Is anyone else out there with this condition Adult Pulmonary Langerhans Cell Histiocytosis. I need answers to so many question, the condition is so rare my consultant doesn't seem to know much about it!
Is anyone out there with Adult Pulmon... - Lung Conditions C...
Is anyone out there with Adult Pulmonary Langerhans Cell Histiocytosis ?
Written by
quantum66
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
47 Replies
•
HI THERE I MYSELF HAVE NEVER HEARD OF YOUR CONDITION,BUT MAYBE IT WOULD HELP IF YOU SPOKE TO THE NURSE AT THE BRITISH LUNG FOUNDATION, THEY MAYBE ABLE TO HELP WITH SOME OF YOUR QUESTIONS.
Hello, Thank you for taking the time to reply, I will make contact. Regards
Wondering about googling it?
hello i have had langerhans cell for 2 yrs and you are the first person other than me that ive heard of. like you i dont know alot but id be real happy to chat with you ,i did ask the same question as you about 4 months ago but got no replies. x sharon
Hello Sharon, Thank you so much for taking the time to send me a reply. I have looked into the condition extensively, as my consultant has never met anyone with the condition. Have you had a look at histio.org? It has been the only web site that I've been able to contact people like ourselves! Its based in the States, though. I have an array off symptoms, would be great if we could share this information and together get a better understanding off this disease. It is such a rare disease, particularly in adults, it is a singular organ dysfunction i.e.. the lungs. Some Med Journals say its hereditary and some say its not, my grand mother died from it in 1979, back then it was known as Hans Schullers. I have been told by my consultant, there is no medication, no cure and it gets progressively worse. Smoking feeds it!! So best to stop. I'm considering a second opinion as i am getting no answers from my consultant. I even wrote a journal and filmed a video diary to show him how I live from day to day. He didn't even take the time to listen. Its so important to find a doctor that's keen to know more and will listen. Lets keep in-touch, kind regards Ros xx
Hi I also have Lch
Hi I got told two days ago I have this after always going hospital they finally got it but are still looking into it I'm 20 years old a young mum and really scared doing all research are you better now can this kill me
I got told I have this but not had any biopsies done yet. Doctors seem to be doing tons of blood work. I'm just lost and feel like I'm in limbo. What route are the doctors taking with you?
hi ros i dont know much about this desease either except it was found after i had a lung biopsey i was told my lungs were covered in tiny cysts and i would need 3 monthly scans for a year and that if the nodules improved they would scan 6 monthly and now i only have them yearly ,they said alot of the nodules had dispersed .my consultant gave me the impression that i would not need anymore scans after 5 yrs.i ask what would happen if things got worse ,he said if that happened we could discuss treatment but that it would be very invasive. problems i have now are mainly with copd, no-one really thinks about the langerhans cell and my GP had,nt heard of it. im feeling worried now. i will look on the website you mentioned x sharon
His Sharon, I had my lung biopsy in September and was told my right lung was fully diseased, with cysts and nodules. My consultant has not offered a scanning programme for me, I'll suggest that the next time I'm there. I share your feelings regarding no one fully understanding PLCH, they diagnosed it but can't tell me exactly what it is. I have Googled The British Medical Journal but can only access abstract information. My symptoms change from day to day, I have a non productive cough for days, extreme tiredness, excess urine, breathlessness, short term memory is very bad to the point where I had to give up work. There are days when I have to lie down for hours because I just don't have the energy to do anything, at times I have what I call excess fluid, I wake up chocking in the middle of the night, its like a drowning sensation and wake up throwing up clear fluid .Its so frustrating when I discuss these issues with my consultant and its as though he doesn't believe me. I am so frustrated with not getting the support one should get from a medical profession. I feel lost and quite alone dealing with this. I just need to know the facts, I'd deal with it better and knowing more I would make serious changes to my lifestyle. I'm so glad I met you on this site. Take care Sharon speak soon, let me know how you get on with Histio.org Ros xx
