Well, I've had a whirlwind of five months.  I got a sinus infection in January and stopped taking my methotrexate.  My doctor sent me for a chest xray and was surprised to see what she thought was pneumonia.  I began the first of five different courses of antibiotics while my lungs got worse and worse. I finally had a contrast CT Scan in late March and that showed signs of interstitial lung disease. I was referred to a respirologist and my first appointment was pending scheduling post pulmonary testing.  By mid May I was really having problems. I saw my doctor and my O2 was 87 and she decided to admit me to hospital until they could do some tests in order to speed up the process.  They did a bronchoscopy but got no real results.  I also had a high definition CT Scan.  A week after that I saw the respirologist and she put me on Prednisone 60mg and oxygen for exertion (3.5).  A week later I was reassessed by a nurse and needed 4.5 for exertion.  In the last few days of May I was having problems even conversing with the oxygen on.  I went into emerg and they brought me into the back within 10 minutes even though the emerg was full.  They admitted me, did a CT to check for embolism, etc., and more chest xrays.  Then they took a LOT of blood over a few days and put me on a 3 day shock treatment of 1g of Prednisolone.  When my Jo-1 Antibody came back positive I was happy to have some kind of answer. They did another bronchoscopy but I haven't heard anything about the results. And thus far no improvement.

My Jo-1 is 3.9 and my CK is 538.

Yesterday I started with a treatment of cyclophosphomide and followed with a long treatment of immunoglobulin.  I have my second and final immunoglobulin treatment today.

If this starts to work, how long does it take?  I know there are two more medication options if this doesn't work, but my respirologist has expressed concern about getting funding.

I'm 43 years old with an 8 year old boy and husband who both have Asperger's.  I'm their main support network, especially for my husband, who grew up in a house alone with his father who also had Asperger's.  I'm highly motivated to do whatever I need or can do to help myself even a little.

Hi Stacey!
I sent you a private message. Check your inbox. All the best,
~ Jensha