The loom is available at Home Depot with better sizes for our tubing and it is MUCH LESS expensive,

This is the second political based post from the poster. We don’t need politics in this forum. We all have much more important things going on in our IPF lives. If this kind of posting is going to continue please unsubscribe me now.

No it hasn’t effected my healthcare to date and I think it will help in the future. I sure feel better.

Your unit uses an ON DEMAND system for oxygen. It only supplies oxygen when you breath. You should get a green light showing you are getting oxygen when you breath. If you go without breathing for a period of time the machine will beep at you to remind you to breath. This is how my unit works and we have the same system. Also by being…

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I have also used ATROVENT which is the same as ipratropium. It has worked well for helping with post nasal drip.

If you are on Ofev or the other drug, one possible side effect is a dry cough. I am not a doctor and don’t want to alarm you, but the current COVID causes a cough like symptom you describe. You should immediately consult with your doctor and get an aggressive program to help you no matter the cause.

Proper breathing techniques that I learned got me off oxygen. I was breathing through my mouth. I took classes for proper breathing and read a breathing book. Now, after an aggressive 6 minute walk my O2 is 95-97 immediately or within 30 seconds. My O2 would be terrible if I tried to do what you were doing.

Perhaps you need…

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Hello M-14. I was in the Army in the very early 60’s. I was in the 82nd Airborne and was out before troops were over in Vietnam although Green Berets were there as Advisors. My BIL was in the 173rd Airborne and was in Vietnam and had the exact issues you have had. Hepatitis C and Liver transplant. He attributed it to Agent Orange but…

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Perhaps you could go to a physician that is unaware of your IPF and get a diagnosis based on their lack of not knowing this and you could be checked as regular patient without focus entirely on IPF. You already have a Physician for that

codeine linctus is not available in the U.S. It is only available now in the UK and Australia.

Diagnosed IPF in October 23. On Ofev 150mg x2, I had severe diarrhea every day and one time 9 times in a day. I tried the raisin bread,Carob and Imodium twice a day. Nothing came close to helping. Around the middle of June I asked my Doctor to put me on 100 mg instead of the 150mg. She did, and within a week I have had normal GI…

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I am very interested in the Carob you were recommended by Doctor Nathan. He has excellent credentials. How long have you used it and how many doses do you take a day? I just read another article about Carob and how it is doing for IPF patients in Spain. It appears to be working well. Also read about someone else taking it that is…

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I agree with the other post in that your Doctor that ordered the CT Scan should tell you what those diagnosis mean and how they pertain to you and your particular situation. From my laymen knowledge I think your results look good, but what do I know? Can’t give you a pass for the not taking meds. You walking those miles every day and you…

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IF your Breathlessness was lack of oxygen you can take a portable and use it without interfering with the Dentist or Hygienist. If you don’t have a portable, most dental offices have oxygen on hand. My son is a dentist and I have spoken with him about this. If your problem was due to anxiety you should have breathing techniques to help…

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Information says Pirenidone should be taken with food. Says grapefruit should be avoided. Alcohol and smoking should be avoided. Dosage was recommended starter dosage.

If me, I would try it again WITH food. If I got sick I would not take the second pill and would consult with my doctor immediately with my sick symptoms. My options only. I…

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That’s how mine started BEFORE diagnosis. Couldn’t make it 10 feet without being out of breath. Are you on oxygen or have been? The oxygen got me back to a good state and then I started weening myself off and have been for about a month. I always have it nearby just in case. I could play golf if I wanted but the practice range would make…

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About all the Pulmonologist can do for me, IMO, is scheduling CT scans and appointments and getting me on OFEV. Hopefully that will be a help. I don’t know what else they can do for me, so I don’t rely on them going forward. I am very curious why you haven’t been offered one of the two medications that may help slow the lung scaring. I… Read more

I have the home 120v concentrator. It’s very loud and stayed in our walk-in closet at night. In the morning we would roll it into our pantry and I had 50 feet of tubing to be mobile to go into my office/computer room, the kitchen and our family room. If I wanted to go into the garage or out on our deck, l just took my Inogen and went back… Read more

I use an Inogen ONE and have had no issues with it. I do have extra batteries. The Level goes to 5 and uses the max battery amperage. Going down levels it uses less and the battery last longer. I can also use it in my truck and car as both have the plug in to keep it charged when using. My Inogen is fine for my needs and has been reliable.

A herniated disc can cause these feelings as can several other back related issues. I haven’t heard of anyone with IPF complain of this. I suggest you see an MD for advice if no one responds. Best. Sandy

Hello Margo, It is my understanding you need a prescription from your doctor to obtain an oxygen machine. I had to have one. Your Doctor would be your best resource for advice for oxygen. IPF conditions can vary. I needed oxygen before I was even diagnosed and I didn’t know it. Good luck to you and your family.

I think the actual recommended dose for Ofev is 150mg X2. Many are using the 100mgX2 for various reasons. Personally, I would ask to be put on the 150mg as I believe it is the recommended dose by the mfg. This higher dose should work more in your favor to stop progression of IPF. If you develop the possible side effects and you can’t handle…

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Well my GI issues got worse and I decided to take 5 days off of Ofev. This is without my Dr. Knowledge and I don’t recommend this to anyone. I will tell her at our next appointment.

NO issues for the reset period. Felt great and renewed. Now back on Ofev 150×2 after a week and GI issues have not been nearly as bad. I’m glad I did this as I…

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Thank you to everyone. The suggestions are much appreciated.

I had an appointment with my doctor yesterday. She has no problem with me taking the 100 x2. What I plan on doing is to stay with the 150×2 until I get my next CT scan in a month. I will know better when I find out what my progression is from my original diagnosis CT. I believe I…

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So glad your Dad is doing better. I understand about how he initially felt. It is really disheartening . I’m hanging in and hoping my problem takes a permanent vacation. I wish your dad many years ahead. Sandy

I have been on OFEV 150X2 for four months. I have not had a normal BM since. Always diarrhea including multiple times up to nine times per night. I take Imodium twice a day. Fortunately my BMs are at night. The problem is the multiple times I go, usually 3-4 times which seems excessive. In reading on the Forum, it seems that perhaps the… Read more

You tell me. My wife had three totally different cancers is row. When the vaccine became available we called MD Anderson where she was treated for all three cancers. They told us, on several inquiries, they could not recommend the vaccine. We both agreed to forgo the shot and try to isolate. We are still here and haven’t had any… Read more

I had it last night. It’s very painful. I don’t know what caused it so I can’t blame Ofev. But I am suspicious.

Ask your Doctor if you can use his Crystal Ball.