Hiya everyone, has anybody heard of or got intisitial lung disease. Apparently it’s an umbrella for various diseases of the lung. It’s not the airways as in COPD but the tissues being attacked in and around the lungs. I’ve read it can be brought on through lupus and so wondered if people witH APS had also been diagnosed?
Anybody heard of Intisitial lung dise... - Hughes Syndrome A...
Anybody heard of Intisitial lung disease?
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Ageingfemale
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Whoopsie good start, it should be interstitial!!!!
lupus-support1Administrator
It is associated with systemic lupus erythematosus (SLE).
It is important not to confuse SLE with the lupus anticoagulant test which is a complicated blood test for CLOTTING.
It is NOT a test for SLE and this confuses both patients and doctors.
Approximately, 25% of patients with SLE also have APS (Hughes Syndrome).
With good wishes,
Ros
Hiya. I should have been more clear, I meant SLE rather than the lupus anticoagulant. I have APS and have, this week been diagnosed with interstitial lung disease as well. Specifically, Bronchiolitis obliterans and interstitial pneumonitis. I am now getting an appointment to see a chest consultant.
I am sorry to read this diagnosis. Many people with SLE have lung issues. In fact, I was diagnosed with SLE by a chest specialist before my diagnosis with Dr Hughes.
Here are 2 papers:
ANTIPHOSPHOLIPID SYNDROME
AND THE LUNGS (2016):
pdfs.semanticscholar.org/c5...
CT Findings of Pulmonary Involvement in
Antiphospholipid Syndrome (2013):
journalrepository.org/media...
With good wishes,
Ros
Oh bless you thank you!
I am glad you are seeing a medical professional, do make sure they run blood tests to check your Ferritin, Folate, B12 and also vitamin D, as if Vitamin D is low it can help your body to become more inflamed etc. I hope they give you some help for it. Also do get your Thyroid checked alongside this. erj.ersjournals.com/content...
Unfortunately when ill with Lupus, or Hughes Syndrome/APS often the associated things which could be adding to the autoimmune party, in the way we feel and how well we are can be over looked. MaryF
Hiya Mary, thanks to your advice I use the Medichecks every 6 months for the ultra vit thyroid tests. I already take vit D daily and folic acid, both from gp. The tests are always high for inflammation markers. Maybe now I know why! It just seems never ending. The past few months I know I have deteriorated rapidly, have to use a walker now as I have started having falls. My balance has gone completely it seems. I’m waiting for an appointment at Guys for neurologist because I’ve been having Tia’s again, only now they are wondering if they are epileptic episodes! Ever felt like giving up??
Thank you for raising this topic I am Aps together with Sjogrens / Lupus and were found to have fluid on my lungs quite recently. It was quite a surprise to hear I had fluid on my lungs but explained my laboured breathing - no explanation was given as to why this fluid had accumulate.
I hadn't heard of interstitial lung disease and hope it is something you can be treated for to stop any further manifestation. So glad my case was just a bit of fluid your condition sounds rather nasty.
It has come as a bit of a shock. I get breathless a lot but put it down to my heart. I had a valve replacement 5 years ago and have heart failure. I am waiting for an appointment to see a specialist but on reading up on the internet there is no cure, hopefully there will be medication to, perhaps, help.
I should think it has come as a shock, I would have put it down to the same. Many who have had valve replacement suffer with breathing issues after. I hope all goes well at your appointment, jot down a list of any questions you have to ask - I am sure you have plenty.
Hope all goes well.
Pleurisy is not uncommon in SLE. I have had it several times. Doctors are not usually that concerned because of SLE. It can also occur with fluid around the lining of the heart, pericarditis, at the same time.
ILD is very different.
Be well!
Ros
Hi Ross,
Thank you informing me the fluid on my lungs could have been due to SLE, other than breathing issues I had no other symptoms.
