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Old 01-28-2008, 04:03 AM   #1
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malone134 HB User
Really Confused About My Bout with Dermatomyostitis

Hello, I'm new to the boards and really concerned about my first bout with dermatomyostitis, which occured in Sept of last year. I'm really glad I've found a forum and support group because honestly the pain isn't something you can really convey to family and friends. It's lonely if you ask me.

I'm confused because unlike what I've read thus far many of you are currently on medication. I'm wondering since they feel my bout with DM happened as a result of a viral infection (my infant son got extremely ill, and I did as a result), there was no need for any additional treatment. They did determine my muscle enzyme levels were elevated, but no muscle biopsy was conducted. I too am wondering if anyone has any information about the link between postpartum delivery and the onset of myostitis...I've heard there is some increased likelihood after having a baby, but I haven't found sufficient proof.

Thanks for any feedback you can provide. Many thanks for your time.

Warmest regards, MMB

 
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Old 07-12-2008, 04:13 PM   #2
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Belvia1 HB User
Re: Really Confused About My Bout with Dermatomyostitis

Quote:
Originally Posted by malone134 View Post
Hello, I'm new to the boards and really concerned about my first bout with dermatomyostitis, which occured in Sept of last year. I'm really glad I've found a forum and support group because honestly the pain isn't something you can really convey to family and friends. It's lonely if you ask me.

I'm confused because unlike what I've read thus far many of you are currently on medication. I'm wondering since they feel my bout with DM happened as a result of a viral infection (my infant son got extremely ill, and I did as a result), there was no need for any additional treatment. They did determine my muscle enzyme levels were elevated, but no muscle biopsy was conducted. I too am wondering if anyone has any information about the link between postpartum delivery and the onset of myostitis...I've heard there is some increased likelihood after having a baby, but I haven't found sufficient proof.

Thanks for any feedback you can provide. Many thanks for your time.

Warmest regards, MMB

 
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Old 07-12-2008, 04:15 PM   #3
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Belvia1 HB User
Re: Really Confused About My Bout with Dermatomyostitis

Would like to know more of anyone else with a bout of DM. I also contracted after child birth. At present only take pain medication but have been on other medication.

 
Old 07-14-2008, 01:30 AM   #4
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Join Date: Jun 2008
Location: Encino, California, USA
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allizfullofluv HB User
Re: Really Confused About My Bout with Dermatomyostitis

Hi There,

I am actually on this site following a "Lisfranc" foot injury and decided to check out the Dermatomyositis board since I fought a bout of it back in 1999. I read your post about flaring up after having a baby so I wanted to share my experience.

I came down with Dermato out of the blue in June 1999 at the age of 23 (went into hospital on my bday) It took so long for them to diagnose me that I was very ill by the time they figured it out. I went through battery of tests. MRI, muscle biopsy, angiogram, was in the hospital for 3 months. I was diagnosed with Dermatomyositis with associated Ischemic Colitis. The stomach pain was cruely painful..I had a 3 year old son at the time who is now 11. Got to the point I couldn't walk or eat. I was on heavy prednisone and methotrexate for 1 year. I was told I would be on these meds all my life. And that on the metho I could not get pregnant.

After one year I was doing well. The steriods messed up my metabolism I am heavy now even though I don't eat more than 1200 calories a day, and my skin ...lotta stretch marks. Other than that I have not had anymore flare ups it has been as if it never happened. I also have two more kids. I had Cole in 2003 and Isabella in 2007 and I am just fine...well other than this foot injury. I do think the steriods have negative affects later on in your life. I get achey and I am only 31. I get fatigued quicker than others but I live a normal life. I do think my foot injury is due to my bones being weak from the steriods. I have 3 metal screws placed in my foot to hold the bones together. I tripped on the sidewalk and dislocated all the bones in my foot. Not a common injury. I am worried about the screws triggering my autoimmunity and my Dermato flaring but so far so good.

Hang in there...you will get better.

 
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