New to IPFPosted by Pops on December 1, 2023 at 6:15 am
I was diagnosed with IPF on October 24,2023
On October 23rd I was admitted into the hospital by my Internist due to shortness of breath and dizziness while exercising. After 4 days in the hospital of intense testing by my Cardiologist and a Pulmonary Doctor assigned by the Hospital it was determined that my heart was very strong and healthy but I had IPF. I was sent home on oxygen therapy and a follow up appointment with the Pulmonologist a week later. At that appointment the Dr. informed me that although he didn’t have all of the test results he had enough to indicate a course of action. During that appointment I was given the 6 minute walk test with oxygen and scheduled a Pulmonary function Test inside a cylinder for the following week. Also at that appointment the Dr. prescribed Ofev and Tyvaso through a specialty pharmacy, Pulmonary Rehab at the hospital, and ordered a portable concentrator.
Fast forward 5 weeks, none of the above has taken place! Yesterday, out of sheer frustration i rattled some cages at the Dr.’s office. I spoke to the Medical Assistant and was told that Medicare did not approve any of the therapies. I asked her why I had not received any test results and why I wasn’t informed of anything. All i got was double talk. After pushing her very hard I got an appointment with the Dr. for next week.
Has anyone had similar experiences. I’m looking for guidance and support.
MemberDecember 5, 2023 at 2:37 pm
I don’t know how Medicare works as I’m not old enough yet to be on it, but seems to me there should be an appeal process for their denial of your doctor-recommended therapies. I’d suggest asking your doctor to submit an appeal to Medicare. I don’t know why they’d deny therapies that your doctor has recommended. My commercial insurance company (through my employer) denied my Ofev claim, but my pulmonologist appealed that denial and got it reversed. I’m now on Ofev. Five weeks of waiting seems ridiculous. You have to be your own advocate all the time, which sounds like you were when you pushed to get a follow-up appointment. All I can say is doctors are BUSY. A lot of people put off elective & non-elective health care during the height of the pandemic (2020-2021), and every doctor I see says they are still playing catch-up. Make a list of questions you want to ask your doctor during that appt. so you get your questions answered by a real person, not the internet. I see mine this week and have a long list of questions for him.
MemberDecember 7, 2023 at 1:12 pm
Terrig, Medicare procedures changed this year making things much more difficult. They deny most Doctor prescribed procedures, especially orthopedic and specialty meds, which unfortunately I am involved with both. After initial denial and second requests they will require unnecessary tests and numerous appointments before giving in. These changes have made very quietly.
MemberDecember 7, 2023 at 2:16 pm
It all sounds suspicious, from the initial diagnosis without a lung function test to the early treatment without a confirming CT scan. To qualify for supplemental oxygen, Medicare has minimum requirements that must be met. OFEV coverage by Medicare Plans is minimal with copays exceeding $2,500 per month. Find a new Doctor!
MemberDecember 7, 2023 at 5:17 pm
Did you have a CT scan in the hospital? That is usually required, as well as a PFT, to diagnose IPF! Keep asking questions & advocating for what you need to get a definitive diagnosis & whatever treatment your pulmonologist has ordered. I have not had any problems with Medicare approving tests that have been ordered.
MemberDecember 7, 2023 at 7:15 pm
My pulmonologist said I had pf with out any tests other then a PFT and suggested I go on one of two medication that have severe side affects. I am 81 and was diagnosed with sarcoidosis in my early 40s recently ct scans and X-rays have shown the sarcoidosis to be burnt out so PFT are not going to be normal but stable. I decided to go to a University hospital pulmonologist, she looked at my CT’s, X-rays and PFT’s and said I didn’t have PF, after two stints in the hospital, first time for abnormal ekg, second time for low O2 reading and unexpected weight gain I was diagnosed with pulmonary hypertension so now I’m on medication for the past two weeks that have improved my sob so I don’t have to depend on my Supplement O2. Go to university hospital doctors, EKG can be heart or PHT, weight gain can be water retention.
MemberDecember 7, 2023 at 7:38 pm
I have learned to advocate for myself. Most office staff just don’t have the urgency that I feel they should have. It’s so aggravating! We do need to learn patience because nothing about this is quick. Blessings to you as you learn to navigate this journey.
