Peg
Forum Replies Created
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I have IPF, diagnosed 2013 and on 4 ltrs oxygen. I have a lot of nasal drip also, and I use the Simply Saline Nasal spray at least once a day. I make sure it runs down my throat to loosen the mucus and wait a few minutes to blow my nose. It brings out all the mucus and stops the cough for most of the day.
About 3 months ago I started using Organic Mullein (saw it mentioned by Cleveland Clinic). It also helps to keep the mucus draining out and since taking it I able to take much deeper breaths. It claims to detox and cleanse lungs, soothe and comfort air ways and support healthy lung function. Been around for a very long time. I use the Nutra Harmony brand and get it on Amazon.
Peg
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So glad you are adding oxygen sub-forum. I wish we had this 2 1/2 years ago when I first started using oxygen. It would be great if we could use this to give each other hints and help on issues we have with oxygen use. Ideas – your favorite tubing and cannula and where you get them. Supply company you use and is it good or bad. How you deal with getting to dr. appointments with oxygen. How often you change tubing and cannula. Help with nose soreness, etc. You learn so much more from users than from doctors.
Look forward to hearing lots of helpful advice.
Peg
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Someone in the other group I correspond with just recommended a natural solution – Mullein drops or capsules. I never heard of it so checked it out and it seems to work for a lot of people to clear the mucus out of your throat and chest so that would stop the nasal drip issue. The drops just get put in water to drink, so it is easy to use. I checked out the various items on Amazon and found one that was organic, USA made and only 3 ingredients so I ordered it to try. Will let you know how I make out using it. There’s info online too.
Peg
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I also had diverticulosis when I started taking OFEV over 7 years ago. None of my doctors told me that it was not a good idea to take it with that issue already happening. Changed to the 100 after bowel issues about a year in and that was better, but over the years had several diverticulosis attacks and still doctor never said to stop the OFEV. Even in my research I never saw anything about this issue. Anyway I finally decided to stop the OFEV and have been fine ever since and IPF has remained stable and it’s been 2 years since I stopped. My fault for putting up with it for so long. I just wonder how much the pulmo doctors actually know about our daily issues living with IPF – none that I’ve ever talked with seem to be familiar with much. I’ve learned more from forums like this than with doctors.
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Your oxygen requirements may have changed after the exacerbation. You should try turning up your oxygen and see if there is a point where it helps the breathlessness.
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After being very sick and put on oxygen 24/7 I’ve had several series of prednisone and antibiotics. Always feel good while on them but not so good when done. Doctor is just putting me on 10mg per day to see if that will maintain feeling good and I’m hoping this works. Good to hear that it’s worked for you.
Peg -
I would be interested too.
Peg -
I am also 78 and diagnosed in 2013 with IPF. Started OFEV in 2016 and after lots of reactions now taking 100 mg. I also started with headaches about 2 years ago. I previously never got headaches before and tried to decide if it was my glasses needed changing – but that was not the problem. Tried changing the way I sit and stand thinking it was posture, but not solved. Even tried to see if it was food related or amount of food eaten, but didn’t find any connection. I get a headache at least 4 or 5 days out of 7 and they make me feel like I need to lay down. Sometime if I lay down it helps, but most times it does not. Tylenol does not help either – I just have to wait until it goes away. Sometimes I also have nausea with the headache too. I agree with you – I can’t tell if it’s from the OFEV or is it another symptom of IPF.
Peg
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I have been taking OFEV for 4 years and also have thinning hair. It started about 2 years after beginning to take it. My hairdresser made me aware of the thinning and it has progressed and is very thin on top. There is no way to make it look good so I’ve started wearing wigs. I did make the doctor aware of this issue.
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I have been taking OFEV for 18 months now and had all of the awful side effects too. Lost a lot of weight and diarrhea, vomiting and nausea. I put up with it until a month ago and asked my doctor to change me to the 100 mg pills. What a difference. I feel so much better, have gained some weight back and no diarrhea or vomiting. I still sometimes get a little nausea, but usually because I need to eat something. I find that if I keep something in my stomach all the time that seems to help. A hard candy will help in a pinch to take it away. Hope this helps.
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Just make sure to use an oximeter to check your oxygen level and keep it in the 90’s so you don’t damage your heart or lungs. If you need oxygen it will make you feel so much better to use it before you cause more issues.
Peg
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I have IPF, diagnosed 2013 and I was on OFEV from 2017 to 2022. I also have diverticulitis attacks and was not told that you should not take it with that condition. Had a lot of attacks over the years while taking it and in the beginning had to drop from 150 to 100 dose. Still had constant issues. Finally stopped taking OFEV after last attack in 2022 and feel so much better, no attacks since. My IPF is still the same levels and my oxygen still at 4 ltrs.
Just wanted to make you aware to check this out.
Peg
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POCs are not continuous flow and only go up to 1.5 ltrs. The numbers on the machines do not correspond to liters.