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dermatomyositis life expectancy

By louie1165173284 | 84 posts, last post
Dr Artem Agafonov answered this Dermatomyositis Is Usually Survivable
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Guest

Hello i to am looking to battle this illness naturally but don't know where to startx. Seems like you can help me. Can you please contact me all that you've done. I am very disappointed with all the docs as it seems like all they want Is to keep me on meds. Please help. thank you kindly in advance.

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Guest

Teestarr, we have a six years old child in the family who was diagnosed with the same disease, if you permit us to have contact with you, maybe you can give us some advice! Thanks
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Guest

Check health stores 35 percent food grade hydrogen. Peroxide try it
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Guest

Hello Richard, I've had DM for close to 9 years now and just recently started having trouble with my lungs. In your years with DM did lung issues ever crop up with you?

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Guest

Hello.
I have had DM for 18 months and have been on several different medications. I am 45 years old and also have the same symptoms as most of you, muscle weakness, fatigue, not been able to climb stairs etc. My condition effected my lungs straight away and I have been on oxygen 24/7 for over a year. I had prednisone at 60mg with Cellcept at the beginning of 2016 which didn't help. I was then given 6 months of chemo Cytoxin and that made me worse. I am now on Rituxan and that has kept me stable for 4 months. I use a wheelchair to get around and my life has changed tremendously. I have 23% lung capacity. My breathing is very hard and I am working with the doctors at UCSF to have a lung transplant. I would really like to hear from anyone who has had a transplant with this autoimmune condition.

My name is Jan
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Guest

Hello I am a 49 year old female I was diagnosed in 2012, my road has been very rough. I went to work at 6am that morning and when I was off from work at 2pm I went straight to the ER was very weak, feeling tired like I just wanted to lay down. My face was breaking out so was my neck and back, my hands the tips of my fingers were splitting and very painful where I couldn't touch anything. The physicians there was alarmed because they had no clue where to start, It took them almost 6 months to diagnose me. I could not do anything for myself, I could not shower, could not dress myself, could not feed myself. I could not breath I was having breathing issues very short winded, because they realized along with all of that I had pneumonia in both lungs now I only have 1 that works, the other one is full of scar tissue and does not expand. Once they found out what was going on I took 6 rounds of chemo that took my hair out. I am a little better now I am in the muscle pain stage my legs, back, and neck hurts very bad, I have been labeled with chronic pain. I am on a high dose of prednisone they tried to wean me off but I relapsed and so I will have to stay on the high dose, I am on so many meds I take a total of 21 pills a day. If anyone know of any natural way of healing so I can get off of these meds or any resources please let me know I have been disabled since 2013 and its a struggle tying to live on that income I have became depressed and have anxiety attacks because of the struggle ...I went from very, very active to from the bed to the couch for the last 3 years....so if anyone know of any reference books please let me know, praying for everyone that has this illness we must keep fighting...God has us!
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Guest

So do you still have pain and do you work out alot
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Guest

Is there anything you can do to help the painful skin inflammation that occurs?
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Guest

Hi. I had Dermatomyositis when I was 11 years old. I went through all the prednisone and physical therapy treatments, and I'm still going strong, no problems, in complete remission at age 49. I have been in excellent physical condition, strong as well (lifting weights, running). I am responding to let you know there is hope.

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Tink358925

i hope you and your daughter are okay. I try to decide if its worth traveling to be diagnosed I believe I am showing early signs of this disease also, but I have been putting off getting answers my sons dad has been battling cancer 14 months and getting worse. Let me know how you and your daughter made out.
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Tink358925

Can anyone tell me where is the best place to get tested for disease I ive in Northeast, I don't want to go through what they did with my mom and incorrectly diagnose me, I am getting really worried I am showing early symptoms of this disease I was told this was a strong possibility when she died that they believe it carries in mostly woman of familys

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Guest

Thank you for your post. I am a 61 year old Jazzercise instructor in great shape. I just recently was diag with DM, but I have had the rash for years. So far no muscle weakness, but a bit of a stiff neck - some into the shoulders. It is good to hear that you are still at your fitness adventure. Prayers out to you!
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Guest

What kind of treatment u had I can't walk hold my neck up arms up I take therapy and my meds sometimes it seems to work but what should I do
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Guest

Hi
My wife got diagnosed with this 3 months ago.She is doing well now with the medicine .My worry is will disesae effect her life expectancy.She is putting on weight coz of prednisone which they are reducing every month now she is on 30mg from 50.Her results are good body strength is back.
She wants to play soccer again
Shd i be worried abt something?
Is she gonna take medicine for ever?

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Guest

Hello Loue1165, thank for such an encouraging message. my son was diagnosed with JDM may 2017. i need closure to the prognosis and how many years can some one get this treatment.
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