Hi everyone just an update on my ILD there is not a great deal of talk about this particular lung disease on this site so for anyone interested this is where I'm at . I have now seen my consultant after my 1st initial visit I was sent for various scans ect last week I saw him again and now have a very clear picture of what is going on .The disease I have doesn't effect my airways as with COPD I have a good breath function I take in Oxygen very well the problem is because my lungs are heavily scarred they are unable to distribute the oxygen sufficiently to the rest of my body this results in exhaustion and breathlessness when doing any kind of physical action unfortunately there isn't a cure there isn't anything I can take or use at this stage to help relieve the symptoms .In the future I am advised I may need to take steroids to control the degeneration but it's not something they wish to do at the moment . I was informed the disease is rare and little is know about it realative to other lung complaints .I would be pleased to hear from anyone else who has this and could clarify my points
Interstitial Lung Disease: Hi everyone... - Lung Conditions C...
Interstitial Lung Disease
ILD covers pulmonary fibrosis, IPF and sarcoidosis. My husband Pete has sarcoidosis so has scarring on his lungs, he also has COPD.
More is known about ILD these days and it sounds as if you’re doing quite well apart from the tiredness and breathlessness. Pete takes 10mg steroid each day along with lots of other drugs. He sleeps during the day and wakes up a lot at night. He also gets breathless.
Please make sure your symptoms are monitored closely and take good care of yourself. Xxxxx
Hi there Yes my Consultant says he's suprised and pleased how well I'm breathing at the momment with the heavy scarring but could not give me a long term prognosis I'm not going back untill February for scan and breath test unless I need to He is pleased to say the modules are not cancerous Give my best to your husband thank you for you kind reply...
Wishing you well. Take care xxxx
I’m still waiting to see discuss my uncertain diagnosis with IPF! First consultant says I have it, second says I don’t so who knows... xx
That seems to have been going on for ages Brian. Hope you get a definitive diagnosis soon. Xxxx
Thank you. The suspected IPF diagnosis was given in February, and disagreed with in August by two different consultants. I’ve no reason to doubt either of them but they can’t both be right, so it’s left us very puzzled. I think my next consultant appointment will possibly not be until the end of PR? All a bit confusing xx
Very confusing. Good luck Brian. Xxx 😘
Brian it must be terrible to be in limbo not knowing one way or the other it's disgusting that you are in this situation it's bad enough being ill without the added pressures of mixed diagnosis c ant work out when you see your consultant again but I'd be ringing his secretary and getting seen sooner or go to your Drs and ask them to get you early appointment I know mine would and I know you can talk to the secretary anytime as my wife is on the phone quite frequently for me . Have you had all the scans breath tests ect or are you waiting to go for more
Keep us informed mate
Hello, What do the initials stand for please?
ILD = INTERSTITIAL LUNG DISEASE
IPF = IDIOPATHIC PULMONARY FIBROSIS
Thank you for posting so quickly. I'm learning a lot from this group.
Me too you get more info on here than from your dr
My husband was recently diagnosed with ILD, he’s seeing a consultant of Tuesday; he has a CT scan and a lung function test over the next week or so. Hopefully we’ll then see the consultant again for those results. The ILD was discovered when he was admitted to hospital suffering from bronchial pneumonia. He suffers from atrial fibrillation and seems it was the drug used to treat the AF that has caused the ILD.
That must be devistating for you both to get it this way I hope results turn out ok fingers crossed
Thankyou - we’ve got everything crossed & trying to stay positive! Good luck to you too.
Let us know how he goes on best wishes
Hubby saw respiratory consultant last week, who was somewhat bemused by the timing of the appointment, as further tests had not yet been carried out! CT scan last Friday, lung function tomorrow. Resp consultant said he would arrange to see hubby in 6 weeks - the letter came through for 6 months, so we’ll have to try & get that changed. Meanwhile, he has a problem with his leg & foot (drop foot?), which only came on after his stay in hospital! So,EMG test today, MRI scan next Sunday. Hopefully, soon, after all these tests have been carried out, we might be able to start resolving the various issues - so pleased we’ve got the NHS! Good news is that he’s easing gradually back into work!
