dermatomyositis life expectancy

Are you saying that Majority of kids can go into remission? I have a 12 year old daughter who has just been diagnosed with juvenile dermotyositis yesterday she's been feeling it f for the last 6 months. She got put on steroids but I'm just now finding out the severity of this. I don't know what to expect because all the results are so different. Anyone that can help me please do. Thank you.

How are you doing now? Did your natural approach work?
I hope you get this.

I was diagnosed with Dermatomyositis in 1/2017 because I have a fatty liver I can only take the Imuran at low dose. My insurance refused the retuximab that my rheumatologist ordered. There is no other treat for me. It is frustrating as all get out. I'm tired of fighting this. Just plain tired. Not suicidal just tired.

Hello.

I am a 44 year old man who was diagnosed when I was 12.

I had a very severe case. I was sick for a long time. Went through chemotherapy and all kinds of treatments.
I was told it has shortened my life, but as of today I am fairly healthy and been in remission for 27 years.

Hi can I please have your email adres

Hi teestarr,

Hoping I could hit you with a few questions. My son has been diagnosed with DM. All started around 2 1/2 with a simple fall at the park on a tree root from to downward spiral of immobility. It was a mystery for us and we went through dozens of specialist with no certainty of anything. Was originally diagnosed with an accelerated form of DMD with paralysis by 4-5 but never gave me definitive "proof positive" so to speak. Got the run around with insurance and dr's over doing a DNA test to be the ultimate deciding factor so pushed for a 5th or 6th opinion at this point. Wasn't shopping diagnosis or which I preferred, just a diagnosis. Long story short and if you've been through this you know what a long story this actually is (biopsies, mri, X-ray, hundreds of blood test etc and all to a 2 year old little boy), we took him to this 6th opinion and he was diagnosed with DM, been on medication for close to 9 months now, methotrexate weekly at home and IVIG monthly. He has since regained and great bit of his mobility and since has recovered walking, slight running. Still has a limp from time to time and does get injured easy (jumping or any medium to hard leg impact vertically).

What can I expect over the next few years? What are the tricks of the trade so to speak, what made your and your little ones life easier?

Hi,

I hope you don't mind me emailing you, it has been over a year that you posted to Louie that he could email you with questions. I happened to be on the web looking for information about adults who have had JDMS. My son had this disease when he was in 5th grade and was weaned off Prednisone and Methotrexate completely in his 8th grade year. He had a growth spurt after that and has been living his life fine. I have noticed though that he is always complaining of aches especially after weightlifting, there always seeps to be complaint of this or that sore or hurting. I always remind him of his past and tell him that he always has to take into consideration. If you dont mind me asking, how is your daughter overall? Does she complain of any of these kinds of issues. My son is also seems to fight tiredness a lot. He did find he was vitamin D deficient. Do you know of any good online resources for books of JDMS aftermath? Thank you. I appreciate any info.

Sincerely,
Monica

I was diagnosed 9 years ago. I was referred to a rheumatologist. She put me on a steroid and told me to avoid UV exposure for the rest of my life. (Sun and sun lamps are terrible!) I wear raincoats and sunscreen everywhere, and I coordinate my attire with ladies' baseball caps. The skin irritation and redness have eased eased off, except for an occasional flare, but the muscle weakening requires me to slow down and not overdo repetitive movements. No "Reps" exercises, but I do gentle stretching, which helps my muscles. No more swimming pools or outdoor activities. I'm thankful that this came late in life. My heart goes out to those who are young when diagnosed.

Kimberly - I so appreciate your detailed description of your disease(s), but found it increasingly difficult to continue reading because of the lack of punctuation. I feel your written experience would be very helpful others with similar medical problems, so if you write again, can you please add periods at the end of your sentences? It would make your statement so much more understandable. Thank you!

Where who and what did you do to find this team of natural healets. Im very interested