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[Xrossstich]

my husband has Pulmonary Fibrosis, the coughing is awful & he’s bringing up slight phlegm. We’ve asked for “puffer” but they won’t give him one, WHY??? My friend with COPD has a puffer and swears by it reckon it stops all the coughing in the mornings. My husband is at his wits end with the coughing every time he moves. Thank you.

[peege]

Hi, I dont understand why. Hopefully members with PF will see your post and give you some ideas. You could give the helpline a call 0300 555 2800 uk office hours and ask your above question, they have respiratory trained nurses who could explain why - if there is a reason why and not your doctor just being bloody minded.

Have a look at the N.I.C.E Guidelines for an idea of expected NHS treatment for PF.

PF, COPD, Asthma and bronchiectasis (to name but 4 lung diseases) are different although some cross-over symptoms and cross-over treatments. We've a few PF members so I hope they come along soon. Best wishes, Peege

[Xrossstich in reply to peege]

Thank you.

[CarolMcl]

Hi inhalers don't work for PF. Have you asked your doctor for pulmonary rehabilitation or anti fibrotic drugs for the PF? They're not pleasant and can have awful side effects but they do work for a lot of people 🌹

[Xrossstich in reply to CarolMcl]

Thank you.

[Yumz199725]

They should definitely give him a puffer that's out of order x definitely see a GP about this 😢

[Xrossstich in reply to Yumz199725]

Thank you

[AngieB72]

Hi, I have PF (diagnosed 15 years ago), inhalers don’t work for PF which is why they don’t prescribe one. If it is the cough that is really annoying him then he could ask for oromorph as this helps many PF patients with their cough. Also Carbocisteine may help thin the mucus to help ‘bring’ it up.

You have to remember that COPD and PF are not the same, unfortunately they are still trying to find medicines that help PF as there are only two that slow progression at the moment. Also a lot of healthcare professionals don’t have a great deal of knowledge or experience with PF. This it is why it is important to ask your pulmonary consultant questions when you can.

[Xrossstich in reply to AngieB72]

Thank you

[Mavary]

Hi! My Husband had Pulmonary Fibrosis and he couldn’t understand why he kept coughing too. COPD is a completely different illness. That’s why an inhaler won’t help him. In fact it might make him cough more. Is your Husband under a hospital Consultant. That’s where he needs to be. He will get the best answers from them. If he’s not already referred to a consultant I would ask if he can be.

[Xrossstich in reply to Mavary]

Yes he is under the hospital but he only gets a yearly checkup and the last one was a phone call only! Our localDoctor is very good but doesn’t seem to have much knowledge of PF. Thank you.

[Ern007 in reply to Xrossstich]

Read this link and you will find "Budesonide, an Inhaled corticosteroid (ICS) is most commonly used in the treatment of idiopathic pulmonary fibrosis"

ncbi.nlm.nih.gov/pmc/articl....

[Xrossstich in reply to Ern007]

Thank you.

[Mavary in reply to Xrossstich]

I think you’ll find that’s all they do. Once a year appointment. Your own Dr can refer you to take him back before the year if you are worried. Maybe you should get your Husband to see the Dr to see if the can give him something for his cough. Like someone else said they may give him some Oromorph which can help calm the cough down. There are other drugs which can be given further down the line.

[cazza34]

I would phone the consultants secretary and ask for a face to face appointment. I also have PF I've been on Nintedanib since last year which is supposed to stabilise it.I get awful coughing whenever I move. I'm on oxygen 24/7. Im also on Oromorph 2 tablets daily which suppresses the cough a bit, I am also on Onhaler ventolin and Qvar. I saw someone above gave the helpline phone number, I would start there, the try and get a face to face appointment. Lots of luck to you both PF is exhausting.

[Xrossstich in reply to cazza34]

Thank you

[strongmouse]

My husband has been diagnosed with pulmonary fibrosis aswell as emphysema and it was the Respiratory Department which suggested that a ventolin (salbutamol) inhaler would help. He was taken off it at the last GP review, but they reinstated it when he said that the Respiratory Department had recommended it.

He also takes medication to help him bring up any phelgm. Can you contact the hospital Respiratory Department?