I was diagnosed with ILD earlier this year I have reached the steroid stage amongst the cocktail of drugs I take for other things.
I have found it does leave me tired and breathless and affects my day to day living. However there’s always a way round things.
I also have sticky blood and if my blood is too ‘thick’ makes the breathlessness worse.
As you say not a lot is known about ILD and potentially can cover a whole range of problems.
With regard to the tiredness it’s not worth fighting it, it’s your bodies way of telling you to slow down. To give you an example I was away for the weekend and did far to much, when I got home I was on the sofa for two days. Having always been active came as a bit of a shock.
J
I suffer from arthritis and fibromyalgia, so we’ve spent the last 2-3 years learning to adapt and pace ourselves to that; we’ll just adapt again 😊😊. We’ll be glad to get the next few appointments out the way & see what the results show & the doc says; at least we’re now over the initial shock!
Thankyou for your reply it's not easy to get legitimate info so it's good to here from someone I hate to say it going through the same . I have been suffering for a year before I got diagnosed in May and am worried about how quickly it will get worse .I have come to terms with the tiredness in my case I'm ok then it hits me like a motorboat running out of petrol
Thank you take care
I have been diagnosed with an ILD @- Non Specific Iterstitial Pneumonia.got this diagnosis about a year ago.
Have also been diagnosed with lupus,what a pain.
So now under rheumatologist and ILD CONSULTANT.theyre not sure whether or not the lupus has caused the NSIP.
this site has been very useful to me,I hope it is as helpful to you
Thank you it's all very mindbogling the info put there is very hit and miss I appreciate your input
take care
The lupus uk website has loads of info,I also look at the British lung foundation site.
I don’t look at all the random websites that pop up
Cheers thanks I will have alook
Hi, my partner has quite advanced ILD with underlying sarcoidosis and also suffers with autoimmune haemolytic anaemia- all autoimmune related diseases. He’s only 52 and has deteriorated rapidly within two years-he’s always been fit and healthy, never smoked and he worked extremely hard all of his life. Sadly, he’s gone from being a a professional singer and lorry driver to retiring 6 months ago. The tiredness and extreme breathlessness has been crippling and we’ve had to make massive changes to accommodate his needs. ILD is a dreadful disease and the exasperations seem to creep out of nowhere! He’s currently in hospital after contracting pneumonia and is on massive doses is steroids (90mg) to help control the symptoms, as well as IV antibiotics to support his immune system as his steroids and immunosuppressants are sapping his own virus killing cells. He is so positive and keeps as active as he can but we take each day as we can and fight all the way.
He is on the lung transplant waiting list (listed 01/04/19) and we have everything crossed that a suitable donor will be found in time, he is currently well enough to be still listed, but it’s a fine line to be considered ‘too ill’ to recover after surgery.
My advice would be: Stay as active as you can, listen to your body, rest up when you need to and seek as much advice as you need. We have been lucky enough to have fabulous support from both haematology and respiratory teams as well as great advice from the oxygen clinic.
Wishing you lots of luck for the future-it’s a tough disease for all involved! Xxx
Yes it’s a really difficult disease to cope with.
At first I couldn’t understand why I could walk upstairs ok.but after I got to the top became increasingly breathless.
I understand a bit more now,don’t try to push myself- it doesn’t work.
I have NSIP and have also been diagnosed with lupus.
They don’t know( or aren’t saying) whether or not the lupus has caused the ILDhave had first lot of immunosuppressants. They affected my liver,so have had to stop them.Now waiting to go on mycophenalate.
So,just got to struggle on from day to day.
Hope your husband is seeing some improvement
My dad is also awaiting lung transplant, it really is a tough disease to have. I wish there was more research and more support for those affected.
Wishing all the best to your Dad .I hope your all getting the support you all need .I've just spent 3week out of 6 on a pulmonary Rehab course where there isn't anything talked about ILD .All they say is were sorry but there is very little knowledge which is no help at all to me
So sorry to read about your partner 52 is no age to get this . I hope he gets the transplant he needs fingers crossed .It is a very cruel illness I am lucky to be in the early stages but I do fear how rapidly it can change ,it's not made easy by the little knowledge they have regarding the disease and can't give definate answers which must be frustrating for them .
