The dr.has been trying to take me off of prednisone for over 6months an its not working......the cough comes back full force....azathioprine 200mg. An 40pred....I'm a little scared...the knew ct says lungs remain hypoinflated with chronic bibasilar volume loss.differential includedes chronic atelectasis...an element of organizing pneumonia or changes of nsip with fibrotic traction bronchiectasis....I'm just 42 how did I get to this? I sleep a lot know an I can't think clearly what about that.......have y'all had that problem?

Dear Onetouch, I was on prednisone (between 20mg and 5 mg) for 2 1/2 years. When I was taken off of that, I was put on Cytoxan, that didn't do a whole lot for me. For the last 18 months I've been on Cellcept (500 mg. 3 in am, 2 in pm). My PFTs have been steadily improving and overall I'm breathing better. They also have me taking Dapsone (100 mg - 1 daily). This one is a low grade antibiotic, just to keep me safe from anything strange. I get a pneumonia shot when the doctor says its time, and I've been feeling pretty good for a little over a year. I've been away from prednisone completely for over 2 1/2 years. My doctors didn't want to keep me on it because of all the side effects it has. Overall, my best advice is to find good doctors at a research hospital, if you can. Hospitals connected to Universities seem to be doing the best from what I've heard on this web-site. I'm at Ohio State in Columbus, and I love my doctors. I will admit that they don't know a whole lot about this illness, but they do listen to me when I talk about what's working and what isn't. I do what they tell me to, and I also do whatever I feel I can do in my own life. Get a referal if you can. If you can't talk to you primary care physician about finding you some better doctors. You have to be able to trust these people. Our lives are in their hands. I will keep you in my prayers. Terry

I am also on Cellcept and it has worked well for me in all areas of this desease. I also do Albuterol in a nebulizer twice per day, SIngulair pill and Advair inhaler. Along w/ the 5 to 10 mg Pred for 3 years and will keep it at that. You must look at your quality of daily function with and without the Pred. I have known people who have taken high doses (40-60 day) for many years and it seems to be better for them than being short of breath and in pain. I am in East Texas and have found a wonderful Dr.. That is a must for you.

Hi onetouch. My husband has UIP and has been on Cellcept for one year. It seems to be keeping this disease at bay. He has 50% lung function but does not require oxygen at this point and he is able to work full-time. He developed dermatomyositis over ten years ago when he was in his late 30s. It was in remission for a bit and then he developed a cough, tiring easily, nodules on his elbows, etc. Since he has been on the Cellcept the nodules have disappeared and his cough is much better. Lung function has remained fairly stable. His sed rate is now normal but his anti Jo1, Sjogren's, rheumatoid factor and ANA are also positive, especially his rheumatoid factor which is extremely elevated. Apparently this disease progresses in everyone quite differently and what one individual is going through may be entirely different than someone else. Many people talk about taking NAC for their cough. It is found in healthfood store. It seems to help with mucus. Maybe you can ask you dr. about it. I hope you find good, knowledgeable doctors. Regards D.

Im sorry what is uip an what is nac.I dont see the doctor until novemeber 18 he is my lung doctor.I am going to ask can i try cellcept. I am his first patient with this but he does a lot of research an very interested in everything about this.We both agree before we decided to stay with each other through the ups and downs. That if this get to be to much for him we will would contact V.C.U. MCV Virginia Commonwealth UniversityMedical College Of Virginia vcu.mcv is the leading hospital an school in our area.I was approach to go to dc baltimore to that john hopkins for research study but i decline. I think i over my sad week . thank yall for being there for me this week. one touch

I just read a press release from the NIH that may be of interest to the Antisynthetase community... "Commonly used three-drug regimen for idiopathic pulmonary fibrosis found harmful, October 21, 2011 News Release - National Institutes of Health (NIH) http://www.nih.gov/news/health/oct2011/nhlbi-21.htm They have halted a trial in which folks with pulmonary fibrosis were being treated with prednisone, azathioprine and NAC. Too many of the people were having negative risks/outcomes and not seeing any affect in their lung function. Though these patients' lung conditions were not due to autoimmune disorders, the study may have some bearing on treatment for those of us who do. You should follow the above link to the press release for more information and share it with your doctors. This was the treatment regimen I was on for 2 years (have recently switched to cellcept/mycophenolate) and I had a similar result.

