Idiopathic pulmonary fibrosis

Hi is there anyone out there who has this?

I have been on the anti fibrotic drug nintedanib for one year.

I have recently had a knee replacement (six and a half weeks ago)

[peege]

Hi Bowlmeover, I don't have it myself however, to the right is a section 'Related Posts ' where other members post & reply about it. You can also find out more if you write your ailment in the search bar. A bit lat but a warm welcome to you 😃

[Hidden in reply to peege]

Thank you peege

[Alberta56]

Welcome to the forum.

[Hidden in reply to Alberta56]

Thank you

[cazza34]

Hello I am on Nintedanib and have been on it just overcast year, what was ur question? I'm a bit confused re the knee replacement

[Hidden]

Hi, just wanted to hear from anyone who has IPF or have been through recent knee replacement.

The surgeon was reluctant to do it because I take nintedanib and said it would stop me from healing properly even though the respiratory consultant said it was ok to go ahead providing i stoped nintedanib for three weeks, after A MDM meeting it was decided I could have it done and had it on the 13th June.

[cazza34 in reply to Hidden]

Ah ok, I didnt know it slows down healing. Great news on ur new knee

[Patk1]

Hope yr recovery is going well x

[Hidden in reply to Patk1]

thank you, think I’m getting there, doing my exercises as I was told to do, still early days

[Izb1]

Hi Bowlmeover and welcome to the site. Cant answer your query re Ipf but hope you are getting better after your knee op x

[Hidden in reply to Izb1]

thank you

[Alberta56]

It sounds like it's going well. 👍Keep up the good work. 🙂🙂

[Hidden in reply to Alberta56]

Thanks so much

[Ern007]

Not sure I can reply what you ask for. I have scarring on my lungs with periodic new scarring - A one time I was tested for Lung Cancer but was found to be new scarring.

Is my new scarring " idiopathic" - (Fibrosis) ? I really don't know, I think my Pulmonary Fibrosis was caused by COPD and just maybe asbestos when I was younger (asbestos was never proved).

So to answer your question my Pulmonary Fibrosis - I can't tell if it's "Idiopathic Pulmonary Fibrosis or not - other conditions like cancer was the main issue and the rest of my conditions on the back burner.

The only difference between "Idiopathic Pulmonary Fibrosis" and "Pulmonary Fibrosis" is when a cause for the condition cannot be found. the condition is termed Idiopathic Pulmonary Fibrosis..

In short probably but I don't know for sure, my main symptom is "Dyspnea" some "cough".

Sorry can't be more help.

PS - I was diagnosed with fibrosis years ago -still here

[Hidden in reply to Ern007]

Hi, I had a VATS biopsy November 2022, to confirm what exactly I had before they would prescribe the ant fibrotic drug Nintedanib.

This is a progressive disease which hardens and shrinks your lungs and only cure is double lung transplant . Overall this took nearly four and a half years for diagnosis which is made by a multi disciplinary team.

[Hidden in reply to Hidden]

Must just mention my support group Action for Pulmonary Fibrosis which is a wonderful group we meet every month, full of information on the latest drug trials and so supportive. If you feel you need support ring them for your nearest group. Just Google Action for Pulmonary Fibrosis.

I wish you well

[Ern007 in reply to Hidden]

Yes it is progressive as are lots of lung conditions.

I have not had a Vats biopsy or Nintedanib. I suppose I have two much going on with other conditions.

With a Vats biopsy you know what you have and you are getting treatment.

My symptoms of Fibrosis are Clubbing of toes - Tiredness and Dyspnea .

Dyspnea Could also be caused by heart valve problems and even COPD so I don't know the extent of scarring to be honest but, I keep having to have thoracic CT scans.

I can't say my experience of multi disciplinary team. MDT is good .

Hope your treatment works and any transplant talk is for the distant future,

[Hidden in reply to Ern007]

I was assessed for transplant at the QE Birmingham last year having various tests, but was told this year (3weeks ago ) after my angiogram test I would need a graft on an artery putting me a high risk patient , so not suitable.

[Ern007 in reply to Hidden]

That is interesting.

I have Bladder Cancer and the MDT wanted to remove the bladder and lymph nodes - A huge operation.

I was told no more BCG treatment - but i am having BCG treatment on 1st August.

I think with three heart problem, COPD - I was not suitable for that, and others thought the same. Looks like other treatment are being sources as a 6 hour op and what had to be done, makes me unsuitable.

