Susan Howitt

Prednisolone makes me want to eat a scabby dog !!  Can’t say that I have no appetite, it is just that food hasn’t the attraction it once had.  I still want to eat just don’t want it once prepared most of the time, just doesn’t taste right somehow, even so I am NOT losing weight even though I need to.

There is no way I can get cannabis here s…[Read more]

Hi Fred

Reading back it seems to be any lung disease is the cause, I haven’t got IPF but CPFE and have exactly the same problems.

My sense of smell is extremely heightened, some times wish it wasn’t as they have been muck spreading recently here yuk.  Has to be the disease because I am not on tablets except Prednisone.  My taste buds are definitely affected too. Can’t say I have food aversions just don’t like things I used to or I will fancy something and when I get it I d…[Read more]

Hi Liam

I am another one that is sure that I don’t need O2 when sleeping  I don’t need it at all when not moving, in fact I can sit and watch TV or have dinner and conversation now for hours with out O2 but as soon as I move I drop to the low 80s even on O2

I have checked my O2 levels if I wake and they are always in the 95 to 97 range the same…[Read more]

My daughter tried this on our last visit to the professor and his  side kick, Michelle is the most tactful person I know..  The woman was really quite rude in trying to get us out of the door and not answer her question. I think they really have washed their hands of me because I will not take the tablets, I just don’t want to feel ill because o…[Read more]

Dry mouth seems to go with the syndrome and dry mouth equals cavities without the antiseptic properties of saliva, that is what I have been told.

Hi Patricia

Oh yes perpetual runny nose, thought it was just me.

Hi Heather

Sorry about your husbands diagnosis.

For some people Prednisolone works for other Gabapentine  (French spelling on both) I have tried both and for me they both work. Both are prescription, at least here they are.

Best of luck  Sue

Thanks for the info John

Looked it up, there is no way I would be able to have that out here because of supplies if they were even available, live out in the sticks and often blocked in in the winter too.  Sounds ideal though.

A bientôt  Sue

Hi JillT

Although your reply hasn’t yet come up on the forum I am replying anyway.  Found it very interesting and promptly looked at my finger prints, true I haven’t got any except for first finger on left hand.  Just think what we could do if dishonest !!! lol. My fingers are only fat downwards and as my nails seem to be exceptionally s…[Read more]

What sort of POC have you got John that goes to 15 !!!  Mine is a back pack Respironics Simply Go and only goes to 5 not enough for me now.

Hi John

You sound like me, doesn’t matter how little I do I drop to very low 70’s or even into the 60’s even with my POC set on its highest, number 5. I have to stop and wait for my levels to go up to 91 before I can start off again for another couple of hundred meters  Not sure if an increase in flow will work for me.  Received my appointment w…[Read more]

Hi Charlene

Never use the POC inside so no fire risk anywhere and only go out once a week usually.  Thought of the degradation but the cannula is changed regularly and I haven’t noticed any damage to it, here I am never in a crowd. I have no options other than the POC outside.

Hi Charlene

Calmed down somewhat.  Doctors here a classed as gods and you don’t argue with them, trouble is I do research on what I have got as it is fairly rare, and they don’t like it. The proff always tells the students that I believe the Internet,  No I research and believed the first scan results and the doctor that sat me down and c…[Read more]

I am so p……d off, just been to my ordinary doctor to ask to be referred again the a Dr locally who was the first one to give me oxygen, need to go up, my doctor gave me an open copy of the discussions between my pulmonary professor and his colleague, when reading this I was shocked, had always felt I wasn’t being treated for what I have, CPFE…[Read more]

When I say a little Vicks vapour rub I really do mean a tiny bit, just the merest little smear, too much and the vapour hits the back of your throat and of course you will cough.

I don’t know if this helps or not but ever since the beginning of the pandemic I have been using hand sanitizer on the nasal prongs of my POC, before use and after, I just let it dry a little, as I always assumed that it didn’t filter out the virus, is this a safe practise, no idea but it eases my mind.

My appetite has only recently started diminishing in the last couple of months (now at stage 4 of CPFE) have always refused to take either Esbriet or Orfev so it has to be the disease, the only thing I take is Prednisone which can make you so hungry you could eat all the neighbourhood scabby dogs. My taste is definitely changing, things I used to…[Read more]

Hi

The nasal drip causes a lot of coughing, I have found that just a tiny little bit of Vicks vapour rub just around the nostrils helps dispel it and along with it the irritation cough, nasal sprays unfortunately I have found just keep the problem going.  I always have water to hand at night plus if necessary a cough syrup, I use Bronchocod.  M…[Read more]