I really feel for you too as it also affects those around us like yourself you have a lot to cope with and it can be forgotten you also need help to deal with it too
As I was in the building trade and loved the trade with a passion all my life I was so gutted to have to finish working and find this benifit system totally bemusing and degrading having worked from the age of 15 never out of work luckily I'm 63 now so I've got it later than some . But I know where he's coming from him being a lorry driver hard graft on the go deadlines to meet being the go to man plus his love of the singing stopped by this devistating illness Thankyou for your input as I am finding it hard to cope with and find the info I need .
Please pass on my best to your partner and let us know how he's doing it's a shame there isn't an ILD site to go on for suffers of this
My thoughts are with you both stay strong take care both of you xxx
I was hospitalised last year with pneumonia and was told I had Interstitial disease. I have had 3 Pneumothorax in the past, Emphysema for 15 years roughly and just diagnosed with Lupus and Rheumatoid Arthritis.
Wow you've not had it good
I have IPF - and your description of how the tiredness hits (I have come to terms with the tiredness in my case I'm ok then it hits me like a motorboat running out of petrol) is how it feels for me! Family and friends find it hard to understand how I can be fine and then within minutes exhausted.
I haven't yet seen a consultant - a GP gave me the diagnosis in early September, and I have to have lung function tests and more blood tests before I can be referred.
Yes the tiredness is a thing my wife doesn't understand It hits me so quickly I have to lie down and I just fall to sleep it is only around a hour then I awake ok . Make sure they give you a thyroid function blood test too I'm sure they will but best to ask .l hope things aren't too bad for you please keep us informed how your going on ...take care
Hi , always sorry to hear someone else has this condition . Shocked when diagnosed five years ago at age of 62 , as never smoked or drank and never had any bad illness . Reliant on oxygen 24/7 for last 18 months , still relatively well and can go out with backpack to carry cylinder .Still find it hard to come to terms with how quickly i get out of breath .Treatment began with prednisolone and now take azathioprine as well , although it's probably fairer to say we are being managed rather than treated , as you correctly say there is no cure . Take good care of yourself and try to be positive .
You are right about management of ILD, There’s no cure at this time.
I have NSIP diagnosed last year,following on from this,I had a diagnosis of Lupus this year.
Also not curable,hopefully manageable.
Awaiting different medication,Azatropine affected my liver.appointment end of October.
It’s good to hear a bit about ILD.Its usually not mentioned much.
At present I don’t know what is causing my fatigue.whether it’s lupus or NSIP.I don’t think the drs know.they tell me I’m very complex!
It’s really frustrating, I worked until I was nearly 67, loved my job,NSIP PUT A stop to it.
I just grateful that this didn’t happen till I was older.family grown up mortgage finished etc.. I regret that I haven’t got the energy to do what I want to do with my grandkids. Have to do less energetic stuff. Very frustrating,as I have rushed about all my life. Have to adapt.
Hi there thank you so much for your response may I ask did you just start off reasonably ok at the early stage as I apart from the things I've stated or was you bad from the start sorry to be so blunt reason I'm asking is I seem to have got a little worse with sore throat and dry cough since the diagnosis in May when I asked the consultant last week the prognosis of me disease he could not not tell me hope this makes sense. It seems such a rapid detteriation in your case do was you in the building trade or similar have they any idea how you come to get this ? Lot of questions I know but it's only from people like us that I can find out anything current .Cheers my friend I will understand if you don't wish to answer but thanks for your comments
I have it too, 26 years old. Also experience breathlessness, constant dry cough, fast heart rate and easily get tired from anything and everything. Bleh. Doctors are no help. Oh and tightness in chest feel like I can’t get a proper breath.