ILD is a different issue all together and not one I had heard of so googled it out of interest. All these strange things we endure with autoimmune disease seem's to be endless.
Found it on a letter from consultant to go. Very worrying..he got 2nd opinion . Indicitave of bronchiectasis they think but not a diagnosis? I'm.poorly now unable to breathe on steroids and pushing to see a lung specialist. Scary. Thinking of you. Good luck. Hope other people can step in with more info and that you have good support
I actually haven’t said much to family yet, still digesting it myself. I am the main Carer for my husband who is bed bound (up for 2 hours a day) with ms. We have 2 Carers in 4 times a day who do majority of lifting etc but there are occasions that I do it and boy is it a struggle!! Up until recently I’ve tried carrying on as normal but this last few months I have been deteriorating quite quickly and I am just realising that perhaps I’m not very well!! Looking on internet I saw that the Imperial college LondonNHS trust have specialist clinics for ILD and include connective tissue/autoimmune ILD so I told my gp and he said great I’ll send you there! He is so good with me, he admits he doesn’t know much about APS and says the local specialists don’t know much either and I’m so complicated he’d rather me go to where APS is understood. So hoping will go to St Mary’s hospital in London. I will of course keep you all updated. Thank you for not letting me feel alone!
I am very sorry that you also have a husband with MS. You aren’t well and you need physical help!
ILD can be treated in a specialist unit! Thank goodness you have a good GP!
No, you are not alone!
With good wishes,
Ros
yea i was the poster child for it. the treatment they gave on me and 4 others has now become the standard of care for interstitial lung disease pulmonary fibrosis. big pain in the butt, spent 3 years on o2 but i beat it! ive run into others with similar conditions and they are getting same treatment i had. it makes me happy to know i had a hand in helping to make their lives better. rituximab & mycophenolate
Oh how nice it is to hear this! Internet says 3-5years life expectancies once diagnosed! I have to stay on warfarin as got metallic heart valve. Thank you!
yea well 3 years ago, my life expectancy wasnt very good, i was in real rough sorts. thought i was near the end of the road at 46, met with transplant team also that would give me a 5-7 year expectancy (at the time). the docs in boston said lets try this and see how it goes we are going to try to raise youre life expectancy. if it doesnt help we can go back to transplant. worked out well for me, and the others ive met. they saved my life. my chest disease dr at brigham and womens recently left to go into practice in texas, still broken up over that, but he left me in better shape.
keep calm and dont let anyone tell you youre done for
Aww thank you for your kind words.
Yes, I was diagnosed with interstitial lung disease in 2008. I also have bronchiectasis which is scarring of bronchi which can lead to lung infections easily. Also have a bit of pulmonary hypertension.
Just 2-3 months ago I noticed my oxygen levels running mostly 86-92 on the little finger clip pulse oximeter. Normal oxygen is 94-100%. I am on oxygen now 24/7. This same situation of hypoxia occurred from 2005-2007 for 21 months and I was on supplemental oxygen during that time. The hypoxia then disappeared and I was no longer on oxygen. I was on Rituxan then and thought that might have improved my hypoxia.
I just hope the hypoxia disappears again.
Nancy in West Virginia
I'm so sorry to hear about your diagnosis.
I had Interstitial Lung Disease about 10 years ago (specifically called "organizing pneumonitis" after 2 biopsies). I have SLE as well as APS. I was put on 40 mg. of prednisone for about a year. My lung doctor wanted to keep increasing the steroid, but my rheumatologist said I should try a drug called Imuran to suppress my immune system. I had to make the choice between doctors at that point because they couldn't agree on treatment. I chose to try the new immunosuppressant.
Although I had a severe reaction to the Imuran, my medication was changed to Cellcept rather than going back on steroids. I slowly weaned off the prednisone for a year, and continue to be on a low dose of Cellcept today. I think this drug saved my life. I went to my *new* lung doctor a few months ago, and am now 100% free of the lung disease. He said my lung function is as good or better than any healthy person my age.
