Hey all, I am brand new at this. But I am wanting advise on weather I should have my son tested again. He has been in full remission for 7 years. he is now...
I had JDM as well. I have been in remission for 25 yrs. I had a muscle biopsy about 2 yrs ago and they determined that it was totally gone. So there is hope....
Hi there, Lisa, I had JDM very badly in the days before Prednisone (the fifties and sixties) and led an interesting childhood trying to ignore the intrusion of...
Hi, This is Donna Anderson, mother of Colby now 8. He is doing great currently. The ticket for him has been the IVIg treatments. He is still on pred,...
Hi my name is Brenda my daughter Taysha was diagnosed with J.D. in April. She was very swollen rashed and weak. She was misdiagnosed for a month with fifth...
I was dx with DM in 1996. I was 28, mother of a 4yr old boy and newborn boy, married 5 years. You can read my story at www.rs.option8.net on the Stories page...
Dear Brenda, Our son also has experienced lack of weight gain and has been on prednisone for over 2 years now. IVIg has helped him as well. No one is sure...
Some children develop lypodistrophy, a side effect of the JDMS. The body cannot not maintain fat and there is a factor of muscle wasting. Dr. Rider of the...
Hi Everyone! Roly is still not in remission but we are still working on it. He now is playing tournament paintball on a team here in Miami. His blood tests...
Hello Marisa, Long time no talk to. I am sorry to hear that Roly is still not in remission. I hope it happens soon. I am trying to get this group active again....
I too am guilty of not posting here for a while. I've been busy being group moderator for the JRD site for kids with JDMS who post there. I'm still keeping...
Hello there, do you know if this drug, Oxandrin is of any benefit to older JDMer's. I am 28 and been in remission for 14 years and have thin arms and legs, and...
Hi I still alive, and once a week more or less try to enter at web, this autum is not quite good for me. the last is i have a cervical herniation because of ...
Oxandrin is a muscle building steriod. It was used by athletes in the 80's to bulk up and was dropped for stronger steriods eventually. Studies have found...
Hey ho, folks! Lurker, Judith, from the Great White North reporting in. (Salute) I am so thankful that I am Canadian and do not have to "do" Thanksgiving and ...
Thanks for you reply. Sorry I didn't respond sooner. yahoo account is new to me and I forgot I had it. And I can't wait for puberty to be done and over with....
Sorry I neveranswered back. I appreciate the answer to my question. And I was new new to Yahoo and forgot That yahoo is hwere all this information was...
Hi, I am Bobbi My daughter is Mary Lou. Mary Lou is still doing good, She is still in remission. She is on the High school Dance team and dances for two...
Hello everyone: My best friend 31yrs old diagnosised recentley with dm, she was hospitalized in Dec for 5 days she hasn't seen much improvement since leaving...
It will take time to get her back to a normal state. I would say stress can make it worse. Does she have any family that can help her out? I would suggest...
Stress is very much a factor. Have your friend look into IVIG? There is a wonderful doctor in Louisville, Kentucky that is doing great research into DM. Dr....
December, 2004 the illness is back. We started back on Methotrexate and that hasn't helped. So, once again it is back to the Hospital for IVIG infusions....
Has anyone out there tried CellCept? I've been on methotrexate and azathioprine, also prednisone and plaquenil. I've lost my hair twice, my scalp itches so...
Gloria I was diagnosed 2+ years ago with dermatomyositis. The doctor prescribed methotrexaate and prednisone. I could not tolerate the methotrexate so the...
Hi Patty, Thanks for your info about CellCept. I am still having second thoughts, but last night I was in the grocery and got down on my knees to get...