Hi Onetouch I was on Azathioprine and pred, and didn't find that the regime worked for me; it was only the pred keeping my CK low and not any effect of the azathioprine, so i switched to Cellcept and finally got off the pred two months ago. My Ck was 279 last month, so i'm hoping that this is the start of a stable period for me after a rocky two and half years. I would agree that a doctor who listens to you is worth their weight in gold, The brain fog, not being able to think clearly is, in my opinion, a side effect of the pred, and I find i get tired all the time when im either anaemic, or when my body is fighting an infection and my wonderful immune system goes into overdrive. i'm 44 and feel like an old woman some days!

You are all correct. Doctors that listen are key in our situation. My doctors wanted me off prednisone as soon as possible. The side effects will kill you. I don't think I was on it for more than a year, and the highest dosage was only 20mg. for the first 2 months. I was between 5 and 2 mg for about 6 months. I haven't had to take it for a long while now. Don't let them tell you that you can be on it indefinitely. It does damage to the liver, kidneys and pancreas. A friend of my sister-in-law was on prednisone for over 5 years. He doctors said it was the only thing that would work for her. She died last year from liver and kidney failure. I'm not saying this to scare anyone. I'm just letting you know the facts. Some doctors just don't want to stray from what they know. And if prednisone is the only thing they know, they don't know a whole lot. That is solely my opinion. You can take it whatever way you want and you won't hurt my feelings at all. I pray for us all daily. I hope nobody minds that I do that. I think we need it.

Just being able to talk to you all make it easy to have good question when i go back to the doctor.I think im just comming out the fog an see this is just not going to go away.The highest prednisone is 80 an now i am on 40 and 200 azathioprine. My son just ask me if i been taking my medication like i suppose to because my face look different to him..Now that i said it out loud that i am ashame for some reason to walk around with my oxgen i can deal with that an its nothing that i did to make me this way.I dont now why ive been crying so much lately.I never ever should emotions before.This just started 08/10 they thought i had lupus at first i am on the plaquenel also. Are yall the first in your family with this kind of problem? Do you think this can be pass to our children? Keep praying for me! I dont mind thanks onetouch

sorry for the misspelled words! onetouch

I also asked many of the same questions. It is not a genetic, inheritable condition. Though some families do have higher incidences of autoimmune disorders. I was very concerned about my kids as well. At least they'll grow up with an awareness regarding health, immune systems and they demonstrate a ton of compassion given their ages of 10 and 5. The changes to your face are most likely from the prednisone. It gives me a puppy "moon face" when I'm on it and gave me very curly hair after a year on high doses. The side effects are long and mighty... Weak muscles, blurry vision, tremors, huge mood swings, metallic taste in the mouth, acne rashes, jumpy whirlybird brain....etc. I have a love hate relationship with it as my type of AS fills my lungs really fast and so far it's been the only thing that can shut it down. Hoping the cellcept now will allow me to taper off for the long haul. And tbear, regarding the prayers and positive energy... I do the same for all of us and our doctors every day. Every bit helps!

The very first thing my doctor told me after my diagnosis was that they have no idea what causes this disease. They only know that it is not contageous and it is not hereditary. They know what is affected, but are just guessing when it comes to treatment. For me, my doctors have gotten the treatment right so far. The worst part of all was trying to explain to my boss why I was having so many doctor appointments. He didn't like it at first. He actually had a fit about it. But once I got my HR department to explain to him that if I have the sick time to cover my appointments, and a legitimate excuse for them, there is nothing he can say or do about it. So he calmed down and said, "Well, I guess you have to do what you need to do to get better." I then explained to him that there is no "getting better", just a hope to maintain. I have taken a realistic look at the overall outcome of all this. And I plan to make the best of everything between now and the time that I can't do that anymore. Until then, I do what the doctors tell me and try to act sensibly. Keep your heads up. Keep doing what you're told to do. And above all, remember you are not alone.