MemberDecember 7, 2023 at 8:06 pm
Can’t believe without having all your tests your doc prescribed a whole litany of things. I have been dealing with pf since 2014 and I would say more than half the pulmonologist’s I have seen are not to impressive. Medicare does have a procedure before they will ok a concentrator and oz , as someone posted above. call your doctors office back until you get some answers and probably should find another pulmonologist ! Don’t fall for their so busy ..seems like the cardiologist should say that and they don’t .
MemberDecember 7, 2023 at 9:06 pm
I was diagnosed with IPF in 2021 when I lived in Kentucky. My pulmonologist there ordered an hrct and I did the 6 minute walk and a PFT. The doctor prescribed oxygen at night at that time and oxygen as needed in the daytime. Medicare approved it all with no problems. Since then I have moved to Arkansas. I had to get new doctors here and had to get new oxygen equipment. My new pulmonologist in Texarkana ordered a bronchoscopy. I got my new oxygen equipment and was referred to UT Southwest in Dallas to be evaluated for a lung transplant. I’m still in that process.
I guess what I’m trying to get to is maybe your doctors staff isn’t providing Medicare with the test results needed to get you approved for that equipment. I have the regular medicare so I don’t know how those medicare advantage plans work. I think they have their own set of hoops you have to jump through! I am taking Ofev right now too. I’m going through the BI Cares patient assistance program. My pulmonologist office handles that for me.
I wish you the best on getting the care and equipment you need.
MemberDecember 9, 2023 at 9:29 am
I do not where you live, but if you can get to a Cleveland Clinic I would recommend it. I recently had an appointment and before I left atthe end of the I had ALL of the results of the tests, including CT scan, chest Xray , pulmonary tests (3), and multiple blood tests. At the end of the I met with the pulmonologist and reviewed all tests.
This is what I have been experiencing for 3 1/2 years. I choose to travel 120 miles to and from for this care.
Take charge of your care!!
MemberDecember 12, 2023 at 2:56 pm
Go to the Univ. Of Chicago or Mayo Clinic where they specialize in PF.
MemberDecember 30, 2023 at 1:53 pm
My bet is that Medicare denied the Ofev because your pulmonologist didn’t fulfill all their requirements for a diagnosis of IPF, likely requiring an HRCT with certain findings such as UIP pattern, honeycombing pattern, and such. Also, they might require some threshold results for your PFT tests. I agree that getting a second opinion is critical. You absolutely want to be sure of the right diagnosis; from everything I’ve read, it can be tricky even for a pulmonologist to diagnose properly. Some places require a multidisciplinary team (radiologist, pathologist, and not just one pulmonologist) to make the diagnosis.
MemberJanuary 2, 2024 at 2:54 pm
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.
MemberJanuary 4, 2024 at 8:16 pm
Hello Pops. The only person to be your advocate is yourself.
Esbriet and Ofev are specific for Idiopathic PF. I don’t know what your diagnosis was.
My pulmonologist ran a good half dozen blood tests to rule out other causes. I also took the complete pulmonary function test, had a chest X-ray, and an HRCT. There was no question about the diagnosis.
I live in a small southern town. I did not travel to faraway places.
Go to another doctor. Tell them you are very sick, get a referral if needed. Get O2 treatment soon. Talk about the meds. There are funds available if you qualify.
I am a single, 80 year old woman. Don’t have a care taker. If I don’t take care of myself, I won’t last as long.
MemberJanuary 9, 2024 at 2:22 pm
Pops were you able to get the oxygen you needed? That was the most challenging part of my treatment because of Medicare requirements you be seen in person to get a prescription. I have tried Ofev and discontinued it because of harsh side affects. I have Hypersensitive Pnuemonitis diagnosed by biopsy but I have been treated for ILD since 2015. My KU Pulmonologist and team are wonderful. Keep asking for help. I am using Cell Cept, Prednisone 10-20 mg, and Azithromycin 3 x a week. Take good care. Paula
MemberJanuary 9, 2024 at 2:44 pm
6 years ago I personally solicited a pulmonary assessment with Mayo and was ran through the whole gamut of CT Scans and pft testing.My insurance,Tricare allows for self referral and I have a family history of Pulmonary deaths.I was not symptomatic and still only have limitations when running or carrying items upstairs.The diagnosis was lung scarring and the pattern suggested IPF.
