Interstitial Lung disease

[ez2nvmorgan]

Hello I am new to this site I found it after searching for ILD in the Lupus UK site.

I am diagnosed with SLE in 1998 and about 3 years ago I went for a scan for my kidney and by accident a small part of my one of my lung show up in the scan with scarring.

After further investigation my kidneys were fine, but I was diagnosed with ILD. My lungs has scarring and fibrosis.

My problem is I have developed a cough for the past 2 plus years and it is just getting worse especially when I weak up in the morning I will be coughing for a good 30 minutes. When I discuss it with my thoracic consultant he doesn't seem concern. I am not on any treatment for it only the SLE which is hydroxychloroquine and steroids.

It is making me so depressed as I am frighten to go out as everyone start staring and moving away from you when you cough since covid. I have done several covid test and they all came back negative. I have tried all the cough syrups I can get over the counter in the chemist and herbal shops and none helps.

Anyone have any suggestions of treatment that I could speak to my consultant about as I have an appointment with him in the next few weeks. Thanks Polly

[Suzie42]

Hello and welcome to this forum. If you have fibrosis you should have a lung function test and ct scan and you then can be referred to go on treatment for fibrosis. You have to meet NICE guidelines of under 80% lung capacity to go on the treatment. I have IPF and am on treatment for it. I hope you soon get the answers you need and if I can answer any more questions fire fire away. I'm not sure of the meds your on for lupus would be compatible with fibrosis meds, so you really need specialist input I can only tell you my story. Take care.

[ez2nvmorgan in reply to Suzie42]

Thank you for your reply, Yes I am under a interstitial lungs consultant. I had 3 ct scan so far and several lung function test . But all he told me is that it is stable which is good news, but the cough is progressively getting worse I also had sputum sent off for TB and it comes back negative.

[Oshgosh]

Hi,are you under the care of an Interstitial Lung Disease consultant..Can I ask is your cough productive or dry?

[ez2nvmorgan in reply to Oshgosh]

Yes I am under an ILD consultant. My cough is productive in the morning and then it is a dry which can last sometimes upnto 30 minutes with me just sweating like crazy.

[Oshgosh in reply to Oshgosh]

I use a. Nebuliser twice daily,which helps me get the mucus up. I also take carbocysteine capsules twice daily. These thin the mucus and makes it easier for to come up.Before I was on this regime,I used to cough for ages trying to shift the. Mucus l Now. I can go out without coughing and spluttering. I use mints sometimes which helps. I don’t need them at the. Momen

I take antihistamine as I’m allergic to all sorts of things.

I also ha e prophylactic antibiotics,which have kept me free from infection forever 2 years.

Take care

[ez2nvmorgan in reply to Oshgosh]

I take antihistamines as well because I thought it might be allergy but it doesn't help. I will see what the upcoming scan shows and I will suggest carbocysteine if my consultant doesn't. Thanks for sharing some of your time. It greatly appreciated.

[Oshgosh in reply to ez2nvmorgan]

Ihi, I take antihistamines as I’m allergic and it helps my asthma/ rhinitis. Will your GP prescribe Carbocysteine.? The asthma. Ursula prescribed it for me..

[AngieB72]

HiI have SLE and pulmonary fibrosis from mixed connective tissue disease. You need a high resolution ct scan for accuracy diagnosis. My rheumatologist works very closely with my respiratory consultants.

To stop the coughing I use either fisherman’s friends or Jakemans throat and chest lozenges. Also breathing techniques can help. Hope that helps a bit.

[ez2nvmorgan in reply to AngieB72]

Thanks for you advise I will try fisherman's because Jakeman use to help but not any more

[Alberta56]

Welcome to the forum. The others are right. You need to have your lungs investigated, probably by a CT scan.

[ez2nvmorgan in reply to Alberta56]

Thank you, I have several done just received a text with a date for my forth CT chest with contrast.

[Alberta56 in reply to ez2nvmorgan]

That's good. Let us know how you get on.

[ez2nvmorgan in reply to Alberta56]

I will

[Debs_ALUK Partner British Lung Foundation]

Hi ez2nvmorgan

Welcome to our forum. Do post your questions and comments on here and you will get lots of support and advice from our members.

If you would like to speak to one of our respiratory nurses who can help you with questions to ask your consultant, or with the general management of your ILD,

feel free to call on 03000 030 555 Mon- Friday 9-5.

Take care

Debs

[ez2nvmorgan in reply to Debs_ALUK]

Thank you

[Mollie01]

Hi PollyI too have PF from SLE. Following lots of CT and MRI scans I was referred to a specialist in ILD at my local hospital. He prescribed a higher dose of prednisolone (which I have since reduced to a 5mg) and Mycophenolate. I also take chloroquine phosphate for my Lupus. Once I started this treatment my cough went away.

I do have a productive cough in the morning but nothing ever grows when sent to the lab. If I do get a cough Kilkof lozengers or syrup works for me.

Hope this is a little help.

Take care Mollie

[ez2nvmorgan in reply to Mollie01]

Mollie01 thanks you for your suggestion. my consultant is planning to restart Mycophenolate at a lower dose. I am still waiting on the pharmacy to call me. I have now done all the relevant blood test required before taking Mycophenolate..

[Mollie01 in reply to ez2nvmorgan]

Thats wonderful news. It will help your cough and enable you to get out again without coughing - it couldn't be a worse symptom especially these days!! Take care xxx