Pulmonary fibrosis

[Gailkings]

Hi. My first post today. I have pulmonary Fibrosis & I don't see many posts for this. I am totaly in the dark awaiting to see specialist in a couple of weeks but I'm out of breath doing the most mundane of tasks. Does anyone know if there's medication that can help with this or will I need to go onto oxygen? I live alone so I'm constantly on the internet & that's not a good idea I don't think!! The prognosis doesn't look good according to that.

[freefaller]

The internet is not always a good place to be if you haven't got a way to check the information with a health professional. Quite often the information is out of date. I am sorry I don't know much about your condition and it would probably be best for you to contact the BLF helpline. And speak to one of the nurses on there. They will be available during normal office hours tomorrow. You can also go onto their website and download information from their website until you get better information from your Docs. It really is not good the way Docs give you a diagnosis and then leave you waiting for an appointment to discuss treatment plans.

[Helen6]

Hi Gailkings, I also have pulmonary fibrosis, diagnosed 3 years ago. You've probably read the depressing stuff about life expectancy, I know I did, but 3 years on i am no worse than on diagnosis. I get breathless going up stairs and hills but apart from that, as long as I take things easy, I can manage most things. I don't use oxygen. There are no treatments to improve your condition but there are 2 medications to slow the progression of the disease (prednisolone and Nintedanib). I take Nintedanib. These medications can only be prescribed by your consultant and you have to meet certain criteria to be eligible (relating to your lung capacity). Ultimately, the only 'cure' for IPS is a lung transplant. Depending on your age, general health and disease progression, you may be offered this option. I hope I have given you some idea of what to ask your consultant. Please feel free to message me if you have any questions.

Take Care,

Helen

[PastMeBest in reply to Helen6]

Hi Helen6 the other medication prescribed by consultants to slow the progression of Pulmonary Fibrosis is ESBRIET Pirfenidone. Prednisolone is a steroid that can be prescribed by your GP.

Regards. John

[Helen6 in reply to PastMeBest]

Of course it is ! - I'm always getting those two muddled up. Thanks for the correction, John.

Helen

[budleigh4]

I imagine your doctor and specialist will prescribe steroids and maybe

Cyclophosamide

Good luck

[sibkev]

ay up i did 10 years with it then transplanted life is brill now getting back to norm so there is light at the end of .use this site for advise dont use net it gets nasty

[Adrie1945]

Good morning. I was diagnosed PF some eight years ago! Believe passionately in maintaining as healthy and active a lifestyle as possible. Still work three mornings a week (as a Personal Trainer) . Daily, and quite high does of Prednisolone, Mucodyne, use a nebuliser preceded by Ventolin daily (maybe!!!) I have been referred for Next stage treatment twice but do not meet the criteria. What lung I do have (50%) is still working too well!!! I do have an amazing Consultant who considers everything but the most important thing I believe is maintaining activity. Yes, my breathing is deteriorating so then we adapt something else. Life is also very stressful (and stress is one of the worst as it works in conjunction with the hormonal system) as my husband has had a second hip replacement and his idea of rehab is to do as little as possible!!! Don't know if this rambling is of any help/interest but I would be happy to chat. There are so many respiratory conditions and we tend to umbrella them all under COPD that sometimes a 'fellow' sufferer can be more helpful. Adrienne

[Gailkings in reply to Adrie1945]

I'm so pleased to hear you are still able to excercise. I admire you greatly. Unfortunately as I have rheumatoid arthritis I've not been able to excersise for a good few years although I do from time to time look after my grandchildren which can be a little demanding. Lol. I love it though. I tend to push myself as far as I can go as I've had RA for 15yrs & the only way to get through it is to push. Unfortunately I'm finding it's harder to push with PF as you just can't breath so you have to stop. Lol. I find that really frustrating!! I'm hoping I get answers from specialist in a couple of weeks then I can come back & tell you were I'm at. Xx

[rubyred777 in reply to Adrie1945]

