Susan Howitt

My daughter is undergoing tests for Sjogrens syndrome too, feel so guilty that I have probably given her immune problems, (I have Systemic Scleroderma along with industrial provoked fibrosis and my own fault Emphysema) she is only 54 and suffering already and beginning to cough, hate the fact that she is having to look after me and knows what she…[Read more]

Morning Les Viegas

It is true that women are much more likely to suffer more with the bone weakness effects of taking Prednisone long term, for me so far so good after three years now, started on 2 1/2mgs and am up to 10mg per day and more on a flare up, I have absolutely no side effects from taking the drug, even when on high doses during a…[Read more]

Hi Regina

I was also exposed to severe smoke inhalation when my neighbour cut down a field full of fairly tall Christmas trees, (his business) then set fire to them and went on a break, the fire burnt for three days and covered my house with smoke for the entire time.  Seriously bad effects on me, first of all the cough, then a nasty infection…[Read more]

My pulmonologist has refused to increase the Prednisone, but I must admit on a bad day I do take 20mgs instead of the 10.  Coughing reduced and not blowing my nose nearly so much, this effect seems to last for several days, I have advanced lung diseases and on 6lts O2 by day and 2 1/2 lts at night.

Hi James

I can see people backing away from me in supermarkets when I cough even though I am very obviously wearing nasal prongs and a back pack oxygen system and  clear visor, can’t wear a mask.  I have even had some one tell me to go home and stop spreading my germs!!  but with this wretched Covid people are getting paranoid and even ugly fr…[Read more]

Hi Cindy

Thanks for you kind words, what on earth causes the post nasal drip with our conditions? cannot see the relationship at all, what has something in the lungs got to do with something in the head?

Post nasal drip is a B….. isn’t it, forever blowing my nose.  Is the phlegm related? don’t know.

Hi James

That morning cough is terrible isn’t it, I cough until I gag.  I have just come out of hospital after another exacerbation, and they have organised a physio for me, but to be honest I get most of my phlegm up before she even gets here (11am) and get some more up during the day.  I cannot walk my dogs any more,  (sob) even on the flat, lu…[Read more]

Omodium melts (sublingual) can be bought over the counter in most countries I should think, definitely here, Europe, and the UK

I now have a POC that uses liquid oxygen so no POC sucking in all the germs and viruses around, so happy about that as the virus is on the rampage in Europe.  Hated the thought of being in hospital at the moment but so very glad I went in.  Was on 2 litres per minute when moving and 2 litres at rest.  That was in late July of this year now on 6 li…[Read more]

Hi Reshma

Glad you are now able to be with your mum.  Have you sorted her oxygen needs because what I am now on might be the way for you to go especially as your Mum doesn’t go out much.  my tanks go up to 7 1/2 litres a minute and I am now sure there are higher ones.

My daughter doesn’t live too far away so is now coming daily to help me, w…[Read more]

Hello one and all

Just come out of hospital, what an eye opener, just knew my *professor of pulmonology* was wrong.  He told me I needed to learn to breathe properly (July 2020) when I had my six monthly review and he had also now got it in his computer that I have IPF, no I have CPFE and have had that since initial diagnosis in 2016…[Read more]

I just take omeprazole, works wonders, haven’t had a hint of reflux since I started on 10mg,  there are stronger doses.

I am on 10mgs of Prednisone for permanently, upped to 40/60 when having a flare up, without it live is unbearable with the coughing.  I have not had one side effect bar the fact that I could eat a scabby dog, so self control is important there.  Sorry you have the moon face effect, so far I haven’t and have been on Prednisone for 2 years.

So very sorry for you and your family, at least your Mum is no longer suffering from this awful disease and of course it is so hard on the family to watch us struggle more and more  MAY SHE REST IN PEACE

Hi Kristie

All very well your doctor saying stop doing that, wish we could, I never know from one minute to the next what will cause it, ie carrying something little will sometimes do it, then carry something heavier wont !! I do know for me even bending a little will cause an instant large drop, so bought a grabber.

Saw my doctor yesterday for…[Read more]

Hi Bruce

Thanks your answer confirmed for me that I would be absolutely useless taking either of the tablets, I cannot for the life of me be so precise about taking tablets. Always forget the evening dose of anything until hours after it should have been taken.

Hi Reshma

Knew I had seen some one on here with concentrators in tandem, they are using three in tandem  it is participant Sarv Punj   (July 14th 2020)  I hope he answers for you.  Please share if he tells you how to combine them

Two 5lt concentrators in tandem, making 10 ltrs (I believe some one on here has that system) although I don’t know how they link up.  There has to be a little gizmo that links the two concentrators to the air line. rather like in fish tanks, NOW there is an idea !!  I do have some of those !!  I would like to know too as I am waiting to go into ho…[Read more]

Hi Randy

Do you have the emphysema along with your Fibrosis.  I have a fistful of complication  Fibrosis, Emphysema which equates to CPFE plus Bronchiectasis and Systemic Scleroderma the latter is the b……..r.  I was highly allergic to one of the inhaled drugs, and reading up on my CPFE it is also something that is not advised for that di…[Read more]