hello Reshma,

I take 02 only on exertions, it work for me quite well, i walk avery day a bit, may be a block or so, slow, got tired and quit.  Respect of your question of  steroids for your mom Its no problem, my mom also with IPF she took 20mg of PREDNISONE  every day once a day she lived more than 10 years with the deseas..In my case Im… Read more

Hello Charlene,

hope you are enjoying good summer weather up in Ontario, related to Immunosuppresants, should I take some? never took any,

best regards

Jaime

Hola Rene , you have a very good point there, EGCG extract would be much better , In my case I take about a liter a day of China green tea, three times. Thats lots of water too which is good for us may be not enough EGCG then. How you take the  extract, its a more concentrate tea ?..Anyways I ll be alert to the comments, thanks for your reply,… Read more

hello falks, I m on a green tea for a week already, got it from superstore,  2 little boxes of 20 bags each, inexpensive though, about US$ 2,00 two dollars per box. Will take em all 40 and will comment, best reagrads for all of you friends, hopping something good come out for all of us from researchers on this COVID-19

JAIME

Hi Rene, As soon as I read the article , went to superstore and got myself 2 packs of 20 bags each of GREEN TEA I m on it now since 3 days, feel better, I quit coffee all together though,
my phlegm an cough went down 30%, so will try for 10 days. best regards
jaime

Yes Joe you are right, we hope  something good will come out of this horrible covid-19 , hope its sooner than latter, fingers crossed so researchers take a look at the “ground glass” shape Cat scans ,best wishes for all of you folks

Jaime

Hello Steve Dragoo,

Thanks for your offer, woul like tu discuss with you about serrapetase, I´ll be alert to yours comments

thanks , best regards

jaime

Hello Charlene,

long time no talk, hope you are well ,  In my case can t complaint, doing quite ok with the Phlegm at nites, I discover myself with the combination of two medications …bingo…., sleep 9 hrs. and no phlegm during nite….for our fellow IPFers, Mucinex syroup, and Phlemex with codeine syrup, 1 tablespoon of each  at bedtime,… Read more

hello Kristin, yes , as Charlene said , Metformin its been tested on mice with a good outcome, in my case  i m on it for a while, 850mg a day for my diabetes ll, I have IPF since 2013, I´m  not taking any antifiobrotics, no 02 yet. I think its been good to me. ( I´m 71 )

best regards

jaime

Hi Betty,

I was in Crestor long time ego( 2 years) for my IPF 1 month, Gave me lots of bones and muscles pain, so I quit, in 2019 I was on atorvastatin wich is about the same , for 1 month no results, my pulmonologist precribe it for Respiratory track inflamation , did nothing on me,    Now Im  on Prednisone  5mg a day, good results……… Read more

hi Luke,

refering to your question, my pulmonologist presccribed me statins for the respiratory track inflamation only , Prednisone work better for me . The studies in Rats showed that metformin it might help on reversing fibrosis, not approved for humans yet…Also Azithromycin it is been tested for ipf …hope some of this  will cure… Read more

Hi Jofac, ……just a bit of info. I ve been aroud quite a while with this horrendus desease, passed through several pulmonologists in Canada and Chile,  I was on OFEV like you for two months, could´t put up with side effects , Statins for example they give it for inflamation of respiratory track( took it for a month did nothing on me) on the… Read more

Hi Carlene , thanks for you words, like I said to Jofac, Im sure you will benefit from the cure for IPF, I´m already too old to see that, but you never know, the cure could come any time from now,  lots researching around the globe.  All  the best for you

jaime

Hi Charlene , Rene and JillT, some time ago we talk about this topic. By the way, Puma Rodriguez,  he was singing live here in Santiago  last week, his case I think is exceptional, and prove that everybody is different when it comes to this horrible desease, my case for instance : diagnosed back at the end of 2012, took ofev for 2 months,… Read more

Hi Charlene, about that people coming from china, You are right , for us is too close for confort, Imagine what that virus will do to our already weak inmune system, I don t want to even think about it  …  best wishes

jaime

hello Susan,  about your cough and sleepless nites, I suffered the same, time ago, now I take a Dr, prescirption…FLEMEX with codeine syrup at bedtime (a tablespoon) , I sleep well through the nite, hope it work for you, best regards

Jaime

wendy, I do exactly what you do, can ´t let my weight go down any further , so I eat normal,

eat bread, chocolate, and pasta, rice etc. also listening to my body, I m going for the 8 th year since diagnose IPF , feeling ok since I quit ofev, no oxigen needed yet, thank God.

best regards and a great 2020 for all of you friends

jaime

Reshma. .i take FLAMEX  with codeine 3 times a day starting at bed time excellent for coughing. .hope this helps

best regards

hello friends,

CO2 .