I wish you all the best in your treatment, and hope you're breathing easier very soon.
Thank you so much for the positive message. From what I’d read on the internet, it said life expectancy is 3-5 years, yet you are the 2nd person to tell me all is now okay! Phew. Once again thank you for giving me hope.
Oh you have a lot to deal with with your dear husband ill too. I too googled 3 to 5 years and have been terrified. I had not been referred. Kept asking my rheumatolgist whatvwas going on. Just a week ago he relooked at my notes from ctscan. Bronchectesis..im adking for referral even though im scared to know as my breathing is getting worse. Glad you can "speak" on this forum with keeping it from your hubby. Need to get it out of your head as these things wear you down endlessly. Nice to read a couple of positive posts too. Keep in touch about how you get on. Best wishes.
Hi Cinn,
Did you see a Specialist in June as you said you would? How did it go?
I reread what we spoke about and you need to have a Specialist who understands what APS is.
You should ask for an Echocardiography with doppler as to your breathlessness is getting worse. I do not know if you have got high bloodpressure also. Keep that normal!
Ask also if you have tested positive for Lupus Anticoagulant as you were not sure about your result. Ask for a copy!
Hiya. I go to Guys hospital for haematology and waiting for appointment for neurologist at Guys. I also see Dr Kaul (on list) for rheumatology so I’m seeing APS specialists. It was dr Kaul who ordered x rays and then scans of chest, the results of which is the lung disease. I have an echocardiogram regularly as I had the open heart surgery and metal valve replacement. They have said the aortic valve is now deteriorating and to be honest that’s what I put the breathlessness down too. My blood pressure is always on the lower side, kept like that by the 6 various heart tablets everyday. I know I am lupus anticoagulant, just not sure about the others. I will ask next time I go to London. The last twice the consultant has done telephone consultations to save me the 2 day trip.
Sorry, but I answered CINN 987. Perhaps she has not seen my reply.
Whoopsie sorry Kirsten. x
The you I go to a listed specialist north east England and rheumy also north east. He said indicative of bronchiectstas not clinical diagnosis but I've been ill since... I don't have high blood pressure. I've spoken to rheumy secretary asking for referral to lung specialist. Thank you for your input and advice. They can't test me for La as I'm on warfarin. I've asked both doctors.. I tried side by side testing with coagucheck but totally unreliable in my case. Thanks again
Hiya. The haematologists at Guys can test for lupus anticoagulant whilst on warfarin. That’s why my local haematologist sent me to London.
Thankyou. My consultants weren't interested in looking at this. What difference would it make to managing symptoms do you think. Thanks for reply. Hope u doing ok today
You have been doing a lot I can see. Yes, stupid of me, as you are on Warfarin you can not take LA anymore. Have you got a copy of the bloodtest where they told you about positive LA perhaps. Did you have the other two bloodtests positive; Cardiolipin and Beta-2-Glycoprotein 1 ?
I am glad that you have not high bloodpressure.
Thank you so much. It’s so true that speaking on here, the scary thoughts etc helps so much as, at home, everybody thinks I just carry on and it’ll all be okay.
I am so sorry to hear your battling to cope it is not easy being a carer and being sick your self. I attended St Marys many years ago and found it to be a good teaching hospital that took great interest in rare cases. You are very lucky to have a GP who is understanding and is willing to direct you to the right specialists.
I know at this present time you are still trying to come to terms with this awful new's but I can assure you your not alone. This site is full of information, friendly people who understand that are here to give a comforting word and warm hug when needed. I hope all goes well at St Marys please do keep us updated.
Whoever started up this site deserves an accolade! I do so appreciate the kind words and the virtual hugs too! I will keep you updated and it’s good to know St Mary’s is a good hospital.
