I've been diagnosed with this recently, I'm looking for anyone here in the BLF group with the same diagnosis, or any of the connective tissue disease subsets, or the lung disease subsets that all seem so connected. I'm new at all this, though I've had asthma since childhood which I think has only disguised what was really going on as every time I complained of being breathless or chest pains it's been put down to asthma. I was also hospitalised two years ago with methotrexate poisoning and damage to the lungs, I wonder if the ra was actually already affecting the lungs? My asthma had never been uncontrolled until a few years before I was diagnosed with RA. To me I now am aware of the differences, asthma is the wheeze, worse on the exhale and has a productive cough, where the ra affects me with crackles in my breathing, dry cough, feels like I cannot breathe in deeply, if I do I get pain in lung bases. ..I keep being given asthma treatment and my pulmonary consultant seems keen to consider it all asthma, though the radiologist saw rheumatoid changes in both lungs, the asthma meds (I probably wouldn't be ok without them) but I don't feel they relieve the other symptoms much. Which meds are you all using for the ILD?
Interstitial Lung disease...caused by... - Lung Conditions C...
Hi I don't have ILD but I do have COPD and recently been dx with psoriatic arthritis I also have OA . When I got the dx of PsA. I was offered Methotrexate. But refused to take it due to already having damaged lungs. I take sulfasalazine and Leflunomide. I know the Leflunomide has a rare risk of lung damage. But I am happy to take it. I know RA and PsA are different but they are treated the same .
Yes it is very much the same disease just with some slight alterations. Thanks for replying I heard about leflunomide having lung risks. I didn't know sulfasalazine does too until they made me stop taking it when hospitalised in July. My pulmonary consultant says rituximab is the safest option for lung patients. What do you take for the lung disease? If you dont mind me asking?
Hi I was told by the rheumy consultant that with me having COPD there was a limit to what they can give me. I can't find any information that sulfa damages lungs. I will mention the medication you mentioned to my consultant. I take Bretaris Genurair and relvar Ellipta inhalers for my COPD and ventalin when needed. I had a really bad time with my COPD a few years ago eveytime I stopped taking antibiotics and steroids the in fections would come back. Had test done and scans and was told I had a small showing of bronchiectasis too. Also my immune system was low. So I am being refered to see an immunologist to see why. Funny thing is my breathing has suddenly got a lot better. I have not needed steroids or antibiotics fo quite a few months now good job as I have to stop taking the Leflunomide if I ever have to take antibiotics.
Oh you sound very much like me. For a few years now I've hardly ever been off steroids and antibiotics, soon as I come off infections set in. Since being treated with IV in hospital im feeling much better and my lungs are probably functioning at best for some time....but it can only be so long before it all starts again. I know how painful that is having to stop a med for antibiotics, surprised the meds could even damage my lungs as I rarely had the chance of taking them! Lol. Thank you x
I just got done with rituximab. I was sick for 4 months and now have blood disorder, it maybe leukemia. Look at the side effects from the medications. RA and ILD is hard enough but complications and other diseases from these meds, I am ready to give up....lol I am on oxygen for my ILD.
I have UCTD (Lupus variant) so I get features from many different CTD's. My chest has been under attack for the past few years with recurrent pleuritic episodes, inflammatory bronchiolitis/small airways disease and now Serositis. My resp muscle strength/ diaphragm is reduced too. My lung volumes are still normal luckily. I am on Mycophenolate but can't take. High enough dose to suppress my disease due to my low white blood cell counts. My respiratory consultant has a tendency to shrug and pass me back to my Rheumy who does the same thing in return . . .
Bless you Clare67, thanks for replying, I've researched lupus alongside my own condition as they have many similarities and a dear friend has lupus too. My lung function tests were not vastly changed even though I feel as if they should be, my most recent one took me a few days rest to recover from and caused pain in my lungs. But when I get a bug I go downhill in a matter of hours. Wish doctors could just listen to us.
Yes, my PFT's take everything from me too so I totally understand where you're coming from. Nothing stays long in mu upper respiratory tract these days, it goes straight for my chest and takes weeks to recover even if I don't need antibiotics. I asked a lot of questions at my recent resp appt and stressed how much my functionality had dropped compared with my modestly reduced spirometry (69%) and it did help my consultant to look a little deeper at my figures, I bounce in there looking a picture of tanned health and fitness - I can walk and stay active for hours yet even 30 seconds of badminton or bending over to pick something up off the floor is too much.
