I haven't been on in a while. In fact I have only posted a couple of times, however, I am now in need of some advice or encouraging words or something. My...
Hi Nichole, Sorry to hear that Jona is having a flare. In our experience and based on what I have heard, there is little predicting how severe a flare will be...
Does anyone know what tests they run to figure out if you have myositis or dermatomyositis? I have been going through a ton of immune testing, and have had a...
Dear Kitty, My son had a skin biopsy, blood tests (cpk and adolase main ones for dermatomyositis) and an mri. Combined with the clinical picture a positive...
My son is on Prelone and Methotrexate and has had JDMS 3 years this spring.He's almost 10 now. We sailed right thru our first year.He actually got a lot...
Hi I am looking to talk to some people who have Dm who are in their late 20's or early 30's. I had a flare of Dm very bad and I am currently so weak and tired...
Hi! I am 34 and was diagnosed last april. I am sorry u have this, too. It has been a rough year for me as well. I just had a significant relapse and was on...
Thanks for writing back! I am a female aged 28 and I was diagnosed with DM on my 26th birthday while I was hospitalizeed. unfortunately took a very bad turn...
Hi, I was diagnosed in my 50's, but I'm certain now that I had my first flare at 17. Back then, I'm sure a country doctor had never heard of dermatomyositis....
I was diagnosed with DM in Feb. 2002 at the age of 59. For two years prior I had chronic back pain, pain down right side of R. thigh, lack of energy,...
Hi! I am in my mid 30's and have recently been diagnosed. After the birth of my second child, I began to have a rash on my index fingers. (Just thought it...
This is a cross post. I hope that's ok. My DD Savannah was diagnosed with JDMS in November of 2001. She's currently taking prednisone, and receives monthly...
I believe insomnia is a side-effect of the medication. I have suffered from insomnia despite the constant fatigue since being diagnosed with DM in April 2002....
Smallpiecer... I was 28 when diagnosed, I am now 34... I was dx with Dermatomyositis a few months following the birth (June) of my second son in 1996. I was...
Is the doctor the one directing the dramatic decrease in prednisone? It can be extremely dangerous to drop / decrease prednisone too quickly... I know (first...
Let me ask you when you started the antibiotic therapy,,,,did you become very sick at first?? My husband will be starting his therapy in May as soon as I get...
I wanted to let everyone know there is hope. I was diagnosed with Juvinile DM at the age of 3. I recently had a muscle biopsy. The disease is gone.It is...
Penny, I was very very sick with DM (muscles & skin) when I first used AP (antibiotic protocol), I did not herx (get sicker before getting better as sometimes...
That is great! I am in remission... I never thought about having another biopsy done to check... hmmm. Did your doc request it? Congrats to you! Liesl...
I am so happy to hear about you both going into remission and the disease being gone. My daughter, Jona, who I wrote about earlier who just relapsed is now...
I had to have blood tests (CK level check), EMG (very unpleasant test) and finally a muscle biopsy to confirm diagnosis then chest x- rays, mammogram and...
I think the disease has to be active for a doctor to get an accurate reading. I tried to convince my first rheumatologist that I thought I had dermatomyositis...
I am so happy for your diagnosis! I have been in remission for about 2 years and succesfully given birth to my first child (who is healthy as a horse) and...
The test results are back for Marcus' last check up. CK was 78 in November and is at 600 now. All other tests were in the "high-normal" level. We've taken him...
I am so sorry to hear of the flare. Jona is going through one right now also. I know it is very discouraging. How old is Marcus. Jona is just 3 and was...
I too am sorry to hear of Marcus and Jona' s flare. I wrote earlier about Colby (6) and his flare. He is now on methyltrexate shots weekly which we hated to...
Marcus will be 10 in a few weeks. He also has a cold he's been fighting for over a month. The doctor didn't want to give him any meds for it due to the other...
Your baby Jona is in my prayers and in my heart... if I could take her DM and battle it myself I would, it breaks my heart to know a child is suffering with...
