Seems my remission ended a few weeks after I went off the prednisone and my lung function has started dropping again. My ability to move air in and out (FEV scores from my PFTs) has gone from 77% on 5/5, to 61% on 6/9 and is at 54% as of 7/1. I am so damn pissed about this damn AS! When I noticed the decline in May, I immediately did a week of 80 mg prednisone (in addition to my daily 100 mg of Azathioprine.) and then they had me drop down to 20 mg pred. That didn't help so I've been on 60 mg pred/day for the last 4 weeks and it appears I'm still declining. I have the OJ subtype of AS so it only affects my lungs (when it does it does rapidly). Because I have no detectable form of Myositis with it, my CK levels are always normal as are my SED rates, no matter how good or bad my lungs. CTscans and PFTs are the only way to measure things. So, there's an on-going conversation with the docs about what to do. I think we should be more aggressive. They are consulting. Tuesday I'll have a chest scan. They are considering a possible bronchoscopy to rule out any lung infections. Regardless, we'll have to shift my medications to address it all. Any treatment ideas out there specifically to address lung function? I have responded fairly well to high dose steroids in the past but I'm wondering if something new is on order? IVIG? Opinions? Thanks.

Hi Kelly, I have JO-1 AS. Nothing has helped me except for IVIG!!! My lungs were full of ground-glass opacities, but after six-months of IVIG (5 day infusions once a month) my lung damage is REVERSING! My doctor was amazed. I hope that helps you.

thats what i want to no. iam new to this although i have been disable 6 years.went to lung specialish last friday he feiped out, i loved it , didnt think he could speak but 3 words. he can and one of them was a 4 letter word. my oxygen was so low, he didnt know how i was walking. went home and 2 days latter a practitioner, to check my blood oxy. scared him to. dr. office called to make sure they get the results as soon as duke does the test. whats up with that? my oxy. must have been way low. i know it was down to 20 the last six visit. i would love to try the ivig but from what i gathered they have to try the rest first. my lung dude call my rummy doc. at duke and they decieded i was going on imrun, cant spell it but was wondering if it has help others or made no difference.the way they talk about it on tv. its some bad stuff. help me please. i have to go thursday. thanks

NAC is the only new thing I've heard about and I heard about it here on this forum. I bought some at a local GNC store but it is the immediate release type, I gather from other posters here that the slow release version is much better. BTW, I am now dealing with avascular necrosis in my hips due to intermediate term use of prednizone with a variable dosage and azathioprine at 150mg per day. Hip replacement (both hips) is in my future.

Thank you all for your postings. I was on various dosages of the triple cocktail of Prednisone, Azathioprine and NAC for the first 20 months after my diagnosis. despite the side effects, my lungs responded well and I went from 35% lung function all the way back up into the 80% range. Completely cleared out my lungs and regained 82% efficiency and had no evidence of lung scarring. Considered myself incredibly lucky. But then I tapered off the prednisone over 5 months (while staying on the Azathioprine and NAC) and my lungs are under attack again. Since I did respond to the prednisone the first time, it's probably still a good option. But how many times can my body take that? Going in for tests over the next few days and meeting with new consultants in addition to the rest of my team. Will keep you posted on the treatment option we choose. Thanks for your input. Kelly

I'm a anti PL7 sufferer 3 years ago things looked bleak I had ILD and was in heart failure I could'nt walk across the room. Myself and my family were told that things could go either way over the next 3 years. I was treated with 6 rounds of cyclophoshamide followed by cellcept daily. In the meantime I was on maximum prednisolone which was tapered down as my cellcept was tapered up to 2grams a day. I still have heart failure although this has improved but the biggest difference is in my lungs my capacity is almost near normal. I am back to work in a limited capacity. I have suffered some side effects from the medication and I'm not convinced that my recent bowel and liver problems aren't related to my medication although I am being tested. However nothing has been as bad as struggling for ever breath as i was before the treatment. I hope you find what works for you regards Katrina x

HI, NANA 6 HERE. WENT TO DUKE LAST WEEK. PLUMY SAID MY MUSCELL BIOSPY WAS NORMAL? WOW THAT SHOCKED ME AND HER, I DONT KNOW WHAT TO DO NOW. MY TEETH BROKE OFF AT THEGUM LINE, HAD BEATIFUL THEETH BEFORE THE STEROIDS. NO ORAL SURGON WOULD TOUCH THEM. LUCKY ENOUGHT TO GET INTO ANOTHER GREAT UNV. SHE SAID SHE WOULD CUT THEM OUT IF INSURANCE PAYS. SHE STILL CANT DO THE SURGERY UNTIL AUG. OR SEPT. CANT START ON ANY DRUGS UNTILL THEY ARE OUT, INFECTION ALL IN MY MOUTH. 2 PROBLEM IS MY LUNGS, SHE DID THE TEST THAT SHOWS HOW MUCH OXYGEN I HAD IN MY BLOOD. SHE SAID NO ONE WILL TOUCH ME AS LONG AS MY LUNGS ARE NOT PUTTTING THE OYGEN IN MY BLOOD. SOME ONE PLEASE TELL ME HOW TO GET THE OGY. IN MY LUNGS. I NEED AN ANSWER PRETTY QUICK. I LEARNED SO MUCH FROM THIS SITE. IT HAS GIVEN THE STRENGTH AND THE KNOW LEDGE TO GO ON. I THINK ALL OF YOU.

