Jacki Baum
Forum Replies Created
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I was diagnosed with IPF in April, 2017 at Northwestern in Chicago and began OFEV in February. 2018, 150 mg twice daily. I live in SC so my Drs in Chicago recommended Drs at MUSC in Charleston and I have been seeing them every 3 month since 2018. OFEV reduced to 100mg twice daily because of side effects. MUSC pharmacy supplies my OFEV, my drug plan pays the majority of the cost, the MUSC pharmacy finds foundations that will pay the copay so I pay nothing for OFEV.
Having said all that, I have been off OFEV since late October when the side effects were so severe I ended up in the hospital. I think over years was too much for my system to handle. I am not on oxygen and I don’t have a cough, still play golf and am pretty active, although the bout in October took a toll on me physically. One more thing, my father had PF, as do my brother and sister. My case is the worst, my father did not die from PF, he had cancer. My Drs think I have the slow developing disease, but I do the PFTs and 6 minute walk every 3 months to monitor the disease, and it is progressing.
I have not had any issues with Medicare paying for any of the tests or the frequency of the tests. I highly recommend going to a teaching hospital, Cleveland Clinic or Mayo Clinic. Northwestern in Chicago is awesome and I cannot say enough about MUSC in Charleston. There are excellent Pulmonologist, keep fighting, don’t give up.
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I was diagnosed with IPF in April, 2017 and started OFEV in February, 2018. 150mg twice a day for 2 years when side effects became difficult to deal with so I went down to 100mg twice a day. I had hip replacement surgery in October 2022, followed by knee replacement surgery in June, 2023. I was able to handle OFEV until 5 months ago when I was nauseous and had diarrhea that I could control with medication, but I had no quality of life. I could not eat, and lost 15 pounds and ended up in the hospital. During my hospital stay I did not take OFEV, and felt much better when I came home. I resumed OFEV and ended up back where I was, nauseous and unable to eat. My doctors took me off OFEV in September and I have been off ever since. When I stopped taking it I felt like myself again in 48 hours. I am now taking 600mg of Teavigo daily, it is found in green tea. Look it up, early research is interesting. It was suggested to me by a pulmonologist I have a great deal of respect for. I don’t think I will be able to tolerate OFEV again. But I was on it for over 5 years, and my disease progression was minimal. I am not coughing, not on oxygen and I still play golf and my life style has not changed much.
My father had PF, my brother has a mild case as does my older sister. Does it run in families, I don’t have a sold answer to that but I do know it does in mine. I will see my Dr at the end of January, and discuss all my next options. I see Drs every 3 months for PFTs and 6 minute walk.
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I was diagnosed with IPF in April, 2017 and began taking OFEV several months later, I started on 150mg twice daily, but after 6 month, the side effects were severe enough that the doctors agreed to reduce the dose to 100mg/twice daily. I have been doing well, minor side effects, and my disease has not progressed. My PFT and 6 minute walk remain consistent, I get tested every 3 months. I walk, play golf and do a lot of volunteer work. I would encourage anyone to try OFEV, if 150mg doesn’t work, try 100mg. This is a tough disease, and we all have to decide what is best for us.
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Jacki Baum
MemberJanuary 28, 2021 at 3:43 pm in reply to: Ofev Users can Safely take Ofev on a Long Term BasisI was diagnosed in 2017 and began taking Ofev 150 twice daily on the advice of my Doctors. They suggested Ofev since I live in the South and spend a lot of time outside, playing golf, walking, etc. I experienced side effects of diarrhea and nausea that were just short of severe. My dose was reduced to 100 twice a day and although I still experience diarrhea and some nausea it is not daily and controlled with medication. My PFTs remain close to normal, and my 6 minute walk is above average. I truly believe that Ofev has slowed the progression of my IPF. I still play golf 3 days a week and do volunteer work that keeps me busy the rest of the week. For me the side effects are controlled by diet, nausea medication and Imodium. I have a great team of Doctors who have helped me navigate through this disease.
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Jacki Baum
MemberDecember 31, 2019 at 2:54 pm in reply to: Phase 3 Trial Shows Ofev Reduces Lung Function Decline In Patients With Fibrotic Lung DiseasesI was diagnosed with IPF in May, 2017 and began taking OFEV in February of 2018, 150 twice a day. Took it for almost a year, but my dosage was reduced to 100 because of the side effects. Now my side effects are minimal and I can deal with them. My PFTs are normal, and I am not on oxygen. I try to walk 2 miles 4 times a week and I still play golf 2-3 times a week. I cannot go up steep hills without getting out of breath, so I know I am not as strong as I used to be, but I keep pushing myself. My Dr said it will not hurt my lungs to push, but if my chest does hurt to too much I stop when it gets too much. I believe OFEV has been working for me. I do have side effects I do not like, loss of hair, loss of appetite and lost weight, but I am grateful for what I have. We are all on this journey together and all in different stages.
