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Interstitial Lung Disease

WHAT IS FIBROSING ALVEOLITIS?
Fibrosing alveolitis is a condition which is caused by cells, which are normally involved in the body’s own defense against infection, instead causing inflammation, injury and scarring in the lungs. Scars serve a good purpose in the skin where they heal injured areas but in the lung, scar tissue prevents the lung performing its normal function of taking oxygen from the air into the blood and removing carbon dioxide from the blood.

WHO CAN GET THE DISEASE?
Fibrosing alveolitis seems to be on the increase although it is not clear why this is so. It can affect people of any age but the most common age at which the disease strikes is in the 50s and men and women are equally affected. We do not know what causes Fibrosing alveolitis, but do know that it is not an infection, that it cannot be caught from others and neither is it a form of cancer.

Exposure to certain occupational dusts (e.g. asbestos, hard metal alloy), can produce disease which is identical to fibrosing alveolitis and most people with the disease are or have been cigarette smokers. However, for most  people the specific cause or provoking factors cannot be identified.

WHAT ARE THE SYMPTOMS?
The most common symptom is breathlessness, particularly on exercise such as walking up hills or stairs. Because it may come on in the mid 50s, patients often attribute this to middle age. It is important to stress that the onset of breathlessness should be investigated rather than to assume it is merely part of an ageing process. If it remains untreated the condition can often worsen and lead to permanent and progressive breathlessness. Less common symptoms include a dry cough, and some people may notice a change in the shape of their finger and toe nails. This feature is present in the majority of patients who develop this lung disease.

HOW IS THE DIAGNOSIS MADE?
Investigations will usually include a chest radiograph and a set of breathing tests. These require the individual to breathe in and out of a number of machines which allow an assessment to be made of how well the lungs are working. Blood tests are also usually performed. A special form of X-ray (known as a CT scan) which produces a three dimensional picture of the lungs, may be requested. It may be necessary to obtain samples of lung tissue for examination in the laboratory. This is usually done by bronchoscopy which involves passing a small flexible telescope down the breathing tubes with the patient lightly sedated. For many people these tests provide the necessary information for planning treatment, but in some people a larger sample of lung tissue, taken by a surgeon under a general anesthetic, is needed before treatment can be considered.

TREATMENT
It is very important that the disease is identified and investigated at the earliest possible stage so that treatment to reduce progressive lung scarring can be considered at a time before the patient is severely disabled. The most common form of treatment is steroids, usually a short period of high dose therapy followed by a longer period of treatment on lower doses. A few people may experience side effects: therefore a very careful balance between the potential benefit of treatment and the risk of side effects needs to be weighed up before recommendations are made. Other drugs which may be used to treat the disease are known as immunosuppressants. Once maximum response has been achieved, the aim is to maintain that response while reducing therapy. The need for treatment in fibrosing alveolitis is usually lifelong. This is because the condition is suppressed rather than cured in the majority of cases and the long term aim is to keep the disease suppressed on the smallest possible dosage of treatment. Very occasionally drugs may be discontinued completely but this is  the exception rather than the rule.

UPDATE: We have received numerous requests from web sire readers for more information on ILD. We have added a new article to with more information and can be accessed using following link.

24 Comments
  1. My mother is suffering from ILD. I am wondering if i can meet you with all the reports and learn more about the disease and learn about what she has to do and what she should noe be doing. I want a complete counselling about the disease and the stage she is in now before the next step. I am reading lot of information about ILD from the net. But a complete over view and what are the plans for her for the next few months will be of great help.

    Thank you
    Nithya Jayachandran

  2. You can call up 914424748616 and fix up appointment
    Dr.R.Narasimhan

  3. Hi Dr Narasimhan, I came to you in 2005, my father had ILD too, but not research could be done on him and we tried saving him, we strived for 6 months, but he died because it was too late. Is there any new advancement in this field ? they say simple exercises can help avoid lung diseases and that no severe medication should be taken at the beginning stages (medication such as steroids). I remember being given a steroid for starting stages of asthma, I am fine now, I don’t experience any symptoms, thanks to exercises, although I am visiting a doctor once every year for a check up on lung health in Virginia. I would love to catch up with you sometime over the phone if not in person.

  4. Dear Dr.Narasimhan, My father is suffering from ILD.the onset of the disease was from month of November.now before 1 month it has been diagnosed that he has ILD.In treatment he is having Pirfenex,azathropine,wysolone.Not much investigations has done on him.He has moderate restrictive airways disorder. I work in Delhi as a junior research fellow on Cancer research.I want to know that is there is any Targeted therapy in India? like if we go for a perticular factor like TGF beta which is known to responsible for pulmonary fibrosis.and can do a targeted therapy? Please inform me. I will be very greatful to u.
    Thanks and regards.

  5. Dear Dr. My mother was diagnosed with ILD in 2007 and has been on Steriod and Immunosuppresents since. Recently she has a low sodium level causing mental confusion after administration of Pirfenex. Please advise whether she should be continued on old therapy or Pirfenex ?

  6. My faher 56yrs old. known case of parkinsonism,psoriasis was diagnosed as ILDin march 2011.he was put on perfinex, azathioprine and prednisolone.over last 3 mths there has been sudden deterioration in parkinsonism.is this deterioration because of steroids or perfinex.being a doctor myself i have taken numerous consultations of pulmonologist,but know one was able to tell the exact cause.i will be gratefull if you could enlighten me on this

  7. My grandfather is suffering from ILD.Is there no permanent cure from this disease?

  8. Dear Sir,

    My father is 52 yrs. old.He is suffering from ILD from last 2yrs.Sir, I wanted to know is there any permanent cure for this disease.Please inform me.I will be gratefull to you if you could enlighten me on this.

