For coughing at any time can e severe but at least it brings up the plegm, I take tiny sips of a good strong quality orange juice with pulp and keep an eye on myO2 levels which drop dramatically when I eat

 

regards Sue

Morning

 

I actually would not be without Predisolone.  Started off at a 60 mg dose like you but for 2 weeks only, sleep was a problem on a high dose, then weaned down to my maintenance dose of 10 mgs, been on that for three years with absolutely no problems.  At first I could eat a scabby dog but now al OK, I am allowed by my doctor to go up… Read more

Happy to have made you smile, please do phone back now that you are not in such shock at their original answer.

Oh Karen

I cannot believe you got that sort of answer, hope you said something along the lines of, put a pillow tightly over your face and see how long you consider lack of O2 not a priority !!!!   grrrrrrr

 

 

Hi Jill

 

No insurance increase on either my car or house (same insurance company) BUT I live in France and way out in the sticks so things might be a little more relaxed here   The sign on the door is NOT a requirement, just a polite warning in case of fire.

 

Hope you can get things sorted without insurance hikes.  I just had the feeling… Read more

Hi

I have only had to inform my insurance company, house & car, that I have large O2 tanks in the house+ 2 smaller ones and one small one permanently in the car. I do have a sign on the front door that Ii have O2 inside

Take care one and all

 

Sue

Hi Jill

I have ,  a Caire Hi-flow liquid content which go up to 15 ltrs , the other is a companion T P/N 775499-B, also up to 15 lts.

At first the filling up is a bit of a chore, you have to really press down on the filler end and keep up the pressure whilst filling, I count to 20, release lever listen until the gurgling (filling, quick… Read more

Hi Elizabeth

I am in France so my supplies are vastly different to the USA as well.  I get what I want and what I need no problems, just have to ask.

To my mind the bigger the portable concentrator the better as you can usually get further, bearing in mind that to my knowledge no concentrator seems to supply more than 3 ltrs no matter… Read more

Hi Marianne

 

I think that is awful that the O2 suppliers can decide if you do or don’t qualify even after a doctors note.  I had a POC long before I was on 24h O2, I now have 2 Pocs as my O2 needs are high and each POC goes up to 17 ltspm, the O2 company suggested I had 2 !!! so as not to be caught out by any longer than 2 hour visits.  I… Read more

Hi Wendy

Sorry to hear you have had a seeming exacerbation, quite scary aren’t they.  I am absolutely dreading the pine pollen season as I am allergic and live surrounded by forest of which quite a goodly proportion are pine trees as this is the biggest area for Christmas tree and timber production !!!

I can sit quite comfortably and… Read more

Hi Sam

I am in the same position as you, at rest I am up to 92 but the minute I move I drop to 75/69 at my lowest, I up my O2 intake sometimes up to 13 to be able to shower, sadly only twice a week as it takes so much out of me, I have stools scattered around the house (live on my own but my daughter comes in twice a day)  to be able to rest… Read more

I get nose bleeds all the time, not gushers but nose bleeds each time I blow my nose.  I am on asprin protect agains blood clots so also get random unexplained bruises, predisolone causes these too.

I have exactly the opposite problem, can’t stay warm, even with these last few days being very warm, 24° I am here in thick jumper and fluffy blanket with hot water bottle !!!  Not on any anti-fibrotic

 

 

Sorry Wendy, I just sleep through them too. I have found that if I eat something, usually a half cup of a substantial soup, I sleep deeper and better and seem to get through the episode faster.  Sorry can’t be of more help

 

stay safe   Sue

On oxygen I have a bubbler so until I went on really high out put  never had a problem.  Much to every ones horror I use a moisteriser (consisting of glycerine, parrafin and vaseline, prescribed by my doctor for my very dry skin caused by the scleroderma) up my nose now, silky smooth and works wonders for me, in the very tiniest of quantities. I… Read more

Hi Marianne

 

My oximeter was checked by the hospital during a recent stay and it was spot on this their electronic one, I do know that my other meter is a few ° out so rely on my AVAX one, my readings are all over the place depending what I am doing or have done, takes a minute or two for my levels to go done and about 5 to 10 minutes to… Read more

Hi Bill

 

Yes I am trying to get the Moderna vaccine, seems to be the safest one for me.  Can’t even get a Pfizer jab here even if I wanted it !!!  Live out in the sticks and in my county there were only 800 jabs (Pfizer available) and all went to Drs and frontline workers.  Being in the sticks I am safer, I hope, than most people.

