Support page for Rheumatoid arthritis related interstitial lung disease

Started this Facebook page in an effort to gather people and information with/about rheumatoid arthritis related interstitial lung disease. If you have this complication or know someone who does, or even just if you're curious as you have RA and wish to know more about these issues.

40 Replies

  • Thank you. I have RA and Constrictive Broncholotis.

  • Thanks Caspiana I've seen you over there, glad you joined :)

  • What a fantastically proactive way of dealing with, and hopefully, improving your situation.

    I'm not a facebooker so won't be going on your page to comment etc but will definitely look in on its content now and again - well done 😎

    All the best


  • Thank you Ali xx

  • Hi I have just got a scan report which shows mild interstitial lung disease and indeterminate nodule on Ltd lung so awaiting appointment with respiratory specialist. I will be checking your page on Facebook for help and support

  • Hi kath I look forward to seeing you there, sorry you are going through this too, it's quite scary, there is lots of relevant info over there and we can build strength through numbers. X

  • I will follow your page with interest hope things go as well as they can for you

  • Thank you Junebee you are more than welcome :)

  • I have rheumatoid fibrosis and have lung function tests every six months also see a consultant

  • Please feel free to join my page Sophie would love to hear more from you. X

  • Thank you orchidcass. It is good to know we don't need to suffer on our own. Today is a good day and I feel fine. Started on methotrexate four weeks ago so far so good it has helped I can move a lot easier. All of my joints have r a even my jaw which is very painful at times, but I am better off than some people so I count my blessings. I am a 79 year old great grandmother and look forward to many more years..

  • Good on you Sophie, it got me in the jaw too that was my last joint to succumb. I'm glad the methotrexate is helping you that's really positive, I hope it continues to give you relief for those many more years to come xx

  • Good luck Sophie my hubby is 78 years old he was diagnosed with RA 2 half years ago. He's on methotrexate and it does help and I'm glad the Methotrexate seems to be workng for you too and long may it continue. Unfortunately hubby also has COPD and nodules on his lungs with scarring from TB which he contracted as a teenager. I will be taking a look at Orchidcass FB page I think this support group is so important and really helps me even though I'm lucky enough to be the one that doesn't have RA its's so helpful for me in giving my husband support.

  • I've it to say I always love to see family/carers here who care enough to join these groups to help the people they live do battle with this disease. It's people like you who really do help us through it all. My 19 year old son is my carer, he gets a bit baffled by the medical jargon so I showed him a few YouTube videos and that helped him understand ...whatever it takes, the will to understand what we are going through really does mean the world to us xx

  • I have bronchiestatis,had it for about 6 years, I get horrendous coughs,lungs fill with thick mucous,constantly on antibiotics,it's very draining on top of the RA.Just watched YouTube clip, that really cheered me up, all about high mortality with ocpd.Hope all out there enjoy your Sunday,with not to much pain today.x

  • I know the mortality rates are pretty scary, I need more time! X

  • I have no idea what the condition is but have had PE's which are RA related and think its vital to make people aware RA is not just about damage and pain it can have hidden risks that need medication which is why I get so worried about so called "cures". RA can cause life threatening conditions which are silent.

  • So very true :( my mother had pulmonary embolism when I was born, I suffered brain damage as a result. That was what they scanned me for originally. We have a higher likelihood just from having RA, and that's ten fold when on high dose Prednisone :( for two and half years since I was diagnosed I've heard and tried (almost, not the dumb ones) every miracle cure and natural way to improve my condition, including taking those massive risk drugs, all just hoping and praying that one day I would wake up and be well and able bodied and be able to go about my life again....if I sought out information on the internet I would be literally bombarded with people forcefully and rudely demanding that if I just ate right I would be well...all the while I was following all their ideas, I really was that desperate. I found it useless to ask advice on the forums as any real answers would get bogged down by streams of "miracle cures". Nothing I've tried has made the slightest difference to my disease course, maybe had I been diagnosed earlier but I was diagnosed as rapid onset severe rheumatoid arthritis, it already had full power over me. Anything I've found that benefitted my general health at all I've maintained and have all my family eating fresh grown produce straight from the farm and trying to make them live as healthily as Poss. I hope it prevents them developing it. My mother is currently being diagnosed, and my brother, my father has it and my maternal nan had it, my father's was probably triggered by his Lyme's disease, which my youngest son has Lyme's and I worry for his future, he's 12 now and had Lyme's four years :( I do wish people wouldn't always feel the need to lay blame on us, no matter what we have wrong with us people always assume it's our fault when I think this was going to happen to me no matter what I did x

  • You have my sympathy orhidcass, life is precious and we live healthy we grow some stuff ourselves but my in laws farmed and we still have access to fields of some veg, I'm also Celiac so must not eat gluten again I still have RA but what did and still does work is Leflodamide. I take it because although it has risks it keeps me feeling well and at the moment in remission. I don't actually like taking it, but its about risk and I'm not willing to risk more clots although of course that may happen anyway but no need to load the dice is there ?