Well after a brochoscopy to prove there were no infections going on and another CT scan to see how much of my lungs were being affected by the AS again, the docs have suggested a new cocktail of 60 mg prednisone, 1200 NAC and 1000 mg Cellcept. Starting that today and hoping for a better reaction. I was pushing them for the IVIG but they say it's not that dire yet. Losing any lung function feels pretty dire to me. They say we'll know in a few weeks if it's working. Praying I don't lose any more lung function during this time. Kelly

i hope it works! guestion? would any one start an auto immun drug with 85 % of your teeth broken at the gum line. steriods], i am having a horrible time getting an oral surgon to put me to sleep. to get them out. doesnt make sense to start the drugs untill this is done. does this make sense to you guys, please let me know soon! ty

I would think they would have to balance your risk for infection. I'm guessing you'd need a specialist to work on your teeth and manage infection risk. Also, with limited lung capacity, knocking you out for procedures takes on other risks as you may have to be specially ventilated. Sounds like this needs to be managed in a hospital. Such a juggling act to manage all these issues. Sorry you're in so much discomfort.

I am trying a new treatment (new to me) to try to stop the recent AS attack on my lungs. I'll be doing a 3 day IV infusion of 1000 mg prednisone each day, then will be on 40 mg prednisone, 1000 mg Cellcept and 1200 NAC. Should be a whooper of a couple of days! Hoping it halts the AS and lets me work towards recovery again. Kelly

Good luck Kelly pls let us know how u make out. My husband is on 2000 mg of cellcept and holding stable with lung function. Keeping u in my thoughts!

The Cellcept is the best thing I've been on for my lungs. I started out with a tight dry feeling in my chest. That was over three years ago. I was on Cytoxan for about a year and have been on Cellcept since (about 1 1/2 years, 2500mg a day). My PFTs have been improving for the last four tests. The thightness when I breath is gone. But afer a year and a half on a low dose of predisone (20mg a day), my doctors took me off it. Said the side effects were too great to leave anyone on it for any longer than that. I also take Dapsone (to help fight off any minor infections) and am currently not on any anti-inflammatories. I found out from my Primary Care Physician that Cellcept is why I can't get any of the "good" anti-inflammatories like Celebrex. They don't mix well at all. So I take a Aleve for my aches and pains. Kelly, take it slow, do what they tell you, and always remember that there is a real reason why they call what doctors do "practice". Keep smiling everybody, and God bless us all.

tbear - Just wondering if you have been diagnosed with any specific lung disease. My husband was diagnosed with UIP about a little more than a year ago on a CT scan. Along with antisynthetase he also has RA and Sjogren's. He did have dermatomyositis several years ago but went into a remission (so to speak) for about 1 1/2 years and then a couple of years ago developed dry cough, etc. which led them to look at the lungs. He began treatment with three Cytoxan infusions and then was switched to the Cellcept. Thanks for any info.

Doreen - I was diagnosed with Anti-Jo1 Syndrome. Basic joint pain and problems with muscle weakness and control; Mechanic's hands and interstitial lung disease. I have a PFT every time I see my pulmanary doctor. He sends me for a CT scan every other time as well. I have a great group of doctors between my Primary Care Physician, my rheumotologist and the pulmany specialist. I couldn't ask for better help and support. When my pulmonary doctor talked about taking me off Cellcept, I asked him why. I said it had done more for me than anything else had. He said I could stay on it a little longer, but because of the side effects (and that goes for most medications) they just can't leave me on it forever. I believe Imuron (not sure of the spelling) will be the next thing he mentioned. I particularly love my rheumotologist. She took one look at my hands and said, "I need to run a blood test, but I'm pretty sure I know what this is." And she was right. Keep tlaking to people. Keep your spirits moving in the right direction, and tell your husband that I will be praying for you both.

tbear - how long were u on the Cellcept? That's what I'm on (3000 mg plus a whole cocktail of other drugs). I'm curious b/c it is the only thing that has helped me, they have tried a few other drugs during my month hospital stay, but I was either allergic or it did nothing. I have ILD, dermatomyositis, Reynauds,inflammatory arthiritis, dvt, and a long list of others. When I was released from the hospital in Nov my PFT showed 35%, now I'm up to 50% and my doctors never expected that. Your post made me nervous b/c nothing else has worked and I'm still not in "remission"

Natalie - Just wanted to comment here - My husband just saw his rheumatolgoist and we talked about being on Cellcept. She reiterated to us again that Cellcept is a very safe drug. People who have transplants need to take this drug for their entire life to prevent rejection.

