Need help in understand treatment of PF

Hi New to site

Diagnosed with emphysema and pulmonary fibrosis three days ago. I gave up smoking 25 years ago but maybe my old job has caused the PF(toxic smoke) or the fact that I became so allergic to chicken that I had to stop keeping them, that is being tested in case they are the cause of the PF. Must admit bit scary as all alone abroad having been widowed 7 years ago. I speak the language fairly well but medical jargon is NOT the same as everyday speak and I am afraid of missing some thing important and also I find that I go *foggy* and can't think straight when I can't breathe, so if the community doesn't mind I would like to pick peoples brains as and when I get more information about my treatment which seems that it will begin in earnest at the end of August when all the specialists come back off their holidays, at the moment I have been put on Prednisolone which I must admit is helping enormously, not longer coughing after the slightest effort and I can breathe more easily

Thanking you in advance

[sassy59]

Welcome reglois, I’m sure you will get some helpful replies soon but I just wanted to say hello.

Things must seem very scary at the moment and I hope you find out soon what’s caused the PF.

This is a great site and good to have you on board. Xxxxx

[Hidden in reply to sassy59]

Thank you Sassy. Luckily, I suppose, I am not a worrier I just need to know how to help myself for the better so that I can out live my rescue dogs, I am on my own here, me losing the battle would be the death knell for one of them as she is so frightened of the world after severe mistreatment it would be unfair to try and re home her, I take on the worst cases possible being an ex dog trainer, have had her for 7 years now and she is still terrified. The others, one will not last out this year, old and ill, another with PTSD will go and live with his brother if the worst happens and the youngest (8) will go to my daughter.

[sassy59 in reply to Hidden]

I wish you well reglois as you’re doing a wonderful job. Take care xxxx

[sarcoid1234]

You don't say what dose of prednisolone you are prescribed. This is just a thought: When I was on 30mg for 6 months a few years ago I found difficulty in getting to sleep. This seems to be common with people who take prednisolone. I found that when I took them at bedtime I got to sleep quite easily, BUT if you are taking them in the morning at present you will need to take them an hour later each day until you get to late evening. You could talk to your doctor about that.

I have been told that if I have been taking prednisolone for more than 5 days and the doctor tells me to come off prednisolone I must wean off (take perhaps 5mg less for a week,) and 5mg less the following week and so on.

If you need to take prednisolone for several years, ask your doctor if you should also take something to keep your bones strong, as prednisolone may cause osteoporosis. Nobody told me that!

[Hidden in reply to sarcoid1234]

Hi Sarcoid Thanks for replying.

On a 20mg dose, only half a day, was on a high dose (6 months ago, weaned off) before and they had no effect what so ever, seems you have to get the dosage just right for the condition, for it to be effective. Have insomnia anyway so didn't notice any change there.

I probably wont need to worry about the osteoporosis, old and with the two lung diseases don't think I have enough time to worry about that, have very strong bones so far and I am 72. Apparently we make our own steroids in the morning that is why told to take them in the morning as it strengthens our own system.

[stamford1234 in reply to sarcoid1234]

I can't take prednisolone, the last course I took kept me awake for three nights in a row but I was in a pretty bad way. Anyway that was just me. I also take a vitamin D to look after my bones. I do listen to my Doctor