Hi, I'm new. My Dad just found out he has this and after finding out all in the last few years he has carcinoid, diabetes, neuropathy, pemphigus and Raynaud's...
Hi Noelia, I think the cataracts are caused by the prednisone yes - unfortunately steroids have a lot of nasty side-effects. And yes it affected my growth as...
Hi again Joanne, Nice to hear from you again. :) Do you know if the wheelchair situation is permanent or can you improve? (Sorry to ask, I don't mean to be...
Firstly hi Laurie, this group isn't actually very active but feel free to stay around, sometimes there are some good topics and advice. You should check out as...
Hi belong to this group and th OurMyositis@yahoogroups.com as well. I am glad to make your acquaintance and hope to "hear more from your at the much more...
I am the operator of this group. As of now I am switching this group over to where I can control the subject matter in this group. I am tired of people posting...
I just want to see how everyone is doing? Just for everyone's information, as some of you already know I had Juvenille DM. Well my mother has recently been...
Hey ho, there. I'm in a chatty mood today, so I thought I'd replay. My late aunt asked me to have dinner a while back and meet her friend who had just been...
I have not gotten anything from the arthritis Society but I have done research online. What is interesting is that I had Juvenline Dermatomyositis and now my...
Hey shewolf, That reminds me of how my younger son, now 24, used to say the word "wolf". It always came out as "woof". Auto-immune disorders seem to have...
My father was exposed to Agent Orange in Vietnam. My family and I have believed that the cause of my JDM was because of the Agent Orange. I figure that the...
Hey Tammy, One year ago exactly, the weakness, skin involvement (I thought it was sunburn) and swelling were so bad that I could not hold a phone to ear for ...
I don't remember much of when I was diagnosed. I was only 3 at the time. I remember hurting and not feeling good. I also remember bits and pieces of times I...
Got a message on my answering machine that my son austin is suppose to go off his ora pred because he has high enzymes does anyone know what that means. I am...
Dear Hayley, My son also has JDMS and is on orapred. I'm not sure what they were looking at. The muscle enzyme test looks at how the disease is (though not...
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 ...
