Interstitial Lung Disease and Autoimmune Diseases

I have UIP, a type of interstitial lung disease and pulmonologist put me on OFEV to help slow the progression of the disease. My hair has started falling out and I think it is this medication. When I spoke to the pharmacist, they said it was a very rare reaction and suggested I get my thyroid checked. Is anyone else taking this medication and if so, any reactions?

I was diagnosed with Interstitial lung disease, they found Rheumatoid Arthritis in one of the tests stating it was linked to my lung disease. I was seeing a specialist who referred me to the Alfred Hospital in Melbourne, Australia. After my initial consultation the lung specialist asked if I had ever smoked and I answered that I had but had given up 5 years prior, he then basically said I will see you in three months. He continued to do the same thing for about three appointments but put me on Prednisolone and Mycophenolate. The last appointment I had with him he did the same old thing denying the fact I had no right to be there and instructed me to do a beep test in order to assess me for a lung transplant. The minimum oxygen saturation to do the test was 85% and I was at 81% so he sent me home. That night I woke up sat on the side of the bed (I cannot remember this, my wife explained this to me), I was unresponsive, so she called an ambulance. As soon as the ambulance put an oxygen mask on me, I was combative and resisted any attempts to move me (again I have no recollection of this). I became conscious 5 weeks later in Intensive care oblivious to what had happened and drifting in and out of fever dreams. My condition deteriorated rapidly over approximately three months going from nasal probes with oxygen to high flow oxygen, any attempt to exert myself left my saturation dropping to as low as 51%. I had a persistent bacteria Psuedomonas Commenalis or something like that that was causing fluid build up in my lungs and was even moved to another hospital to do physiotherapy. The hospital was terrible and had no idea how to care for someone in my state. I had three codes in four days and they moved me back to the Alfred. I mentioned the lack of care from the specialist I was seeing there to one of the lung specialists and eventually was asked what I wanted, I said I wanted a Lung Transplant. I could barely lift my arms to eat. The doctor that asked me then told me I would be assessed for a transplant, they let a few things go because there was no way I could pass them. Doctors from all over the hospital had to see me and explain I had a low chance of survival from my weak state (mainly being negative and trying their best to talk me out of it), the only team pushing for me to get it was the Physiotherapists because I never said no to their sessions and kept trying. Someone up there was looking out for me because I got approval to have a lung transplant, six hours later I was signing a form to receive new lungs the next day. I awoke 4 weeks later in Intensive care and was moved back to the respiratory unit and worked my arse off for around 3 months to regain the ability to walk. This all happened during the big COVID scare and I was unable to see my family. I am sitting here now writing this and was released in September 2021. I am not going to lie there are times I wish I didn't have the transplant, but when I think back to how I felt I didn't do it for just me it was for my kids and wife. The main issue I have now is my mental health, I left the hospital with severe PTSD and panic disorder. I have been to Japan, Thailand and the Philippines with my family, we have travelled to Queensland, Australia stooping by in Canberra (some things you just can't undo). And also Sydney all together. I take my son to Jiu Jitsu twice a week and have been able to watch my oldest son become a Police Officer and will soon watch him be married. I guess I am trying to say if you want to get through this it is a rough ride whether it is worth it depends on you, but if that is the path you want you have to push for it, don't sit there and waste away like my Mother did. Nothing ever scared me in life but not being able to breath even with the slightest bit of exertion having a panic attack scared me. I sincerely hope you find your path.

I was diagnosed with Interstitial Lung Disease and was hospitalised with hypoxia. Awoke 5 weeks later in Intensive Care, spent 1 and a bit months slowly dying in the Respiratory Ward. I was assessed for a lung transplant and got a double lung transplant. I now live with PTSD and Panic Disorder, severe depression, suicidal ideations along with neuropathy and type 2 diabetes. I was days away from dying now I am waiting for something to pop up because as my lung specialists so bluntly put it, "It is a palliative procedure". I don't recall hearing that prior to getting the transplant.

I never asked anything about bone health??? Lungs!

Thanks for that information

Not yet. Spent last week in hospital with respiratory failure. Got down to 75%. Have follow up with my new pulmonologist in couple weeks. Last one did nothing but say go home and suck oxygen. Never seen specialist. Just nurse practitioner. Fed up. Hoping for questions on meds and treatments before go to appointment

I was just diagnosed with interstitial lung disease; no particular kind yet. My lung capacity is at 70% and I’m starting on low-dose OFEV in about 10 days. I’m really concerned and frightened because I’ve heard from several people how terrible the side effects are. They’ve not offered me oxygen so I have no idea if that would help. I just moved so I’m going to join local the gym and force myself to treadmill it. It appears this disease reared it’s ugly head after my fourth bout with Covid. I’ve never ever suffered shortness of breath. I’ve always been active and healthy!I’m at a loss and so anxious. When I asked my previous Pulmonologist for prognosis, his words were “you don’t want to know.” How evil is that?

I have Addison's Disease as well as Ankylosing Spondylitis. Have had 11 spine surgeries the last 8 all fusions from C2 to T3 and L1 to S1. Diagnosed with Pulmonary Fibrosis on my birthday of all days. Mine is from my long term (38 years) of having Ankylosing Spondylitis. On oxygen 24/7

I am 83 years old - active and just DX with ILD. I have had PMR for 3 years and was on Prednisone during that time. I tried many ways to get off Prednisone but developed side effects at every try. My initial visit with Pulmonologist put be back on Prednisone for a start and more serious drugs after a period of time. My CT showed more inflammation than previously shown in CT last 2 years. I have Osteopenia and some issues with my back. How did you start with meds and progression?? My only symptom is coughing more frequently after getting off Prednisone in March. Seeking advice - second opinion - ILD Clinics? I am in San Diego and use Scripps Doctors at the moment

You need to see an endocrinologist or rheumatologist for bone loss today. I am on prednisone and recently developed a compression fracture in my mid back due to long term use of prednisone. I too have ILD and I currently being evaluated for a double lung transplant.