Thom
Forum Replies Created
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Oh its terrible! I’m in ofev about 2 years.
The place I get it from says to think of B R A T.
BANANAS, APPLESAUCE, RICE, TOAST.
I’m not a rice eater, but the other three do work for me.
Hang in there! The ofev is working for me. I just have to deal with side effects
Good luck.
Thom
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My pulmonologist had no idea why my teeth and nothing else hurt. Neither did my dentist. So pulmonologist suggested a CT scan. Meanwhile i went to my GP. As soon as i told him why i was there he said sinus infection. He examined me, again he said sinus infection. Gave me an antibiotic for 10 days. I felt great, pain was gone. Meanwhile pulmonologist said results of scan said sinus infection. He said i need to go to ENT dr. That will occur next week.
GP said the major cause of pain in teeth is sinus
Infection.
Hopefully my answers come next week
Thom -
Hello everyone. Its been a while since ive checked in. I hope everyone is doing alright.
I am doing very well, all things considered. Dealing with Ofev is tough business. Diarrhea being the worst, and lately vomiting. So it is! Now something new, so i thought I’d see if i was alone with this new development.
My teeth are healthy, i visit a dentist every 3-4 months.
Recently ive been getting pain along the gum line. It moves from lower jaw to top jaw. I have a tooth i chipped as a child. I never hurts, now suddenly it does.
I see i am not alone, at least two others experience the same. They were posted about a year ago. To those two, are you still experiencing pain. Are there others that have this?
Thanks.
Thom
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Yes I think its Lorraine! Thanks.
My wife now has both eyes done, one week apart. She can see just fine. She noticed wrinkles, brown spots, windows need washing. I’ll stop there!
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If we dont laugh, we will cry. Laughter is the best medicine.
I figured out what I did. I do recall replying to you, it was quite long too. My typical getting carried away with writing. The problem is I didnt write the reply here. Rather I sent email, it probably bounced back and went to SPAM. I suppose its lost in space now and a few years from now it may bounce back and have scientists wondering if a strange alien is sending earth a message.
That’s it for now. I have to be out the door at 5 AM to bring my wife to a hospital to get her cataracts removed. Not much fun for either of us.
When I can gather together more words I’ll be sure to put them up here.
Thom
PS. One thing I recall in the lost reply. I’m wondering how the young lady from Staten Island (who’s name I forgot) is doing. If you read this I’d like to hear from you. I think you mentioned you had worked at the WTC.
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Hello Charlene. Dont laugh, I dont remember if I replied to you?
Thom
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Hmm, feel as though I missed something here, buy not sure what it was.
HELP! Somebody fill me in. The forum is dying? What’s that about!
I’ve had my hands full that tropical storm that I can neither spell or pronounce hit hard around here. No power, phone service. After 8 days it finally returned. No AC was the worst in 95⁰ weather.
Now for the good news. I had a pft last week that turned out wonderful. Oxygen level is up to +-94. The Ofev is doing what is supposed to. About 2 months ago I decided to eat less and move around as much as I can. The humidity is brutal for breathing, but I’m succeeding. I’ll start Pulmonary rehab next week. They closed due to the virus. I’ve lost about 35 lbs, and went from a 42 plus waist to a 38 minus. It’s made a big difference for the double hernia, 3 compressed disks.
I simply not eating when I’m full! When the gas gauge says full, I cant put anymore in my tank.
I’ll keep e everyone up to date.
Thom
PS… I cant remember your name. You live on Staten Island and worked at WTC.
How are you doing?
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BOEHRINGER INGLEHIEM has their main office and some laboratories located where I live, Offices in Danbury and Ridgefield, CT
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Hi there Cheryl.
You’re going to be fine! Just takes getting use to, that’s all. I’m probably 18 months. I have my times of diarrhea, vomiting occasionally, mostly mucus. The hair loss dont bother me. I’d love to go swimming but just about all the hair I want is gone. LOL. It didnt affect the nose or ears though! I still have that!! But it’s fine with me. I occasionally skip the ofev maybe 1 capsule a week so I can regenerate.
You’re going to be fine. There are many people here to help.
Be well.
