My lung volumes have stablized at 68 %. I will be switching from Myfortic (Mycophenalate) to Imuran (Azathioprine). I have to have a different base line blood test before I can do this I will be having it on Monday. I am switching because I have stopped the Prednisone and I will not go back on it unless it is life or death. I am having muscle inflamaiton and joint inflamation. The muscle inflamation showed up in my blood work two weeks ago. My doctor saw that this drug has helped people achieve remission in another medical disease. It is used to treat arthritis. I have look this drug up in my pharmacology book. I have training as a pharmacy technician.

Hi Cats How did your baseline bloods go? and have you switched to imuran yet? I hope the change in medication helps you, and you see some improvement in your symptoms. I have just done the opposite to you and switched from Imuran to Mycophenolate, because the imuran didn't work for me, It seems that we all need to find a medicine regime that works for us as individuals, there doesn't seem to be one pill that suits us all, which is a shame! Good luck Alison

Hi Cats. I have been on a regimen of prednisone, Azathioprine and NAC (an amino acid supplement that helps lungs heal) for the last 16 months and it has been an effective treatment for me. My antisynthetase syndrome manifested as rapid onset of Interstitial Lung disease, dropping my lung function all the way down in the 30’s. Sixteen months later my lung capacity is back to normal and my lung efficiency/diffusion is at 70%. Just recently I have been able to stop using all supplemental oxygen, even when exercising. I am working on tapering off the prednisone completely, then will taper off the azathioprine next. Though my doses of prednisone have varied from 80 to 15 mg, my dose of Azathioprine has always been at 100 mg/day and the NAC at 1200 mg/day. The first few weeks of Azathioprine I was deeply achy, tired, feverish on and off, hair thinned and my stomach was greatly upset. My liver enzymes also spiked way up about 2-3 months in but then dropped back down to normal levels. Gradually all the side effects diminished and I found my stomach to be better if I took it immediately after food in the morning. The azathioprine dose I've been on is about 1/2 of what is often recommended. Originally they started me at 100 mg to get used it with the plan of doubling that. However, my lungs seemed to be recovering at a steady upward pace so I fought to keep the levels as they were. More (or more risks) didn't seem warranted unless my progress stalled. So far I'm still slowly improving. I hope it goes well for you. Kelly

I have only been on the Imuran for a week now. I just had to have a base line blood test for something different than the AST, ALT, CK, and CBC. I go again in right after the new year to draw new labs. I know that on my previous labs my CK was up again. I'm just glad that we have it stablized right now. I also have arthritis symptoms. It takes me awhile to walk the 10 or so blocks to the library to get on the internet. I hope everyone has a safe and happy holidays.

Good holidays to you Cats! Hope you're feeling well.

Hello Kelly, You guys and gals have not heard from me in a long while but I am doing ok. I was just reading your post about the medications you are on and would like to know more about the NAC that you have been taking. I am very interested in maybe suggesting that to my Pulmonary Team. I have been off of the Prednisone for about 8 months now. I have only been taking the Azathioprine and have been stable on that. Is there a website that you could suggest that I can gain further knowledge on NAC? Thanks in advance for any information that you can provide to me.

Shonna - Glad to hear from you and glad to hear you're doing well! N-acetyl cysteine (NAC) was suggested to me by both my pulmonology team and my naturopath. I guess there's many studies using it to treat COPD and Idiopathic Pulmonary Fibrosis patients. My understanding is that it helps inhibit inflammatory cytokine production, the production of mucus in the lungs and helps cell walls repair themselves. I was able to read bits here and there about it by doing Google searches. I know webmd has it listed, as well as National Institute of Health. A study in Scotland is interesting: http://www.ljf.scot.nhs.uk/scp/N-acetylcysteine.pdf I don't know what specific role it's played in my recovering lung health but it hasn't hurt and has no side effects - unlike the prednisone and azathioprine! I am down to 10 mg/day of prednisone and hoping to be fully off it in another 6-8 weeks. Then I'll just be on the azathioprine and NAC. With a little more luck I'll be back to 100% lung function by late spring (which will be the 2 yr mark for when this all began). Hope things continue to improve for you! Kelly

Kelly, Thank you for that information. I have an appointment next week with my Pulmonary physician and I wanted to ask him if we could maybe try it to see if it will help me any. I actually did research it a little on my own, I just wasn't sure if what I found was what you were talking about here. It was so, thank you again and I will keep you updated on my status as much as possible.

Shonna, By the way, the NAC is available in most vitamin or health food stores in the amino acids section. Be sure to get the slow-release version. Will be curious to see what your pulmonary team says about it. Seems there are so many approaches to tackling this crazy rare disorder. Happy New Year to you, Kelly

Hello Kelly, I just went back to the Pulmonologist and found out I have Asthma. I was recommended to get the NAC 600 mg and to take it three times a day. I also was given a new inhalor to take after I do my other one. My spiromoty test showed obstruction, I was however able to breath for a longer time this time. I have to go the the store today to get the NAC. I am waiting for the weather here to get better, we have crazy weather here. Jen

Jen, Glad you were able to breathe better on your recent pulmonary test. I always like seeing those results. I hope the NAC helps you. I've been tapering my immune suppressing drugs and am glad to be getting off of them. I will however keep on taking the NAC long term as I think it helps my overall lung health. Stay warm in that weather! Kelly