[Roger Mills]

Hello All,

I am holding out taking Esbriet because of side effects and the fact that I’m already taking close to 14 medicines/supplements per day. I have been polite and told the three different doctors that have encouraged me to try it. I am 66 years old and having seen my Mom suffer from permanent side effects from cancer treatment I am wary of them. I may not live as long as those who take it, but i hope that my time that i have will be of higher quality with my 16 year old son. I use an oxygen concentrator at night and carry a tank with me to work and anywhere i will be walking any distance over a few steps. I was diagnosed with IPF in April 2016. I wish all of you the best who are taking this medicine……Roger

[Roger Mills]

I read the postings about possible relationship between statins and ipf. I have been taking them since the 1980s, first pravachol and then 10 mg lipitor. I wasn’t diagnosed with ipf until April 2016. I am still taking lipitor. I don’t notice much of a side effect beyond muscle cramps which are alleviated with Co-Q-10 200 mg. I will be following this thread with interest. Wishing you all the best Cynthia ( @cynthia-comery-ferguson) ……Roger Mills

[Roger Mills]

Hello Charlene, I was diagnosed in April 2016. At the time i was working at a branch library as a part time non benefited aide. I was fortunate to have worked for 30 years in the same system and to have retired in 2003 at age 50 when my son was born. I went back to work in 2006 in the my current job.

My workplace, supervisors and coworkers have been wonderful to me. I still do the same job as always. They have told me that they will work with me and have been super supportive. I do work some of my shift on a public service desk and around the public. So, i will probably have trouble with illness at some time in the future. I am using oxygen therapy at night because my level has dropped below the safe level when i sleep.

I cope with the risk of exposure to illness by trying to use hand sanitizer and washing my hands frequently. Other than that, in a public job, there’s not much i can do.

I am feeling the disease start to wear me down. I really need the wage i earn to make ends meet, but when the disease gets to a more significant level i will have to resign and rearrange our budget. Thankfully i am on medicare and have supplemental insurance from working for 30 years. I know that won’t be of help to younger folks as yourself. That is my story. I lost my wife of 20 years in June 2017. My son is 15 years old, so my circumstances are far from normal for someone my age. I hope this information helps you.

[Roger Mills]

Hi Charlene,

I have read the above posts regarding muscle cramps and pain. I have notice over the time since i was diagnosed two years ago that i sometimes develop severe cramps in muscles in my chest over my right and left lungs. Also i develop agonizing ones in the muscle area in my inner thighs. It is difficult to wait for them to pass and relax. I wonder if you or anyone else has these kinds of cramps? I am to start using oxygen therapy at night after a recent oximeter test that showed my level dropped below 88 while sleeping. I welcome any suggestions for relief from these cramps. They may too be caused by lower oxygen levels reaching my muscles.

Roger Mills

[Roger Mills]

I am thankful that you all are here in this support group. I am supposed to begin taking Esbriet soon. I hope that i will be able to tolerate it. Thank you all for the comments. I will take everything you have said into consideration when i begin this medicine. My pulmonologist has gone over the side effects and wants to start me on a therapy.