Interstitial lung disease arising in the context of autoimmune features

[AccTea]

Hi there. I’m new to this site and came across it accidentally. In the summer I was diagnosed with ‘interstitial lung disease arising in the context of autoimmune features’ and I’m still at the early stages of trying to understand exactly what this means. There is very little information out there to help make sense of the autoimmune link and my consultant is unable to explain what is causing it or what the prognosis is. Anybody else out there in a similar position?

[Katinka46]

Welcome to this forum. It is a very helpful, friendly and supportive place. I should be interested in knowing a little more about your history and symptoms. Your situation will be familiar with one or two others here. It sounds as though yours is a rare disease. Our lovely Caspiana has a similar condition. She has rheumatoid arthritis that has caused obliterative bronchiolitis. She is taking a little holiday from the forum so she may not respond to you. Is your consultant a rheumatologist? It sounds as if you need a referral to a respiratory consultant.All best wishes

Kate x

[AccTea in reply to Katinka46]

Thanks for replying. I've had a persistent cough since Spring 2019. The lung inflammation and scarring has left me feeling easily breathless. I have hypothyrodism and mild Raynaud's. I feel permanently exhausted and joint problems in my feet (arthritis in toes and plantar fasciitis) means that walking is painful. This has meant my activity levels have decreased, my weight has increased and my lung function has worsened. I am being seen by a respiratory consultant at the Brompton and paid privately to see a rheumatologist. Blood test do not show up autoimmune antibodies but the lung scarring on CT looks typical of an autoimmune disease. Until such times as this shows up in blood tests they aren't labelling it as an autoimmune disease - hence the label I have been given (which from what I understand is more of a research term). I am taking steroids, levothyroxin and mycophenolate and to add to the mix I have just started HRT. My mood is very low and the anxiety of not really knowing what is going on can be quite debilitating. I'd love to know if there is anyone else out there with this label and understand more about what it means. Thanks for listening!

[Katinka46 in reply to AccTea]

I think the RBH is the best hospital in the country for difficult lung conditions. I was referred there in 2017 and I was diagnosed with obliterating bronchiolitis then. It took forever to get that diagnosis because the cause was very unusual and is still being disputed by doctors. I think it was caused by PEs I had in January 2010. I imagine that further investigations for you are being held up by the Covid crisis. That puts you in a very difficult position as all you can do is wait. Very hard. If they are saying ILD then I assume that their investigations have concluded that you have a restrictive condition, rather than an obstructive one. I do hope you have support from friends and family. GPS are obviously struggling to help patients at the moment. Hang in there, get as much help and support as you can and come on here to have a moan whenever you need to.

All the best

Kate x

[Katinka46 in reply to AccTea]

P.S. I don’t suppose you’ve had Covid without knowing it? I assume you’ve been tested?

[AccTea in reply to Katinka46]

Don’t think so. Had an antibodies test a while ago.

[Oshgosh]

Hi,I have Interstital lung disease,also lupus ,rheumatoid athritis,Sjogrens.They feel that the auto immune stuff caused the lung problem.

I’m currently on immunosuppressants for my rheumatoid athritis as well as other medication.

There’s very little information available, I found the lack of info hard to cope with.

I avoid Dr. Google ,I stick To rheBLF and theNHS website.

M also on the lupus form,they have online seminars occasionally,which are helpful I’m 2 years on from diagnosis and managing to get on with things x. Hope this has been helpful.

[Georgiab123 in reply to Oshgosh]

Iv got the same lung disease from medication I think positive and pester doctors for meds I don’t get from hospital it tells me I’m looking after myself

[AccTea in reply to Oshgosh]

Thank you for your reply. I must definitely learn to stay away from Google!

[Oshgosh in reply to AccTea]

I learnt that lesson quite a while ago.The consultant said don’t Google.I replied there’s no information available.she didn’t have a reply for me !