I wish y’all Peace and Blessings in the New Year!Jacki
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Hey, I use Healthwell Foundation to help pay for my Ofev. I live in Aiken, South Carolina and my Drs are at MUSC in Charleston. The cost of Ofev is $10, 583.44 a month and my drug plan pays $10,054.27. Healthwell pays the remaining $529.17. I applied in December, 2018 for this year, I have used this foundation for 2 1/2 years. I have a grant for $9,000 which more than covers the difference. They do ask for financial information, there is a cap on your income. However, it was my income, not our joint income which helps.
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Hey @marianne, I get a grant from Healthwell that covers the cost of my copay. Perhaps you could apply to them. If you want, I can send you the information. You have to give them your monthly income, just yours, if it is too much, you will not qualify. There is financial help out there.
jacki
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Hey Denny, I was going through the pre-testing for the trial and the release paperwork they sent me stated the side effects of headache and cough, so I asked my Dr and he confirmed what I had read. Now having said that, all my Drs in Charleston are very big on this study.
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Hey @marianne , I am going back to the Speciality Pharmacy for your OFEV. I use the CVS Speciality Pharmacy and they send it to a local CVS at Target and I pick it up there, it is very convenient. My insurance pays most of the cost and I got a grant that covers the rest of the cost, so I am fortunate. I do not have to pay for this drug, the cost goes up every year.
I have Humana for prescription drugs and they also have a speciality pharmacy that will send the drug to you, the problem with shipping it is you have to be home to receive the shipment. If you have it left at the door the cost is NOT covered it is lost or delivered to the wrong house.
Hope this helps!
Jacki
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Good Morning, I know they are doing the GLPG 1690 at Northwestern in Chicago and MUSC in Charleston, SC and are looking for volunteers at both sites. I was contacted by both sites and asked to join the study. I can assume there are others around the country. There are side effects with this drug, cough and headaches are the most common according to my Doctors. Hope this helps.
Jacki
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Good morning, I live in SC and have been on OFEV for over a year now, started off on 150 twice daily and then my Drs lowered my dosage to 100 twice daily due to side effects. I got assistance with the cost of the drug through Open Doors, they put me in touch with two foundations that give grants to folks who need assistance with drug costs. Mt drug plan pays $8,645.00 a month and the grant I received pays the rest, so I pay nothing for the drug. To apply I just had to give them my monthly income to see if I qualified. You can make too much monthly to qualify. I definitely would contact Open Doors
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Well I saw my Gastroenterologist yesterday and all is good, no bleeding in my stomach or intestines so I am back on OFEV. They have no idea what happened, could be one of 50 things, but I am just relieved things are normal, or at least my new normal! Been doing well, New Years Resolution was to walk at least 2 miles at least 3 times a week, and so far have been meeting my goal. I feel I have to push myself and keep my lungs working. Go to see my Pulmonary Drs first week in February and am hoping for no change, will let y’all know what happens.
Everyone please stay safe and for you in the cold North, stay warm!
Hugs,
Jacki
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Good morning, I have not been on this site for a while. I had a new OFEV issue on Sunday. I experienced a constant pain in my stomach around 11:00 am and it got progressively worse as the day wore on, until the pain got so intense I contemplated going to the ER. I took antacids that did not seem to work. We did not go to the ER, it was getting late in the day and my husband cannot drive at night. So some reason, I felt the need to walk, so I walked around the house for about 15 minutes and the pain gradually went away. My Pulmonologist has taken me off OFEV till I can be seen by my Gastrointestinal Dr to see what is going on. I was told one side effect is abdominal pain and a perforated stomach, so I guess I need to get it checked out. I take 200 mg a day and have all the side effects but none really severe. I also have reflux, but very mild and is controlled by medication and diet. Has anyone else experienced this side effect? I have been on OFEV since 2017, started with 300, then reduced to 200.
Hugs,
Jacki Baum
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Hey Charlene, thank you for all you do on this site. When I cannot sleep, waking up at 3:00 or 3:30, I basically do nothing. I try to turn off my thoughts, think of a black wall, and sometimes that works. I am a Guardian ad Litem and if there is something going on in one of my cases that will keep me awake, I worry about y kids or sometimes I am just mad at the system in general. I have gotten up to read, and that does help me get sleepy, but mostly I just toss and turn listening to the grandfather clock chime. I do eventually fall asleep. The good news is after a few nights like those I am so tired I sleep through the night!!
Again thank you for being such a good listener and responding to everyone! It is amazing how we are all in a similar but different place in this crazy disease.
Hugs, and Blessings in the New Year!
Jacki
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I have posted before but not for a while. I was diagnosed in April, 2016 and began OFEV in February, 2017. My disease has not progressed, all my tests are normal, except for the CT scan. I am not on oxygen and do not cough, so I appear healthy to all my friends. Some even ask me if I still have IPF! There are two other gentlemen who live in our community who have IPF and are on oxygen and in wheelchairs and I guess I confuse folks. I live in a small town called Aiken in South Carolina. My doctors are at UMC in Charleston, about 2 hours away. I started on 150 mg twice daily, but because of side effects we reduced it to 100 mg twice a day, working better.
i would like to participate in a support group, we did have a small one through church, but some got too sick to participate and now I just visit with another woman at least once a week. I exercise, try to walk 2 miles every other day and play golf 3 times a week, but it is hilly here and going up and down hills can be hard some days. And I have allergies, so I never know if I am out of breath because of IPF or I am just stuffy from allergies. I do have mild acid reflux, but it is controlled by diet and medication and we do have a bed I can elevate. I know I am lucky the disease is progressing slowly, but I do need to push myself to continue to exercise. I do not sleep well, no trouble falling asleep, but do have trouble staying asleep, but this is not new, been going on for years, just the way I am wired, I guess.