Hi Onetouch. I too was just diagnosed with this in September of this year. This site has already been a godsend to me. So much information and support. I for one am thankful for all the prayers. Everything helps. I am currently on 100 mg prednisone and 100 mg azathioprine daily, as well as 50 mg Septra 3 times/wk to keep this at bay. At the beginning of October, my neurologist started me on the IVIG treatment. I noticed a huge improvement after day 2 of the 5 day infusions. It has made a huge difference in my mobility, as well as my lung function. When I started, I could barely walk, or even lift my legs up the stairs. I now have almost full movement, although they are still very weak. I am working on the strength, slowly. It also improved my lung capacity from 59% to 65%. It may be something for you to look at with your doctor. Apparently, the quicker you can start it after diagnosis, the more positive the outcome. I will be continuing this treatment every 4 weeks as long as it helps. Hopefully, it will also help me lower or even get off the prednisone. The side effects can be nasty, but necessary at this point in time. I will bring in a copy of the article you listed. Very good information to know. Also, do not be ashamed. You did not cause this. It just happened, and now you have to deal with it. I get a lot of people staring at me, as most of the time I have to wear a surgical mask when I am out. People sometimes treat me like a freak. Due to the fact that I am immunosuppresed, and seem to get infections at the drop of hat, i have little other choice. I just figure that it there problem if they have an issue with it. I know why I wear it, and that is all that matters to me. When I am having a bad day, feeling angry at the world for this, or just feeling sorry for myself, I try to think about the fact that at least I am alive for my family. I think of my daughter and grandchildren, who don't care that I walk slower then I used to, can't play soccer anymore, or wears a strange mask. All they care about is that I am still around to love them. My wife who can still hold my hand, and tell me that she loves me. I think about the fact that it could be worse. It seems to work for me, so far. Just keep taking it 1 day at a time. That's all any of us can do. And remember, you are not alone. There are many awesome people on here going through the same thing, with all their support and knowledge, ready and willing to help us where they can. God Bless and keep moving forward... Wayne

Thank you an everyone for sharing......I have been really grateful for what i do have.Thank god for my husband that have so much love in his heart for me. They say that god only gives you what you can handle..If thats true he must think all of us can handle alot.Just hearing everything that i am going through somebody else allready been there means a great deal when you are in that why me mood....I would not wish this on anyone. I never wanted to be a burden to or on anybody i always been there for other people but just not use to anybody helping me...Just a different place in my life that i never thought i would be.Just in this day and time with money and jobs hard to come buy i did not want to make it harder. With the information that everyone has shared i can bring something to the table in takeing charge of my treatment to the point we can try something different.My son said something true the other day an that is everyone need some help sometimes he dont know what a true statement that was...but he just wanted money for this junk car he bought.lol Thank you onetouch

I hope everyone had a good week.

I hope everyone had a good week.

From what I gather from reading posts here and researching the net to me it sounds like Cellcept is the go. What are our thoughts people. I am going to demand that I go on this drug as the last week has been absolute hell.

I am on cellcept (3000 mg/day) and prednisone (currently on 17 mg/day on a slow taper to hopefully/eventually 10) plus I have been doing a rituxan infusion every six months. The theory is that the cellcept and rituxan suppress the right components of the B cells in the immune system to keep everything suppressed enough that you don't need the prednisone ( or as much if it.) Prednisone is an amazing life saver and yet horrid at the same time. There have been times when I've had to do 1000 mg IV infusions of prednisone to smack down flairs. I'm so happy to be on only 17 a day now! I hope you find the right combo that works for you.

Thanks Kelly B

I just realized in reading through the previous posts that over 2 years ago I state that I had been on Cellcept for 18 months. I am still on Cellcept. I started with 5 500mg tabs a day (3 in the morning and 2 at night). I am now on 2 500 mg tabs a day, both in the morning. I noticed an almost immediate easing in my breathing, within a week of starting this drug. This has been keeping my breathing on an even level, and improved my lung functions. My pulmanary doctor has been talking for the last year or so about weaning me off of it, and putting me on something else. He's supposed to discuss this with my rheumatologist, but hasn't yet. He's a good doctor. I'm told the best in his field, but once I'm not sitting in front of him, it seems that he forgets all about me and my needs. I've been thinking about asking for a new doctor in that practice; one who might have more time to worry about me and what's best for me. I feel that we have to look after our own best interests, and if the doctor's treating us aren't taking care of us (no matter how good they are) then we need to find someone else. Good luck to all. You are always in my prayers.