[Hidden]

Welcome AccTea

I wonder if you have familiarised yourself with the information of BLF pages.. link below:

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

lots of reading there which may help you understand things a little better regarding interstitial lung disease.

Hope you find the information helpful.

[AccTea in reply to Hidden]

Thank you. I'll check that out.

[Snowdrops_17 in reply to Hidden]

Thanks for that Bkin! Very helpful information on there! 🤗💞

[Meg52]

Welcome AccTea

I'm sorry to hear about your diagnosis of Interstitial Lung Disease, It's not surprising you're feeling anxious while waiting to discover the cause. I've also got CTD Interstitial Lung Disease, Pulmonary Fibrosis and Bronchiectasis. Mine is secondary to Lupus, I was told most autoimmune blood tests point them in a particular direction towards which autoimmune disease it is. Mine didn't, they showed it appeared to be affecting all my system, which makes it harder to diagnose as so many overlap.

I take mycophenolate, steroids, inhalers plus other medication. It sounds as if you are in good hands as you are also taking mycophenolate and the regular blood tests you will be having will be watching for signs of autoimmune disease. While it cannot repair the damage done, the myco will hopefully stop or slow down the lung disease. I don't know how long you've been taking it, I found it took a while before I realised it was helping with joint pain.

Is your rheumatologist also at the RBH? if so you will be getting the best care. I am also on the Lupus UK site. Quite a lot of people on there have not got a diagnosis of lupus, but appear to be suffering from autoimmune conditions so don't be afraid to look for support on there too, they are very helpful.

In the meantime, make sure you get enough rest, eat well, keep moving and difficult as it is, try some hobbies that would lift your anxiety and mood. I hope you've got family to support you.

Sending you gentle hugs. Meg 🤗🤗🤗xx

[AccTea in reply to Meg52]

Hi Meg

Thank you so much for taking the time to reply to my message. I've been taking mycophenolate for almost 3 months now.

I'm not seeing a rheumatologist on the NHS. I had one appointment which I paid for privately. However, as auto-antibodies were not showing up in the blood tests he couldn't provide any more answers and I have no further appointments planned as I can't afford it.

My respiratory consultant at the Brompton is very good but doesn't feel that my symptoms warrant referral to a rheumatologist. As far as I know there are no blood tests planned unless my symptoms change.

My worry is just not knowing whether my lungs are getting worse or whether the prednisolone and mycophenolate are keeping it at bay. The Covid situation means appointments are frequently cancelled and I'm no closer to finding out what is causing it. I guess what I'm still struggling with is accepting that this is a condition that I am going to have to live with for the long term.

Apologies for the long post and thanks for listening!

[Meg52]

Dear AccTea

No apologies necessary, we are all here to support each other. It's never easy when you get any long term diagnosis and it's normal to feel anxious about it. My consultant told me not to be searching the internet and gave me the leaflet for the British Lung Foundation. I have discovered there's lots of knowledgeable and supportive people on here who are more than willing to help with your worries.

I've been taking mycophenolate for two years in March. Initially, I had to have blood tests every 2/3 weeks and then it was gradually increased to every three months. Mycophenolate can decrease your body's ability to fight infection, so I would be very surprised if you are not required to have regular blood tests especially as you are going to one of the best hospitals. Although scans etc might have been delayed during covid, my blood tests haven't. If you have no telephone appointments booked in the near future, it might be worth contacting your respiratory consultant's secretary to ask about it. I find it's easy not to remember everything that's said when I see the consultant.

It's often difficult to find the cause of Interstitial lung disease, we all want to know the reason we don't feel well, but it's a condition in which they have to watch and wait for a while to see if the treatment is helping. Come on here anytime you need to talk.

Take care. Meg 🤗🤗xx

[AccTea in reply to Meg52]

Thanks Meg. I am having blood tests at the GP surgery but this is just full blood count to keep an eye out for reaction to mycophenolate. I guess, as you said, it's about watching and waiting!