    If I said nothing no one would ever guess I have RA; I have energy and a normal life because I'm lucky with an early diagnosis, and good medications.

  • It's good to hear those stories too, glad leflunomide works for you. I know my Rheumatology consultant will want me on something soon. I would probably take anything if I thought it would help right now but it seems they will all make me worse so I just don't know which path to follow, hence looking for more people like me to find out my options x

  • Great idea my hubby is the unfortunate one to have RA and bronchial problems but I think this support group is wonderful and your Facebook page will be an added bonus. Thanks for setting it up.

  • You're very welcome, with the power of the internet none of us ever need feel alone x

  • Hi Orchidcass,although we have a heavy burden to bear,I try to be positive for my children's sake,they worry so much,and feel helpless they can't do anything to stop the disease.We are all mortal,we don't know how long we have on this wonderful planet,none of us do,those with serious illness, and those who are fit and healthy,we just try and enjoy each day the best we can. I also tried dozens of "cures"people mean well, but some suggestions are frankly ludicrous,eg hang upside down,listen to gong music,I wish it were that easy! Anyway keep positive, lovely lady,and best wishes for your RA treatment.x

  • Thank you rosebaywillowherb, I love that name. I think at first the darkness and panic overcame me and I felt in a total head spin, each week is getting better though and I find myself grateful that I'm here now rather than fearing when I won't be. When I came out of hospital it literally felt like the wright of the world on my shoulders and that there were a million things I needed to take care of, no time to do it in and feeling I had no one to help. But as I've dealt with each day and every issue that's one my way I find myself reminiscent and laughing, singing (dreadfully) along to songs I've not listened to since RA hit me. As much as I would be very happy to wake up tomorrow and this all be a dream, there is a lot to be said for gaining that insight intk what is really important in life. Xx

  • Hi. I have had bronchiestasis for 6 years now but no-one has ever told me what it is and I take nothing for it. Should I? x

  • I can't really answer that as I'm not your doctor but if you have lung issues alongside rheumatoid arthritis you really should be seeing a pulmonary consultant too. If you like I could link you to some relevant information about bronchiectasis

  • Thank you but it was a pulmonary consultant who diagnosed it and gave me no treatment so I guess it isn't so bad.

  • Yeah hopefully it should be ok, just watch out for opportunistic infection catching you off guard and if you start feeling breathless on exertion then see a doctor. They will probably x-ray your chest from time to time hun. Still feel free to join the group. Lung involvement seems a lot more common than many ra sufferers are aware, forewarned is forearmed xx

  • Thanks. Will keep that in mind. x

  • From what I'm reading (bronchiectasis always is on my diagnosis list when hospitalised so I've learnt a bit) but the tubes are damaged and don't clear mucus well, so infections get to sit and take hold in your lungs much easier. Before lung damage is done it's normal to treat acute attacks with antibiotics and possibly Prednisone. Its meant to be regularly monitored though as to protect your lungs if they are getting damaged. Most ra patients have lung function testing and x-rays of the lung don't they? I would definitely ask why it's not being monitored x

  • Forgot the link to source

    Hope this helps

  • Thank you very much. x

  • Thank you. I have RA no lung disease that I am aware of. But it is good to keep informed.

  • Feel free to join hun x

  • I don't use Facebook but am very interested to know more as I am curious to know whether my ankylosing spondylitis, osteoarthritis and "unidentified" interstitial lung disease are connected. Please let me know how I can learn more.

  • Hello Shelley I'm not a huge fan of Facebook either but needed the wider audience. I do also post many items to my Google plus page here -

    Also I have my autoimmune me Pinterest board if that interests you search for Cassandra "autoimmune me" Bird :)

  • Ahh kai thank you very much :) I'm glad you took a look for me and liked what you saw. I did share to the British lung foundation but my post got deleted, apparently there were a lot of spammers at the weekend and mine was assumed to be a bad link too. I shall try again and to the groups you mentioned. Thank you for your kind words. Much love x

  • Thank you kai I'll listen now

  • Heartbreaking yet inspiring thank you hun x

  • Thank you hun i appreciate the support and plugs, the page really does apply to any ILD of known/autoimmune nature or not idiopathic. Hope to help and gather as many of us as possible :)

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