It's hard when we have to accept that our previously ok lung function is now a thing of the past and we have to adapt our lifestyle accordingly 😕
I think that because I was pretty much permanently bed bound for last two years by the uncontrolled severe rheumatoid disease activity, so I think my lungs were not often pushed at all so I never noticed how much I struggled on exertion, then I started benefitting (not full remission but reduction in swelling) from the enbrel injections, so I got more active around the house, then my lungs became a real issue and I'd been complaining for months that my lungs were not right before being hospitalised in emergency situation. Now I'm not allowed the enbrel and only on Prednisone which is putting the fat on at rapid rates. Every cold goes straight to my chest too, I also have bronchiectasis. My kids started back at school Monday and are both already home with tummy bugs....I'm hoping I handle that but it makes me very conscious that with four (+1 fostered) kids and all their friends I end up with their bugs on a constant basis. Literally scared as hell of catching a cold again xx
5 children - gosh, how old are they? I have 3 and couldn't manage any more! Such a shame about the Enbrel - the unaccustomed weight will be bad for your morale as well as your fitness. Is the pred keeping the RD under control? I have a very poor appetite so my BMI is constantly low even with steroids - my consultant used to use this (?malnutrition) as an excuse not to treat me. Then this year he worked out how hard I was trying to retain some fitness and has been more compassionate since.
We're on holiday in Florida at the mo but mine will return to school on Monday and then I will soon be battling the various viruses too 😕
Hope you can stay well. Clare xx
My 21 year old son has left home to be fair so I'm down to four here, then I have a 19 year old son he is my carer and has taken on most the responsibility of his younger siblings too. Then there's my foster daughter, she's 17 but been through a heck of a lot these last few years, the difficult part of fostering is I haven't raised her myself so it's like starting from scratch at 15 (when she came here) which wouldn't be so bad if I hadn't become so quickly disabled at the same time as I took her in. Them there are my two beautiful young twelve year olds, boy and girl. Not twins, they were born 9 months and 3 weeks apart and are only both twelve till October! yes I didn't plan to have more than three either! Lol but after 3 boys she was a brilliant surprise and has truly been my saving Grace. I feel awful for what they are going through with all this bit I'm also glad I had four so that they have each other for support xx
Oh and no I can't say the Prednisone controls the rheumatoid disease activity, probably does within my lungs but even at 30mgs a day I started swelling up again. That's why I've chosen to come off it as I think it's doing more harm than good. Won't stand a chance of transplant in future if I'm overweight so best stay off unless I'm desperate x
I know the feeling of being passed between doctors. After my thyroid cancer surgery and treatment every doctors visit would revert back to -"Oh, it must be due to your thyroid" with no real evaluation. I would suggest taking matters into your own hands and going in prepared with a few things you think might be causing it and start there.
Lol my diagnoses all began with the thyroid disease. Though I think even that went undiagnosed (or simply unchecked) for many years as every problem was put down to my mental health, once I had been labeled with that I never once got a blood test or referral for any of my symptoms of physical distress, I was just given antidepressants and sent away. It took a scan to notice my thyroid was mutilated and then they decided to test my thyroid levels, which were crazy off. Within a year I was diagnosed with the RA and so on and so forth. Feels a bit like after i hit 30 my body just started shutting down piece by piece!
Mine feels that way too. First thyroid cancer. Then lung Colapsed from pleurisy , then Fibromyalgia, osteoarthritis, and now Emphazema and lastly Tarlov cyst disease investigation. So many on here with so much worse diagnosis and taking each day as it comes. So inspiring
I think we all handle it differently. Sounds like you have been going through plenty of your own hun. Positivity helps and I think the worse the diagnosis is the more likely we are to be determined in the face of it, I think chronic conditions, especially involving long term and severe pain can be so draining on a person that there is only so long they can keep up the positivity and determination to beat the disease, we have to live long term with little chance of any cure or remission and that can really destroy that fighting spirit. It's pretty interesting in psychology how we all handle our health issues but don't feel that you are in the wrong for not handling it the same as the next person. Each story is individual and no one knows how they will cope till they have to xx
Someone once ask me if I could have a million dollars or perfect health which would I take. I was young )17) and thought I would live forever so I said the million-because I can get help for what ever ails me. How wrong I was. Best of luck to you and thank you for your response
Hi I have ILD the diagnosis was made 5 years ago. I have been on steroids since the diagnosis at a level between 30mg and 60mg, I am also on Micophenolate, antibiotics 3 times a week and oxygen 24/7. I only have 37% lung function. Even though all of this I keep myself occupied with my crafts which keeps me sane because no matter what you have to fight all of the way. Ask questions and don't be fobbed off insist on seeing all relevant consultants. Keep your chin up
Craftyone ooh bless you, I'm not that far gone yet but your attitude is fab and will hopefully keep you fighting I'm a craft a holic too and found it very depressing for a while when my hands wouldn't allow me to continue with paper crafts. I was so bored and then I discovered soap making, something I seem to be able to manage on good days as the stick blender does all the physical work for me. Are you hoping for a transplant? Best wishes xx
Hi Orchidcass unfortunately I have gone passed the stage for a transplant, what I have now medication wise is all they can offer me, yes at first I was angry at them not doing other things for me but I need my energy to keep going not arguing with consultants. I also do paper crafts, sewing and many other crafts, it depends how my hands are as to which craft I do on any particular day. Keep crafting and smiling and fight your corner xx
I was diagnosed with Sjogrens Syndrome induced Pulmonary Fibrosis last year. My oxygen was just increased yesterday. I can no longer use my portable concentrator. I have to use steady stream tanks set at eight. Haven't quite figured out how I will get to doctors appts in NY. At that setting they last less than 2 hours. Dr office more than 60 mi of mostly city traffic. Never know what life will bring you. A whole new learning curve. I have been on a lot of heavy duty Prednisone (more complaints about Pred than the basic disease). Now I am on Cellcept and Prednisone.
