Vince Stravino
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I am getting ready to begin antifibrotic meds. I have researched PERFENIDONE which is cheaper thru normal channels?. I deal with canadapharmacyonline.com. They list generic perfenidone made in India and available with a valid US prescription, but shipped from India.Call them for info. I have used meds from this company for 20+ years both generic(unavailable in USA but sold in Canada) and Brand names. I trust them. I expect to go on antifibrotic in next month and then I will first contact the drug makers for their
med if I qualify financially. That is first step. My friend qualified a few years ago with annual income of $75,000 with significant other medical expenses. I will also test the support services of my local pulmonologist, to hopefully guide me to the cheapest med plan. Good Luck !
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FYI- a prescription is required for anf reputable Canadian pharmacy. A prescription will not save your meds at the U S customs. They confiscate all meds when they do a random spot check.. You can appeal with facts but it does not help. I tried it. My Canadian pharmacy sent another batch to me at no extra cost when I showed them the FDA seizure form.
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When my FEV and DCLO dropped I panicked but then I had a course of pulmonary rehab and my physical and mental status both improved. I also got checked for sleep apnea and now sleep and awaken better. I felt better sharing and listening to others in the support groups(I am in four!) After my scare I also sought meds from my family doc for anxiety and depression which helped. I continued my retired life as always but I skip the hills and I move at my comfortable pace. Adjusting my schedule helped too. I save my energy for the truly important things in my life and I enjoy/lean on my friends to keep my mind busy. Pam, take heart and learn as much as you can about your condition. I felt better after a second opinion at a regional IPF/ILD center. Forget the dark prognosis that pops up when you Google IPF. That data is old.I zoom often with a friend in PF Warriors who has Rheum.Arthritis and IPF for NINE years !! My pulmonologist told me that having a secondary cause as you do (scleroderma,Rheumatoid Arthritis, or one of the many allergens,birds, etc.)often has a better outcome when the secondary autoimmune disease is treated. There are exciting treatments and drugs coming over the horizon! In my long medical lifetime I’ve seen awful prognoses disappear for polio, tuberculosis, HIV, and Covid. I make an effort to count my blessings. I also focus on living the fullest TODAY. Best wishes to you as we trudge the road to happy destiny together.
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I have had symptoms, and xray changes of IPF since 2016 but official dx made 2021 by local pulmonologist. I then saw Superstar professor at regional center who thinks ILD. I’m 87.5 years and coping decently with only nighttime 2 liters oxygen. I have only minimal restriction with stairs,hills, and exertion(no oxygen). I have a contributing cause maybe-asthma and allergies-which improves my prognosis compared to pure IPF.That means that I have been walking around with IPF or ILD for about 7 years and I am doing ok for my age. I zoom regularly with a buddy with IPF and Rheumatoid Arthritis for 9 years ! I felt a second opinion from the guru at a regional center was helpful. I also found that support groups locally and nationally, were helpful for my emotions and education about the disease. I try to live in the moment and savor each day rather than worry about the future.
In summary, Prognosis is usually quoted from old data before earlier diagnosis and treatment, antifibrotic meds which began in 2014, and today’s improved geriatric care in general.Plus- there are a lot of promising meds in the research pipeline.Good luck!
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FYI-Unclear if you mean that your DLCO dropped from 40% to 35% or if a total drop of that amount occurred.I had DLCO of 55% nine months ago with a repeat 2 months ago of 68% !
Lab error? I suspect all tests are variable but the trend and our symptoms and pulmonary function tests must be considered too. A Second opinion pulmonologist suggested to me that the tables for my age,weight, height, may have changed in the interim? Either way, I am more concerned how I feel but I am curious what the next DLCO will be. I try to focus on today and avoid worrying about “what if””….in the future.
I “train” for my next PFT by practicing the FEV(forced expiratory volume) during the day. and I have ordered a spirometer to hopefully build up my deep breathing and lung expansion but I confess that there are no clear studies that I read proving those benefits for PF patients.Best of Luck. -
OOPS !! My typo-lowest dose made in India but sold by above pharmacy is 200 MG. not my 100 mg. listed in the second sentence above so the math is correct.
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FYI- I am not on anti-fibrotic meds(yet) and I have PF one year. I have been buying meds from canadapharmacyonline.com for about 20 years. Only one shipment of my meds confiscated at the border by the FDA thugs but the pharmacy sent another shipment no charge.
They offer the generic Esbriet 90 tablets 200 mg. for $158 or 4 tabs would cost $632. Four 100 mg. tabs would be 800 mg. and equivalent to the highest dose of 801 mg. Bottom line: One months Esbriet generic 800 mg.for $632. Shipping usually $10. This pharmacy has generic Esbriet made in Canada for $1360 for one month too. Check with your Doc but 40-50% of all meds here are made overseas. I have never bought meds online from other foreign pharmacies but I trust my Canadian source. I still travel and found that many U.S. meds cost much less overseas and I’ll price Esbriet and Ofev this winter in Europe if my pulse ox permits travel. Good Luck !
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I have Interstitial Lung Disease-one of many variants of Pulmonary Fibrosis.My Flares are intense bronchitis/pneumonia, productive cough, fatigue, but I usually do not have significant muscle pain,fever,or neck pain. I have an old arthritic neck with aches but never with a flare.My flare lasts 3-4 weeks and the most effective treatment is cortical steroids.
I went for several years before my diagnosis was given, based on a HIGH RESOLUTION CT SCAN OF THE CHEST plus an abnormal pulmonary test and exertional shortness of breath. I found a second opinion helpful at a University Pulmonary Fibrosis Center to confirm the diagnosis and offer treatment ideas. Good luck on this journey. Join a support group if you haven’t already.
Vince S