What are your experiences with rituximab? We may add it to my current regimen of cellcept/mycophenolate and prednisone with the hope of stabilizing my lungs and muscle weakness and also be able to take me down or off the prednisone.

Rituximab made me recover rather quickly where Imuran and prednisone alone did not. A very interesting therapy that worked very well with me. Nowadays lot of scientific medical articles recommand Rituximab for the treatment of antisynthetase syndrome. Hope it will help you too !

Hi Kelly. Have not been on Rituximab, however have discussed in length with my Neuroligist. Can be a very good drug, but can also have serious side effects, so would urge to use caustion if you decide to use it. As I have mentioned to others on here, I have been on IVIG for a year now, and it is absolutely wonderful. Brought my lungs from 10% to 70% capacity, and has helped with the muscle weakness. I do 3 days of IV treatment every 3 weeks. It takes me about 3 hours per day to infuse. It is well worth it though. It means the difference between walking normally (or close to it) and having to use a cane. I will be taking this treatment for the rest of my life, but do it gladly. It really helps THAT much. The only side effect that myself or anyone else that I know (approx 300 of us on it at the hospital I do my treatments at) gets is an occasional headache after the IV. for me it usually only happens on day 3. Nothing a couple of tylenol won;t fix. Hopefully you find something that works for you. Take care and God Bless. Wayne

I'm glad the IVIG has been working for you. Such a relief to have a treatment that's working! My docs have been going round and round about IVIG or rituximab for me and feel the rituximab will be the best shot given how aggressive the AS has been with my lungs and that the dermatomyositis is "only" going after my hands. (Though this doesn't feel very minor to someone who has been a massage therapist for the last 12 yrs.) But my lungs are hovering at 49% capacity and 46% diffusion/efficiency. Trying to stay well enough to stay off the lung transplant list. Waiting for insurance to approve it, then hoping to get it underway soon.

Wayne, Are you on any other immune suppressant medications in addition to the IVIG?

Hi Kelly. I am on 30mg of methotrexate (taken 1 day per week) as well as prednisone (currently 20 mg/day)with it lowering 5 mg every 2 weeks. I am hoping it will be down to 5 or 10 mg soon, if my body tolerates it. Our hopes are for the methotrexate and IVIG to control the disease. So far so good......

Anybody have problems with blood sugar an the prednisone?

Hi Onetouch. I have not had a problem yet, but I do carefully watch what I eat, and monitor my blood sugar. I have been warned that the prednisone could cause diabetes. The longer one is on it, the higher the risks. Seems like with this disease, the medications we need to control it could be worse for us then the disease itself...lol Wayne

Over the last three years my A1C scores have risen into the high prediabetic range due to the prednisone. I do monitor my levels in the morning and have altered my diet both to keep the weight down and to keep the glucose levels more even. It's a tricky balance.

Thank you, something else to get use to ...Just have reteach myself what to eat....Everything taste different back to 80 prednisone a day that dag on cough....Not going to let it me get me down ....blood sugar been 200 to 300 .. Living life one day at a time.

Wayne - A funny thing happened a few days before I was about to try the rituximab! My doc's consult with Johns Hopkins finally went through and they highly recommend I do the IVIG and only go to the rituximab if that fails. I am relieved. So now waiting to go through the insurance review again and then on to IVIG. How tired do you feel during your infusion days? Trying to line up some assistance with taking care of my kids. Kelly

Hi Kelly. I am so happy you are going to getting the IVIG treatment. I will be praying that it is effective for you. It has been a Godsend for my self, and many others using it. I am usually pretty good on my infusion days. I do 3 days of it every 3 weeks. Day 1 I usually need a good nap after it (about 1-2 hours), day 2 is usually fine, Day 3 is usually fine, but can get a moderate to severe headache that night. Have learned to take tylenol on day 3 to prevent the headache, otherwise all is good. It will probably take them a while to get your infusion rate set up for you, to lessen the side effects. I sure notice my energy and strength when I have my treatment. I like to refer to it as my GO JUICE. Let me know how it goes when you get approved. God Bless and Take Care. Wayne

Appreciate your day by day review. That sounds doable. And I must admit I am feeling tremendously hopeful about this treatment and how it may aid my life. A few days every few weeks seems a good investment. I'll keep you posted on when we get going with it. Hope it's soon. Kelly