Im already 20 kg underweight, with no diet at all, imagine if I quit Carbs, and proteins,

that would it be my early death sentence, thanks for he hint

jaime

Hello Charlene

I think I ve  commented before about this topic, but in my case , I´m a Canadian living abroad

Here the weather is quite mild and damp, in summer time we have around 25 c. for a few days, the rest of the year  goes from  2 to 20c  in fall and winter with lots of rain throughout the year, compared with the cold of Calgary ,… Read more

Hello Charlene. what an envy, those beautiful pics, and sceneries

,here in Puerto Montt , only 8, quite cold…Have a great time there,

enjoy your stay over that beautiful place…best regards from Chile

jaime

( @lwaldschmidt )

Hello Linda, I have a SAMSUNG air purifier, its a great unit have a lite to show how is the air its going through the filter ..from red to green, also have a bacteria doctor , its tells you the quality of air you are breathing, is about us$ 200.00…best regards

jaime

Hi Charlene, nope I have not been prescribe metformin for my IPF but Im taking it for prediabetes, mellitus 2..best regards

jaime

Hello everyone, METFORMIN, i m on it for quite a while 850mg une pill a day, and it seems to help ..anyways I think its worth to try, most of us if we are over 70 years old will need it anyways.. for control the pre-diabetes..best regards

Hi Charlene, nice to write you again, yes you are right, I suffer a lots of muscles pain, specially after exacerbations (heavy productive cough) on my legs and chest headaches also, after a while they goes away. Is very frustrating sometimes knowing there is no cure for this desease, Hope we can live up to use some of the new drugs that its… Read more

Dear Charlene, I wanted to comment on how I feel, Apart of my execive over abundant of phlegm, living in a very humid and mild coast line weather seems to help my PF, moving here from western Canada very dry climate, coughfing all day long. Here seems to help a lot  my day by day living.

best regards to all of you

jaime

Hello Charlene, would you believe that I just saw yor greetings of Canada day, well let me tell you , I became canadian 40 years ago, I lived most of that time in Calgary AB, but for health reasons I move back to Chile where the summers are way longer and not too dry. Canada is a great country which I m proud  to be part of . I make those… Read more

Hello Charlene, what a great news about new trials happening now, like you said, Hope we live long enough to be able to see an get the cure to this horrible deseas. Still fighting with this phlegm of mine.

all the best

jaime

@cynthia-comery-ferguson

Cynthia, Like I posted the other day to Charlene, Dr prescribed me atorvastatin, it was funny becouse when I got to the pharmacy counter I realized that was a cholesterol medication, Phoned Back to Dr office and he said, yes its not a mistake, statins are for the respiratory track imflamation treatment also. So far… Read more

hello Charlene, no luck with my Phlegm business, during the day isn´t that bad, when the bedtime comes is my problem, made me cough a lot, but will tell you about Statins and metformin….My pulmunologist prescribes me the Astorbastatin, he said work pretty good on inflamation of the respiratory tracks also.(cholesterol medication) Metformin… Read more

Hello Charlene, this is Jaime, the one is having lots of problems with the excess of phlegm, almost unbearable, still quite heavy, but the reason Im writing is to thank everybody in this forum ,specially you for caring so much, wanted to give you some of my experience with OFEV.   I was diagnosed IPF back 1n 2012, but it didn´t bother me until… Read more

Thanks Steve for such a good tipo. ..i Just started on serrapeptase. 3 times a day but only small amount 1 pill 5mg every 8 hours should it be 2 three times a day.  Will increase gradual la

Best regards

Jaime

 

 

Thanks Linda for so prompt reply, will try and see what happens

with serrapeptase, I heard about it  in this forum, few months ago

thanks again

Im a Chilean Canadian living in southern Chile, pretty rainy and humid here, some how seems to help me dealing with IPF since 2012, no oxigen yet thanks God.

Living with IPF since 2012 when i was diagnosed, i was in OFEV for a few months and couldn´t keep up with the terrible side effects  My saturation is over 96% resting , but my ordeal is the excess of Phlegm specially at night when I lie down to sleep. If anybody knows something to cut some of that would be great and much appreciated.