  9. my mom age47 suffering ild is there any cure from this deseas.last2years she suffering.

  10. my mom is suffering ild from 2 years. digon by dr ali hoshen in bangladesh.age47.she takes perfinex mucinuc emoran& oxygen therapy also but she is not feel better she cant breath easily.what can we do have you any cure.please tell me.

  11. i know ild patient can live 2/3 years is it true.what is the proper treatmen to control this deseas. pls tell me sir.

  12. My mother is being treated for ILD since last 3 months and is on Oxygen. But no improvement. She was given steroids. Want to know what options she has got. thefakeer@gmail.com

  13. My Mother-In -Law is an Asthmatic patient mostly been 14 years,now she is 60 years of age and 3 months 1 and half month back she was diagnostic and had ILD, she is under medication and whole night she uses oxygen mask for the proper breathing as said by the doctor, but she is very upset by the situation that she is going through and i just want to know the best treatment for her and is there any permanent cure for this and can bring her to you for the treatment as we doesn’t know much about this disease and how she should be taken care of… please suggest me something Iam residing over siliguri its in west Bengal.

    • my mother suffering from ild…pls contact with me my no 9851345113

  14. Dear sir, it’s really great to get some information on ILD. I am surprised that we have you in india itself as I have been frequent researcher to this information. I had three people under my care who suffered from ILD and I have started a website related to what were the the do’s n don’ts during their care care.my website is http://www.lungsindia.com dealing more in pulmonary rehabilitation at home. Do visit it sometime.

  15. Dear Sir
    My mother is (at this very moment) under investigation at the Patel Chest Research Institute,(DU). She is admitted their from last 4-5days. Actually she has mild fever and breathing problems from last one and half month which couldnt be cured by any medicines……..She was taken as a suspected patient of ILD, which now the doctors attending her are confirming. She is inlisted as the Director’s (Dr. Gaur’s) case. We are expecting a final report on monday….I feel the need to take best availabe consultation and treatment with hope that God is with us….Any advice, please

  16. My Father is an Asthmatic patient last 14 years,He is 65 years old and he have done LFT Test.Seven years back he is under medication and always he uses puff mask ,tablets for the proper breathing as said by the doctor, but he is very upset by the situation that he is going through and i just want to know the best treatment for my father and is there any permanent cure for this and can bring to you for the treatment as we doesn’t know much about this disease and how he should be taken care of… please suggest me something I am residing over Birbhum its in west Bengal.

  17. Hi Sir,

    We learnt today the my Father was suffering from ILD and was told that this is severe. Could you please let us know if there is any permanent cure for this disease.

    Every advice is help to us. You are one of our Hope.

  18. MY MOTHER IS THE PATIENT OF ILD IT WAS DISCOVERD IN DEC 03 AND IS HAVING PROBLEM IN BREATHING SO IS THERE ANY SOLUTION OR NOT
    IF YES THEN WHAT & HOW IT CAN BE CURED,
    ACCORDING TO ME IT IS SOMEWHAT BLOCKAGE OF LUNGS BY CARBON SO ULTIMATELY THIS CARBON IS TO BE CURED BUT HOW

  19. Dear sir,

    I am Boobalan, 24 years old from Chennai, i was from affected sneezing problem in past 5 years, when i was affect sneezing problems while i take care local hospital treatment temporary for this,. please give permanent solution for me. may i come to direct for treatment.

    note : i am a non-smoker,non-drinker.

  20. my mother is being given steroids for 8 years and i had been watching that she is becoming ill day by day. what to do?

  21. All the below information is being shared from personal experience within the family.

    ILD; (pulmonary fibrosis) is such a disease which was difficult to detect at the very onset as the only symptoms were dry cough and was thus given incorrect treatment for quite a few years.

    Doctors say that there is no cure for this disease but it can only be prolonged. The only permanent cure is a Lung Transplant in which also there is 10 % risk involved. But if transplant can be considered as an option, then it should be done so at the earliest. In our case, we were not aware about lung transplants happening in Chennai till recently and it was too late as ventilation was already administered for our mother as Co2 levels had shot up considerably.

    There are lung transplants going on in India in the following hospitals :

    1. Apollo Hospital, Ayanambakkam, Chennai
    PH- 91 44 26537777
    Dr N Madhu Sankar is the surgeon

    2. Global Health City ,Chennai
    91 44 22777000
    Dr Govini Balasubramani is the surgeon

    3.Yashoda HospitalsSecunderabad, Andhra Pradesh
    91 40 27713333
    Dr AGK Gokhale is the surgeon

    Those people in the earliest phases of ILD can also try Pranayam together with Sujok therapy as well; along with other medications; as this greatly helped to increase oxygen saturation in our case and she could reduce the external oxygen intake coming through the oxygen machine. There is a pro bono doctor in Faridabad (Delhi) rendering selfless service for Sujok –
    Dr. Ramesh Narula, Sec 22, Faridabad
    Ph. : 91 9213188501

    For further information on any of the above, pls. mail at – priyasethiya@yahoo.co.in

  22. sir
    My GRANDFATHER is being diagnosed with ILD. He is in kerala in Tiruvalla Medical Mission Hospital. X ray show sputum and a CT thorax was done. The doctors have diagnosed a possible early stage of ILD. He is 88 yrs old. What must we do?
    Hope you will reply to this post
    Yours Faithfully
    ROHAN

  23. My mother is being treated for ILD since last 4 months and is on Oxygen. But no improvement. she also gone chennai appolo hospital.She was given steroids. Want to know what options she has got. pls tell me its an emergency contact no. 7384640667

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