Thom La Barbera. CT
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@travelingnana
Hello Libby. I’ve been on 100 mg for about 15 months. Not keeping track.
When I was first diagnosed, I realized the dr I had was an idiot. I dropped him and went to Yale in New Haven CT. The dr I had there was from india, a pulmonologist. She prescribed ofev, I told her no way could I afford it. I mentioned I read it’s available from india . She told me her mom lives in US and she ordered a sample, the daughter sent it to the lab at Yale to make sure it was the same. Apparently it was.
However with some searching I was in contact with a place called Accredo Pharmacy. For reasons I dont know of, they send it to me monthly at about $5.00 per month. I advise either calling them, or Boehringer Inglehiem located about 2 miles from me in Danbury, CT. It’s the HQ.
Good luck
Thom
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OFEV SIDE EFFECTS AND ME
I’ve been on the stuff for almost 18 months. Who’s keeping track!
Its brutal to me. To say the least. Rash on my arm, red itchy ears with infection that comes and goes. A little pain, but I’ve adapted to it. I was told at Yale I had cirrhosis. but evidently my liver is going back to normal. They told me to stop taking all supplements PERIOD. Dont take anything that is not FDA approved. I was told most claims are false, they were speeding up cirrhosis due to the Ofev. Seems the doctors may have been right in my case. I feel better, diarrhea has stabilized. Admittedly I go back and forth with the diarrhea. Its difficult to understand how it works. Constipation to diarrhea. I try to not stray too far from toilets. The gas. AKA, flatulence is horrible. God help my poor wife !! But we both seem to get a good laugh
After 12 months I had a CT Scan on my lungs. Pulmonologist said apparently the Ofev had slowed down the progression. When he listens to my lungs he said the “broken glass” sound had not changed. I imagine that’s good. . . It’s not worse !
I’ve lost about 12 lbs, I can afford to lose more. I find myself very tired, but I do have other things going on. Two compressed discs in lower spine, and double hernia. Which I’m now reading can be caused from Ofev. I’ve spoken to 3 surgeons about hernia. Because I’d have to be connected to ventilator no one will touch me. Frankly after hearing about ventilators with Covid, now I understand why. Both have told me I’d probably be connected forever. Soon I’m seeing yet another surgeon hoping I can find a dr that will use a local aesthetic.
As I said. The good news in all this unexpected illness is that apparently the Ofev is doing what its supposed to do.
Good luck to all.
Thom, CT
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Sorry. I should have mentioned. I live in Connecticut, USA
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my doc gave the 150 mg to another patient.. the person was thrilled. He had met while waiting for script to come through
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TO ALL
For those in need of OFEV.
Try calling direct.
OPENDOORS
1-866-673-6366
1-866-OPENDOOR
Its Boehringer Inglehiem patient support for information and resources.
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Hey there Randy.
Dont lose hope!! There are other sources that help with medicines. Look here on line and you will find several. Not for nothing but I’d look up Boehringer Inglehiem Danbury. CT and email them you have nothing to lose and everything to gain. About 2 months ago they called me, asked a few questions about ofev. They also asked me what I’m paying for it. I told them my insurance covered it. It’s pretty late now but tomorrow I’ll see if I can find an email address for them. I’ll also phone a friend of mine. Shes a scientist at the place. Perhaps she can direct you to someone that can help.
Funny thing. About 30 years ago the president of Boehringer bought a beautiful home in this area. He hired me to do a lot of fancy ornamental iron work. He was not a very friendly guy! Maybe he was having a bad day, I dont know. It was a very cold December day. That i do remember. And i WAS having a bad day. We exchanged several words which i wont repeat here. After that was done I told him, ,”Dr if I ever get sick, I’d sooner die than swallow anything from your company”. I got paid. Stormed out of his house. Ha ha to me! Little did i know they would be the ones keeping me around. It’s all good i suppose.
Dont lose hope. I’m sure it will work out.
I doubt anyone here, expected to be HERE on this website. I’d say it was a surprise to all of us.
Hang in there. I will try to find a name for you. If nothing else, have your wife look around on line for an organization that perhaps can provide assistance.
Happy Easter.
