peg
Forum Replies Created
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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.