Bless you maree thank you for your reply, now that is a concerm :/ would you manage on lower output for the time it takes to visit Dr? I have secondary sjogrens and a friend has just been diagnosed with primary. Seems everyone is on cellcept, my pulmonary consultant seems to keep giving me asthma meds and I honestly don't feel they are much benefit. I've chosen to taper off the Prednisone, hopefully it won't send me into a bad ppace cos I really feel I need to be off them. X
This is my first post. I also have pulmonary fibrosis caused by rheumatoid arthritis, and aggravated, I feel, by the methotrexate prescribed for the RA.The rheumatologist so, of course denied that. Anyway, tomorrow I'm having an angiography to see if I also have pulmonary hypertension (another terminal disease) I'm on permanent O2 at home, but for now I can go out without oxygen for a few hours, as long as I don't actually do anything!
What I really want to know is how long I've got left, and how long does it take to die. Everyone on this site is incredibly positive and cheerful, but I would really like the truth.
Good luck, Orchidcass.
Hi phyll I'm glad you've taken this opportunity to post. I think it really helps to talk to others with the same issues and we seem to be quite rare to find I know exactly how you feel, it feels as though DR's never want to give a concrete "you're gonna die and this is how long it will take" I guess it's to protect us but personally I'd just like to know the reality of the situation so I can prepare, especially for my children. This is why I started a Facebook page to find as many of us as Possible so we can discuss and support each other, I've done a lot of research on the subject and I share everything I discover there, it's helped a lot to see others with more hopeful stories, one or two on transplant list and one recovering from transplant and doing well and I was surprised to find others of a similar age and female, as statistically DR's felt I was too young (39) and it's more prevalent in males with RA....but there are others like me too! Please feel free to join us facebook.com/rheumatoid.lung/
A synopsis would be, I've read many studies that give average survival after diagnosis is about 2.6 years, however I have found one or two more recent studies whicb now give average survival as 3.6 years. Still not the best prognosis and we do seem sadly lacking in effective treatment for the condition and every study is completed with the need for further study in this area. There's the problem with having rare conditions, most "normal" people and even many RA patients have no idea this disease can kill us and there isn't enough of us for them to bother studying it much, maybe we all die before they get a chance to learn what's happening to us? I hope the angiogram goes well for you and that you have better days. Best wishes x
I have Mixed Connective Tissue Disease, this includes a real variety of symptoms that includes RA and ILD. I was diagnosed at 36, 8 years ago. It has also caused PH (pulmonary hypertension) which has only been diagnosed in the past year. I am on a variety of medication for the different aspects and have tried all sorts of medication that hasn't worked for me. It seems medication can be quite a personal thing for whether it works or not!!!
Life is tricky but I get on with it with supportive family and friends.
Hi Angie wow it's nice to hear your story, not nice for you of course and I'm sorry you have to go through all this, but boy is it good to hear someone still going 8 years after diagnosis! So you have done pretty well and I can tell that positive attitude and supporting family and friends has helped get you through it. It does seem that these conditions, with the complications are very difficult to treat effectively. Not only do we all seem to react differently but it seems they are yet to find anything truly effective for the lung issues. Let's hope they start finding some soon! Good luck Hun x
Thanks - I don't think 8 years is a lot for what I have. With all the new medications that manage the conditions I'm looking forward to many more years as I have been stable for 3-4 years. You really shouldn't believe what is written on the Internet.
