[Manzurul Khan]

Hello Rumana,

I am so sorry to hear about your mom’s condition. I am also from Bangladesh and now live in the US since Jan, 1978. I am almost 70, was diagnosed almost 3 years ago and although my CT scans every 6 months show some progression, I am fortunate that I am very stable and work full time. I have no desire to quit anytime soon. I am on OFEV which I believe is helping me. Good news is OFEV is available in Bangladesh under a different name. It costs about a dollar (USD) a pill It has the same ingredients. Bangladesh has quality pharmas which are FDA approved. If you want the name of the medicine, I can get it to you.

Rumana is the name of my wife’s niece, quite a popular name. I have many BUET friends in the Melbourne area. If you want to chat with me on WhatsApp, I can provide my contact later. There are things I learned which have helped me immensely. Never underestimate the medicinal benefits of food, herbs, spices and extracts. I take EGCG, Vitamin D, Zinc. I also changed my diet completely. No more acidic food or inflammatory food for me. Mostly alkaline based diet. I quit coffee completely which was hard for me. I substituted rice with quinoa, lots of vegetable, salad, avocado, fish and lean meat. I believe all these are helping me. Above all, keeping a positive outlook toward life and being connected with our source have helped me calm down and get much needed sleep.

I wish the very best to you and your mom.

[Manzurul Khan]

The same company has applied to FDA for Tyvaso to be treated for IPF under a phase III trial called Teton 3. I am participating in it since December. The medicine is in liquid form and has be inhaled 4 times a day. I can’t tell if I have seen any benefits, but side effects are noticeable. I am tolerating it so far. Hope it helps.

 

[Manzurul Khan]

I was diagnosed 2 years ago (Oct 2020). Other than a dry cough in the morning, I have had no symptoms. I remain active phycially and take a brisk walk each day for about 45 minutes. I have been taking OFEV (100 mg twice a day) for the last 8 months. I was told I had 3-5 years to live. I am trying to enroll in a phase 3 trial with a doctor at Baylor College of Medicine. I am not afraid of dying but scared to be a burden on my family. I hope I die in my sleep but I will continue living like I do not have the invisible disease. I am 69 and work full time. When my time comes, I will go. I am going to travel overseas in December for a month to try to lighten my “bucket list.” Life is a gift and I want to enjoy it to the fullest. Thanks to everyone who shared their experiences. It gives me hope.

Best.

[Manzurul Khan]

I started on 100 mg Ofev pills yesterday, today is the 2nd day. I have not experienced anything unusual yet. I made sure I had a good breakfast, cottage cheese+ veggie sausage on whole wheat bread + tea. I had normal food for lunch and dinner. No side effects yet. I wanted to have a normal eating habit since I work full time and want to blend it in as seamlessly as possible. I drink lots of water which should help. Although I don’t have any visible symptoms yet, I developed a dry cough in the last 15 months since diagnosis mainly in the morning, but it’s mild and intermittent. Thanks to all who posted before. I gained a lot from others’ experiences and hope to be of value to others.

Best wishes.

Manzurul

[Manzurul Khan]

Lawrence, you inspire me to be even more active. I am 68 and try to be active throughout the day. I play tennis 1-2 times a week and walk 10k steps daily. I was diagnosed a year ago. I will know soon if my condition was worsened in which case I will start taking medicine. So far, I have resisted the idea due to side effects which are well known. I pray you and I both get to see the cure. Granted, if not IPF, another disease will bring an end of my life. No regrets here either as I got to experience the joys of life. Still working full time and more than 40 hours a week.

Best wishes.

[Manzurul Khan]

Kathryn,
I am so sorry for your loss. As humans, we can only do much and feel powerless after that. Please do not blame yourself. There will be a time for all of us to bid farewell to Earth. I just hope it’s in my sleep and relatively pain free.
God Bless.

