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Old 05-21-2005, 10:02 PM   #1
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Sis58 HB User
Dermatomyositis questions

I hope I can find somebody with DM. My dr. was very concerned the 1st 2 times I saw him, but yesterday, he said because my muscle enzyme tests are okay, I don't have DM-just a rash. The rash is now under my eyes also, more on my hands and fingers, muscle pain in my right upper thigh and I have been very short of breath. Also quite fatigued. He listened to my chest and said I was really wheezy. He asked if I had asthma and I said yes-but it has been under control very well for 5 years. The shortness of breath is something new. He said it was an asthma flare. I felt so bad when i left. I know i don't feel good any more. I work full time and play volleyball every Thurs evening. But lately, it is all I can do to pull enough strength/energy together to go, and then I leave early. I just need to talk to someone who understands. I feel like I am going nuts.

 
Old 08-17-2005, 03:06 PM   #2
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Nikkamo HB User
Re: Dermatomyositis questions

I have had DM since Oct. 2004.

 
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Old 05-23-2006, 09:14 AM   #3
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Re: Dermatomyositis questions

I have dermatomyositis that was diagnosed 4/04 by a dermatologist who then refered me to a rheumatologist. I live on the eastern shore of MD and it became obvious that the DRs I was seeing had never seen a case of the disease as they had only read about it in medical books. My DR from Baltimore for my diadetes got me a rheumatologist at John's Hopkins.
My disease goes in and out - active to inactive and back - and that is irritating but there is little that can be done. My DR is a research DR so I am on prednisone, methothrexate and humira [forgive my spelling] and today feel pretty good but it is active.
This disease does not go away. The blood levels can be perfectly normal and the disease be active - the meds keep the blood levels normal.
I have pain, muscle cramping, neck pain, shortness of breath, fatigue, trouble sleeping, trouble swallowing, trouble holding my head up - I have these things not all the time but in and out.
These are only my experiences and my suggestions. You need a DR that you have a very good relationship with and will listen to you as the patient. You need to keep a positive attitude and keep your faith, if you are a believer. You need support around you as this disease can be very difficult to deal with physically and emotionally.
I hope you feel better soon.
Muriel

 
Old 07-02-2006, 11:43 AM   #4
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Location: Boise, ID, US
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Achim HB User
Re: Dermatomyositis questions

Not much I an add except to share the pain. I have been diagnosed 6 months ago. Have the butterfly on my face and my upper body is all read.....slowly seems to progress...am an Plaquenil for now. Prednison is not something I want to use on a continuous basis.
Have tried vitamines, detox tablets, now on Glyconutrients....will let you know if I find something that works.
Best wishes
Achim

 
Old 07-02-2006, 11:48 AM   #5
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Re: Dermatomyositis questions

how old are you all. I am 46, vagely remember having taken Penicilin a while back. People say this may trigger DM. My dermatologist mentioned I should move to Alaska given the sun light here in Idaho. Does anyone with DM have same issue with sun light? Has anyone tried Glyconutrients?

 
Old 08-11-2006, 12:42 PM   #6
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Shenail18 HB User
Re: Dermatomyositis questions

Hey I was diagnoised with DM in Oct 2004 and I found a great Rheumtalogist. I live in South Carolina, and he managed to keep in under control. I take 10mg of prednisone a day and an aleve for the pain which is minor. It it important to take it easy even when you feel fine. Be lazy its encourage your Dr. will tell you that. However in the beginning it sucks you see every type of specialist imaginable plus the bloodwork and test and medications. Also you might have to have a biopsy I did, it gives you a 100% diagnoises. If you have any questions just give me a call (803) 429-8641 the name is Andrea.

 
Old 08-11-2006, 12:45 PM   #7
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Shenail18 HB User
Re: Dermatomyositis questions

Hey what are you taking for the butterfly rash on your face b/c nothing I've taken as worked thus far?

 
Old 08-21-2006, 07:01 AM   #8
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unh4ppy HB User
Re: Dermatomyositis questions

To start with i'm unh4ppy about something else!

This story has a happy ending - for now at least!

I was diagnosed with dermatomyositis in December 2001. My GP misdiagnosed me 3 times, i finally saw another doctor who referred me to a rheumatologist. My symptoms came on gradually over a space of 2 months before I was diagnosed. It started with a rash on my elbows which spread up my arms, my fingers started getting purpley nodules on them, i started getting really achy backs, my arms got weaker and weaker - first change was finding it difficult opening doors - progressed to me being unable to brush my hair, do up my bra, or hold a knife and fork. I had tightness and aches in my fingers, my thigh muscles were very weak, i got breathless really easy and my body temperature was high. I also had the butterfly rash over my nose, my eyelids were also affected and i had a pink disc shape on my forehead. I felt so weak and tired. I was admitted to hospital where I had LOADS of tests done on me over a period of weeks (including muscle biopsy, skin biopsy, blood tests etc). My enzymes were also coming back normal, but the specialist told me I had all of the classic physical symptoms of dermatomyositis. My MRI scan showed the typical discolouration of my thigh muscles that you get with dermatomyositis. I was released from hospital without treatment, but by my follow-up appointment the following month I was a lot worse. I could hardly put one foot infront of the other, and I was also developing swallowing problems. My specialist put me on 20mg of prednisolone which were gradually reduced over time. The dermatomyositis settled with the steroids after about 7 months. I then took the prednisolone at a low dose to maintain my health. After 2 years of steroids I then came off them completely. I now haven't taken steroids for 2 years and I have no real symptoms of the illness. The specialist has told me that it may keep recurring or it might have been a one-off, there is no way of knowing. I get VERY mild flare-ups every now and then, but up until now at least, i've not had to re-medicate, it has always settled itself down.

 
Old 08-21-2006, 08:47 AM   #9
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unh4ppy HB User
Re: Dermatomyositis questions

i'd also like to add that I wish everybody who has dermatomyositis good luck and hope that you have some 'remission' time like me x

 
Old 09-15-2006, 02:48 PM   #10
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Re: Dermatomyositis questions

I am slightly overwhelmed reading these posts. I just found this board today. I was dx with DM 31 years ago and it has been in remission for the past 29 years. The years it was active in me were a long time ago but not easily forgotten as you will all understand. To read, after all this time, about others going through what I did when I was little... chokes me up a bit. I was not able to raise my head, lift my legs or arms high enough to get dressed, couldn't turn my head in the mornings, could not walk except slowly on perfectly flat floors, could not get in or out of bed or the car alone... etc. I don't remember the rash but am told it was present on my face.

I still have some symptoms I believe (but don't know) are left over effects of the DM - weak muscles (though they are functional now); trouble with inflammation in muscles, sinuses, and joints; tire easily; some RA symptoms...

Some Drs think they see Lupus showing up in my blood but other Drs say it's the DM showing up instead.

When I had this disease, 30 years ago, there was a 50/50 chance of survival, and in fact they told my parents I'd be in a wheel chair for the rest of my life and that I would die young (20s). Well, I took a lot of Cortisone, did a lot of physical therapy exercises, spent a long time in the hospital, and I am here to offer you all some hope... I never spent a day in a wheelchair though I did have to basically learn to walk again once my strength returned, 29 years of remission and living a life where nobody even can tell I ever had this thing unless I tell them... I wish you all the same recovery.

 
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