hello again do you take any medication ? what do you take? i am alot better than i was 2 yrs ago i get tired and breathless but tend to do less now and alot slower, feel like i should introduce myself to you properley i,m recently divorced 50 yrs old with 2 gronup daughters and 3 grandchildren aged 8 ,6 and 2 i had my biopsey 2 yrs ago after coughing up blood and although my scan showed extensive nodules my 4 scans since have been a bit better,i still work full time but need to rest more ,i try to stay optimistic and do as im told which is eat healthily and keep active. do you mind me asking your age ? sharon x
Hello Sharon, I'm not on any medication, though my consultant suggested a steroid nasal spray for the fluid. Like yourself I get breathless and tired, and everything I do is in slow mo! Initially I found that pace so frustrating, as I led an active lifestyle before. I am divorced, 47 years old with a 7 year old son. I worked a 45 hour week before and took care off my son, I couldn't cope with both due to being constantly exhausted, being an older mum, there was no choice in the matter, what energy I had was for bringing up my son! I hope to visit my doctor tomorrow and ask for a second opinion, I'm getting no where with my consultant, like you said before, no one bothers with the PLCH, My source of information has been from the internet, I make sure I read noted medical journals as a source of reliable information. Unfortunately there is not enough info out there as the disease is so rare. Will keep you posted on the outcome, take care speak soon Ros xx
Hi my name is Scotty. I just had my lung biopsy and was diagnosed with PLCH. I have the same conditions. Im a chef too for 28 years and now i cant even walk half my kitchen without gasping for air. Im affraid im about to retire at 43.
hi i have had langerhans cell histiocytosis since 2009 i have never been able to meet or talk to anyone else with this condition so am in the same boat as you 2 !! i would like to know more as not much is known really. i also have emphysema . i find that i get very tired and struggle to walk very far without becoming breathless. do you know of any really good info sites that i could maybe get some answers from please ? i also see my consultant at the hospital every 6 months so i can be monitored
Hello Tracy sorry its taken so long to reply back to you? I just checked my histio alerts today! I was diagnosed with plch in Feb 2012! I had a open lung biopsy. I have the start of emphysema too? Like yourself walking any distance is exausting to say the least! I suggest you have a look at histio.org website, I Had to as my consultant doesnt know anything about this disease! It seams hes not even interested! One would have thought a disease as rare as ours! Respritory doctors would jump to research more about it! If you are based in the uk? Contact PALS in the NHS! They might be able to help? Dont give up, keep asking questions! Do a journal of your symptoms too. I do as I get confused and forgetful at times? I attribute my confusion to the plch! Good luck, all the best and take care xx
Hi all, I am plch sufferer. I'm 38 diagnosis came after open lung biopsy on 12-12-12. I live in virginia and like you all have no "team" of medical professionals helping me. My doctors have told me to google it and the other half says they only heard about it in textbooks!!! I have been seen at duke university and joined histio.org...... Useless .... Dr. At duke told me I would always be in horrid pain and I should get used to it. Histio website has a ton of articles, but they are quick to email you and ask for donations. I'm in constant agony due to permanent damage in both upper lobes. I run out of air just trying to hold a conversation. I have a ten year old with autism and hold down a general manager position in a hotel! I have been searching for a year almost to find other people suffering from this. I give it to God as I can't take it all from day to day. I too am often confused and now I am struggling with speech and still my doctors smile, take my money and don't help me or seem to care. My feelings change from despair to anger to fear. I have terrible head aches, severe coughing spells and the worst part of it all is not being able to laugh. When I laugh my lungs close. I a on tessalon pearls, ambien, albuterol, pulmicort, tussonex. I would love to communicate with others like me, perhaps just to know that I'm not alone and I'm not crazy !
