Ben Robinson
Forum Replies Created
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Phlegm or mucus is a sign of inflammation only remedied by prednisone. I say where there is smoke there is fire. Mucus is the smoke inflammation is the fire. Bursts of two 20 mg tablets for 5 days every 4th week is the best medication I have going. The 7.5 mg per day maintenance between. This way there are no side effects. I have NSIP autoimmune PF. MCTD ILD. Hope this helps to discuss with your doctor. I had to fight with mine for years to work it out. One too little and one to much. I discovered the bursts myself with trial and error. I found it ineffective after a week anyway. Side effects are a known concern with prednisone but not at these dosages.
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I think the autoimmune suppressant lung transplant medication may have prevented the virus from turning into Covid disease and an autoimmune over reaction which does the most damage on you as it did me who has been on CellCept for a couple years. I had the same symptoms from the virus and no lung action. Lucky me. That’s is what I figger anyway. Autoimmune pills working in reverse LoL. I got a bonus too I lost 10 pounds from the night sweats soaked Believe me I am still quite quarantined but this virus is hard to avoid totally. I am glad the other person survived her ordeal. I believe that corticosteroids dexamethasone is the best treatment if you get the Vid.
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Cheers let’s hope something good like new treatments for our forgotten lung disease now come from this virus studies. I would like to know about lung regeneration myself as I have autoimmune PF and am healing in my 6th year. Started reversing at year 4.5. Take those CT reports with a grain of salt. Even Johns Hopkins doctors can’t half read the scans. Believe me. PF in the outer connective tissue looks like a big white blob shrinking your lung like the 60s movie LoL. Inside the lung it gets hazier with increased opacity as the PF grows if you have it there Best compared to previous scans so that it can be discerned from prior lung damage to see if it is growing. PFT and other supporting test changes should also be included in the analysis. Be wary of flawed CT report analysis which is very common. Many doctors refuse to read the imaging doctor report but I found them to be often more accurate than the dam doctors and wish I would have given them more stock. From my experiences 6 year vet of the doctor wars who would be stone dead if I hadn’t questioned them and studied on my own.
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A doctor is needed for this diagnosis. I don’t think it is the Ofev.
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Take enough oxygen say 2 liters to get your oxygen sat above 90. She may require higher levels upon exertion such as walking around when the blood moves faster through the lung.
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Get some low dose Lasix prescription from your doctor and clear that up before it damages your skin and all. Low dose is no side effecta but you will pee a lot.
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It is standard to have three different oxygen levels – one for resting, one for exertion and one for sleep. 7 is high flow and should only be used for the exertion as you say. Used all the time it will probably irritate your lungs as it did mine. The 3 sounds about right for rest and maybe even 2 for sleep. This break in high flow should keep you out of trouble until you see your new doctor. A bubbler on your stationary concentrator helps with the burn. I love the Millenium.
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You can absolutely take too much oxygen. Google Oxygen Toxicity. Very dangerous. I have been suffering from it and it inhibits my ability to take oxygen. Then oxygen burns and causes pneumonitis lowering saturation levels further. Once you are stricken the only cure is to sit still and minimize your oxygen usage. Obviously a disaster. I am on month 2 very slow healing. Probably caused more by high flow oxygen and exertion or exercise. Take only that which is necessary to stay above 90 or 85 at the lowest. Most doctors don’t know this. Mine say “I don’t do oxygen!?” And dole it to the nurse. who knows little. Please be careful with over use of oxygen. For what it’s worth. 6 year PF Vet. Still alive by studying the medical websites.