Point being the best treatment is not always the most suitable or safest option. I am high risk. I hope you treatment works - I understand Nintedanib has a good success rate,

[Hidden in reply to Ern007]

Thank you, at least I had some good news that the fibrosis was stable, there are side effects of the drug, that being nausea and diarrhoea but there are tablets to stop this.

I wish you the best

[Ern007 in reply to Hidden]

Thank you, and you.

[Suzie42]

I have IPF since 2020 was started on nintedanib and stayed on it for 1 year but had too many side effects, so changed to Pirifedene which suits me. I had a bit of trouble with clotting while taking nintedanib as it's a bit like asprin. I had aortic valve replacement before ipf and now have cll (chronic lymphatic leukaemia) so lung transplants aren't an option for me.

[Hidden in reply to Suzie42]

Thanks for your reply, I wish you well

[Blyth1]

Hi, I have Hypersensitivity Pneumonitis no known cause/ irritant. Had it for about 6 years. I have been on long term oral prednisone, unfortunately my lung function has decreased in the past 6 months and I am awaiting a CT scan to see fibrosis status. Talking about starting me on anti fibrotic drugs after my next round of tests. Increasingly breathless and quickly desaturate on normal daily activities. Interested to read how people had got on with taking the anti fibrotic. Take care everyone.

[Hidden in reply to Blyth1]

I wish you all the best, I have been taking it for a year now, 🤞 for you

[Tryphena134 in reply to Blyth1]

I started on Nintedanib March 2023. Started on full dose but after a few weeks the side effects were such the pharmacist at the Royal Brompton suggested I try the lower dose of 100 twice a day.

Most of the time my body seems willing to tolerate this level of the drug. I get diarrhoea every so often, rather than take the medication they recommend I just stop for a week or so to allow the system to recover.

I can’t honestly say there is any improvement but I was told it could slow down the disease progression by up to 50%.

I’ve also been told that if the diarrhoea is persistent the body won’t be absorbing the drug.

I also find my mood is generally a bit lower when I’m on the Nintedanib.

I’ve found it works OK as long as I take the capsule after eating 3/4 of my meal.

I have been diagnosed like you with hypersensitivity pneumonitis- 4 years ago. Was referred to the Brompton March 22 by my local respiratory consultant.

They did a bronchoscopy plus endless blood tests including DNA which has revealed a variant on a gene the researchers are interested in but they haven’t had enough people yet to prove the familial connection.

My local consultant monitors my steroid prescription- Blood tests last year after 3 days of IV steroids followed by a heavy dose of tablets reducing down to 15mg a day showed up pre-diabetes which was alarming! I reduced it down to 5 mg but this left my cortisol levels too low so am back to to 10mg a day currently.

Despite all the meds I know my lungs are deteriorating just by looking at my oxygen levels.

An important factor seems to be jumping on any infection immediately. I have a rescue pack of Ciprofloxacin antibiotics works for me nowadays although I am nervous as so many people report awful side effects.Previously doxycycline worked but I think my body is now resistant to it.

It’s a rotten condition. I lost 2.5 stone earlier this year. My consultant says it’s partly the Nintedanib and partly because the disease increases my metabolic rate. I now eat as much as I can including protein bars every other day and it seems to have stabilised.

Hope some of this may be of use to you.

[Hidden in reply to Tryphena134]

Thankyou for your reply, I had bouts of diarrhoea after about six weeks and feeling sick, but I was able to cope with it, I know it doesn’t suit everyone and man in the support group had to stop after six months due to weight loss. I hope you are able to carry on with the reduced dose as it’s all we have isn’t it.I hope the side effects settle down for you.

Best wishes

[Blyth1 in reply to Tryphena134]

Thank you for your reply Tryphena. I am trying to get as much information about these drugs from the people who take them, not just the Doctors. Must admit the thought of yet more drugs, especially with such side effects is daunting.

Thank you again for sharing your experience.

[MMaud]

I was diagnosed with IPF, in 2021, following a chest CT, which was done whilst participating in cardiac research as someone without cardiac disease.

I haven't ever had symptoms, but was given the option of Nintedanib straight away, and my lung function was a bit lower than it should be. I have tolerated it extremely well.

I continue to be well, living my best life, having adventures. I'll carry on that way until something stops me, whatever that might be.

[Hidden in reply to MMaud]

Good for you Mmaud! I wish you the very best