Hello Turkeyleigh? Thanks so much for you post. Im 47 years old, I was diagnosed in 2012. It was found through amopen lung bi-op. I couldnt agree with you more, no one seams to know much about this condition! I.ve done my research, but mynconsultant is no help at all. Like yourself my emotions have now turned to fear and anger! I dont know what the future holds! I too are in constant pain but xrays showm nothing! Thats plch for you! You touched me when younsaid you cant laugh anymore! Me too! Your not alone nor crazy!
Hello I am a 38 year female diagnosed with Langerhan's Histiocytosis and airway centered fibrosis with secondary pulminary hypertention. I was diagnosis by open lung biopsy in September of 2013. None of my doctors here in Minnesota know anything about this disease they have tried steroids with no success. I will be seeing specialists at the University of Minnesota this month..there has been talk of chemo treatment next.
Hello Jenyost75, sorry to hear off your diagnosis. I live in the UK and too have not found a doctor that has any knowledge of adult PLCH. Its so frustrating when I explain my symptoms, its like hitting a brick wall, as though they don't believe you!!! strange how they can label the diagnosis, yet cannot explain. I'm great-full for this website! This condition being so rare its such a relief to meet people in the same situation. I would be great-full when you have met with your specialists if you could let me know how you got on. I too have heard of chemo or radiation as a form of treatment. PLCH has been classified as an orphan cancer. I wish you well, take care
I for sure will. I met with an oncologist yesterday and he knows of a specialist at the Mayo Clinic here in Minnesota that treats PLCH and LCH. I am having a skin biopsy on a rash and an MRI of my brain to look for any other lesions or Cells if they do not find any then I have PLCH. I am on oxygen with activity and at night 2 liters it makes a world of difference in my stamina and I am not so fatigued all the time. I would reccomend I am on steriods but they do not seem to be helping. I will keep you posted.
Hi, I am 30 years old, live in the uk and was diagnosed with PLHCH when I was 18!! I endured 11 years of getting more and more breathless, to the point i couldnt walk from room to room and was on oxygen 24 hours a day . I have just had a double lung transplant last year and couldn't be better!!! I am willing to answer any questions x
Hi nick I'm 20 found out the other day do you have a email or something please.
hi sir
Hello Nicola, thanks forgetting back to me. Wow, what a journey you have been through! My PLCH was confirmed in 2012. I'm sure I had it for years prior to that. Recently I have been getting very breathless. Im dont walk out anywhere now a days as its too exausting, when I do I know im in bed for a couple off days afterwards. Not great when I have a 7 year old son, so I tend to plan my movements so that i have the energy to look after my son. Do you know of any doctors that specialise in PLCH? I'm getting no where with my consultant, he has no knowledge of the disease and brushes me off when i ask him questions. Before you had your transplant, did they try chemo or radio therapy or was the transplant the last resort? Did you take any medicine for the side effects? Its great to hear you feel great! I wish you well, take care! Xx
Hi again,
Yes I've had a roller coaster of a journey, I also had 4 children after I was diagnosed, one is 9 one 6 and 3 year old twins, so I completely understand how tiring it can be, and to be honest, oxygen never made me feel any better but my oxygen saturation levels were so low with minimal effort, thank goodness I had such a supportive husband!