Hi Mishycake When I read story's like yours getting this horrible disease at your age it makes me feel very humble at 63 we know something's going to get us It is such a distressing illness everyone is different we are all clubbed into this IDL class but have all contracted it in so many several ways and we all have different treatments .The hardest thing for me is the fact all my specialist say there is little known about the disease as apposed to many others . That's why I posted on here as there doesn't seem to be many post about it asuch as COPD . Having read so many of the heart wrenching posts now I seem to think I'm just in the early stages of the disease but just since I got my diagnosis in May I've noticed the fatigue is worse my dry cough is more frequent and I'm getting pain round both sides of my back and round to my chest it feels like I've been kicked by a donkey I am so sorry to hear you don't feel your Drs are any good . I have had a great service at my hospital and feel they are doing all they can I'm just waiting for a date to start a 6week course on dealing with my illness meeting with Drs ,care workers nurses dieticians ect . I am a positive person normally but because I've got something we haven't a cure for and I know what lies ahead I'm a little despondent at this time
Thanks for your input appreciate it so much
Keep posting
Take care
Hi I also have interstitial lung disease mine is caused by a condition called polymyositis which is where your immune system mistakenly attacks you my lung disease was diagnosed in 2017 they managed mine with prednisolone and infusions of cyclophosomide while on this I unfortunately caught sepsis pneumonia and influenza b this caused me to have multiple organ failure and left me oxygen dependent 24)7 I've been very lucky to have good consultants who then swapped my treatment to mycophenalate which kept me stable until this year where more tests have shown I now also have pulmonary hypertension caused by the lung disease I am now on 15mg of prednisolone and recently started rituxamab infusions with this in mind and my age which is 41 i have been referred for a lung transplant assessment as like you say this disease can only be treated sounds like they've caught yours early so with the right treatment hopefully you'll keep stable take care
Thankyou so much Wow you are so brave I do hope it works out for you such a terrible disease untill I posted I had no idea how many complications there is with IDL . I feel so guilty when I read some of the post as mine seems like nothing .My only worry is I'm not having any treatment just told when it starts to get worse they will be giving me steroids treatment .,but all I can think is maybe even though I'm heavily scarred with exposure to various building trade dust asbestos ECT and chemicles maybe it's not bad
Take care really hope things work out for you your so young
Hi I have hypersensitivity pneumonitis- an interstitial LD. Plus allergic asthma has just been added to the mix! What I have found is that Pulmonary Rehab has made a massive difference for me. And I have just started with montelukast (2nd time of trying) and that's helped unbelievably with the crushing morning exhaustion- that was really getting to me. Give everything and anything a try- there's a combo out there that will help. M
Hello there that's what I have been diagnosed with it's the exaustion I find really difficult to deal with when I'm tired bang I'm tired I'm not on anything at the moment there said until it gets worse don't want me on anything then it will be steroids it's so confusing I also have hypothyroidism which doesn't help
Thanks ever so much for your reply
Take care
when I struggle to breathe I assumed it as COPD. how ILD is differentiated from COPD? can it reflect in CT and PFT? if there is trouble in alveoli blood oxygen exchange at least it must reflect in diffusion test Dlco.
I'm not to sure on the answer as my Practice Dr said it was a form of COPD and gave me a spraybut when I saw my consultant he said no it's nothing like COPD cancelled the spray Apparently I can take in the oxygen into my lungs but my lungs struggle to distribute it because of the heavy scarring
COP is totally different to interstitial lung disease. Have a look at the British lung foundation info-really well written. The problem I have found is that GPs are unfamiliar with ILD - if u get to see a consultant you should do ok! My GPs are getting to know me and try really hard to keep me stable. It helps if you get a copy of the Consultant's letter- just ask the Secretary if it is not automatic. The GPs will follow the Consultant s advice- so it is good to know what is suppose to be happening! I have 3 inhalers at the moment and an antimucolytic plus montelukast. Steroids are reserved for flares ups etc. It has been trial an error with near liver failure along the way.
Believe it or not there are at least 150 interstitial Lung Diseases which have now been identified. I am now in my 6th year after diagnosis with IPF . All I can say is try to keep fit, don't listen to other peoples tales as we are all different. Part of the treatment is mind over matter. Enjoy each day as it comes. As with all life some days are better than others!!!
