I.P.F check up.

[Aingeful]

I had my six monthly check up this morning and was once again pronounced "stable". It is two years since diagnosis and according to my consultant things haven't changed much.My main symptoms are an annoying cough,tiredness and sensitivity to fumes and smoke of all types. Sats were 96/97 and lung function 59%(it was 62% two years ago). I feel reasonably happy about this but am conscious of how unpredictable this disease is. My consuìltant said that he has patients who have died after a year and others who are still alive after 10 years! I always print out a long list of questions for him and he answers them for me. He did say that he thought that my decision to refuse the drugs they are trying out was the right one. Seemingly the side effects are making people feel worse! Is anyone else on them? Anyway,it's a case of carry on as you were!!😁

[sassy59]

Good luck to you and keep going. Xxxx

[skischool]

Well Aingeful,as i always say it is nice to hear good news for a change and that lung function decrease is about par for the course or possibly even better than that of normal healthy people without a lung condition so long may it continue.

Best wishes Ski's and Scruff's x

[Katinka46]

Sounds good to me. And I agree about refusing the drugs. What was it, by the way? K

[Aingeful]

There isn't really any treatment for Idiopathic Pulmonary Fibrosis but they are trailing two drugs Perfenidone and Nintedanib. These are supposed to slow the progression but are causing tiredness,sickness,diarrhea and sensitivity to sunight. I decided I'd rather try to keep stable using more natural methods.I don't want to waste what time I have left on the loo or keeping out of the sun!😁

[Katinka46 in reply to Aingeful]

That’s very helpful to me as my condition, Obliterative bronchiolitis, is fibrotic and has much in common with PF. I mentioned to my consultants possibly trying perfenidone but it hasn’t been approved for OB so I can’t. Phew... quite relieved. As the consultant at RBH said “We have very few tools in the toolbox 🧰 for OB.” She wanted me to try Azithromycin. I was on it for nine months last year but felt it was making me more deaf. So stopped.

The deterioration in my condition is very slow but relentless.

K

[Aingeful in reply to Katinka46]

Stable is as much as we can hope for? I still enjoy most of the things I've always enjoyed. I'll probably die from something else!!😂

[christina1947 in reply to Aingeful]

Dear aingeful sounds like your managing your condition well wishing you all the best. I have annoying cough very sensitive to all smoke and traffic fumes can smell a motor bike a mile away and I don’t have IPF take care xxx

[jmsutt]

Was there a specific test for diagnosis of IPF? Curious because when in process of obtaining a diagnosis, IPF was mentioned as a possibility. It was ruled out by 3 Pulmonologists who looked at HRCT, but you know that old devil "mention," always sort of leaves that shadow of doubt. Thanks, J.

[Piperava]

My husband has IPF and has been on Mycophenalate for about 17months and it seems to be keeping things at bay. He also take a 5mg steroid so not sure if it's a combination of the two keeping things stable. He has his 6 month check up with the consultant in July and may be dropped to 2.5 mg steroid. In answer to jmsutt it was after a CT scan he was diagnosed with IPF, previously told it was COPD by our GP. Think when you go to the Dr with breathlessness they automatically diagnose COPD. For 2 years he thought it was COPD until he kept taking repeated chest infections and Dr sent him for a CT scan to see what was causing him to have so many. Think a lot of people may be misdiagnosed. For some reason he wasn't suitable for the trial drugs.

[Aingeful]

IPF makes significant crackling noises in the lungs.Funnily enough it was my practice nurse that picked them up first. The x ray didn't show much,it was finally diagnosed by CT scan. Whenever my GP listens to my chest he says that it sounds like a 12 piece orchestra in there!😀

[micktheknife]

Stable is good Aingeful, excellent even – Any check-up where you are not measurably worse is a right good result - I am really delighted for you.

I have a friend who has IPF (UP) (diagnosed four years ago) which is a tough diagnosis

He has been on the Pirfenidone trial for over two years, and is tolerating the drug very well - his condition has not measurably progressed in over two years.

My tuppence worth on the treatment front is that not everyone gets problems with drugs, and if I had that diagnosis I'd think very, very carefully before refusing it over something which "might possibly" happen, after all if it doesn't suit them, they *can* stop using it.

I don't have IPF, so Pirfenidone isn't a suitable treatment for me, but I have been on probably every immunosuppressant drug therapy possible for my disease. I have only had one reaction, and that was after two years + on Prograf (Tacrolimus) - I started getting the shakes in my hands. Consultant immediately stopped it, and after a few weeks I went back to Mycophenolate. No problems since, except for some extra err “bathroom” breaks initially, and no change in condition progress.

Best of luck to you on whatever course you follow.

[Aingeful in reply to micktheknife]

I agree Mick, I did think long and hard about going on the trial.I also travelled to the hospital in Liverpool where they are testing the drugs. I was given all the info and by the same token can also change my mind and take them later if I want to. From past experience I am highly sensitive to all drugs and even a couple of Paracetamol can make me feel really ill.I rarely take anything at all now and have always preferred alternative treatments. The only thing I don't take chances with are antibiotics. My reasoning is that they are not prescribed unless really necessary. Having said that, I was ill for months last year after a course of Metronidazole and lost nearly a stone in weight. They cured the ear infection but seemed to destroy my digestive system in the process!! But,each to his own? I keep an open mind and will adjust to situations as they occur. Glad they are working out for your friend.