Antisynthetase Syndrome: Anyone else?

Hi. What is your treatment?

It’s crazy to me how these rare diseases are coming out. The frustrating thing is that you can’t get clear answers other than they don’t know how and where this comes from & that there isn’t a lot of medication to help.
I was told with meds, and physical therapy this could go into remission in a few years.
Do you also have ILD?

Yes, that is why I was Soo happy to see your post. Not that I want you to suffer through this, in fact when I pray for myself I will include you…I hope that we can encourage each other as we are on the same journey. Thank you for communicating !

Sorry didn’t see your other question…right now I am on a very low dose of Cellcept 500mg 2x daily. The doctors wanted to do a higher dose but because I am small less than 100 pounds couldn’t be done. So I also have to have an infusion every six months of Rituximab (not sure of dose). I started feeling better maybe 2-3 months later. I still am not where I would like to be, but better. Can’t take prednisone (heart issues). Hope this wasn’t too much information. Again, thank you.

Your treatment is similar to mine. Had my infusion about a month ago. Had to stop Cellcept for awhile, they will introduce it again. I also take Atovaquone. I’m somewhat better, however not myself.
Could you please share your symptoms? I’m not sure if my symptoms are from prednisone or the symptom.

Yup. I have it too. Female, 62yo. Diagnosed (and treated) after 6 rheumatologists misdiagnosed and mistreated me for 5 years.

Fortunately, I am a bulldog and have an equally tenacious doctor who cracked the code before very serious lung damage done. Impacted joints, skin, lungs. Experienced fatigue and raynaud’s. Am anti JO1 positive.

Had been on a number of medications prior to proper diagnosis. Now treated with two rituximab infusions two weeks apart, twice yearly. I would say I am in complete remission and want it to stay that way. I guess one advantage that I seem to have had is that I am fit and am exercise nut, which seems to have helped. My two worst symptoms were terrible Mechanics Hands and small joint arthritis. All ok now!

Perfect timing! I just this moment got back my labs today. With all my numbers in normal range I am in remission. I was told to keep doing what I have been doing with medication and have another infusion in April. Funny thing, although I am in remission feeling much better I still feel tired and achy. Not all the time. Could just be age…grandchildren. I also have other issues (heart wise ). It started with being tired all the time. I also lost a lot of weight. My whole body ached. If some would ask me what the pain felt like I couldn’t really give them a good idea of how it felt. I was in the hospital at least four times before having the test for this. It came back positive . I was put on the cell cept and medication for my heart. When I was diagnosed in April, that is when I started taking the medication and had an infusion I didn’t start feeling better until maybe December and like you said, I feel better but the symptoms are not all gone. I still get tired easily almost overwhelmingly tired easily so I take things slow. My doctor advise me to try and keep my stress levels down as much as possible. Still supposed to stay out of crowds and carefully be around family who may be ill. I am not sure what remission is but when I find out I will let you know.

I am so happy to finally find others with this disease and hear what you are going through it helps me better understand what I’m going through it’s really hard to explain to others how it feels

First of all, thank you everyone for sharing your experiences with me/us. Life seems a little easier when you know you are not alone on your journey through. I am grateful and inspired by you all. Question 🙋‍♀️ does being in remission take all the symptoms away or just make them more manageable?

For me while my labs are fairly good a couple are always a little elevated in the inflammation ones daily I feel a little sick not the noxious kind more like poisoned with muscle and joint pain ranging from 2 to 8 out of 10 some excersize is good but to much is bad then I get flair ups where I really feel sick I’ve tried three arthritis meds but they are to hard on my guts and while I was on prednisone the pain was better my diabetes went from diet managed to insulin everyday so the doctor took me off that to so I only have acetaminophen and ibuprofen to help with the pain