I am also JO-1. Didn't know others were on this site. Glad to know.
momcoach

When I was first diagnosed, I knew very little of DM, but all of you helped me through those very difficult days. I tell my Rheumy about you all of the time. I had my first IVIG treatment a few weeks ago and I have had days when I feel almost normal. I do also take Cellcept, MTX and a little prednisone but moving forward. Thanks to all of you for your help and continued support.

I knew that i am JO-1 positive at first when i was diagnosed, For the first 4 years i had many flares, It was hard for me to tamper the Prednisobe.
Now after 7 years i am finally off. Lets hope i can manage without it.
Michael

Hi Momcoach. Did not know you had JO-1. Hope you are doing well. Best wishes Autumm.

Hi Michael. It can be hard at first to taper the steriods with JO-1, its great that you are there now, long may it continue. The docs know so much more about treating it these days. Best wishes. Autumm

It's so lovely to have news of you all. I had no idea there were more of us with Anti JO. I find it so comforting to know we are all doing well as most of the stuff on the Internet just scares me, its wonderful to hear from everyone. Keep in touch. Autumm

Hi McCourtjs. I know it's been a long haul for you to get the right Meds and finally you are starting to feel well.that is such good news. My Rheumatologist is always pleased I connect with this support group but gets really cross if I research the net. He says most of it is rubbish and I have come to understand he is right. Well done to you. Best wishes. Autumm

Michael - congratulations on your taper off the prednisone. So tough, and takes so long. I have the same goal, but am not there yet. Hope you stay off of it for good!! :-)

Autumn - more than 5 years in for me, and still trying to find the magic combination, but like all of you, I refuse to give in to this condition. I simply do the best I can each given day. Some days it is better than others.

Blessings to all of you!

momcoach

Great to hear how everyone is doing. I am doing well too. IVIG keeps me going. down to 4mg medrol, and hoping to add Methotrexate this week to spread the IVIG out more than 28 days. Conference was great, to see folks actually like you and managing too, was a great boost to me.
I am here infrequently and more often on TMA and Facebook groups.
My best to everyone...
Shawna

Hi Shawna. Good to have news of you. Keep doing well, will be interesting to see how the MTX works for you, as a Nurse you know it will take a while. All the very best to you. Autumm

Hello all. I'm doing ok lately. At 2.5mg of prednisone and holding as my CK have gone up over 100 so want to wait until they are below 100 to go down to 2mg. Started SCIG last Thursday so starting out giving myself 4g twice a week then will do the 8g once a week. Hoping this will be as good as the IVIG which I had to quit because my rheumy went on sabatical and did not refer me on. So going the sub cue route with the immunoglobulin. Well let you know if a couple weeks how its making me feel.
Also started a return to work program and an teaching two half days a week, next week I go up to three half days. Will keep you posted on that too. So far I love being back with students so that is great!
Roxanna
having some symptoms with the CK being up... tired legs, heavy arms and really tight head and neck muscles but nothing too too bad

Hi Roxannak. Good to have news of you and to know you are doing well and getting back to your work. Well done. Autumm