Hi again, Adrie1945 , I had replied to you on the other post. I didn't recognize your name, so checked your profile out. Your quite the amazing lady. I see you have 50% lung function. I haven't been checked for 2 yrs. Believe I'm 60%. I have copd. I clean a big Pediactrics office. It's quite the workout! I believe I read you're 70 yrs old. Do you believe being so active has kept your PF from getting worse? How is your oxygen level? You have a lot of good advice to share. It's always good to meet inspiring people.😁😁 I put a link on about playing the harmonica, yesterday. It helped the man's breathing a lot. ...Ruby🌹

[Adrie1945 in reply to rubyred777]

Yes, tiz I!!! Seriously ruby red, I feel emphatically that a lifestyle engaging in regular activity is paramount to managing this horrible, horrible disease that I have contracted. Yes, it is of a degenerative nature and no, there's no cure but hey, don't sit back and wait until it hits you!! I have the reputation of being quite a hard trainer but that's because I believe that people in general have no comprehension of the importance of coming OUT of their comfort zone. You're obviously an active lady so would undersywhat I mean. I'm hard on me, I will push what lung I have to its utmost. Get the heart rate up, keep the weight down be kind and generous to this wonderful piece of machinery that we have been given but work it girl!!!! Nice to talk to you.

[Watfordgirl]

Hello Gailkings and welcome. This is a much better place to come than the internet and you'll get lots of information and support.

Just to say that 17th September is the start of IPF week and BLF have new information packs out for patients. It's a good time to get in touch with them.

Take care.

Sue xxx

[Gailkings in reply to Watfordgirl]

Thank you. I will get in touch. X

[Jaynair]

Welcome to the site Gailkings ☺x

[Bagpuss1972]

Welcome gailkings. I have different conditions to yourself but you've come to the right place here for advice, support and friends. I would agree with watfordgirl that BLF is a great resource but do avoid dr Google !

[Hidden]

Hi I have idiopathic pulmonary fibrosis, I'm 31 and diagnosed 9 months ago, I quickly deteriorated and now I am using 15 litres of oxygen 24/7, I am also on the waiting list for a double lung transplant, PF progresses at different rates, mine has been quicker than most, it's very hard to stay active as I cannot breath and I'm on high doses of morphine for the constant pain in my lungs, I'm praying my transplant comes soon, if you need to talk message me x

[Gailkings in reply to Hidden]

I'm so sorry to hear how fast your disease has progressed & I really hope you can get your lung transplant soon. Mine seems to be taking hold quite quick. I was fine in February. Now I can't walk or do anything without being out of breath. I also have rheumatoid arthritis & because one of the tablets I was taking is linked with PF then I've had to come off it so my arthritis is now taking a hold again!! Feel like I just can't win. X

[Hidden in reply to Gailkings]

I'm sorry to hear thay, unfortunately it is a nasty progressive disease, have they said anything abkut having an assessment for a lung transplant? How old are you of you domt mind me asking? Emma x

[Gailkings in reply to Hidden]

I'm 58. I see a specialist on the 15th so I will know more then. Like you mine has come on quite quick. Seems every week I can do a little bit less. I do find though that if I rest completely for a couple of days I seem a bit better for a day or so & if I'm tired I'm a lot worse both with breathing & arthritis. Xx

[Hidden in reply to Gailkings]

Have you been told about possible pulmonary rehabilitation, it will help you keep active taking your arthritis into account it may help, also they can keep an eye on your oxygen saturation levels, it may be that your needing oxygen x

[Gailkings in reply to Hidden]

Hopefully these are all things I can discuss with the respiratory team on the 15th. I know when resting my oxygen levels are about 90. I don't know what they drop to when walking etc. Xx

[Hidden in reply to Gailkings]

Yes it sounds like you are definitely requiring some oxygen, they expect your levels on resting to be above 95/96 so they are most likely to be dropping even lower when walking, but like you said your respiratory team will advise you on this, all the best for the 15th and I hope you can keep me updated, it is nice to speak to someone going thru the same as most people have little understanding of this type of lung disease and it becomes quite frustrating and very lone. Have you got lots of people around you for support? Emma