[Manzurul Khan]

I also believe herbs can make a difference in your breathing ability. I called Wei Institute right after I was diagnosed and was about to try their product. But I could not justify the cost ($3000 for 3 month supply). I started running and taking EGCG extract, green tea and other herbs such as ginger, turmeric and cinnamon. My recent breathing test showed improvement over the last one I took 5 months ago. The only area which showed a slight decrease is diffusion. My doctor feels that is not a reliable indicator. I also have little or no cough. I plan to start playing tennis again as the weather is warming up here in the south. Can anyone explain what diffusion means in terms of lung functions?

[Manzurul Khan]

Hello James,

I live in Houston, TX and joined a group in Dallas area called PF Warriors. They hold monthly meetings and have great presenters. I attended the last 2 and got lots of new information on Oxygen therapy and other topics. Look them up on Google. I am also looking for a second opinion and someone with established authority in this field in my geographic area. I plan to visit a professor at Baylor College of Medicine but department chair, Dr. Ivan Rosas, is not seeing new patients. Anyone here has a referral? Thanks.

 

[Manzurul Khan]

Hi everyone,

I believe the 3-5 years estimate given by a pulmonologist is a disservice to most patients. When I was diagnosed on October, 2020 and told I had 3-5 left to live, it triggered a series of reactions inside me which were mostly harmful. Fortunately for me, I had a supportive family who refused to accept this and pointed to my overall health. Since then, I have done everyone in my power to feel better. I had my 2nd set of breathing tests and 6-minute walk test last week. My lung functions have become stable and moving in the direction. My 6-minute walk test results also improved from 600 meters to 660. I walk 60k-70k steps each week rain or shine, freezing or in humid Houston heat. I am staying away from medicine for now. All the posts here have been a source of inspiration and encouragement for me. My thoughts and prayers go out to all those who are facing acute conditions. I believe most of us will easily beat the 3-5 years prediction and far outlive 5, 10 or 15 years. I know I plan to and unwilling to surrender to this terrible disease.

[Manzurul Khan]

To Pete and all those who contribute,

I have gained so much from your shared experiences. I feel I belong to a community who are caring, selfless and pulling for one another. I am in early stages and the journey ahead will be long, I hope. And from what I have learned here, I will benefit in easing my burden. I want to quote the words of our national poet, Maya Angelou, “I can be changed by what happens to me but I refuse to be reduced by it.”.

Thanks, everyone.

[Manzurul Khan]

I am a 67 year old male and was diagnosed 4 months ago. I have resisted my doctor’s advice to start taking Ofev or Esbriet in recent weeks. He thinks I should choose one of the 2 to avoid an acute progression since it’s in early stages now. I plan to see another doctor at Baylor College of Medicine before I do that. I am worried about the side effects of both of these drugs. I made big dietary changes in recent months and focus on anti inflammatory products such as ginger, turmeric,  cinnamon, green tea and EGCG capsules. I avoid coffee, milk, tomatoes and red meat. I also work out at least 5 times a week. My oxygen level is normal (high 90s). This group has been a godsend for me. You have given me inspiration, hope and support I needed to be better informed. Thank you all.

[Manzurul Khan]

I read all your posts with interest since I am also dabbling with the idea of experimenting with Wei Labs products. I was diagnosed with early stage IPF almost by accident in late October during a routine physical. I thought I was healthy since I lead an active lifestyle with regular jogging, brisk walks and tennis. When I was refereed to my pulmonologist, he said I had another 3-5 years life expectancy. He gave me a bunch of tests, and ordered CT scan, 6 minute walk test, breathing test, barium X-Ray for acid-reflux, endoscopy and sleep apnea. All came negative except my CT scan which showed some spots at the peripheral wall near my lower abdomen. A hiatal hernia was also detected which I got rid of with rigorous exercise on a trampoline. He also suggested that I start with either Esbriet or Ofev. With my curious mind and natural gravitation toward holistic medicine, I came across Wei Lab. I talked to Ryan who was confident that my IPF could be removed in as little as 3 months with the early detection. I was close to signing up, but I could not justify the price ($1000/month). Instead I use anti-inflammation food e.g mixture of ginger, lemon and honey, turmeric powder and cinnamon powder. I also drink green tea and take EGCG capsule each day. Has it made a difference? I don’t know yet. I will take another breath test soon. I take no medicine (no Esbriet or Ofev yet) and feel healthy. I exercise each day even in near freezing temperature, sleep well and work full-time. Is my doctor right that I have 3-5 years to live? I will find out in 3-5 years or before. In the meantime, I am trying to set up a meeting with Prof. Ivan Rosas at Baylor College of Medicine. I maintain a positive outlook and grateful each day for having lived another day. I am 67 years old now. I draw strength from reading all the post here. It has given me hope and belief that IPF is not a death sentence in 3-5 years.