Hi Bob

 

Dear Bob

I had 2 Inogen  concentrators one for the home and one back pack and was very very pleased with it but they only go up to a maximum of 3 litres a minute, as you say can be plugged in anywhere but please be aware that it has no filters re viruses etc so you breathe in anything that is in the air around you, scary in… Read more

Hi Marianne

Glad you got your Covid vaccine, even though I am classed a critically vulnerable I haven’t yet been able to get an appointment for the vaccine, I am too scared to take the Pfizer vaccine, my friends husband had the reaction I dread the most, he was unable to breathe easily for about 1/4 of an hour during the night following… Read more

Hi Marianne

I am English but live permanently in Burgundy France.   I am unfortunately I am at stage 4 following the latest exacerbation, and 27/7 O2, don’t need much when sitting or sleeping, 4lts, but if I move even on max which at the moment is 6,  I drop to 55 blood oxy, NOT good so have to have extra bottle that I can wheel around as a… Read more

Hello Marianne

Have you got CPFE?    Diagnosed in 2014 and on O2 for the last three years. I started off on a back pack oxygen recouperater (sorry can’t think of the English word)  they go up to a maximum of 3litres per minute but they can be plugged in to the electric current anywhere to recharge, including the car.  The problem with them is… Read more

Each country seems to have different systems

I have huge cylinders that I fill my back pack from,and use for my O2 needs,  tried to find the literage but not anywhere visible, I use one and a 1/4 of these cylinders per week for my O2    (weekly delivery)

Wish my back pack lasted all day because of my O2 levels  it only lasts 1 and a 1/2… Read more

Dear Joe

 

Just one warning about concentrators, as you are in the UK, they do not have filters that deal with Covid, so either use your bottled O2 when out in any sort of company or get a liquid O2 back pack, that involves having a huge cylinder (I have three + two small ones) in your home to use around the house with 10 metre hose  and… Read more

Hi Bob

I am a mouth breather too and have had to train myself to nose breathe. Never even considered face mask. I have found that if I lie on one side or the other that side nostril tends to bung up so also have had to train my self to sleep on my back, in a half sitting up position. Don’t need high concentrations of O2 to sleep 3 or 4 litres… Read more

Hi Floyd

 

Like you I am at stage 4, it is it happening very rapidly, in the last 2 months I have doubled my O2 needs, cannot move without dropping below 69 blood O2 even on the highest number my machines go up to, being supplied with a Y joint next Tuesday to join my 2 cylinders together, atm I often have to have two sets of prongs up my… Read more

Sorry to say that any virus germ etc is sucked directly into your lungs, so mask no good at all.  A  bottle of liquid O2 is the only answer.

 

Take care   Sue

Hi Bill

No I wasn’t suggesting that money was a problem for you, just stating how lucky I was not to have any worries at all on that score over here.  I know it can be with some insurances or lack there of, can be critical for  others, reading about the costs of some vital medications over there, if accurately reported.

 

 

Hi Bill

Lucky to be here (France) where I pay absolutely nothing for my oxygen, don’t even have to have an insurance, in fact as some one with a life threatening disease I don’t pay a penny for any care, cancer and heart disease also come under this heading, it is all paid for by the governments health care system. Have to pay for the… Read more

When I was able to be more active I wore my back pack to do everything, living where I do pulling a trolley would have been a right pain and very restricting and ex broken collar bone made it out of the question to carry a shoulder version, you soon get used to the weight and after a while I hardly noticed it, mine with a double battery was 10… Read more

Hi John,

Doesn’t seem to be a formula as to when people need to go on O2. Apparently some can go for years and others go down hill faster.

 

Hopefully you are one of the former

 

Cordialement   Sue

H Randy

Sorry to hear you have a catalogue of complaints like me, doesn’t make life easy.

Can imagine how having two concentrators running at one makes a room unbearable beside the high electric bills, happy to read that you have managed to get back down to one and are hoping to do yard work in the Spring, brilliant, hope it comes to fruition.… Read more

Hi Reshma

Sorry have no advice.  I have to use Omeprazole once a day because if I don’t eating is a very unpleasant experience.  I eat every four hours day and night, mostly soups so that I can sip and nothing big *lands* in my stomach. I cannot eat anything spicy, shame I used to love a good curry, nothing too sweet either and I never add… Read more

Hi Reshma,

I have severely swollen ankles and feet at times, always fairly swollen, if I drink too much water they get a lot worse, so it is a fine balance between drinking enough but not too much, also I sometimes put my feet up on the wall (when in bed) for half an hour, higher than the rest of my body to help drain the fluid as I had my… Read more

Hi

 

I used to have horrific dizzy spells, for instance if I was shopping and got to the check out and stood still, spells were always when I stood still after a bit of an effort, I would have to grab something to steady myself. I am now on liquid O2, brr so cold on the back, instead of the O2 (oh lor can’t think of the English name for… Read more

Hi Brian

Great you have had your vaccine.