My husband is also on Cellcept 3,000 mg. per day. That is all he takes other than vitamin D and Aleve. His rheumatologist prescribes the Cellcept and she does not want to switch him as he has been stable on it for the past four years. His lung function is at 50% and has not changed. I probably have said this in another post but I want to reiterate that his rheumatolgoist initially started him on Cytoxin infusions when he was first diagnosed and then she switched him to the Cellcept. I believe her initial aggressive treatment was the right way to go. Regards, Doreen

Hi All. Lildreamer, you have to find what is right for you. I am currently on 30 mg methotrexate once weekly, 20 mg prednisone daily, IVIG weekly, Rituxan every 6 months, as well as other vitamins and suppliments and precautionary antibiotics. I am doing great. I saw my respirologist today and am now up to 83% capacity with a 80% DLco and 96% saturation. This is awesome. When I was first diagnosed 2 1/2 yrs ago I was at 10% capacity and told I would not survive the week........ I know that other things are working for other people, but you could not ever get me to switch what I am on, because it is working for me!! This combination did not happen over night though. So keep trying, and change if it does not work. Be willing to try different meds, and different amounts. keep going until you find your magic cocktail. We can beat this!!! God Bless and keep Up The Good Fight. Wayne

Wayne, That is fantastic news!!! So glad you're doing so well! I'm going to be smiling for a long time after hearing that news. Tbear73 - Trust your gut. If you feel you need a different doc at this stage, then seek one out that is a better fit. Given what's at stake I think that's perfectly reasonable. Also, if your treatment is working and not creating any troublesome side effects, I'm wondering why they would want to change to something else? My best to you both, Kelly Kelly

Thanks for all the responses guys. So true Weiner, it is an disease that has many treatments options for each individual. I for one am still searching for the holy grail. It seems that the Cellcept is mainly to fix the lung issue. Is that correct or is it for ASS as a whole? It is just that most posts I read talk about this drug then mention how their lungs have improved, but no real mention of other symptoms, throat, leg weakness, boiling blood, cramps, hands, fingers and the list goes on.

Hi Lildreamer. I am not too sure about the cellcept, as I have not taken it. For me, what has really helped the lungs is the IVIG. it is also what is keeping me walking. I can feel it all over my body when I need more. It may be coincidence, but from my last lung function tests to the ones today, I was switched from every 3-4 weeks of treatment to every week. It actually added about 20 g total of the immunoglobulen that I receive over the 4 week period. I feel this is how I got my lungs up a little more, but I may never really know. Also, remember that some of the drugs we have to take work very quickly, while others can take months to see any kind of result. Just keep at it, and don't loose faith. God Bless and Keep up the Good Fight. Wayne

I think what medications work also depends on what Antisynthetase autoantibody you test positive for. We tend to talk about the lung issues the most because that's the one that is most life threatening. Plus we all seem to have a wide range of myositis issues. I had no myositis until three years after my AS diagnosis. In my body's experience, I know that the myositis, mechanics hands and swallowing issues go away first when my immune system is better suppressed. Then the lungs slowly improve. And it seems to take a cocktail of meds to address it all. But the achy joints, cramping hands and feet and slow to recover muscles seem to now be part of how my body works now. But like you, I am still and will always be in search of the holy grail. I'm seriously considering going vegan without any processed foods for 3 months just to see what happens. Have you also been evaluated for poly or dermatomyositis?

Hi Guys, I'm on Prednisone, Azathroprine, Plaquneil, Monthly IVIG, Estilopram, Endep, Bactruim DS, Yearly IV Aclasta, Vitamin D, Calcium, Stillnox and Endone for pain. I have been in medical remission for over 12months but have over the last few weeks become more breathless and coughing more. My specialist is away and my appointment is on May 1st so hopefully it won't get worse. Lisa

Yes was evaluated and showed Poly and dermatomysotis when in hospital and confirmed through biopsy to back of shoulder. Looks like someone has slashed me in a knife fight. Funny that, I work in jail. Have you had a go at the cellcept Alexgirl? I will pray that this is just a little glitch in the process and you jump quickly back into remission.

Alexgirl Will keep you in my prayers that all is well, and will stay well. God Bless and Keep up the Good Fight Wayne