Thank y’all as they say here in Texas.

[Manzurul Khan]

I also feel exercise is the key to mainaining the lungs stable. I walk briskly 3-4 miles wach day. I was diagnosed in Oct, 2020 and now taking OFEV 150 mg twice a day. My O2 level is around 99 all day. I am being told by my doctor for transplant evaluation, but have declined each time. I will be 70 next month and will try to live out the remaining years without the thought of transplant. GLTA

[Manzurul Khan]

Hi Sally,

I am in the same clinical trial by United Therapeutics at week 28. The only side effects I feel are excessive coughing and some dizziness right after inhaling the medicne. I feel I can exercise more since I started the trial last December. The spiro numbers show little or no change. My O2 level is high at 99% with no lack of energy and little shortness of breath. That could be a cardiac issue. I am getting a nuclear stress test done next week.

[Manzurul Khan]

Hi Emily,

I am into the 3rd month and you are right that it saps all your energy especially in the morning. The coughing becomes violent and continuous. It gets better during the day and into the evening. I am on 200mg OFEV daily and not  sure if I want to increase to 300mg. My O2 saturation is in the high 90s but PFT keeps showing progressive decay in lung functions. It can’t tell what is going on inside my body. I have accepted the disease to be part of my remaining life. I have come to terms with IPF which was the hard part when I was diagnosed 3 years ago. I exercise to my limits, walking, mowing the lawn, taking the stairs. It isn’t easy but I feel this is the only way I will remain relatively stable.

Good luck to you.

[Manzurul Khan]

Pete,

Every individual reacts to a medicine differently. In my case, the coughing goes up quite a bit after inhaling the medicine. It lasts at least 30-45 minutes. It also caused my blood platelets to go down which worries me. On the postive side, I feel I can exercise more resulting in less fatigue. The primary target is to increase FVC, but in my case the number looks about the same (72.4 range). My O2 saturation is quite high (98-99 range) but my Spirometry has been a struggle. I can barely complete 3 measureable tests out of 8 allowed by the drugmaker. The trial continues for another 9 months and I will get a better picture about the efficacy. Good luck to you,

 

[Manzurul Khan]

John,

Thanks for sharing your jouney of 11 years and counting. Your story brings hope to those of us in despair and searching for an answer. Fibrogen has a Phase III trial ongoing. Are you in this trial? I am participitaing in another one called Teton 3 from United Therapeutics. There is also another Phase III trial from BI called Fibroneer. Any one of  them can likely extend mortality for us. Are you on supplemental O2? After almost 28 months since diagnosis, my O2 is in the 98% range but my FVC and DLCO have both declined. I am confused about the results as I don’t feel much noticable change.

Good luck to you and everyone else on the forum.

[Manzurul Khan]

I turned 69 last month and was diagnosed 2 years ago during a routine annual exam. I had no symptoms but have developed some since then e.g. coughing, fatigue. My doctor feels my Hiatal Hernia which causes acid reflux contributed to aspiration and eventual scarring around the periheries of my lungs. Lately, I have been seeing a pulmonologist at Baylor College of Medicine. He wants to put me on a Phase III trial medicine which is an inhaler. I am quite active walking 3 miles a day 7 days a week. I also play tennis occasionally. I have been active all my life. I am taking Ofev (100 mg twice a day) since January of this year. My O2 saturation is close to 100 and drops only slightly after a 6 minute walk test. My recent PFTs indicate declining capacity but I can’t explain it since I do not have shortness of breath.