 

Hope you manage to get out here in May. Wouldn’t want to be anywhere else in the world than here.

 

cordialement  Sue

Hi Reshma

Glad to know that you now have the big cylinders  and two little ones like me, great help.

I find Vicks vapour rub very helpful for the coughing at night, I rub it on my upper chest and up my neck,  haven’t yet used it by day, maybe a little under her nose might help too, I find it helps with the tightness in my upper chest and eases… Read more

Glad to see you back Reshma

I am now on liquid O2 big cylinder that supply 6 lts per min, (3 of them) my O2 providers are bring, this Tuesday a Y connection so that I can have two cylinders joined together to go higher, up to 12lts if necessary. 10metre supple tubing so I can get about the house, I up or down the O2 as needed depending if I am… Read more

Yup Jofac, all we can do is follow medical advice, though I do a lot of research as my combination of lung problems is very rare.

I wish your wife well.

Hi Jofac

 

I think Anne’s PF might have been caused by chemotherapy a known cause for PF. A right B…. that curing one disease has the potential to cause another.  But yes you are right in your thinking too, we have no idea of the harmful substances in our food nowadays.

Here (France) if you live in fairly isolated communities you haven’t got a chance of getting vaccinated until way down the line. All health workers come first, and so they should, then care homes and the like, then city folk with health problems, then city folk.  I have been told that I am not suitable for the vaccine because I have… Read more

Hi Anne

I haven’t got radiation PF but chemical induced PF + 2 other lung diseases provoked by said chemicals and emphysema from me smoking, my condition is getting worse rapidly now, have recently jumped from 2ltspm to 6 and after two months that is now not enough.  Next Tuesday I will have a Y connection to hook me up to 2 big tanks at… Read more

James, you are so right about Symbicourt, it nearly killed me on the second dose (night, first day time dose was bad enough), I cramped up all over and couldn’t move, couldn’t breathe properly, if I could have got to the telephone, by my bed, I would have rung for help it was that bad. I was given it when at the very beginning they thought I… Read more

Hi Rod

 

Try a wedge pillow for sleeping,  certainly helps alleviate the cough, though now I have had to get my son in law to make a wedge type frame to go under my mattress as I need to have my head even higher to be able to breathe and sleep. Also you could, if you sleep alone, put bricks under the feet of the bed head to raise it… Read more

Afternoon Charlene

Very disappointed, the first back pack was calibrated wrong, no wonder I was feeling so darn good and walked 3kms with 4 stops to get my levels back up, I now know it was delivering me about 8/9 ltrs per minute,  new back pack delivers 6 lts  and I still can’t walk the dogs as the track is very slightly undulating and that is… Read more

Hi Vishal

For my diseases, CPFE, bronchodilators are dangerous so it is said

quote  *It is important to point out that the presence of emphysema and abnormal changes in pulmonary vascular bed in these patients may be associated with an imbalance in the ventilation/perfusion ratio (V/Q), as hypoxic vasoconstriction is one of the main… Read more

Hi Taleena (lovely name by the way)

I read that far too many ordinary doctors put people on Prednisone at high doses and don’t take them off, this was my case as well, 40 mgs,  but as I hate taking chemicals (the  breathed in  ones caused my lungs diseases) I was quick to wean down when the inflammation calmed down and the pulmonologist… Read more

You must have been on a pretty high dose all that time to get the moon face and put on so much weight.  High doses are usually short term because of a flare up and then slowly weaned down to an acceptable level of anything from 2 1/2 to 10 mgs if needed on a permanent basis.  I have no side effects on 10mg per day other than hunger which I… Read more

Thank you Mark for your very kind words

I am on 10mgs and ever since I started on Prednisone I could eat a scabby dog, been on it for 3 years and only

just started to lose weight.

Oh yes Maka I really think people do think we are infectious even with nasal prongs and an oxygen tank.  I once answered some one (before Covid) that told me to stop spreading my germs, that * My problem was 100% fatal and 100% non infectious and thank you for your concern* made them as uncomfortable as I had felt, not nice I know but… Read more