Hey folks Will be doing more reading as time permits, you will soon meet my other half, who is living with this disorder. His diagnosis has been developing over a couple of years, started w/ a "pneumonia" dx, then started coughing up blood. Working dx was IPH although the anti-Jo-1 was showing a little out of norms as was the anti-Ro52 SS-A antibody until recently. He spent 4 weeks between mid-Jan up to 10 days ago in the hospital. Since last June, he's had a lung biopsy, multiple bronchs and ... well many of you probably know the routine... we know that when they say "come on in" to pack the bags, it will be a few days before we're home. So, he has the AsS dx now, along with IPD, tonight he goes in for a sleep study, he's on 2 liters O2 at night because his saturation dips at night. We hope to find more suggestions here ...It's been a long road, you know you spend too much time at the Hospital when the housekeeping staff know you.

I should add that we're being followed and treated by a fantastic Pulmonologists. This has been a huge mystery and has pulled in many, many Residents, Interns, their Instructors, Specialists etc ... it's ben crazy making over the past couple of years. At this point we are working to get his qualified for disability. He exhausted his FMLA in 9 months time. He will have no insurance in 4 weeks.

Hi MPdaCNA Really sorry to hear of your husdand's new diagnosis. This disease really sucks. What I can rell you is to not wait any longer then absolutely necessary to get things checked, and get treatmment started.I was at 10% lung capacity at dx, and was told I would not survive. I am now back to 79% and holding pretty good. I got very lucky and was started on full treatments very rapidly. I do knnow that most people with this have responded very well to drugs like prednisone, and other immunpsuppresents, as well as regular infusions of IVIG. It was a combination of methotrexate, prednisone and the IVIG that brought me back, and keeps me going. I currently get my IVIG infusions every week, and will probably be doing so for the rest of my life. It has allowed me to have a fairly Normal "for the disease anyways" life still, although I am now permanently retired on medical pension at just 47.I also take infusions of Rituxin every 6 months. I am lucky enough to live in Canada where my government pays for these drugs, no questions asked. I know they are very expensive. I wish you luck in getting him declared disabled. Luckily I had no problem with that, and we certainly do not need the added financial burden put on top of dealing with this. Please remember to stay positive. Even though there is not alot know about this disease right now, we have made major strides, even since I was dx just 2 and a half years ago. We are always willing to help others on here when we can. God Bless and Keep Up The Good Fight. Wayne

Thanks Wayne Fortunately we have great doctors working on his case and they are very aggressive with treatments. He is currently on a taper down of Prednisone from 120 mg to suppress the bleeding, The prednisone combined w/ IV Solumedrol didn't suppress it so we're getting him off of that, has been on it since last June. His current dosage is 40 mg. He also is on week 3 from his Cytoxan and is at 150 mg of Imuran. His next set of labs will help determine which way we take the treatment. It's great to finally have people that know what we are going through. Hard to believe that at 46, his life is drastically altered for life.

I'm sorry you both have been on this roller coaster. I'm glad you're getting good care. I'm also in Portland. I've had excellent care at OHSU and Legacy. My case took a turn for the better once my team also started consulting with Dr. Raghu at The University of Washington Medical Center. He works out of the pulmonology medical specialities clinic in Seattle. There is such a small population of doctors that have seen these cases - the more they collaborate the better for all of us! I hope he improves with the new treatment regimen.