FIBROSIS OF LUNGS: I HAVE INTERSTITIAL... - British Lung Foun...

British Lung Foundation

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FIBROSIS OF LUNGS

NOSMO
NOSMO

I HAVE INTERSTITIAL LUNG DISEASE AND AFTER 16 MONTHS OF TESTS STILL BEING MONITORED AND NO MEDICATION SO FAR NEST TEST JULY2018.I CAN NOW ONLY WALK 50 YDS AND GOING DOWN HILL RAPIDLY.I ASKED IF I COULD GET PREDNIOLONE AS IT HELPED AT THE BEGINNING BUT CHEST DOC SAYS NO I REALLY NEED TO KNOW IF I CAN BUY IT PRIVATE OR ALTERNATIVE??CAN ANYONE HELP OR GIVE ME SOME ADVISE?MY QUALITY OF LIFE IS NOT GOOD SOON BE HOUSE BOUND .

14 Replies
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Welcome NOSMO, I'm so sorry to hear you are having such problems.

It is not recommended to buy prednisolone, or indeed any medicines, from the internet, especially if your consultant has refused to prescribe them. It may be that it is not a suitable drug for you personally.

I suggest you call the BLF Helpline (03000 030 555) on Monday. I'm sure their expert nurses will be able to advise you and perhaps suggest questions you could be putting to your GP or consultant in order to get effective treatment.

Best wishes, Annie

Hidden
Hidden

You would need to be very careful if you started to use Pred NOSMO. Firstly you doctor would have to monitor you, especially when reducing your dose. Also, depending on the dose and length of time using it, you would be high risk for Osteoporosis.

NOSMO
NOSMO in reply to Hidden

I DO KNOW THE RISKS BUT AT 80 NOT BOTHERED ABOUT OSTEOPOROSIS.WISH I COULD JUST GET A TRIAL TO SEE HOW I GOT ON WITH SMALL DOSE OF PREDNISOLONE.THE FIBROSIS SEEMS TO STOP LEGS FROM WORKING AFTER 50 YDS DUE TO LUNGS SHUTTING DOWNFEEL I AM ON ABOUT 20% NOWOK IF NOT DOING ANYTHING WHICH REQUIERS EFFORT.YESTERDAY SWEPT UP LEAVES 5 MINUTES AND KNACKERED.WILL HAVE TO CALL IN HANDYMAN NOW OR LET THINGS PILE UP!! THANKS FOR YOUR REPLY TOMX

Hi Nosmo, sorry to hear that you are going down hill quickly. Can I check what you have actually been diagnosed with? I have pulmonary fibrosis and my oxygen saturation levels drop considerably (low 70s instead of 100%) when I walk around never mind exhert myself, which leaves me very breathless, and makes me feel unwell. I have been given oxygen for when I get up and move around and it really does help considerably I am able to do much more as I am giving my organs/muscles/tissues/brain the oxygen they need. I have a machine that runs on electric in the home and portable oxygen cylinders with a conserver that gives me oxygen when I breathe in that I can use outside the home. You will need to speak to your specialist or specialist nurse team about this. If they say that you would be able to use oxygen they will put you in touch with your local oxygen team. Regards Karen

There are lots of places you can buy it but only if you live in the ex Soviet union countries that are still outside the EU and even then you might get fake pills. But do not even think about it - the previous posts tell you why - and I will add my two penny worth to the mix - buying it yourself could kill you if you buy from the web. Many of the online drugs have been shown to contain deadly mixtures of chemicals. Do as the other posts say and speak to your doctor but under no circumstances buy from the web or any other place.

I have been in same position as you for many years and told nice guidelines do not allow you to be given the drugs that slow down lung deterioration until your sats are at least 80 i did not qualify as mine were 91 so i am still struggling with no treatment .

YES GET A SECOND OPINION FAST

Hi Nosmo. You need to ask your Dr to refer you to a specialist hospital if it ‘s IPF you’ve got. If it is there are two treatments you can have to slow the disease. One is Perfenidone and the other Nintenidab. I would definitely ask for a referral to a specialist centre if it is IPF. However you can have fibrosis of the lung if you have been a smoker but that doesn’t mean it’s IPF. Also if you’ve worked with hazardous materials it can cause fibrosis.

Hello Nosmo Poor you! I have been in exactly the same position. I was diagnosed with interstitial lung disease over a year ago, and the consultant did various tests, scans etc, to try and establish what exactly I had. I was finally told in January that I have pulmonary fibrosis and now I cannot walk any distance without becoming breathless. I also have absolutely no energy whatsoever. My gp gave me predisilone in January, and I felt hugely better, but I could only take it for 6 days (6 tablets a day). Once they stopped I went back to breathless and coughing - have you got a cough? However, I asked for a second opinion, and saw a consultant privately, who has given me a steroid inhaler, which I started today - and this makes me feel very much better, not nearly as breathless as I was. I still have the cough tho'

Let me know if you have a cough, and I would ask for a second opinion - I got a result. You can probably do it, without having to pay privately?

Regards

Lynne

NOSMO
NOSMO in reply to Lynzilou

HI LYNNE I DO NOT HAVE A COUGH BUT ON GETTING UP A BIT OF FLEM.IT DOES NOT HELP I HAVE NOSE BLEEDS DUE TO HAVING AF EPISODE LAST YEAR PUT ON ANTI BLOOD CLOT PILLS SO CONSTANT NOSE PROBS BUT AFTER 3RD CAUTERISATION SEEMS TO BE BETTER.I STILL DONT KNOW WHICH TYPE AND NEXT TEST IS IN JULY.I FEEL I AM TOO OLD SO THEY DONT REALLY CARE I HAVE ONLY SEEN DOCTOR TWICE IN 6 VISITS..I WILL ASK ABOUT STEROID INHALER BY MY OWN DOCTOR.THANKS FOR YOUR HELP YOURS TOM PS I FOUND MY LETTER OF 15 10 2017WHICH THE TEAM SAID I MAY HAVE FIBROTIC NISP BUT THEY COULD NOT RULE OUTIDIOPATHIC PULMONARY FIBROSIS BUT MAY NEED TO HAVE LUNG BIOPSY,AND IT IS A RISK SURGERY SO THEY MONITOR ME UP TO NOW.NEXT CHECK UP NOT TILL JULY AS I HAVE HAD TWO SETS OF TESTS SINCE THIS LETTER..ONE LAST QUESTION DO THEY GIVE ONE A TIME FACTOR AS TO HOW LONG WE HAVE GOT? YOURS TOM

Lynzilou
Lynzilou in reply to NOSMO

Pleasure Tom. Good luck x

Sorry to hear of you troubles ,don't buy privately as lots of fake meds about causing more problems, Check with BLF advise team for info.Get GP to put you on a RESP team. If necessary get second opinion. Never give up.

Dan

NOSMO
NOSMO in reply to donut43

OK THANKS

NOSMO
NOSMO in reply to donut43

thanks from tom

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