I was diagnosed with IPF two years ago at age 81. My mother had the very same symptoms but her disease was never named. She was diagnosed with “lung problems – possibly lupus” at age 82 and lived to be 90. I am absolutely convinced IPF can be genetic.

My weight dropped quite rapidly from 205 pre-diagnosis to 180 today, 2.5 years after my diagnosis. I had dropped to 176 but for the past few weeks, I’ve been drinking an 8 oz container of Ensure with lunch. I like the taste and Ensure has several flavors including butter pecan, my favorite, and of course, chocolate (dark & milk),… Read more

Sharon: I, too, have very painful cramps in my legs and feet, usually at night. They wake me up and force me to my feet for relief. Rubbing and standing on the cramped leg or foot helps a lot.

I hadn’t considered restless legs medication as a possible answer as Karen suggests, but for me, it definitely is not. I take 1.5 mg of Ropinirole… Read more

LIMITING – BURDENSOME – CHALLENGING – COMPROMISING

My oximeter is usually at 91-92 but I don’t feel a lot of anxiety, probably because I’m 83 and have several other serious problems including heart disease and severe spinal stenosis.  My VA pulmonologist said oxygen isn’t an option until my lung capacity drops to 88%. Right now it’s at 90%.

I do hear chest rales but not all the time. And… Read more

I was diagnosed with IPF 2 years ago and a month or 2 later I was taken to our local medical center with very high blood pressure. When they finally got my BP down, they determined that I had atrial fibrillation and that has been constant ever since. I was immediately put on Xarelto to protect me from clots, and haven’t had any emergencies… Read more

If you’re a US military vet, you can get it through the nearest VA Hospital pharmacy. If it’s not military-service-connected, there’s an $8.00 co-pay.

I was diagnosed with IPF two years ago (Jan 2020) and was informed about both Esbriet and Ofev during my first visit with a pulmonologist. I was told Ofev was not an option because I’m on a blood thinner (Xarelto) but Esbriet was recommended. I was given literature and after reading about the side effects I informed my pulmonologist on my… Read more

Dear Wendy, I have just returned from the X-ray department of our local military veterans’ medical clinic. This X-ray is to determine if the antibiotics I was given last week for pneumonia in my left lung have cleared the infection. I also have Familial Pulmonary Fibrosis diagnosed 2 years ago.

As fate would have it, an X-ray I had 2 weeks… Read more

Charlene, You’ve opened a topic that I’m finding difficult to deal with right now. My wife and I are both 83 and have shared household duties. However, the past few months have taken a toll on my physical strength and I see her gradually doing more as I do less, and I think that’s harder on me psychologically than it is on her physically. I… Read more

Addie: I was diagnosed with IPF two years ago and I’m also wondering about the end stages. I have requested an appointment with a pulmonologist and will update this if I learn much new that might be helpful.
Jerry

Hello All: I’ve been reading everything on this page and I’m astonished by the similarities between my symptoms and those of others here. I’m 83 and was diagnosed with IPF in January 2020. As my mother had exactly the same symptoms between age 80 and her death at age 90 of other causes, I’m quite certain my PF is genetic; a cause now recognized… Read more

Judy, I can relate to your situation. My wife and I are both 83. We were high school sweethearts in the 1950s but went separate ways. We both married others and raised families, and nearly eight years ago we reconnected. Our former spouses had died and we spent 18 months getting reacquainted, though clearly, we had held each other in… Read more

I’m with you, Lawrence, 110%. I was diagnosed 2 years ago and I declined the Esbriet option due to potential side effects. I have another condition that requires several meds and I didn’t want to cause compatibility complications. I’m not eligible for Ofev. But, like you, I’ve enjoyed a full and very active life. I am now 83 and living… Read more

I was diagnosed with IPF 2 years ago but have had shortness of breath for at least 5 or more years. I’ve also had PND for years which I believe to be primarily an allergy to a silver willow tree outside my front door. I first noticed the allergy very shortly after buying and moving into a single-family home in a retirement community. I had all… Read more

Thanks! I said “at least 91”. How far beyond will depend on a few variables. Actually, a lot of variables. 😉

Yes, Sylvio, I have read those diagnosed with IPF have 3 to 5 years as well. But my mother was diagnosed at 80 and lived to be 90. I was diagnosed at 81 so I plan to live to at least 91. I’ll let you know. 😉

No physician in the U.S. is likely to prescribe this before trials warrant an FDA approval.

