. 

Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014

vrystaat

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Re: Lung Disease
« Reply #3 on: July 21, 2020, 04:23:56 PM »
Interstitial Lung Disease sneaks up on the patient. But before they know it, the patients are in severe trouble.
Another term for pulmonary fibrosis, or “scarring” and “inflammation” of the interstitium (the tissue that surrounds the lung’s air sacs, blood vessels and airways). This scarring makes the lung tissue stiff, which can make breathing difficult.

Symptoms include shortness of breath and coughing. Treatments include medications and oxygen therapy.
ILD can be related to another health disorder: Some people develop ILD as a result of having an autoimmune disease. I have Polymyositis and muscle atrophy of the chest wall.
Examples of autoimmune diseases include rheumatoid arthritis, scleroderma, polymyositis/dermatomyositis, lupus and sarcoidosis.

Can interstitial lung disease be prevented?

There is no way to prevent idiopathic or genetic ILD, but it is possible to prevent some of the types with known causes. You can reduce your risk by:

    Wearing a respirator (a mask that filters particles from the air) around harmful substances, such as asbestos, metal dusts or chemicals.
    Quitting smoking.
    Receiving immunizations for flu and pneumonia to help protect your lungs.

What are the symptoms of interstitial lung disease?
Most people with ILD have symptoms that make breathing difficult, including:

    Shortness of breath
    Coughing, typically nonproductive
    Decreased exercise tolerance
    Fatigue
    Weight loss

But what is not well-known is that the Chest wall muscles are also affected. This can cause weaker and weaker breathing.
This can get so bad that sleep apnea can eventually can arise, and the first symptoms can be nightmares, and shortness of breath arising even with minimal physical activity.

I have had this complication for about two years now. I can tell you, it is a heck of a battle..
My treatment will be very similar to sleep apnea: night-time oxygen therapy, later with a positive pressure pump.

With this nightmarish scenario one soon has a major disability.
Last week, I was given IVIG intravenously and it took me 3 weeks to get over this treatment.

The sad thing is that most Rheumatologists do not know much about this. I have had the local Pulmonologist ridicule me. These days he now knows. But I have been the worst off for this delayed diagnosis.

(To Sir, with Love)


« Last Edit: July 26, 2020, 06:12:02 PM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

MarieB

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Re: Lung Disease
« Reply #4 on: August 02, 2020, 09:16:49 PM »
vrystaat,
Thank you so much for this information.  It answers my questions. 
It sounds like you have quite a struggle.  Please take care of yourself.
Best,
Marie 
Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014

meirish

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Re: Lung Disease
« Reply #5 on: August 03, 2020, 04:28:21 PM »
Vrystaat,So sorry that you are struggling with this problem. Please keep us updated on your treatment and how you are doing, would you. We have posts on this occasionally but haven't seemed to keep a running log of treatments and how people respond.

I have been on IVIG for over 14 years for Myasthenia gravis, bullous pemphigoid and it also helped my low t-cells. I don't have the lung issues but am interested that they are giving you the IVIG. Sure hope it helps. Sorry to hear that you felt to bad for so long afterwards. Would be interested to hear what they gave you for premeds. Please take care and keep us updated. I'm sure there are others who will be interested also. Thanks. meirish