Thom
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Hello Randy,
When I was first diagnosed I went to Yale New Haven hospital. There was no way I could afford $10,000 a month. My doctor was from India. She told me her mom was now living in the US and has IPF and that OFEV was made in india by Boehringer Inglehiem. She was having it sent to her. So my GUESS is it’s the same med.
A personal friend of mine is a scientist at Boehringer, their HQ is located a few miles from where I live. She says it should be the same drug but would have a pharmacist check before ingesting.
Turns out my insurance covered the full cost.
Good luck.
Thom
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Hello Jane, sorry to hear about your diagnosis.
I was diagnosed abot 16 months ago. A couple of months later i began to take 150 mg of OFEV. I was alright with it for a short time. I think perhaps 3 or 4 weeks. Than suddenly everything let go. My personal suggestion is dont stray to far from home until you are sure. Diarrhea seems to be the biggest complaint. I restarted Pulmonary rehab for thr third time last week. And OFEV came up, apparantly the diarrhea is the biggest complaint. I had to have a lower dose because i couldnt tolerate it. Ive been on 100 mg for over 1 year. Its still with me but not as bad. The good news is my doc said ive not progresses progressed significantly. I suppose thats good news. I do have occasional vomiting, but it may be due to the buildup of mucus.
Hair loss! For myself i have to find humor or I’ll go crazy, only because i have other things going on that cant be addressed. Double hernia and a back thats keeping me from being mobile. After seeing several surgeons not one will touch me. They all agree due to the IPF I’d never survive the surgery, unless it was for a lung replacement. Thats out of the question on my part.
Im 71, started losing hair in my 40s. For me i say its only hair. And i can wear a hat! Understandably as a female its different. All the hair on my legs is gone, making my wife jealous. Im not a gorilla type guy, but about 50% is gone on my chest and back and my armpits! It did not fall out in clumps. Over a period of time i began to ask myself, am i losing hair? Its insignificant to me. When i wear a bathing suit i look like Casper the ghost! My friend calls me The Great White Hope. Oddly the hair on my arms seems to be more than I have ever had. My eyebrows have thinned. Thats goo . I cant stand seeing men with bushy eyebrows!! I wish the hair on my face would stop growing. Im tired of shaving after 50 years.
But hey. Im still here, not as active as I’d like to be, none the less, i still feel alright.
I think all of us here expected to be on some kind of ride. Some more, some less. By no means am i attempting to minimize anyones symptoms except my own. Im thankful i can find a tiny bit of humor in my case.
Hopefully your body will find the side effects minimal.
Best of luck to you Jane.
Thom
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@mb2285 / Zee,
BARELY NOT NORMAL? Sounds like double talk. Pardon me. Im most certainly no doctor. However i agree with the others, you do need to see a more knowledgeable physician.
The first pulmonologist i went to see never as much as even used a pulse ox on me. Within 10 minutes of meeting him he blurted out to my wife that I would be dead in about 1 year…..get affairs in order. His next breath told me he wanted me on Esbriet. What is Esbriet??? No explanation was forthcoming.
I left his office with out msking a follow up visit. His office phone seversl times asking when i planned on returning. Was i his only patient!!
Fortunately i live one hour from NYC, 40 minutes from Yale, and 90 minutes from Boston. The world was basically at my fingertips.
Needless to say i never went back. I found out he was not board certified, I had no idea what that meant up until meeting him.
My suggestion, as others have suggested. Find a real doctor with a licence and not learners permit.
All the best to you.
Thom
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Post Script.
Years before i was diagnosed my GP wondered aloud why I was always short of breath. He even sent me for CT scan and ultra sound. No one said a word
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If i had to guess, I’d say the vast majority of the population worldwide knows little about the disease. Its important to keep it out front.
Thom
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Hello Charlene. It’s always nice to hear from you.
As for my cousin passing from IPF, I’m convinced hes the genetic link for me. Unfortunately as most everyone, families become scattered. I still have several relatives on the west coast but I can find them.
Just do what you know to take care of yourself, there in nothing that any of us can. One thing for certain is the help and insight this web site provides.