I have had an Annual assessment at Mayo and last year at National Jewish Health in Denver and yes the Ipf is always confirmed but fortunately slow moving so far.I briefly tried OFEV which was covered by my carrier,express scripts.My only disillusionment with all the medical processes was the admin staff at Mayo let my prescription languish for weeks before I got them on track.I only took OFEV for a short period and didn’t like the side effects and my pulmonologist was not encouraging of the drug.
Although it may sound crass and forgive me if I offend but several types of diseases like IPF are in the classification of Diagnose and Adios.I personally hope to move the needle by volunteering for a clinical study.I may even be given a placebo and if I receive the study drug and show improvement the drug will not be dispensed to me as it will be lacking FDA approval.Maybe some progress for the next generation.
MemberJanuary 9, 2024 at 2:50 pm
This not an easy process to navigate. You need to be your own advocate. Specialty pharmacies are not going to authorize the OFEV without a true diagnosis via either a high resolution CT plus or minus lung biopsies. Then a script from your pulmonologist with the diagnosis. Once you are in a lung transplant program, the Dr’s have been awesome.
My question for you is, where do you live? This is for me. Tyvasco is only in phase 3 of a study here in the US and not prescribed yet. I would love to get it prescribed. I was waiting to go into this study.
My prayer and best to you.
MemberJanuary 9, 2024 at 3:01 pm
I’ve been where you are, over a number of years though. I started with a diagnosis of ILD from my PCP, progressed to a diagnosis of IPF from my Pulmonologist, eventually added PAH from my Cardiologist. I am on OFEV (prescribed by my Pulmonologist) and Tyvaso (prescribed by my Cardiologist). I have Humana Medicare Advantage versus Original Medicare (something which I am very pleased with and happy about). Working with my doctors my overall copay expense has been fairly minimal.
OFEV is very expensive … about $8K per month without insurance. I have been fortunate enough to receive financial assistance for my copays and pay $0 out of pocket. For Tyvaso I am on a plan where I receive the medication for 0 from the manufacturer.
Bottom line here, as I see it, you were diagnosed with multiple disorders rather quickly, little testing was completed to support the diagnoses, and you were prescribed some very expensive medications as well. That’s enough to send off red flags for the insurers.
My recommendation is focus on the IPF, work with your PCP and your Pulmonologist to get the diagnosis supported so you can get on the OFEV. Once that has been accomplished focus on the Cardiologist. You may be required to undergo a Heart Catheterization in the process to get the PAH diagnosis. That would support the need for Tyvaso. I’ve been on Tyvaso for a year now and it has definitely been helpful for me.
I am new on this forum and not yet sure how it all works, but if you have any questions about my experiences feel free to ask.
MemberJanuary 9, 2024 at 5:14 pm
I have been on ofev now for four years. There are assistant programs for the cost. Ask your specialty pharmacy for referrals. Also BI Cares (an assistant program from the manufacturer of ofev) has assistance. If you qualify your ofev could be free. Mine has been free for two years now. You have to apply every year for any program.
As far as your Dr, I am a retired nurse and always recommend a second opinion. If you are not comfortable with how your Dr or the office is doing things, you may want to consider another Dr
BI Cares (855) 297-5906
Hope this helps and you can get help!!
MemberJanuary 10, 2024 at 5:49 pm
I’m so sorry you’ve had so much trouble with your doctors. Fortunately I was in a study at Vanderbilt University , after I lost three siblings to IPF . all died prior to 2014 , the year ofev was FDA approved. In Oct of 2022 I went in for my routine family study testing, this was for research only. I had participated since 2009. Lost two brothers , one 58 , the other 59, and a sister 68 to IPF. I am now 67 years old , officially diagnosed in 2/23 . If I hadn’t been in the research group , I doubt my IPF would have been found so early. But as the others mentioned you do have to be your own advocate . After Vanderbilt found evidence on a CT scan of minimal scarring on my right lung , it took me until February of 2023 to get in to see a dr. My doctor worked diligently to get all the test lined out , lung function and blood work .. it was a nightmare with the insurance company. Even with my family history. If your current doctor is not working with you , to get what you need .. find a new dr that will. Vanderbilt has been studying this disease for a very long time .. they know what to do . I don’t know where you live , but as another IPF patient suggested .. go somewhere that knows the disease and what it takes to make the diagnosis for you to get the help you need. I’m grateful . I’ve only been on ofev since June of 2023 .. so it took 4 months after my diagnosis to get approval .. it’ terrible. I’ve had very little side effects and grateful it can possibly slow down the scarring. Good Luck Pops ..
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