Unfortunately I don't know of any specialist doctors, nobody I had dealt with had ever come across it before! Everywhere I went all the doctors were so interested! My doctors were all great, but was dealt with things as they happened, I had a good few pneumothoraxes, and infections, but other than that I was just so breathless.I was always told transplant was my only option! I was never offered chemo or radiotherapy,it was once discussed about steroids, but nothing came of that, I was stable for a few years and just after I had my twins I got so much worse, so I definitely think its hormonal?? Then I was listed on transplant list and told I wouldn't see Xmas without my transplant luckily after 5 months on the list I got my call, in the August xWhat have you bn told will happen? Has a transplant ever been discussed for you? What is your lung function? X hope you find some answers x thinking of you x
Hello Nicola, wow you certainly had your hands full and going through what you did!The amazing will power off a mum! My husband is a great support, from a pamperd pooch to hero! Wouldn't know what to do with out him! Likewise I dont know any specialists where I live, at least your doctors showed interest! I must go to pals in the nhs to be refered to a respritory doctor that is! Im being treated at the QE hospital in Birmingham! Interesting how you said it could be hormonal, in lay mans terms I know its an over production of white blood cells, the immune system instead of healling is actually attacking my lungs. I was told a lung transplant would be the last resort. Though I dont feel im at that radical stage? I have got worse over the past 12 months, my friends and family have noticed the difference. Meeting with people like yourself on this site has been an amazing support. When I see my doctor next I'll have so may questions for him! Take cre Nicola, stay happy and healthy. Xx
Hi i too have plch. I was diagnosed in sept this yr. My journey is just begining. I am female 44 yrs old. I actually feel realy well just now i stopped smoking straight away and my symptoms have improved greatly. It does scare me though when i hear other peoples experiences . It would be great to learn from ur first hand about this disease as im sure u'll all no more than most consultants. Stay safe and well best wishes from jackie x
Hello Jackie, thanks for making contact. Sorry to hear you have been diagnosed with plch too. Im in early stages to like yourself. Great you have stopped smoking! The great thing about this website is that we can all share our symptom experiences with each other. Just remember we can all have different symptoms so please dont be scared, just educate yourself, as im sure you are aware plch is a rare disease and not much is known about it. I did a day to day journal and discussed my symptoms with my doctor. It really helped me to understand when I was not feeling myself. Have you had alook at histio.org? I found it a helpful website. Take care Jackie keep intouch xx
Hi quantum66 I have done quite a few searches and have found on several sites that it can actually clear up.There doesn't seem to be any definite rules with this disease. I will be rescanned after in the new year to see if stopping smoking has made any difference then a treatment plan will be discussed if needed . I do have days were I find it very hard to deal with how do others cope with the uncertainty ?
I too have heard it can clear up I quit smoking 9 months ago and my disease has gotten worse so it is different for everyone. The uncertainty is very hard to deal with and very hard when most Doctors have no idea what the disease is or what is does to your body. The best description I have received is that the disease can act just like cancer but isn't classified as a cancer and it can act like an auto immune disease but isn't really classified as an auto immune disease but either way is very serious. I now also have Pulmonary Hypertension because of the disease and advanced Airway Centered Fibrosis. So all I can say is make sure your doctors are doing everything they can and don't ignore your body if you know something is wrong fight your doctors until they listen to you. I have gone through hell getting a team of Doctors who will listen to me and at least try to understand my disease. Being your own advacate is the best thing you can do. I also make sure to get copies of all my medical records and imaging and review and understand them myself. Good Luck
I did stop smoking as soon as I got sick. I have smoked since I was 15 or maybe younger and I smoked Kools and I admit, I loved to smoke - smoked day and night. Since the diagnosis, my condition has not gotten any worst - last scan showed no further improvement in the past year and a half - however, I have no doubt in my mind, my doctor confirmed I would not be here now, if I had continued to smoke.
Hi - It took awhile for Doctors to determine just what it was that I had. After a few biopsys they decided to do the Video Assisted Thoracic Surgery - VATS and still were baffled. Finally Mayo Clinic took a look and right away they knew what it was - this weird rare PLCH. My lungs were totally scarred with cysts and nodes all over the place. It has been two years since the diagnosis. I have horrible pain from the VATS and skin is so sensitive. After surgery, I did get somewhat better - this being due only because I stopped smoking right away. My doctor told me that if I continued to smoke I would not be around much longer. My latest CT scans show that things have not gotten any worse. They had hoped for a bigger improvement but still - its better than it was. I try to do a lot of walking - but do get out of breath frequently - well, all the time! I do pulmonary therapy twice a week which is good for me. It is just such an odd rare thing that we have. I hope your doing well at this time.
