[Charles]

I have never heard of it. Is it being used now for IPF? Chuck

[Charles]

Hi you all. It looks like most of you have covered just about everything that there is to cover. So there is not much i can add. However, i have had IPF since 2013 (given about five years tops to live) and am not getting better of course. There is nothing on the market that makes you better. But i have been on Ofev for about five years and feel that it has helped me to this year. But and i say but, it is impossible to say i would be better without it. There is no way any of us can make that claim, no matter what they are taking to help. I have never had any side effects from OFEV. But i may be a little different then most. I have never had a head ache and i have only had a couple of colds in my entire life. I just get the big stuff. Heart attacks and IPF. But for 81, i am still kicking. Chuck

[Charles]

Hi you all, Chuck here 07/13 23. To J L La Brack, I have concluded that there is NOT a pulmonologist that gives a s++t about we who have IPF. Like you have said, they are more interested in COPD, EMPHYSEMA, ASTHMA AND CANCER and could care less about us with IPF. I have gone through three pulmonologist in the last 2 years and am now looking for another one. There is more knowledge shared and known on this site than any pulmonologist that i am aware of. That said, i will try Zinc with Piculiate. Can’t hurt. I did use Zinc alone for a year and saw no help.

To Mike Ktori, try AYR GEL for your dry nose. It helps me. Just put a little on a Q Tip and swab around.

[Charles]

As far as Zinc goes, there were a lot of articles and comments about it on this site about a year ago. So i ask my Pulmonogist about it and she had not heard anything about it. So i ask my GP whether she thought that there could be any thing harmful if i tried it. She said that she felt that i should be ok taking it. So i tried 25mg daily for a year and felt no difference as far as improvement goes. So i just recently stopped taking it. Hope that this gives you a little incite on using it. Charles

[Charles]

Is the site on using ZINC for IPF still active?

[Charles]

Kim, i have ordered some Haritaki and am hoping that i can have the same results that you have had. However, i am on my tenth year so i may be to far gone, but i am willing to try anything. I have sent am e mail to my pulmonologist but have not heard back yet. Would you tell me what dose and how often you take it. Chuck Gerson

[Charles]

Dee,Let me start with this. I have found that there are NO doctors who really give a shit about us. Most of them are all now members of a huge corporation or something close that. I have had IPF for a decade now and it was discovered by a Pulmonologist that was probably 60 plus and was not a member of a corporation. He was a kinda doctor that was from your old home town and cared for the patient and not the big bucks. I was fortunate. I am on oxygen just about full time and like you, when i move my numbers drop a lot. You rally need to stay on oxygen as much as you need to. It is NOT habit forming or addictive. Like Mark just said, you really should be above 90 as much as you can. My suggestion is that you try to find a doc that is not affiliated with the big pharma, but does have some time working with IPF patients. BIG TASK! Good luck and hope that i have helped a bit. Charles Gerson Cambria California

[Charles]

Pam and all others. I was diagnosed in 10 13. That’s ten years. I have been on OFEV for the last five or so. Although i am not active anymore and am on oxygen a lot, i am still on this earth. Don’t believe everything you read. Charles Gerson

[Charles]

Hi Ya’ll, i usually ramble on and on when i get on these sites, but this time i will be short and to the point. I am 81 and was discovered with IPF in late 2013. I was put on OFEV 150 twice a day about five years ago and have had really no problems. It’s hard to say if this stuff really works because i have no way to compare it to, if i had never used OFEV. However, the doc says that my progression is slow. So, that said, i guess that you could say that it is working.
Charles Gerson

[Charles]

Hi Ya’ll, To help my breathing through my nose i found that my nose was and is getting clogged with mucus and whatever. So i have been using a gel (not the spray) called “AYR” on a nasal swab (q tip) a few times a day. It kinda loosens up everything in my nose and then about a half hour later i blow my nose as hard as i can and usually i can breath better and easier. You can get AYR at any drug store without a prescription and it’s only about 6/7 bucks a tube. Hope that this helps at least some of you. Charles

[Charles]

I use and have been using supplemental oxygen for about four years now. When i go shopping i take my portable unit. I start at 2L but usually have to move it to 4 or 5 as the shopping continues. Anywhere between 2 to 3 hours. When i am back in the car to go home, i start backing it up to eventually get to my original 2L. If i didn’t take my portable unit i’d never make it. But going slow is the key. Take your time and take a little rest if need be. You’ve made it all of these years, why try to kill yourself by rushing.

