Advice re pulmonary fibrosis

[SuzieA]

my husband has been diagnosed with pulmonary fibrosis and is coughing dreadfully to the point he aches all over. Does anyone have any suggestions regarding medication, inhalers etc. that might ease things. All the medics have said is that it’s incurable and will only get worse which is no help at all.

[CarolMcl]

I find that response absolutely shocking. Yes there's no cure but that doesn't mean it'll get worse, there's medication that can be given. I myself get retuximab infusions which have halted the progress. As with everything there's various degrees of pulmonary fibrosis but as I've said, you can get treatment. I would contact the consultant again as it's your husband's right to know the options available to him.

[SuzieA in reply to CarolMcl]

Thank you for that x

[CarolMcl in reply to SuzieA]

You're very welcome, I hope you both get the information and care you deserve x🌹

[Oshgosh]

I think he needs a second opinion.

There’s medication and other things that can help.

I’ve been prescribed Carbocysteine before I was diagnosed.

For the last 4 years I use a nebuliser twice daily,this also gets the rubbish off my lungs.

I used to cough all the time,the drug doesn’t suit everyone,but it helps me.

When I was diagnosed iiwas told. I had. Interstitial. Lung. Disease and rheumatoid athritis plus other auto immune conditions.

I’m now on Nintendanib,an anti fibrosis drug.you have to be assessed and to fit Nice criteria.

Perhaps you could try to find out how to contact the county respiratory team,mine were of great help to me immediately after diagnosis.

I think you would benefit from seeing a consultant with a more positive attitude.

Please seek more health.

If you ring the British Lung Foundation,you need to ask to speak to a nurse,it takes a few days for them to ring you back.

They will be able to give you more advice than me x

[SuzieA in reply to Oshgosh]

Thank you

[Italia]

Hi Suzie A,

Sorry to hear about your husbands experience. My Dad has it and joining support forums such as this has been really helpful.

The below website is also helpful and gives information about treatments and has a helpful support line.

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

There is an IPF passport you can fill out which highlights perhaps things you should have but don’t. Fill it on and send it to your husbands Dr or Consultant.

shop.asthmaandlung.org.uk/p...

I’m sure you’ll also get some wonderful advice on here also.

You’re not alone, and what you’ll find from the responses you receive is there are lots of people with IPF who are doing well, but the key is to remain positive and for your husband to keep active.

Sending best wishes.

[SuzieA in reply to Italia]

Tyhank you so much x

[canthinkofaname]

Hi Suzie, my sympathies for your husband. I too have IPF and the coughing is the only thing I complain to my consultant about. I am on a care package that includes Nintedanib to slow the progress and Prednisolone to control inflammation. To help with mucous control ( the main source of my coughing), I’m taking Carbocisteine but it does nothing for me. I have recently been prescribed a low dose of Codeine Phosphate. This is supposed to de-sensitise the airways to take away the ticking feeling in the throat. They make you drowsy so I take mine at night. This seems to have helped with my urge to cough though. The other thing i have to limit unfortunately is doing anything that requires exertion (bending down to pick things up for instance, or carrying things) as this sets me coughing very hard (I pull muscles in my back!😩)

[SuzieA in reply to canthinkofaname]

Sounds similar to my husband, the exertion problem. I think he probably needs to go back to see an alternative Dr. Thank you for your reply x

[canthinkofaname in reply to SuzieA]

you are welcome, I hope things improve for your husband. Oh and suggest he drinks plenty of water to help with the mucus build up 😊

[Izb1]

What a dreadful attitude from a doctor. I would go back and request to see a pulmonologist that can offer medication. I dont know enough about ipf to advise you but am sure I have read that steroids can help and there are new medications coming out all the time. Dont be put off by this jobsworth x

[SuzieA in reply to Izb1]

Thank you

[Xrossstich]

Helo SuzieA, my husband is exactly the same, the coughing is driving him mad as well as exhausting him, how he doesn’t bust a lung or something I don’t know. He’s on no medication or help for this pulmonary fibrosis. He has an appointment on 21st February to see the lung clinic at the hospital so I’ll make a note of the suggestion on your site. My husband had pneumonia the 15th of November and has got a lot worse since with the coughing. Regards XrossStitch.

[SuzieA in reply to Xrossstich]

Thank you. I hope things go well for him and he gets some help x

[Vicki1234]

Like any other respiratory disease, you can't cure it but you can maintain it with maintenance drugs. Suggest inhalers and nebulizers.

[SuzieA in reply to Vicki1234]

Thank you

[Springer2]

Hi SuzieA, Sounds like your Dr/Consultant isn't very helpful as a former sufferer of IPF I sympathise greatly. Try asking your Dr/Consultant for Oramorph this worked instantly for me my cough was so bad it felt like concussion with all the brain shaking. Hope this helps, I say former sufferer as I am one of the lucky people to receive a transplant good luck and keep positive. Dave.

[SuzieA in reply to Springer2]

Thank you for that, I’m so pleased for you having a transplant. I’ll mention Oramorph to dr when I go with him tomorrow x