Charlene – I also use a prescription nasal spray (Ipratropium .06%) that dries my throat as well as my sinuses, but I have noticed more throat clearing lately. I was on a .03% formula but it stopped working and my VA physician increased it to .06%. I was diagnosed with IPF in January 2020.

Charlene: I often have a glass of red wine with dinner. Also, every weekend since the pandemic confined us to quarters just about one year ago,  my wife and I play Scrabble to entertain ourselves and usually have a vodka tonic or highball, but never more than one. I was diagnosed with IPF in January 2020, but I have never been on a… Read more

Mark: I’ve was diagnosed with IPF about a year ago but I have no cough. I’ve also been on Gabapentin 600 mg three times daily for about ten years, which was prescribed to help relieve the pain of severe spinal stenosis. I take a number of other prescribed drugs for the stenosis and a heart condition, but I’ve never taken anything specifically… Read more

I didn’t know gabaoentin suppressed the cough associated with IPF.  I was diagnosed with IPF about a year ago and have never had a serious cough, dry or otherwise but I’ve been taking 600 mg of gabapentin t.i.d for at least 7 or 8 years and that could explain why. Thanks, Jerry

Mark – I just sent Charlene a note informing her I was considering discontinuing EGCG because of my continuing unexplained weight loss, but the article you referred to in the PFNews gives me second thoughts. I’d be interested in any comment(s) you might offer.

Charlene – Unexplained weight loss was one of the symptoms I have had due to the IPF and since I’ve been taking 500 mg of EGCG daily I’ve noticed a very slight increase in the rate of weight loss. Whether it’s attributable to the EGCG or not I don’t know but when I finish this bottle of EGCG I don’t plan to replace it and will monitor my… Read more

Charlene – Is your physician friend writing about IPF? If so, I’d be interested in knowing if he has spoken with any who have found IPF runs in their family. My mother was diagnosed with exactly the same symptoms I have and I know there are pulmonologists who believe IPF is hereditary. Actually, the genetic angle might generate some… Read more

I just researched Theraworx side effects and probably won’t use it because I’m on blood thinners and it has several rare but real blood-related adverse effects that can be severe if they’re experienced. More common possible side effects include Diarrhea, Nausea, Stomach Cramps, and Vomiting. Listed under common side effects also is… Read more

Thanks, Charlene! I might consider writing about my own PF experience at some point, perhaps using a character to hi-lite symptoms like shortness of breath, fatigue, etc. Kristan Higgins’ book sounds very interesting. Let us know when it’s available.

Those who like thrillers might enjoy reading “Lamb’s Blood”. I wrote it seven years ago and the paperback, at $10.95, has done very well on Amazon.com. If you search for my name on Amazon.com, you’ll pull up other books I’ve written as well. “Lamb’s Blood” got a great review in the Maine Sunday Telegram:

Maine Sunday Telegram (July 21,… Read more

 

Dave – I hope your weight remains steady. Weight loss is my greatest concern. I, too, have been on EGCG for about a week with no weight loss so far and no other adverse reactions either. Thanks for posting your progress. I’ll be interested in what you have to report a month from now..

That’s good news Ed Brownstein! My only concern has been weight loss. I started on 500 mg EGCG QD about a week ago and hope I can keep or increase mt weight. Thanks for posting your results.

Charlene: My mother had IPF and RLS, I have both as well, and my younger brother has RLS and probably has IPF also. I agree with those who suspect they are both genetic and hereditary. I’ve been taking Ropinirole 0.5 mg QD for several years and it has helped a lot. Ropinirole<span style=”color: #222222; font-family: Roboto, arial,… Read more

I’m sorry to hear about the fever and malaise that you’ve had, Charlene. I’ve not had any of the ailments you mention and hope you’ve shaken them by now.