My diet consists of high protein, low carb with lots of salad, whole wheat bread, low-fat cottage cheese, quinoa and fruits. I drink green tea and black tea and also take EGCG supplements. I am still working full time and will likely go part-time in 2-3 years. It really helps to read the experiences of others and makes me realize that we are all in this fight together.

GLTA

[Manzurul Khan]

I started OFEV in late January (2 100 mg capsules a day). After 30 days, I went to test my liver functions. Altought I had no GI issues, my liver enzymes shot by 50% in 30 days. I immediately cut down to 1 a day and will test again soon. I am concerned about the medicine damaging my liver. If the enzymes come down to a number within the range, I am thinking of taking 1 150mg a day. Anyone here doing that? I am also curious if my body weight and height has anything to do with it. I am 5’5″ and weigh 140 lbs.

[Manzurul Khan]

This is interesting that there might be a connection between statin drugs and IPF. I have a friend who is taking 10mg Crestor for 16 years and with no effects. My doctor prescribed 10mg Crestor 15 months ago but by then, my IPF was already detected. I was diagnosed in Oct 2020, I started OFEV (100mg) 2 weeks ago. I am having serious issues with sleep after starting OFEV, but no other side effects. My stomach appears to be tolerating it well.

I walk briskly about 6 km each day, no loss of energy or shortness of breath or lack of oxygen saturation. My recent 6 minute walk test yielded 630 feet about 30 more than last year. I am not sure what is going on inside my body. I scheduled a visit with Baylor College of Medicine in April. I had developed morning cough over the last 12 months, but OFEV seemed to have helped. I don’t cough through out the day. I have been an active and outdoor person all my life. Still play tennis once a week but energy level has gone down. That is to be expected. I am 68 now.

Thanks for sharing your experience.

[Manzurul Khan]

Howdy Jim Nox,

Sorry to hear your condition is now in an advanced stage. When were first diagnosed with this terrible disease which has no known cause or cure? You certainly have the right attitude in staying positive and sharing your thoughts on this board. I thank you for your uplifting words. I saw my doctor again yesterday. He ordered another CT scan and breathing test. I requested a referral to Baylor College of Medicine for a second opinion as you suggested. I had another X-Ray done last week. No change according to the radiologist but scan and PFT are better indicators. I am 68 now and will be happy to have another 10 years of quality life. If not, I will be quite satisfied with my time on Earth and be grateful for having lived the way I did and the freedom I enjoyed.

Live well!

[Manzurul Khan]

I live in the Houston area. Can you share the name of the Clinic and contact information? I don’t have any idea if my insurance will pay for the treatment. How much does it cost monthly? Does VA cover your expenses?
Thanks.

[Manzurul Khan]

I started taking EGCG (350 mg capsules) right after I was diagnosed in late October. I also drink green teat each day. I read the same research report and felt I could not lose anything by taking the extract. I also changed my diet completely with anti-inflammation items replacing anything that causes inflammation. I have not lost weight in 5 months but feel better. My condition is also stable to trending in the right direction. My most recent breathing test and 6-minute walk test also gave better results than in November. I take lot of herbs – ginger, cinnamon and turmeric. I don’t know exactly what might be helping me. I also exercise each day pushing my lung capacity as much as I can. I want to stay away from Esbriet or Ofev as long as I can. My doctor thinks I should start the med now to avoid an acute condition in 1-2 years.

[Manzurul Khan]

I can’t agree that staying away from the Internet is always a good thing. I picked up so much valuable information by deep diving on the Internet. When my doctor diagnosed me 5 months ago from an X-Ray and pronounced that I had 3-5 years to live, it was a debilitating feeling. I started my own research and after applying many of the ideas I picked up from Internet, I feel better. My condition is stable or even trending in the right direction. I have not started Esbriet or Ofev yet. My 6-minute walk test results and lung capacity have improved. I learn from this forum each week and also from PF Warriors group.
Best to everyone.