Hey All. New update.....kinda funny actually. I have been doing quite well lately, but am unable to get below 25mg prednisone a day. Because of the long term effects of the prednisone, my doctor wants me to try Rituximab infussions..At this point he feels the IVIG is doing well, but not well enough to lower the steroids, soooo...... He is thiking it is time to try the Rituxamab in a hope that it will put this into remission. We know the possible side effects can be bad, but we feel I will lose my fight with this horrible disease if we don't try. I am currently waiting for approval, so will let you all know how it goes. Kelly, have you gotten approval for the IVIG yet? I am really hoping it works well for you. I still pray for all of you every day. Take care and God Bless. Wayne

It is always an unpredictable ride, isn't it? I do feel like it's all one experiment after another to try to figure out how to control this aggressive disease. I am on my second round of IVIG. I did 5 days of infusions four weeks ago, and am now doing 5 more days. We'll repeat in four weeks again, then try rounds of 3 days. The first round I had headaches and was so tired but by the end of the week, I understood your "Go Juice!" phrase. I felt lighter than I had in a long time and my pain levels dropped off. My CK scores dropped into the high end of the normal range and my hand strength improved. Can't really tell how my lungs are doing but they always take so long to improve. Will repeat PFTs next week. We are talking about taking me off the Cellcept as they don't think it's been doing anything for me. They think it's really the prednisone I'm responding too. So we're discussing dropping the cellcept, continuing IVIG and then in another month or two decreasing my prednisone (currently on 20 mg/day). Prednisone is such an amazing miracle and also so incredibly damaging too. And like where you are now, we're willing to go to Rituximab if this course doesn't work. Other than the huge time commitment of the infusions, I am pleased with the IVIG so far. Time will tell if it keeps me stable. How long did you use IVIG? I pray the new course brings you relief with no side effects. I don't know about you but I think we're all ready for some miracles around here! My best to you, Kelly

Hi Kelly. I can not tell you how happy I am to hear that the IVIG is "working" for you. It has really done miracles for me. I have been on it, doing 3 days every 3 weeks for 1 year and 2 months now. I would not be able to walk without it. It is also what brought my lungs back to 70%, and has kept them stable. I truly hope it helps your lungs as well. I agree with you about the prednisone. I sure hope you can taper it down below the 20mg. That is where my problem is. I tried going below the 25mg, but really started to slip back. And we all know the long term implications of this med.....definately want to try to get off it, or at least lower it... I am very ready for a miracle or 2 to happen around here. God knows we could certainly use a few, and I think we may even have earned a few.........I know I won't stop praying for any of us. I look forward to hearing more positives on here. I will let you all know how things go when I get approval. Until then...... God Bless you all Wayne

I think about all the people on this site on a daily basis and also pray for us all. I am fortunate enough to admit that my doctors caught this disease in the very early stages. I am figuring this by reading what you all had to go through to get diagnosed, and am constantly amazed at how quickly my rheumotologist figured it out. I had always been a pretty healthy person, and one day everything seemed to happend at once. I was preparing food for a New Year's Eve party, and it seemed like everything I picked up, I dropped. My arms started feeling heavier and heavier, like someone had tied lead weights to them. And their was this overall tired feeling. Looking back, my hands were the first indication of all this, but a dermatologist wasn't helping with them at all. The lung issues didn't appear until about a year after I was diagnosed. The first PFT I took was nearly normal, but that changed over that first year. I was on prednisone for about a year and a half at the beginning. The highest dose was 20mg. I was weaned off of it when they put me on Cytoxin. After a year on that, and a year of bi-weekly bloodwork, they put me on Cellcept. I've been on it for 2 years, and have gone from taking 5 500mg tabs a day to taking 3. My lung functions have improved on Cellcept. I am the lucky one around here. I have not had to stop any of my normal activities. I have been noticing over the last 6 months that I get short of breath more quickly now, but my recovery time from that is 2-3 minutes to get back to my normal. The side effects of all the drugs they can give us is the major problem. That's why they have to change our meds every year or so. I have hereditary ostio-arthritis to go along with it all, so walking comfortably has been an issue longer than I've been dealing with AS. To get back on the issue here, my doctors are talking about weaning me off of Cellcept and putting me on Imuran. From what I've read here (not just this particular chat room, but across the entire site), I'm not sure I want to try that one. I have been extremely fortunate so far with the meds they've chosen. But I don't want to have an episode that could potentially put me in the hospital. When they start their discussion of drugs again, I'm going to bring up the IVIG and the Ribuximab as an alternate idea. We will see what happens. Everyone, keep doing what you need to do. Keep a positive attitude, because that really does help. And I will keep praying for us all. Terry

I feel the same way about this site...It has help me allot because no one in my area even heard of AS..My doctors are doing the best they can but they want me to go John Hopkins and with my breathing not recovering as fast anymore I think i will have to take that trip to Baltimore.I was Imuran at first and they switch me to cellcept at this point neither is working .I am on 80 Prednisone a day now. Thats not working...I just got out the hospital a month ago because of the breathing not recovering and the cough cough cough you can hear me cominig long before i get there...That is what putting my breathing in such a worse state...Now that my husband telling me that the company is cutting the insurance out in march is something i did not want to hear.... Part two of my life..