Take care. Thom
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I was a self employed ornamental iron worker for over 54 years. I worked with my dad, my dad worked for his dad, and my son, 44 worked with me. My son shows no sign of IPF, my father died of pancreatic cancer, his father heart failure. At a very old age. The closed indoor environment was terrible. I never gave it a second thought. Welding fumes and smoke like heavy fog. Metals of all kinds were constantly airborne, heavy dirt and dust everywhere. For what it’s worth, I actually had a very clean shop! Over the years and still today I stop to see others in my trade, and I’m amazed that anyone can work under such conditions. Its anyone’s guess if they will eventually get the disease. None of my employees have it, my dad didnt, so far my son appears fine. I worked with asbestos, at times covering my body to shield me from fire and sparks, so did my father. All my tests show no sign of asbestos, not one.
How can this be possible? That’s where the IDIOPATHIC come in I suppose. I was diagnosed by a team of doctors at Yale, also by 2 local pulmonologist. All said I have IPF. I also discovered a first cousin died from the disease, he worked 40 years for The Bell System in Manhattan.
So, what’s the answer? Who the hell knows! Someday I’m sure there will be an answer. I often wonder at times why a mother carrying a child for 9 months and the child is stillborn. No answers, but lots of questions.
When I was diagnosed I was told I’m in advanced stage, perhaps 1 year, 18 months. That was about 16 months ago. Honestly, I feel fine. I’m short of breath, I never changed my diet, and I’m living as I did for the past 71 years. I see my doctor 1 to 2 times a week, hes surprised that I’ve not gone downhill. When he does the PFT testing it’s usually better than last one.
I do have a hernia that’s keeping me down, and cant find a surgeon that will take me. They say the risk is too high. I’m sure I’ll find one soon.
Anyway that’s where I am. To Charlene and all the others my very best to all of you.
Thom
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Happy new year to all. Its been some time since I’ve posted here.
The liver (minus onions) caught my eye.
Ive been on ofev close to a year. Its a brutal drug to deal with. Ive still not figured out what to expect each time i swallow a pill. Im on 100 mg, 150 was too strong.
After the first several months a liver doctor at Yale sent me for blood tests. It was determined i had cirrhosis. Mind you i do not drink. I enjoy a beer perhaps every few months. Just one! A rare glasd of wine. I was told the ofev was the cause and was told no alcohol. Period! I was tested several months in a row. Being who i am i decided i would still have one beer on occasion. What can it do kill me?
I had no rash or other symptoms. Low and behold. The last 2 tests said my liver was fine. Must have been that beer! I told my dr, he was put off a bit, and i get it.
Each time he examines me along with all the testing, i am told that ive apparently leveled off. Breathing is actually better than last year. Im due for a ct scan, it will tell more of a story, hopefully a good one.
I feel fine, but had to stop Pulmonary rehab due to a double hernia, 3 drs refused to fix due to anesthesia, too risky they say. Add to that 2 herniated disks, and a prostate as big as a grapefruit. Radiation and surgery denied.
But. I feel absolutely fine. If i didnt know better id never know anything is wrong. Im 71, was told last year i hsd 12 to 18 months by the first dr i saw. Both Yale and my pulmonologist scoffed at that. Overall i feel just fine. Im glad to be here!!
Thom -
I too have a terrible problem sweating. I worked outdoors for 53 years and never broke out in sweats as I do now. I awake some mornings in the bed sheets look as though water was poured over me. The first time it occurred I freaked out thinking I wet the bed!
The other day I felt a bit tipsy as I was sweating. I checked my ox level and I was between 91-95. So far I’ve never fallen below 91.
All that aside, I still have difficulty with the Ofev. I go a few days with no side effects, than suddenly diarrhea sets in for the day. Although I have to say, since Charlene suggested I take half Imodium, along with a banana in the morning prior to the Ofev, its held a great deal to ward off the diarrhea
The truth is, were it not for so much shortness of breath I’d never know I had IPF. I cannot exercise or walk because I have a double hernia. When I have it taken care of I hope to get moving more. The problem is so far I cant find a surgeon that will operate. They said the risk is too high to be on a respirator during conventional surgery. The option is arthroscopic surgery. The risk there is carbon dioxide is used to inflate the stomach. After the surgery the gas has to escape through the lungs. So, at this time I have no idea where I’m at.
One day at a time! Along with the serenity pray.
Good luck to all!
Thom