dermatomyositis life expectancy

i was diagnosed 7 months ago.  The kicker is I was training for a half ironman at the time and swore I was alergic to my new swim goggles. steroids did not help.  long term Plaqinel is only med i take.  Not sure if its helping . i am ultra lucky it has remained in my skin only and hasnt attacked my muscles, not only for the obvious reason but because I am a fitness instructor and have been for 25 years.  I have been given 12 treatments of IVIG which has gotten my skin under control  I live in a big city so I was fortunate to be looked at by 25 dermatolgists in one evening as a rare case study.  last week I had my ovaries and tubes removed as a precaution against increased risk of ovarian cancer.  I am not sure where this disease has turned my life but each day I am walking or teaching a fitness class I am grateful for what I have.Keep moving and do your best to keep the muscle strengh you currently have! 

good luck  

Kimberly, thanks for your input!
I have dermatomyositis and had been in a ride for my life. I've been on all the meds you were on with a lot of side effects even cataracts. Now I've been on IVIG for about a year and a half now. It was working well, my reumy was spacing treatment. I went from infusion two days every four weeks to every eight weeks, my counts were good but when it went to ten weeks I had a major flare up and now I'm back to every fours weeks. I'm going to talk to my doctor about the Rituxan, I have been hearing a lot about it. I know there's a lot of commercials on TV but I'm going to talk to him and see what he says, because he wants me off the IVIG and is going to try IVIG for only one day every four weeks. Wish me luck and thanks again. I'm a 56yr old woman with lots to live for.

Lucy

My daughter is 23 and was just diagnosed 2 months ago. She went from a vibrant person to someone who could not shower herself in a weeks time. She was put on a high dose of prednisone and is slowly being weaned off. She has a LONG rough road ahead but we pray there will be even better treatments in the future. She is now able to shower herself and is hoping to get a job but is obviously very concerned about a relapse.

I'm happy to read a positive story. Has your daughter tried any alternative treatments? I'd be very happy to know more about the treatments. Thanks a lot!

Hi there, My daughter is 4 year & 10 mos. old. She was lately diagnosed with juvenile dermatomyositis. We were advised that she needs to have oral intake of Prednisone and be confined 3 days for treatment with Methylprednisolone Pulse Therapy, then it will be followed by continuous heavy dose of steroids oral intake. Since we hesitate giving steroids to our daughter, we are looking into alternative treatment like acupuncture which I have searched from a reference. Can you share with me your experience while on treatment? Thanks and God bless.

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I was diagnosed when I was 4. In a few weeks I'll turn 46 so keep with finding what works for her, try what seems reasonable to you, keep your hope up, push her to do what she can (and even what she thinks she can't!) I was always told I'd never live to see 30, and that I'd never have children. Wrong on both counts! Good luck!

I AM 69 AND JUST GOT IT OR I HAVE HAD IT FOR AHILE SO WHAT DO OLDER PEOPLE DUE NEED THE THINGS I NEED TO DO SORRY YOU HAVE IT BUT LOOKS LIKE YOU ARE IN CONTROL INSTEAD OF IT SOUNDS LIKE YOU WORK OUT ALOT

For hair loss, try Nioxin Shampoo & Conditioner. My hair is thicker now than it has been in a LONG time (even before my illness). You can find it at any hair salon & costs upward of $30 (but it is well worth it).

I guess this diease depends on when the doctors find it. My mom got dermatomyositis polymatomyositis acute form. was on steriods then induce coma and passed away all within three weeks. I am glad to read some people are beating this diesease

I am now 27 with two beautiful boys and I have been on remission for 5 yrs I was diagnosed in 5 grade and they gave me prednisone and It helped me but sense I took it so long they said I would be not be able to have children and I did so keep faith

Hello, I was diagnosed with Deratomyositis a week ago. I feel I have had this disease for about two years. two years ago, I developed extremely painful hips. I could not get out of bed. I am an active person. I immediately sot help from a fabulous massage therapist who also stretches me. He took me completely out of pain. Last summer I developed a rash. It itches and hurts at the same time. A skin biopsy did not show anything at the time. By fall, I was rash free and feeling great. This past April the rash started to come back. I noticed my energy levels were extremely low. My hip pain comes and goes. Sometime I have trouble swallowing, my knees hurt, my ankles hurt. I have decided to try to battle this disease naturally. I have begun a raw food diet and am juicing raw vegetables. I have begun colon hydrotherapy to clean out my body. Next week I will befgin high dose vitamin C IV therapy, Glutathione push and B comples, B6 And B5 shots. I can tell you that my energy is returning, my rash seems to be fading, my hair which was dull, is soft and shinny, my cuticles are softer, hips are much, much better, ankles are getting better. I cannot wait to start vitamin C IVs and the rest of my IV protocol next week. I will also begin a juice fast as well next week. I plan on beating this without the use of drugs. I have put together a great team. I feel so much better than I did when this all began. I remember lying in bed, knowing there was something very wrong with me. I no longer feel this way!

A friend of ours was just diagnosed and their family is at a loss on what to do. Could you pass on your email address to me so I could give it to them as you seem to have been through quite a lot and have informed yourself on this disease. LindaG. 

 

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My daughter was 3 when she was diagnosed and after 2 years of treatment (Cortisteroids, Methotrexate and Plaquinil) she is now in full remission as a 10 year old. It is a hard road but if you stay positive and keep her positive there are good things that can happen. It is not easy and she will need your 100% positive support. Read as much information as possible on the disease but always stay hopeful. My heart goes out to you and your family and look at the CUREJM website for fellow survivors

I feel for you Tink, my 13 year old son died 2 months ago. His was never diagnosed. Now going over all of his problems including recent skin problems over his knuckles of his hands bring me to this diagnosis. I will need to get answers as my daughter and I have symptoms (though not as severe) of the same problem. Sorry for your loss.

I was diagnosed when I was about 4-5 years of age. It's a pretty rare condition and was almost unheard of in Australia at the time, the hospital asked permission from my partents to use mine as a study case.
I don't remember all the details I just remember being in hospital for a few weeks then a couple of months later I relapsed and had to spend another few weeks there. I remember having lots of physio to stretch my joints again. And I had weekly blood tests every Friday for around a year to keep and eye on things.
Today I am almost 25 years old. I have not relapsed and have no long term symptoms. The only reminder is some small scars on my eye lids as a result of the rash.