I was diagnosed with Interstitial Lung Disease about 3 years ago. I had 6 pulses of Cychlophosphamide not pleasant but OK. The damage to the lungs is irreversible but my last scan, in June, shows it is still stable. It has, however, caused me to have bronchiectasis & so I often get infections. Unfortunately I also have lifelong asthma. I have APS but it is likely that the lung disease is caused by Sjogren's which is seronegative. I am on heparin & steroids. I get very short of breath at times but improve in the summer. I have a lot of 'Ologists'! & an excellent Lung Specialist at Musgrove Hospital in Somerset & see him in joint clinic with Rheumatologist. I am also seen at Guy's. The shock of being diagnosed was worse than so far the reality. I did read a research paper that said autoimmune mediated lung disease often has better prognosis if the underlying condition is controlled. Hope you get some answers soon keep in touch & let us know. If I can help you are welcome to PM me.
Wow thank you so much. I already feel so much better about it, having had such positive feedback on here. It’s lovely to know someone is going through the same thing, ooh not that I’m glad you are suffering 😱🥴🤭!!! I will keep you updated and thanks again
I have APS, Lupus, ILD, UCTD (Connective Tissue Disease), and as of this weeks hospitalization, I get to add A-fib. The Lupus attacked my lungs a few years ago. Steroids, of course. Then tried Myco (Cellcept) to suppress; didn't work. Then rituximab infusions, every 6 months. Seemed to work, though twice now I've gotten flares by the 6th month. I read those B cells it kills grow back by then, but it's been my best course of action. In April a bad pneumonia put me in hospital and it was first time I had to come home with oxygen tanks. In a few weeks my breathing was back to normal and bye bye oxygen tanks.
THE TIP I wish to give: on-line I bought a very good oximeter by Innovo, I think it was about $20 but you can find some other brands for $10. My readings matched the doctor's office visits. It made a world of difference and calmed me down to know my blood was getting enough oxygen. When it dipped into the 80's, I'd put up my feet and breathe deep until it got back up over 92. Big trouble if your blood stays under oxygenated for an extended period !! If you're breathless alot and especially have ILD, I'd want to feel reassured I'm getting enough oxygen. My life went back to "normal" after that month and readings were all 95%-100% oxygenated and I was on 3rd month cycle of rituximab. Last week had mild cold symptoms and also noticed when doing slow walking (blew the dust off my oximeter to try exercising again), blood oxygen started going down into 85-88. I felt a litttle "off" but it wasn't until I looked at my Fitbit that I saw it registered 13 hours of "peak cardio" exercise! Ha, must be broken. But I found four days of erratic 140-170 beats per minute most of the time. My poor heart, which has never had any trouble, was double timing. (I felt a little anxious but really didn't feel it racing that much.) Off to the ER and now on channel blocker to slow down my heart rate and it looks like I'll be hooked up to the oxygen tanks for quite awhile. My pulmonologist agrees with my guess: I wasn't getting enough oxygen so my heart sped up to try to compensate, along with getting A-fib. Probably my warfarin saved me from a clot and heart attack. But the ER doctor said there's not much connection-- that seniors can easily develop A-fib. I'm 65 with at least a decade of inflammation (emboli in both lungs at 55 when APS was discovered). CT scan shows new lung inflammation, so on higher steroids, and I'm getting my infusion next week. My doctor said he might break the rules and give it to me every 5 months since I get into so much lupus trouble by the 6th. I'm shopping now for a meter that I can set alarms when beats per minute and oxygen goes out of range for a little peace of mind since this is probably a permanent situation I have to be mindful of. At least the new pill in my regimen, a calcium channel blocker, is what you're given for bad Raynaud's attacks, so I shouldn't have much problem from my Raynauds now.
WOW!! Thank you for this information. I do have an oximeter and often use it when I get short of breath or feel funny. It can be in the high 80’s for a short while before slowly climbing back up to 96/97. Its more usual to be about 92. I can’t wait to see a specialist and start treating the ILD. This may help my heart problems too maybe. x
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