[Charles]

Hi Maria. First, and not trying to be negative, but there isn’t a pulmonologist that is worth their salt. A good one is as elusive as the correct spelling of the word pulmonologist. Can’t even find a correct spelling for it in a dictionary or even spellcheck. For what ever the reason they are not up on the many different things that are out there that may help us. There is Zinc also red therapy #4 (i think that is what they call it) and many others that in my decade of having this wonderful disease i have been told about. Fortunately, i have never had any obverse reactions to OFEV, however,i take 150 mg twice a day. Don’t know what amount you are taking, but if 150, it might be smart dropping to 100. I am not a doctor so you should check with your doc, although i may may know more than he does as well as the people who have answered your call for some helpful information. Hope that this gives you a path to follow. Charles “Chuck” Gerson

[Charles]

Robert, just about everything that you have described about your mother is pretty much in line with this shit disease, IPF. Have you tried the med, OFEV? It does not cure, but it is suppose to prolong the inevitable. I was diagnosed in late 2013 and am still huffing and puffing my way through life. I really believe that the OFEV has given me some extra time. The ups and down of your mom’s oxygen readings are pretty much what i am going through and i expect others also. Oxygen is not habit forming so she can use as much and as often as she needs to. I have to walk up 21 steps to get to my car and it takes me five minutes or so to get there. By then my oxygen has dropped to the high 60s, low 70s. It takes me sometimes 10 minutes to recoup to the high 80s low 90s. OFEV is expensive but BI does have a program that you can apply for and if you qualify it is free. I take
one 150 mg pill twice a day. I don’t know how long that your mother has had IPF but it may help with her state of mind also knowing that she may live longer by taking it. Hope some of this helps, Charles

[Charles]

GO GIRL GO! Get crackin and find a cure for all of us. chuck

[Charles]

Hi GratefulDeb.
Try Boehringer Ingelheim They have a “BI Cares Patient Assistance Program” for OFEV. PO BOX 5637 Louisville KY 40255. Phone number is 1 855 297 5906 or fax number 1 855 297 5907. They are great people there. I have been on their program for years. Just need to renew annually. I am on social Security and qualify for the OFEV at no charge. Hopefully they can do you some good. Chuck

[Charles]

Thanks Rhonda for your input. I see my Pulmonologist tomorrow (Friday) and will ask her about the laser stuff. Chuck

[Charles]

Hi ya’ll, My nephew has found a Quinear at the Sinoriko store that has a Red Light therapy device and it reads 13 pcs X 650n power +4 timer that’s handheld. Does that sound like what you all are talking about?
Chuck

[Charles]

I am Chuck and i was diagnosed in 2013. I am 81 in 5 days. I have been on OFEV for the last 5 years or so and really believe that it has been very helpful. Hope that this helps.

[Charles]

Sorry for the loss. I am not far from that myself. Hope she went peacefully.
Chuck Gerson

[Charles]

Fortunately i don’t live where there is temperatures like that. But it does get cold. When i get into any type of chilly temps i start coughing a lot. Does anyone have that problem and if so, any antidote for it? Chuck Gerson from Cambria Ca.

[Charles]

Hi ya’ll, it’s Chuck again. 11/15/22 I had read that article from Cedar Sinai about 3 or 4 months ago when it had come out. I started taking 25 mg since then and still do. I personally do not see any chance, but a recent ct scan showed very little progress of my IPF, which by the way i was detected in late 2013. My pulmonologist has no opinion on it. I am now on almost 100% oxygen, but i am still here. Keep your heads up and a smile on your face and maybe there will be something that will work. Chuck

[Charles]

Hi to everyone. I was originally going to reply to Pam at the very top, but after reading so many of these remarks, i guess what i have to say is for all of you die hards. (Pardon the pun!) I was diagnosed in late 2013 and was told the same as you all have been told, or if you are from the south, ya’ll have been told. 3-5 years. I lived at 6000 feet altitude and after four years had gone bye, my pulmonologist (by the way, did you know the the word pulmonologist is not in the dictionary. So is it really a word?) said that i had to move to somewhere around sea level because the air at 6000 feet was waaaaay too thin. So i did. I am now at 300 ft. It is going on 9 years now and i have recently had to increase my oxygen that i have been on from time to time to almost full time. Not good! If i am sitting fairly still, maybe watching T V or on the computer my oxygen level is about 88 to 93, but if i get up to go to the bathroom, which is about 20 feet from where i was sitting, my oxygen drops to 82 ish and if i do anything physical like making the bed, or vacuuming my oxygen drops to 70 ish. This all tells me that my days are numbered. I find that my appetite has diminished and when i do eat, i have to go slow and usually can’t finish a normal size dinner although i do force it down as best as i can. I have been on OFEV for about 4 years and have had no side effects. But that is me. I have never had any kind f stomach problems all of my life no matter what i eat or drink. But i have never had a headache, and maybe 2 or 3 mild colds in my entire lifetime. I only get the big stuff, IPF and heart attacks. I will be 81 come January and i am hoping to see me age a little more. God willing!!! There are just somethings that we all have NO control over. So, i hope that some of you can reap the harvest from some of my words, like get the hell to sea level, take your OFEV as prescribed, do exercise as much as possible and hope for the best for all of us. No matter when we were diagnosed, we are all in the same boat. So row like hell and maybe some of us can last until some drug company wants to invest the time and money and find a cure before it’s too late. Sorry for bending your ear for so long, but i hope that it was worth it for some of you. Charles (Chuck) Gerson

[Charles]

Natalie, there is a company called “SupercareHealth”. 1 800 206 4880. They have a 5 hour portable but only lasts for a couple of hours while on five, they also have a portable that goes to four and can last for six to eight hours. Give them a call. I think that they are all over the USA. Chuck Gerson

[Charles]

There was an article from Cedar Sinai hospital saying that using ZINC was very good. So i have started it at 25 mg per day and i seem to be doing a little worse. Anyone aware of this?
Chuck