True and you are living proof of that, good on you. From what I can gather we seem to be ok whilst stable, it's just a matter of keeping it stable. Good luck with it! Xx
Hi OC, just read through the whole thread and found it very interesting. I think some doctors are reluctant to answer the ''how long do I have left' because they'd hate to be proved wrong and because while the diseases might be the same, how the act and react with different people is never the same. My official diagnosis is Asthma and Bronchiectasis but the a tial situation is that one of my lungs is completely covered by fibrosis so I have to get by with the other one. The right lung is damaged too but at least it shows up on x-ray unlike the left one which is invisible under it's snowy cover of scar tissue. There are several people on this forum with Pulmonary Fibrosis and the even more aggressive Idiopathic Pulmonary Fibrosis. Many of them were given the 2/3 years prognosis and are still here after five or six years. We're all different . Good luck with your treatments!
Hi Billie Jean thank you so much, you are very right, in looking for others I've come across several exceeding expectations. At first I was so panicked and scared, but finding so many has given me much more hope. I think I'm well enough currently to be incredibly grateful for that, at least I am here now. Things haven't got too gruesome yet so I must hold on to the hope that I've got a long way to go yet and it doesn't all have to be downhill. Bless you I hope your right lung keeps you going well enough for some time yet. Thank you for your reply
You got the ILD from the methotrxate
I have asthma and totally agree. I also have been told I have ILD. The symptoms are exactly the same. Wheeze = asthma; crackly = ILD(?).
I have just recently started taking high doses of steroids to try and reduce ILD, but it is complicating my already out of control diabetes.
take care, x
Oh diabetes as a comorbidity cannot be fun, I know I've recently had a few steroid infusions and have had to increase my daily oral steroids too, now I'm booked in Thursday for another depo medrone injection..... my face has grown so much dark hair I look like a monkey and my weight has gone from 11 stone back up to 14 and half! Yes I agree you can definitely feel the difference between the two diseases. I think my problem lies in that I only go to hospital when I've completely lost control of my breathing as in if I'm coughing too much or have an argument with a stroppy teenager and then the asthma kicks off and I go to hospital. I've seen my o2 at dangerously low, lower than when I've been admitted and yet as long as I maintain a calm control over it I don't feel the need to go to hospital...but of course really I need it documented at the hospital as they don't just take my word for it. I've been posting pictures of it all to my google plus page publicly so that it's all documented. I've kind of stopped using these pages as all my posts get deleted where I'm trying to show people where to find me but I didn't want any of you to think I was ignoring you. I'm Cassandra/Cassie Bird also known as Mammacass so guys do look me up. Wishing you all good days, much love and breathe easy folks xx
lol I realise I have two accounts as had lost access to my first... I need to deactivate one account :/
I have been nearly a week on steroids and walked down to the bottom of the road felt a bit better which begs the question - what happens when I come off them? x
Yeah this is my problem too Hun my body doesn't seem to survive without them either, I can't say they improve things much with the swelling anymore but I can't manage without them for my lungs
We are a right pair!
Do you work?
I'm afraid not I wish I could but I consider myself lucky to get to the toilet unaided lol my 20 year old son has been my official full time carer for the last two years, though it all began when he was 16 really. When you hear about cases of rheumatoid arthritis there are so many levels and differences between patients, I got lucky with the type that is classified "rapid onset severe ra" anti ccp positive which means it's more likely to go extra articulate, now that it's in my lungs it's considered a terminal diagnosis mostly I think because there just isn't enough of us to prompt studies into treatments etc and it seems most of us don't survive long enough for them to get good info from us, quite a lot are only found to have the disease in the lungs post mortem. I sometimes feel keeping up with my appointments is a part time job in itself haha I do like to keep myself busy with some crafting and stuff like that as and when I'm able... sometimes I do that from my bed
Great replies. Helps to get me in a good frame of mind for my consultant appt next week. Just hope I am in a dynamic and not totally fed-up state of mind. Need answers to questions to- lol.
I have ILD was diagnosed 8yrs ago. I am on oxygen 24/7 on steroids and Mycophenolate 1000mgs a day. Those are the main ones that keep me alive but I am on a lot of other Meds as well.
Hi crafty one I’m a crafter too 💕 I pray you are doing as well as you can be. I’m still here so doing better than I’d first imagined. My main issue is always constant infections, I now have a nodule in my lung and I recently started abatacept infusions 🤞 my lung function has been on a constant decline this year although I don’t feel all that bad really. Good luck with your journey x
Hi I haven't done any crafting since November because I caught COVID and the clubbing of my fingers is painful but hopefully will try and get some Xmas cards made in the next month or so. My oxygen levels getting worse to, being positive though.I hope you keep as well as can be and keep crafting happily.