Many thanks exactly what my consultant said yesterday he believes in positive thinking too .I'm just waiting for my inoculations and trying to keep as active as I can it's difficult at themoment as I'm just being treated with Vertigo that's a right laugh
Hi Kakariki
Sorry to hear you have Interstitial lung disease , do you know what your dlco measurement is? You should listen to your body which I’m not very good at. If you need to rest, then rest, until you are feeling a bit stronger. Stomach breathing is extremely helpful for relaxing when your breathing is feeling tight.
I have Interstitial lung disease, pulmonary fibrosis and pulmonary hypertension. My dlco is 36. In my case it’s all been caused by Lupus which I have had for many years, but the lupus was only confirmed earlier this year. I have been prescribed mycophenolate to try and slow the lung progression.
Everyone is different, don't be tempted to read stories on the internet, my consultant said that to me when she diagnosed ILD and gave me the Lung Organisation leaflet. It would be helpful if your wife read the info also.
Even though you will need to rest, try and stay active, make sure you carry on doing things you and your wife enjoy, or start different hobbies. At the first sign of a chest infection see your GP, also make sure you have your flu jab and probably a pneumonia vaccination.
You will already know from all the replies that support is always available on this forum.
Good luck
Meg
Hi Meg I don't know the dclo score I will ask next time I go never thought to ask I know they were surprised how good my breath function test was to say how heavily Scarred my lungs are my ILD is due to working in building trade I'm going on a 6week course soon arranged by my hospital so should get some help .I've also got an appointment for flu and pneumonia jabs I was a bit overwhelmed when diagnosed as I thought I'd just got a chest infection . I've come to terms with shortness of breath it's just the tiredness that's getting to me
Take care
Hi, I have pneumoconiosis and Fibrosis, I worked in the coal mines for 37 years and was told I had mild pneumoconiosis which until 2016 was not causing me a lot of problems and I was living a normal life.
I had a Pericardial Effusion around my heart and they treated it with 30mg steroids and because it was caused by my immune system I was also treated with Azathioprine.
2018 I was told that I also had Fibrosis and that the immune system had effected my lungs and my health started to get worse.
I have been on steroids since 2016 and now on 10mg, they keep trying to reduce it but it makes me worse and also still on Azathioprine. I have used oxygen since Jan 2019 and I also use the Inogen one mobile oxygen when I go out which is a great kit.
I had a bad episode couple weeks ago I was taken to hospital with a collapsed right lung in which they had to fit a drain to inflate it, this has now put my breathing back considerably and their is a 50% chance of it happening again. Symptoms are usually a very bad cough, pains on the side its effected and difficulty breathing, don't be like me and wait just send for the response as early as possible.
I am 62 years old and I hopefully will be put on the transplant list, I try to keep as positive as possible and it really helps me to read these forums and see other people with a similar problem.
Good luck to all.
Morning Maltbyboy love your tag name I sometimes use Oakwell reject lol So sorry to hear your suffering so much it's good to stay positive but difficult at times. You've been in the wars there my friend it's good to get on here and react with others in the same or similar situation .for me it's a great way of communicating as like a lot of us I'm not able to get about like used to we are of similar age I'm 63 but I'm only in the first stages of this terrible disease but I feel myself week by week getting a little worse and that's so scary .62 yr old man and your hoping to go on transplant list there's no justice .Working in the mines did you no good at all same as me with building trade if you need someone to chat with on here feel free to get in touch
Thanks so much for you input you take care
Thanks for that, will keep in touch, let you know of any developments that might benefit you. Cheers,
By the way have you heard of Pulmonary Rehabilitation, I went on it and it was two days a week for about 6 weeks and they help you with exercises and diets.
They also have guest speakers like consultants and dieticians, I found it very helpful as well as meeting other people too.
You can ask your Doctor to put you onto it and also info on this site.blf.org.uk/support-for-you/...
Cheers, Maltbyboy.
Maltbyboy it's funny you should mention this course my consultant mentioned this to me last week and said he would put me on the list I'm just waiting for them to get in touch I'm glad you've mentioned it because I wasn't sure what is was for or if it was any good for me I feel after your input now it will be thank you so much for the link very kind of you
institual lung disease
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