Ipf treatment

[Looseloafers]

Hi all. I am really upset at the complete lack of care, support and treatment for this horrific disease. Surely in this century there should be something other than platitudes and waffle! I think I’m just feeling a bit sorry for myself but really is there nothing they can do?

[skischool]

blf.org.uk/support-for-you/...

i am probably teaching granny to suck eggs here but have you been evaluated for either or both of the two drugs that are used to slow progression?

Best wishes Ski's and Scruff's x

[Looseloafers in reply to skischool]

Thanks for your reply. I have regular appts with my consultant but apparently I am not poorly enough for the medication to help stop further damage! Don’t understand that! Went to a physiotherapist but he said I’m doing the right things by keeping moving! Waste of time! Didn’t tell me anything I didn’t know. My GP is great but again can’t do anything

[Caspiana]

Hello Looseloafers .

I have Obliterative Bronchiolitis and I still have a left lung with this disease. Like IPF , OB causes scarring of the lungs in my case the tiniest airways. And it irreversible. They just hope to slow progression as there is nothing (short of a lung transplant) they could do. I was lucky to have a right transplant in summer. Like Skis had said there are two drugs now Pirfenidone (Esbriet) and Nintedanib (Ofev) that can help slow progression. You may already be in one of these? You should be under specialist care. Are you on oxygen? And have you had pulmonary rehabilitation? Depending on your age and your general well-being, you could ask about the possibility of a lung transplant. I'm sorry if these questions have already been answered.

Thinking of you,

Cas xx 🌟👋

[julierad]

Surprise puts it mildly. Saw my lung doc in Chicago in August and got scrip for cough etc for prednisone after diagnosis of ipf at my 81st birthday.

She didn’t answer my question about oxygen, especially want to know if canned ox like mountain bicyclists use might help at harsh momentS , in addition to the albuterol. She oversees my copd for a few years. Tried Trelegy but was allergic.

[winfar]

I am sorry that i have to agree with all you say. Total lack of support probably depending upon where you live, how good your g.p. Is, how long you wait for appointments to see consultants and also length of time it takes to get results of tests. I understand a lot of people on here will disagree with me as they receive care i could only dream about. But then again, i am 84.

[Blackcat99]

After years of debilitating chest infections, etc., I finally got diagnosis of bronchiectasis 20 months ago, and was initially quite impressed by the way the system seemed to kick in. I was sent for one test after another, referred for pulmonary rehab (definitely the best thing on offer, but only get 12 sessions) Was told that the main thing is to avoid getting any more chest infections, as each one causes further irreversible damage - fine, so how do I do that? After all that, I was given a prescription for antibiotics to take "if required" and left to get on with it. Unfortunately, I've a tendency to allergies, so several antibiotics have had bad effects 😒 GP asked nurses at Asthma clinic to see me for advice re inhalers, but they seemed uncomfortable with this, as bronchiectasis isn't part pf their remit/training.

I - like everyone else on this forum - really could do with having an accessible, local source of support to answer occasional queries and so forth. The BLF helpline is a wonderful resource, but obviously can't be expected to give individual medical advice, so we need to try to push for better services for this throughout the country.

Please don't lose heart, Looseleafers - keep on pushing and fighting for what you need. Good luck and best wishes!

[Looseloafers in reply to Blackcat99]

Thanks for your reply. Living for the moment! Always been a fighter so will keep going😊😄

[Oshgosh in reply to Looseloafers]

Keep going

[Aingeful]

I have IPF too. I refused the drugs due to the high side effect profile.I have managed to stay reasonably stable for 2 years and continue to enjoy life apart from being a bit more breathless. It is possible to live years with this my consultant has a patient he has been seeing for 10 years! I get depressed myself so know how you feel. Every time I get my Christmas decorations down,I wonder if this is the last time!! Hard to do but I try to take a day at a time and be kind to myself.I eat and drink what I fancy and even though on a tight budget ,I try and treat myself occasionally. I fancy a juicer at the minute to try and get a few more vitamins etc into me! 😀