Happy New Year!
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I too suffer from acid reflux, have for years but is much worse since my diagnosis of IPF. I now get violently ill at times. I take 40mg of perscription Omeprazole before I go to bed at the direction of my Dr. Sometimes we eat later and then I may have a problem. We have an elevated bed and it does help. Of course, like the rest of you, I worry that all that acid is hurting my lungs. Had an endoscopy and colonoscopy a few months ago since I was having acid reflux and diarrhea. All was normal, so I was thankful. I am not on oxygen and take 100mg of OFEV twice daily. Was on 150 but the side effects were too debilitating so my Drs lowered the dosage. Told me it was not as effective but the quality of life was more important than longevity. My choice.
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Thanks, Zoe. Glad you found out what might be going on with your mom. Because I have been taking OFEV I have my blood tested every 3 months and so far all were normal. But having said that, I have had itchy skin for a long time, especially bad in winter when I lived in Chicago. Never could get an answer until now. The Curel does work for me and if her itchy skin continues this may help her as well. This disease is so difficult for many reasons, and all these side issues make it complicated for many of us. That is why this forum is helpful and let’s me know I am not on this journey alone. I am a hugger so I always sign off
Hugs
Jacki
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I have have had itchy skin for a long time, befor my diagnosis, and I live in South Carolina where it is hot and humid for long periods of time. My dermatologist recommended a product that has helped so much. It is called Curel, Hydratherapy wet skin moisturizer. You apply it after your shower on wet skin and pat dry. It works!! I get it on Amazon, I could not find it in the store, but I really did not try very hard. I am not on oxygen, I am in early diagnosis had been on OFEV for about 9 months now. Holding my own, going to see my Drs on Monday and will take the walking test as well as a PFT so hoping for good results. Hope this information helps. Great news Steve, keep on working on your recovery, you are blessed.
Jacki
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Jacki Baum
MemberSeptember 25, 2018 at 8:35 am in reply to: Getting the Flu Shot: What is Your Doctor’s Opinion?My doctors urged me to get both the flu and pneumonia shots, and I did get the pneumonia shot back in 2007, before my IPF diagnoses and I got my flu shot 2 weeks ago. I also got the 2 shot shingles shot, on advice of my doctors. I want to protect myself against any and everything I can. I live in South Carolina and right now there is something going around, cold, flu, cough, fever, etc. washing hands like crazy!!!
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I had diarrhea with OFEV, was on 150 twice daily and basically was unable to leave the house until early afternoonl, I did take Imodium, that caused constipation and so I had another issue. My dr said Imodium is strong medicine, take 1/2 pill, that worked. But the diarrhea continued. My Drs took me off OFEV for 4 days, and lowered my dosage to 100 twice daily, and I feel like I got my life back. I am playing golf, shopping with friends, going out to dinner, it is awesome. I will see my Drs in late October and they are talking about upping my dosage to 150 again. They said I may tolerate the higher dosage after this break. I do not know if a lower dosage is as effective as a higher dose, and this has me concerned.
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Hey Dick, I am over 65 so I have a perscription drug insurance, but the support group called Open Doors that my doctors put me in touch with worked with me. My insurance covered most of the cost but I was given the name of two foundations that help people off set the cost of drugs, the one I used is Health Well Foundation, phone # 800-675-8416. The other foundation is PSI Foundation phone #800-366-7741. Open Doors, a Patient Support Program for people taking OFEV is a great support. Their number is 866-673-6366. Hopes this helps
Jacki
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I was diagnosed with IPF in May, 2017 and began takin OFEV in February of 2018, and had only mild side effects for the first 2 months. Then I developed nausea, diarrhea and at times secere vomiting. I took pills for the nausea and diarrhea which helped, but then I was constipated so i had to deal with that. I was pretty much housebound for almost 2 months, and i am an outdoors person, golf, pool, walking, etc. My doctors were working with me but nothing seemed to work. So on August 10, My dosage was reduced from 150mg twice a day, to 100mg twice a day. I now am back to normal, no side effects, and feel good. In time they will up my dosage but for now I am good!! Back to golf and walking, I feel like i got my life back. I was perscribed OFEV because I live in South Carolina and am in the sun a lot. I am over 65 and have a perscription drug plan, my first perscription put me in catastrophic so they pay $8,650 and I applied to a foundation for assistance and they gave me a grant that pays the rest. I learned about this foundation through the Open Doors, I was not sure i would qualify, we are quite comfortable financially. I know I will have to reapply again next year. I am in the early stages, my PFT are “normal”, I do not cough, I can walk up a hill, but I know this will not last. My father died from PF, but they call mine IPF, as far as I know, no one else in the family has it. I know I jumped all over the place writing this forgive the rambling.