Stay well!

Received word back from my pulmonologist today saying she thought the EGCG article in the NEJM, though brief and involving a small number of patients, shows promise. She said she could think of no reason why I shouldn’t start taking EGCG. I’m starting today and will watch and listen very carefully to how my body responds. If I notice any… Read more

I’m with you, Joe, as well as everyone else: let’s all hope some good comes out of the suffering this pandemic has caused around the globe. I might add some small measure of hope by noting that our pulmonologists are in this pandemic up to their face shields and if anyone is apt to recognize a helpful secret waiting to be discovered they will.… Read more

Hi Rene: For those of us with a heart condition, I forwarded the NEJM article re EGCG to my cardiologist and asked him if the 5% natural caffeine content in Nature’s Wellness Green Tea Extract 500 mg would be a problem and he advised me to try it ans let him know immediately if I have any reactions. I recognize that there are myriad types of… Read more

Michael: Thanks for mentioning your cardiologist’s concern about the caffeine. I also have a cardiac condition and am in A-Fib most of the time so your comment has prompted me to discuss the EGCG with my cardiologist before I start taking it. The one I’ve ordered is Nature’s Wellness Green Tea Extract 500 mg which has 5% natural caffeine.

I am… Read more

Penny – Thank you so much! Your response is very helpful. I’ve ordered a 4 month trial supply of 500 mg capsules and will take one-a-day. Please, let’s continue to exchange information and results. My biggest concern is weight loss. I’m already experiencing a slight, unexplained weight loss probably attributable to the IPF. I’m down from 198… Read more

Joe, have you been taking EGCG and, if so, what has your experience been: weight gain or weight loss?

This small study (link below) published in the NEJM sparked my interest until I learned that EGCG is recommended for weight loss. One of the IPF symptoms that I’m experiencing happens to be unexplained weight loss. I’d like to add EGCG to my regimen but the weight loss issue concerns me. If you have weight loss and have taken or take EGCG, has… Read more

<span style=”color: #303030; font-family: ‘open sans’; font-size: 13px;”>IPF patients prescribed Symbicort must be especially careful and particularly aware of social distancing if they absolutely must leave the safety of their homes. I read the Symbicort side effects online very carefully and learned the following are listed among “common”… Read more

In the past two days, three of the minuscule number who have been tested in Maine are positive. One is a staffer in a downtown Portland health clinic which has been closed. Did anyone see Rachel Maddow interview Dr. David Ho on MSNBC last night? He has received a $2.1 million grant to find a way to stop the virus from replicating in the… Read more

Unfortunately, there are two extremes: those who panic and hoard depriving others of protection, and those who do nothing to protect themselves or others because they don’t pay attention to the news. My wife and I keep a small supply of disposable facemasks on hand, but I’ve been unable to find any N95 masks in stores or online. I did find… Read more

My wife and I are now wearing nitril or latex gloves when we go out. We carry our own ballpoint pen but most credit card machines require use of a stylus that has been touched by everyone in the store using a credit card. Public pens and styli are filthy with germs as are the buttons we use to enter a PIN number. And don’t hesitate to… Read more

One of the Ofev side effects is “risk of bleeding” and, of course, Xarelto is a blood thinner, and Plavix keeps platelets from sticking together so bleeding episodes can be hard to control.

Michael – Thank you for the information regarding your experience with Esbriet. I’m sorry you’ve had such debilitating side effects. I was diagnosed with IPF in early January 2020. I’ve had symptoms for several years but they could be attributable to heart disease which I’ve had for many years. I’m very concerned about Esbriet’s side… Read more

I’m afraid we’re going to see a lot of ignorance on public display in the coming weeks; even more than we’ve been witnessing over the past three years. I think you should go to the security office the next time you visit that establishment and explain what happened so their chief-of-security can tell his security team members how they… Read more