Hi Tina,

It is a small group. I have a very rare form of ILD called GLILD caused by my immune deficiency (CVID). I have been struggling lately so I have been kind of out of the loop and just happened to stop by. The site underwent some major changes so we no longer receive email updates to posts or replies. Would you like to share your story? What type of ILD you were dx with? Welcome :)

Im so glad to know you are still here ! I read about all your old posts and did still learn alot, and I am so glad your okay. my pulmon Dr has told me its ILD and when I try to get the kind it falls under, he says "Bronchocentric cellular interstitual pneumonia with microgranulomas, focal active alveolitis and focal organizing pneumonia and hypersensitivity pneumonitis" also he says farmers lung as well !! but now that he and my new Rheumy work together on this..she says it is from my Ra ? I am trying to figure this out in lamen terms but still alittle confused ! I got Ra almost 2 years ago and we tried methotrexate to slow down the disease. almost right away, I was sick with different infections and after several months of coughing alot, I went off the mtx and the infection turned into double pneumonia and nothing would get rid of it. so after every test imaginable, they found grey patchy areas of concern. so they did a lung biopsy, and sad " interstitual lung disease"...but the sample had to be sent to people at Baylor for pathology reading. ( I think this was over their heads) and they said it was rare. now we started with 40 mgs of prednisone and pray this works or helps. they are not giving me an answer on what to expect or how bad it is yet. its very frustrating waiting and wondering !! that is the hardest part. does any of the diagnose sound familier to you? you said yours was caused by your immune deficiency.. what one do you have? thanks so much Kelli for listening and Im so glad your okay. Hugs Tina

okay, I looked up the CVID and GLILD and I understand what your ILD is and from. and in trying to find the ones they told me about, I dident get much so Im gonna ask them to be more specific. I go back to see pulmon Dr the 9th for my next ct, to see if the prednisone is working. I forgot to ask, I seen on an older post that you were going to have surgery in January and was wondering how everything went? sorry so long !

I did 40mgs of prednisone for 3 months and it was HELL. I won't do that again. Thanks to the power of social networking I actually know several people who have my same rare disease (CVID happens to like 1 in 50,000 people and something like 10% of us get this lung disease). I knew for us, the granulomas always come back but I agreed to try it anyways. In May of 2011 I had almost none after prednisone, then in August I had symptoms again and sure enough, 10 new nodules. Went to another doc in January and he refused to treat me because he wasn't able to do an open lung biopsy (I had previously had a fine needle biopsy) because the nodules were not in the right spot. So here I sit untreated until I get sick enough (probably too sick to work) and he can get a good biopsy. Crazy huh? During this time they found nodules in my abdomen, pelvis and chest wall and I just had a biopsy and its not lymphoma (we are at a higher risk with cvid).

The only things that sound somewhat familiar with yours is the pneumonitis part. I know people with LIP - i THINK its lymphoproliferative interstitial pneumonitis". I did originally go to National Jewish hospital. Heard they were the best but not in my situation. May be an option for you if your insurance will pay for it?

I also hate this prednisone! it makes me so loopy. the only thing good about it, is it helps my Ra...it helps the imflamation everywhere. hopefully they can start tapering off in a couple months. Ive heard that hospital is supposed to have the best specialists in the lung diseases. it really stinks having Drs that have little or no experience. Im gonna see how the treatment they put me on works for awhile before I drive across the u.s. I live in south Texas. that really sucks about the nodules, I have them on other parts of my body, mostly hands and feet. so far I havent heard anything from them about the lungs yet. is their anyother way to get the nodules down? have you had to do any c02 ? I have a hard time breathing and my cc02 was low so Im not sure how they are gonna approuch that yet. I know its pretty scary when I get real short. . I really hope things get better for you. I have a lady on my Ra group wanting info for the same issues and I told her to check this site out and maybe we can get more supporters on here. keep in touch, and thank you very much for all your help. Hugs Tina

Ideally, the prednisone will shrink nodules and then essentially your breathing would improve. There are some meds like Imuran and Rituxan that they were going to use on me BUT that being said it depended on my bronchoscopy - if I had b cells or t cells in my lungs and then the new doc wouldn't do it without an open lung biopsy. very frustrating. Keep an eye on your carbs while on the prednisone. Don't be scared to ask for help if you cant sleep. If you can't rest you can heal your body. Your'e probably starting to feel the good effects of the steroids, maybe start a VERY SMALL exercise regiment, like walking 5 minutes each day for a week, then 10 for a week, etc. After I got off the steroids I had gained 15lbs and started exercising to lose the weight and it improved my arthritis IMMENSLEY. Then when youre off the roids, hopefully your RA will be in check a little more and your body won't spiral down. Gosh did any of that makes sense? haha. Rambling, sorry.

I was gonna ask you and I keep forgetting, " do you also have an autoimmune disease".what do they think brought the ILD? the carbs are what I crave the most ! and sweets at night big time! I go back to pulm. Dr wednesday and I ve been on 40 mgs for one month so Im really hoping I can come down on it soon. we will see. take care thanks for the heads up on the excercise...think Ill try starting tomorrow !!

No my ILD was caused specifically by my faulty immune system (CVID). I do have arthritis as well and a couple of blood disorders, had ITP in the past, but lung disease was caused by my immune system