Me..from 2000 ...doctors don't know much about it
PLCH is a smoking related disease (in 90% of the cases) that normally occurs in younger adults between the ages of 20-40. It's presentation usually features coughing with diffuse infiltrates on CT and later on in the disease large cyst like features with honeycombing of the lungs. It can demonstrate normal patterns on spirometry, or restrictive, or obstructive. A defining feature is usually reduced diffusion rate and exercise tolerance. There are variable outcomes, sometimes remission with smoking cessation or corticosteroids. The disease is an abnormal inflammatory condition with variable systemic manifestations. As you have pointed out, it is a rare disease.
I do not have PLCH, I have apical centrilobular emphysema - also smoking related :-(, however I do lots of reading and a lady I know has PLCH. She is housebound, under chemo therapy for some of the systemic side effects, and will eventually need a lung transplant. She smoked from the age of 12 or 13 till she was 32 when her lung collapsed a couple times, which is also a relatively common presentation, and she was finally diagnosed via an open biopsy.
Lung disease sucks! Wish you all the best, take care and don't give up hope.
I have LCH but have pulmonary involvement. Are you in Northern Va? If so I know a Dr who can treat it here I have been in treatment for 3 1/2 years and am about to have a bone marrow transplant @ Fairfax. You can contact me cdenton1017@hotmail.com
~Crystal~
Hello My name is Robby (27yo), I have LCH since 2012 until now I still fighting with this illness. Many hospital with many doctor, I already have tried but my illness was come again.
I already do two time chemoterapy but now the LCH still comeback and doctor still suggest me to chemotherapy again.
When chemo I use vinblastine + etposide, anyone use different chemo medicine?
please help me for this answer because I'm really frustated for this ilness. thanks
please reply or email me at tannius_robby@yahoo.com
thanks for sharing everyone.
Yes Quantum ME got diagnosed Yesterday glad to know I;m not alone I can understand wanting to find answers that how I feel
I was diagnosed with this today.
I was just diagnosed with plch, I have an appointment with a pulmonary Dr next week...
How are u all? Which treatment u take for adult PLCH. Please share your story...
I have pulmonary Langerhans Cell Histiocytosis, I go to bathroom and can barely catch my breath, I cannot do housework. I so hate hate hate this disease!!
Pam Roche
hello I saw most of the posts are like 3,4 years ago but still hope somebody can answer me .I was diagnosed with LCH 1 month ago but I have it located only in my lower jaw? So they offer me radio or chemo therapy because its a big part of my jaw and they said the surgery its going to be not so easy and they have to cut maybe a little more of it.I am from Bulgaria and the more I read about this medical condition the more I think the better solution its surgery. Here the doctors also don't have any experience with that condition and I don't want to be their e
xperimental mouse.Is it here somebody who has that diagnose only in a bones or one located jaw bone,similar how is with me and can give me information about some expiriensed treatment or some clinic in Europe who have expiriance with LCH. I am 27 years old.
PS: I am sorry for my bad english
Hi. Your right, it is a very old post. Try putting up a post of your own where it is more likely to get a response. healthunlocked.com/blf/posts 
The ability to reply to this post has been turned off.
Not what you're looking for?
You may also like...
diffuse idiopathic pulmonary neuroendocrine cell hyperplasia. DIPNECH. I was diagnosed with this in Aug 2023 by Royal Brompton.
of a small group of doctors at Rbht appear to know about this. It has no treatment.
mic been...
50 yo woman with NSIP and IPAF
NSIP and IPAF, types of ILD. Does anyone here also have this condition? I’d love to connect and...
a tip from my pulmonologist
Vera drinks because they help with respiratory conditions so I looked on line here's what I found.
PPFE from the land down under
love to hear from people who have the same condition. I need to learn! Thanks
Prednisolone.. ventolin with symbicort.
prescribe them for these conditions. Though I have been using them for about 9 years now and every...
Bronchiectasis update
BENEFITS OR DOWNFALLS OF USEING TRIMBOW
Many thanks Lung conditions Forum
Hay fever season 🌸🌻
Brother in hospital with pulmonary fibrosis 
