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Peg replied to the topic Does anyone get relief from breathlessness in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 6 days ago
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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Peg replied to the topic Prednisone in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 1 week ago
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.
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Peg replied to the topic New Zoom meeting – taking the bull by the horn in the forum Join the Discussion: Welcome to all PF/IPF Patients 7 months, 1 week ago
I would be interested too.
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Peg replied to the topic Head aches in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 6 months ago
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…[Read more]
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Peg replied to the topic Hair thinning: a side effect of Ofev? in the forum Ofev (Nintedanib) 2 years, 7 months ago
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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Peg replied to the topic Way to handle side effect nausea in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 11 months ago
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 some…[Read more]
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Peg became a registered member 4 years, 3 months ago
Thanks for joining the PF forums Peg. Welcome!