[Gailkings in reply to Hidden]

I have 3 daughters the closest one lives 20 mins away so not too bad. I also have a couple of good friends so I'm lucky. I'm in a lot of pain this morning in my back. Left side just below shoulderblade. Can't take deep breaths as it really hurts. Any ideas what that might be. So painful when I try to take deep breath. Xx

[Hidden in reply to Gailkings]

I get a lot of pain in my back too, it seems to be my lungs thats the source of the pain because of the scarring and the air trying to get in and out, as the lungs are so stiff from the scarring they cannot expand as well as they should be hence the pain when trying to take a deep breath as we are trying to make our lungs work harder than they are able, I am in constant pain and on massive doses of morphine which I feel smashed most of the time!!!

[Gailkings in reply to Hidden]

Really sorry to hear that. I only get the pain now & again. Don't know how I'd cope if I had it all the time. It's a very sharp pain & quite debilitating. In fact as I'm going nowheretoday & seeing no one I'm not going to bother getting dressed today!! Pain too sharp. I've taken co dude amok & I'll take tramadolin a bit so hopefully it will ease. Xx

[Gailkings in reply to Gailkings]

Sorry. It should read co-dydramol & tramadolx

[Hidden in reply to Gailkings]

It is very debilitating, try and get some rest, I find having a nice hot bath eases it a little I usually have a bath take some morphine then have a sleep on really bad days and when I wake a feel a lot better, the worst of the pain is at night wjen I'm laid down, no sooner have I laid down I'm up coughing and that's when the pain really kicks in, I've spent many a night crying where my lungs have actually cramped up

[Gailkings in reply to Hidden]

Oh that sounds really awful. I feel a bit of a baby complaining now as I'm no where near as bad as you. Hope your ok today. Unfortunately I can't have a bath as my RA prevents it. My arms are not strong enough to lift me out. It was my birthday last week & my mom brought me a wheelchair. I had to laugh otherwise you'd cry. Not many people get a wheelchair for their birthday lol. Xx

[Hidden in reply to Gailkings]

You can't ever feel like a baby complaining I think we have a right to considering the circumstances! Ha ha

As with the wheelchair that did make me chuckle, my husband a few weeks ago said to me come on love I've filled yer oxygen tanks up we going to filey for the day, i said to him i couldn't possibly walk round filey I'd be so out of breath. He said dunt worry love I've just bought you a wheelchair from mobility shop it wor on offer!! Needless to say I did cry not coz I had to be pushed around filey in a wheelchair but from sheer shock at how tight my husband really was hahahahaha 😂😂😂😂😂

[Gailkings in reply to Hidden]

Ha ha. Least he saved a few pennies. Hope you had a lovely day in Filey. He sounds a very thoughtful husband. I got mine so I can go round our local town again. Haven't been for a while. My daughters said they'd push me so I'm really looking forward to it. My pain in back is slowly easing so I can breath a bit better now. Talking to someone has really helped. I have so many questions for respiratory team now & I will definetly let you know how I get on. Do you have to use your oxygen all the time or just when you go out? Xx

[Hidden in reply to Gailkings]

Oh that would be lovely for you to get out and about, it has been nice talking to someone if you ever need just to vent or if your just having a bad day or just feeling generally crap send me a message I'll be around, I really hope your appointment goes well and you get the answers you need. I'm on oxygen 24 hours a day, I'm on 6 litres at rest and when sleeping and 15 litres when walking about and wjen I go to my rehab clinic. X

[Gailkings in reply to Hidden]

thank you. Yes I will text you when I need to vent or just chat. I thought I was feeling a bit better but I'm still struggling. Think it's a day on settee today & catch up tv. Lol. Hope you have a good day. I can't wait to see specialist& find out what help I can get. Xx

[Hidden in reply to Gailkings]

You do right have a lazy day and rest plenty, hopefully you'll be feeling better soon.

Take care x