Hello I am on ivig 5 days every 4 weeks. I receive my infusions at home and have no problem taking care of my kids:). I do get a headache day 4 and 5 . I just take tylenol to keep it from getting too bad. I wish u the best:)

Heey all, I'm on Rituxan treatments 2 every 6-8 months. It really seems to be working well. They are very long days, 8-10 hrs infusion. I am very tired that day, I usually fall asleep during the infusion and am tired for the next two days. I'm due for another treatment soon. My doctors are very against the IVIG...I started my journey at John's Hopkins and continue it with doctors at UPMC Pittsburgh, my pulmonologist has me and 1 other patient with ASS and my rheumatologisthas been involved in the very few studies that have been done. John Hopkins actually life flighted me there after being in ICU for 3 months to get my lung transplant...after being at UPMC and the treatments I was able to be released with no transplant. I truely believe the drs and the rituxan treatment have brought me this far two years later.

Wow...My doctor just sent my information to John Hopkins I have been avoiding going for the past year but my breathing was doing so good I Dont understand what happen ...My cellcept and prednisone combination was working well until 2 months ago....but this coughing came back so strong...When I cough even the doctors turn around...I'm so use to it I cannot hear it anymore...I cannot even go to the bathroom anymore without coughing and trying to catch my breathe...

I noticed that The Myositis Association is going to have a live discussion about Rituximab on line on Thursday 12/20 at 12:00 noon ET. I think they're going to have Dr Oddis from University of Pittsburg talking about a major new study of the drug and taking questions. Anyone taking or considering Rituxan might want to watch it. Go to the TMA website for more info.

Hey Sickdude. Thanks for the FYI. I have checked out the site, and there is actually alot of information on there, much of it pertaining directly to Antisynthetase Syndrome. I would definately recommend anyone that has time, to check it out. God Bless You All Wayne

I know Dr. Oddis, he saved my life! literally, I was life flighted from Hopkins to Pittsburgh, just to be treated by him. When I'm admitted he tries to stop by, I am seen by a colleague in the same office now, but he is amazing!! I'm glad I saw this, thanks for the info!

Just checking in to see how everyone is doing. Does anyone receiving infusion treatments have a port? After three months of doing IVIG (5 days in a row each time) I keep blowing veins and developing phlebitis. The nurses ar suggesting a port may be a good idea if I'm going to have ongoing IVIG treatments.

hello.....I will be going to John Hopkins on 12 of feb....I am still learning my body.....I would have thought my breathing would be better in the winter not so....

Hi Onetouch. Hope things go well for you. Will be praying. I am not sure if we ever really know our bodies whn it comes to this. KellyB I do not have a prot, but will be getting one if my new treatment does not work. I was approved for Rituximab, and will be starting it in the next few weeks if all goes well. My doctor wants me to do a full IVIG treatment right before it, and then another a few weeks after, just to make sure I have the best chances. Ritux can take up to 6 weeks to "kick in", so we wnat to make sure I do not go down hill while it starts to work. If all goes well, I will be able to get off IVIG, and will only need infusions of Ritux every 6 months to a year. WOW..that would be nice. My veins are getting very hard to find...lol I have been doing 3 days of IVIG every 3 weeks for 1 1/2 years now. The thought of doing that for the rest of my life sucks, but we all do what we have too, right?! The ports are great, make things much easier on the system, and are very safe. The ones I was looking at are good for about 7 years. I have seen them used by others that also get treatment when I do. I hope the IVIG is working for you, and keeps working. I will update everyone when I do get my Ritux, and let you all know how it goes. Keep up the good fight all. God Bless. Wayne

Onetouch - will be thinking good thoughts for you on the 12th. Wayne - Thanks for the update. Hope the IVIG keeps you stable while the Rituximab kicks in. My first two months of IVIG went well. Had headaches & fatigue during infusions and then two days following the course had migraine and all over body aches/burning. Felt like an immune system storm going on in my body. Integration of the new antibodies? who knows. The third month was rough mainly due to developing phlebitis in my arm. I also had headaches, pain and high fatigue for the 9 days following. My CK results are back in the normal range. But I am questioning the cost of number of days per month I not able to function plus additional complications (blowing all my veins, blood clots). Too early to make a decision but I am questioning whether I should have taken the rituximab instead. WIll be curious to follow your course.