Natalie - I've been on Cellcept for about 18 months. He is going to leave me on it for another 6 months (ending in October when I see him again). He also told me that after being off it for a while, if nothing else works they can put me back on it again. While I was on Cytoxan, I had to go every 2 weeks for blood tests (thank God for insurance, or I couldn't afford any of this). With the Cellcept, I only go for blood test once a month. My PFTs have gone from about 40% to near 70%, and on the 6 minute walk, my saturation levels which start at around 89%, drop to around 67%, but recover in less than a minute after I sit down. The techs that do the walk always ask me if I should be carrying oxygen, and does my pulmanary doctor know that my saturation levels drop like that. I always tell them the same thing, "The only time my saturation levels get this low, this quickly, is when I am doing this walk. I don't let them get this bad any other time." As for "remisson," I personally don't hold out home. I plan to maintain the levels I have now, and do everything I need to so that things don't get really bad, really fast. I will keep you and everyone who is suffering from this nasty disease in my prayers, as well as all of our families too. We need all the help we can get.

Thanks everyone, I was hospitalied again for the past week and hopefully gettingbout today. I am a PL125 ASS sufferer and my myositis has caused some lung and heart issues. I am on 3000 Cellcept, but the said that obviousy my disease type that wont work akone, so I'm going back on prednisone and a new drug Takrolimus (sp?) hopeully things will work out better for me, although I hate steroids, does anyone blow up like I do on them? Hopefully my next post will be at home!

Natalie, All my prayers are for you right now. Do what they tell you to. As for the steroids. I started out this whole thing overweight, and when my docotor put me on prednisone she said that "everbody" gains weight while on it. I thought, isn't that just what I need right now. So I watched, very carefully, what I ate and drank. When all was said and done, I had lost about 20 pounds in the year and a half I was on it. But my highest dosage was 20mg a day. My doctor asked if she could show my records to other patients to prove it didn't have to happen. I told her that I happen to be the exception tot he rule, after all look what I've got to deal with now. All my love and prayers.

At this point I'd say the infusion treatment ( 3 days of 1000mg IV prednisone) worked at kicking the snot out of the AS. My lungs feel like they've stabilized and are in the recovery mode. I can tell from the little things... I can yawn again, sleep semi-reclined instead of fully upright, my coughing fits in the morning are minimal, I can water the garden without wearing the oxygen tank, and in general my O2 sats are a few points higher both at rest without oxygen support and even while moving with the oxygen. The cumulative effects of several months of high dose prednisone, plus the infusions, are taking their toll and now I'm back into that phase where the side effects of treatment rule my days more than the lung issues. The extreme muscle weakness(otherwise known as being Noodle-riffic), tremors, super puffy face and chins, painful acne rash, inability to filter out stimuli, inability to sleep more than 5 hours, loss of fine motor skills and jumpy mind take a lot of energy to manage. I am currently on 40 mg prednisone, 1000 mg Cellcept and 1200 mg NAC. I seem to be adjusting well to the Cellcept with the exception of a constant, low grade headache. I'm just trying to pace myself and ignore as much of the side effects when I can as summoning my determination to participate in life bubbles up more easily some days than others. I'll go back in for PFTs and other tests at the end of the month. At that point I'm guessing we'll try to decrease the prednisone and increase the Cellcept if all continues to improve. I too was overweight when this all began and had similar conversations with the docs about the effects of prednisone. I was able to keep my weight stable the first year through careful diet and forcing myself to walk each day, no matter how slow. Then I went to visit family for Christmas, ate all kinds of junk and lots of bread and gained 10 lbs in a week. That weight stayed with me the next 9 months until I tapered off the prednisone. The next week I caught a severe stomach virus and dropped another 10 lbs. Not a route I recommend. I'm also certain it was that stomach virus - and the timing of going off the prednisone - that kicked my immune system into crazy mode again and caused this round of troubles. Regardless of weight, I do look heavier as the prednisone gives me that 'moon face' and puffs up my neck and chins. Plus the facial hair.... oy! It has also given me extremely curly hair. Some times I catch a glimpse of myself in the mirror and wonder who is that crazy looking woman?! Oh well. I'm still here. And that's the goal, right? Good thoughts to you all, kelly

What is working for me is the fast acting NAC, azathioprine and hydoxychlorquine. I am still trying to loose the weigt from the prednisone I was on. I hope you get something that works for you.

thanks everyone, I was released from the hospital, but then had to go right back in only a few days later b/c I contracted a virus in my central nervous system while I was there. I'm out again, but not feeling much better. They took me off the new drug for now and I go back to the rheumatologist in 2 weeks, but for now I'm in and out of the neurologist office.