dermatomyositis, anyone have it?

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bella4
Regular Member


Date Joined Jun 2005
Total Posts : 263
   Posted 5/3/2007 3:20 AM (GMT -7)   
hi everyone,
 
hi to all the new members and old!  i have not posted in a long time as i am most often too physically exhausted from muscle weakness but i read posts ocassionally and i am sending warm thoughts to all of you.
 
it seems as though i have a new disease and am wondering if anyone else might have it.  dermatomyositis (DM) is an autoimmune disease that attacks the muscles causing weakness, sometimes very severe.  it also has a high incidence of malignancies and doesn't always have a good prognosis if not caught early on.  i have a new rheumy and he is great.  he heads up lupus research at ucsd here in san diego.  i am scared and wondering if anyone has any experience with this...thanks. 
 
also, kidneys are acting up.  not too bad (thank goodness) but i do have chronically low c3 levels associated with kidney involvement.  seems i am really getting sicker and i am scared.  thanks for listening.
 
bless you all!
 
e


dx jan 06:
sle, leukopenia, neuropathy, interstitial cystitis, raynaud's, dermatomyositis may 07

Post Edited (bella4) : 5/5/2007 5:39:04 AM (GMT-6)


Lula2ya
Regular Member


Date Joined Aug 2006
Total Posts : 50
   Posted 5/3/2007 7:49 PM (GMT -7)   
Hi bella.. I have polymyositis which is VERY similar to dermatomyositis. I'm sorry to hear about your dx. I was told when I first was diagnosed about dermatomyositis because I had a slight rash on my eyelids.. they were suspecting it but it seems I haven't had any more symptoms of it, just the polymyositis which is bad enough. I hope someone who has dealt with it can answer your post soon...hang in there.
Lu

Dx; MCTD/RA, Polymyositis 10/04, Pigmentary Glaucoma. 4/07
Rx; prednisone 5 mgs, methotrexate injections.


Jesus is the WAY the TRUTH and the LIFE.... John 14:6


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 5/3/2007 8:16 PM (GMT -7)   
Bella,
 
Go to www.myositis.org and you will find lots of people with DM.  I have PM and while it is also a myositis disease it manifests itself differently.  PM affects the cells themselve while DM affects the capilaries.  Many of the symptoms are the same but they are different diseases.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
 
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


bella4
Regular Member


Date Joined Jun 2005
Total Posts : 263
   Posted 5/5/2007 4:53 AM (GMT -7)   

hi lu and bill!

thank you so much for responding.  bill, that website is great.  i had looked at it before but did not realize that there was a forum.  i am so glad because with my lupus brain being what it is, i did not even think to look for a forum for people with muscle diseases, LOL!!!  

how are you all feeling?  how are you being treated?  i see my rheumy on tues and we are going to start new meds but i don't know what.  however, i know it will be more aggressive than anything i have been treated with in the past (i am only on plaq now due to bad side effects from mtx and imuran).  i have been pretty unlucky with meds!  did either of you have a muscle biopsy?  i had one a week ago and it is really starting to hurt again and it is swollen, itchy and red around the sutures.  wondering if it is infected?...i am really tired of being tired and weak all of the time.  how do you all cope?

thanks again!

e


dx jan 06:
sle, leukopenia, neuropathy, interstitial cystitis, raynaud's, dermatomyositis may 07


Alepereza
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 1/17/2013 10:09 PM (GMT -7)   
Hi i was wondering if anyone in california have dermatomyositis?

Alepereza
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 1/17/2013 10:10 PM (GMT -7)   
Hello Bella your not alone I have juvenile dermatomyositis i am nineteen years old now and I have been having it since i was younger.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/18/2013 9:46 AM (GMT -7)   
Alepereza - You might want to check the dates on the threads you post to. This thread was last active in May of 2007!!

To get more current comments, start a new thread!

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 1/19/2013 4:22 PM (GMT -7)   
Bella,
 
I actually have polymyositis which is a sister disease to dm and also have lupus.  My case was extreme and a long story but it was finally treated successfully by IVIG when prednisone failed.  I have been in full remission for 7 years and off all controling meds for over 2 years.  Life is different but good so myositis is treatable.
 
In 2005 I did have an mri and a muscle biopsy and many other tests due to the extreme and complicated nature of my case.  If there is uncertainty, a muscle biopsy will clarify it if it is taken from the right muscle.  Some cases can be patchy and docs will do an mri first to find the inflammation.  My biopsy took a long time to heal but I was near death and on high doses of prednisone....not healing very fast.  Taking a hunk of muscle tissue out of an inflammed area adds insult to injury for that muscle.  Contact your doctor if you think it is infected.
 
There is a Facebook closed group called dermatomyositis and polymyositis patients that is pretty good.  I am on there as well.  Ask to join, it is only for patients, no friends or caregivers and is a closed group.
 
Bill
 
 
 
 
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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