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Cindy Sears replied to the topic Strategies to Alleviate the "Winter Blues" in the forum Living with Pulmonary Fibrosis: 50+ 1 month ago
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…[Read more]
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Cindy Sears replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 1 week ago
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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Cindy Sears replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 1 week ago
Sorry typo age is 64.
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Cindy Sears replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 1 week ago
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 l…[Read more]
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Cindy Sears replied to the topic DEALING WITH OFEV side effects in the forum Living with Pulmonary Fibrosis: 50+ 4 months, 2 weeks ago
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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Cindy Sears started the topic PFTS and coughing in the forum Upcoming Medical Appointments: Q&As 4 months, 3 weeks ago
I have PFTs soon. Does anyone have any tips on how to not cough during the test? When I take a deep breath and they want you to hold it before you exhale, I start coughing and can’t hold it. Makes me wonder how accurate are my results. Any tips would be appreciated.
Cindy
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Cindy Sears replied to the topic Good News! PRM-151 Positive Trial results in the forum Clinical Trials 4 months, 3 weeks ago
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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Cindy Sears replied to the topic Excessive cough during sleeping time in the forum Join the Discussion: Welcome to all PF/IPF Patients 6 months, 1 week ago
@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…[Read more]
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Cindy Sears replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 1 year, 1 month ago
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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Cindy Sears replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 1 year, 2 months ago
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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Cindy Sears started the topic Side effects of OFEV in the forum Ofev (Nintedanib) 1 year, 2 months ago
Hello, I have been on OFEV for 6 months with minimal side effects. Then this month my liver enzyme (ALT) is high and then I got covered with hives. Has anyone else got hives or a rash from OFEV? Dr did not think liver enzymes were high enough to stop meds but then I got the rash and he said hold OFEV for now.
I am wondering if anyone has…[Read more]
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Cindy Sears posted a new activity comment 1 year, 3 months ago
I have a banana and glass of milk with my Ofev. That works well for me no GI issues. I do remember when I first started I had slight cramps but that has passed.
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Cindy Sears joined the group
Research and Development 1 year, 3 months ago
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Denny and
Cindy Sears are now friends 1 year, 4 months ago
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Cindy Sears replied to the topic Clinical studies of GLPG 1690 and BG00011 in the forum Clinical Trials 1 year, 5 months ago
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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Cindy Sears replied to the topic Dental Issues in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 7 months ago
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…[Read more]
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Cindy Sears replied to the topic Dental Issues in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 7 months ago
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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Cindy Sears replied to the topic Where do you live, receive care, and are you in a local support group? in the forum Polls & Quizzes 1 year, 7 months ago
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 t…[Read more]
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Cindy Sears replied to the topic Started Ofev…one week in now in the forum Ofev (Nintedanib) 1 year, 7 months ago
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 si…[Read more]
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Cindy Sears became a registered member 1 year, 8 months ago