After 3 months of IVIG my lung DLCO continues to drop (down to 42%) so we are switching over to Rituximab infusions. Waiting for the orders to go through and get scheduled. I am glad we tried the IVIG as it did help my myositis symptoms and increased my energy. If only it helped enough to stop the attack my lungs. So we move forward. Hoping I have a good reaction to rituximab and the recovery from each infusion is easy to manage. Hope everyone is doing well.

Hi Kellyb. Sorry to hear that the IVIG did not help with the lungs, but very glad to hear it helped with the other issues. I got my first infusion of Rituxan on Friday March 8. They pre-medicated me, so I had absolutely no adverse reactions to the infusion. I will have my 2nd infusion on the 22nd. I was told it could take up to 6 weeks to feel a difference. I am anxiously awaiting...lol I will keep you all posted. The one thing I have found out about Rituxan is that it does "wipe out" the b-cells of the immune system, leaving us very susceptible to infection. Seems like we are "dammed if we do, dammed if we don't"...lol I will just be more careful when out of the house.... Take care All Keep up the good fight, and God Bless!! Wayne

Glad you've started the rituximab and that you had no adverse reactions. That's wonderful. Were you really tired after the infusion? I did chuckle at the thought of being more immune compromised. I am already ultra careful - from wearing masks in elevators and crowded places, never touching doorknobs or debit pin pads, always using my own pen, to my gallons of hand sanitizer and bleach wipes - how much more careful can we be?! I need a hamster ball bubble next! : ) Hope the next infusion goes just as well - and you see good stabilizing results.

Hey Kellyb Yeh, I was pretty exhausted after the infusion. It took about 7 hours, which makes for a long boring day in itself.... I agree with the immune suppression. How much more can w go. I think I single handedly keep the hand wipes comany and surgical mask makers in business. I am glad you can use the bleach. I can not have any scents of any kind. When I go to the hospital, they have to put "Do Not Use" signs on their hand sanitizer stations near me. The alchohol smell shuts down my lungs. My poor wife...I can't even have flowers in the house. Not sure how she puts up with me...lol oh well, w are still here, and I am not plannning on going anywhere. I am too stubborn...lol Hope you get on yours soon. if this works for us, it will all be worth it..... Keep fighting, and God Bless. Wayne P.S. If anyone ever wants to talk off this site, my email is parnellw@telus.net. I also have a Teamspeak server, so can talk live to anyone, anytime, for free. Can give the info via email if anyone interested. Since I am still not back to work, spend most of my day online talking, researching, and gaming....lol what a life...rofl.

Wayne, How are you doing? Did the rituximab help? I ended up doing two rituximab infusions in May. Tolerated it well but was exhausted for several weeks. Then I started to perk up. Six weeks following the second infusion my lung diffusion had improved from 44 to 55%. Will repeat the PFTs in another six weeks and if all continues to hold or improve, will try to reduce my prednisone. Still on that and cellcept. It's good timing as I've enjoyed having a little more energy as I try to keep up my kids this summer. Kelly

Hi Kelly. Glad to hear everything is starting to go well for you with the Ritux. I was just thinking I should post an update. LOL I got my first set of infusions in the Middle of March. I had no real problems, but I was also extra tired for a week or so after. I am not sure if that is normal, or just us. I also seemed to start "feeling" it after about 6-8 weeks. I am actually feeling alomost normal, even though I do still get exhausted quicker then I would like, I am good for a short trip to the store to grocery shop, or a walk around the neighborhood. My muscles are doing pretty well though. I have been tapering of my prednisone. I am down to 12.5 mg/day, and dropping 2.5 every 4 weeks. I even forgot to take them on Tuesday, and actually did not feel it. Usually I am in pretty bad shape by evening if I miss my dose in the morning, so hopefully that is from the Ritux. I am gonna keep on the high levels of methotrexate. At least for a while. it has now been 4 months since the infusions and I do blood work every 4 weeeks to monitor the Rituxan CD20 levels. They dropped to 0 almost immediately, and have stayed there until now. The latest blood tst showed they are starting to creep up again, so will probably get a second round soon. I was hoping I would go at least 6 months, but even 4 -5 months between treatments would be awesome. I have heard it can take a few rounds to build up in the system to where a person may be able to go 12 - 18 months between treatment. WOW, wouldn't that be great. I have been recommended for permanent disability pension, and am just waiting for word on that. Even if I am not able to go back to work, this really does seem that it is going to give me at least a half decent quality of life. Who knows, maybe it will even get better once the prednisone is really low, or even gone. I will keep praying that your lungs keep improving, and this keeps helping. God Bless and Keep on Fighting... Wayne