Cindy Sears
Forum Replies Created
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I am confused. I asked my specialty pharmacy if being on Ofev meant I was immunosuppressed and the pharmacist said no that Ofev does not make me immunosuppressed. Yet all of you seem to think we are. Did anyone else ask their pharmacy?
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So sorry for your loss. Prayers for peace and comfort for the family.
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Wendy, I had a hard time after my second covid. I had a cough and lower oxygen levels and fever. I did gain most of it back but took 2 weeks! Praying for recovery for you.
Cindy
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Does anyone know if the study of Laser that Dr Hall was invited to participate in is still going on?
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Hi Rob, Are you in a trial? My doctor just talked to me about getting into a trial with NAC.
Cindy
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I have burning in my stomach often and I attribute it to gas pains from the Ofev. (Ofev gives me a lot of gas.) I try to not take the pills to close together( 10 to 12 hrs apart with protein) and I find keeping something in my stomach helps. I am not a Dr, this is just what has worked for me.
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Prayers for you and your dad as you go through this difficult time. Vishal you cared very well for your father and did the best you could with what you knew and your father knows that also. The love shows up in your comments here. This is a hard disease and I pray peace and comfort for you.
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Hi Mark, I was put on Ofev right away when diagnosed in July of 2019 with mild to moderate IPF. Because I am not 65 and not on Medicare but have a private insurance from work I was eligible for help. Insurance covered most and what insurance didn’t cover this assistance program did so I have not had to pay any copay yet. However I turn 65 in June so we will see what happens then. The specialty pharmacy arranged everything. Hopes this helps.
Cindy
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Hi Susan I see you on here often. I feel like I know you a little! Yes postnasal drip can cause phlegm and cough, of course I am not a Dr. just a retired nurse. Praying for strength and good health for you.
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Sorry typo age is 64.
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Hi James, Your case sounds just like mine. I was diagnosed with IPF in 2019. I am 54 only on 02 at night and if I want to exert myself . I cough first thing in the morning a lot clearing a large amount of phlegm. About 20 to 30 mins. Then I still cough throughout the day and move phlegm but not as much as in the morning . My Dr says I have a lot of inflammation in my lungs. I have not found a good solution to control the cough. Sometimes I wonder if it is related to postnasal drip.
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I think over time my abd pains decreased. I think diet is important. To much junk food sets off my stomach. Think of high fiber foods and proteins. Hope this helps you. Give it some time.
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I spoke to the company and she said Phase 3 will be starting soon. It is listed on the government trial site but not recruiting yet. Hopefully by the end of the year. I plan to try to get in this one.
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@steve-dragoo Hi Steve good to see you on here again. I have quietly followed you since I was diagnosed in 2019. You had a lot of interesting information. My symptom is coughing and I have noticed it has increased lately. Of the four meds you listed which one would you start with? Do you know which one had the biggest results on cough? I recognize that we are all different and what worked for you may not work for others. Also you still taking the Wei products?
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Hi Thom, Thank You for sharing your experience with OFEV. Glad to know the liver enzymes can come back down and that I may get to go back on OFEV. You have lessened my worries. I pray your CT scan comes back better/stable. Glad to hear you are feeling fine and I am glad you are here also! Happy New Year! Cindy
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Hi Charlene, Hope you had a great Christmas Holiday and Happy New Year. I see a Dr at U of M in Michigan. So I am not to far from you. Not sure what the Dr. is thinking yet. I am supposed to call when my rash clears. I really do not want to go off OFEV so hopefully I will get to go back on it.
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Hi Denny,
Just wanted to let you know I am starting the screening at U of M for 1690 trial. They set up 2 appointments for screening then a 3rd appointment to start the medication. Have you started the medication yet? If you have how is it going? Any issues I should know about?
Thanks,
Cindy Sears
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Jill,
I met with my Open Doors educator and he told me that just as OFEV slows the progression of fibrosis , it slows down the healing process. So when it seemed like the antibiotics were not working on my tooth infection, it was probably the slowed healing process. It took longer than what I considered usual for the pain to go away but it finally did. He said if you are going to have surgery they will usually take you off the OFEV for a few weeks prior to the procedure to allow for healing. I was not aware of this information so maybe it will help others who are not aware.
God Bless,
Cindy
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Hi Jill,
I am also having trouble with a tooth that has had a previous root canal. I am on antibiotics and was just starting to wonder if the antibiotic is working. I am on OFEV and was wondering if that was affecting things. I am not on oxygen at this time. No definite answer for you but you are not alone with this!
Cindy
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Hello Cindy from Three Rivers Michigan. I am not aware of any support groups here. I was diagnosed with IPF in June, no O2, started on OFEV about 3 weeks ago. I receive treatment at Cleveland Clinic but intend to switch to University of Mich soon. I went to Cleveland Clinic with a cough. I thought it was related to allergies and it escalated to this. My mother had Hypersensitivity Pneumonitis which is a sister disease to IPF, so I wanted to be thoroughly checked. This site has helped so much!!
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Hello, I was diagnosed with IPF in June after having a cough that would not go away. I am not on oxygen although my o2 drops to 89 with quick activity. I started OFEV 2 weeks ago. So far no side effects. The only issue I am having is eating at the right times to keep my meds 10-12 hrs apart. I am not sure how much food is enough to prevent side effects. I would like to have just a snack for breakfast but the instructions are for a full meal. What are others eating for breakfast?
My Doctor’s office at Cleveland Clinic and specialty pharmacy handled all the insurance issues for me. The pharmacy told me my co pay would be picked up by the drug company since I had commercial insurance (BCBS) instead of medicare. I did not ask for help so be sure and check with the specialty pharmacy regarding copays. Hope this information helps.
regards,
Cindy Sears