Good morning, @brfire63 I don’t have any experience with your wife’s condition but I have found the following information on our Mayo Clinic website.
“There's no cure for dermatomyositis, but periods of symptom improvement can occur. Treatment can help clear the skin rash and help you regain muscle strength and function.” https://www.mayoclinic.org/diseases-conditions/dermatomyositis/symptoms-causes/syc-20353188
It looks like dermatomyositis is a fairly rare disease with only 1 in 100,000 people developing symptoms. From my research, it can be very serious but if caught in the early stages and with treatment, it can be fairly well managed.
Is your wife currently on medication? If you don’t mind my asking, what were her symptoms?
Nance, as I understand it, DM can attack your lungs, muscles, and your skin. I am dealing with all of them. I was diagnosed with Dermatomyositis with MDA5 antigens and Interstitial Lung disease. ILD has caused scarring of my lungs, the damage can’t be reversed, my hope is to prevent it from progressing. The muscle weakness is caused by inflammation, I don’t have trouble walking, or issues with my hips or thighs. Sometimes my lower body, mostly my legs feel weak. Maybe because I was put on prednisone as soon as I got the diagnosis, the inflammation has been keep under control. I went to my pulmonary specialist today for a follow up since my appointment at Mayo Clinic, it was all good news, and I have hope that the treatment I am on for ILD is working. So I will continue with my current treatment, unless things progress. My doctors recommend I have Pulmonary Function Test every 3 to 4 months, this will show if things have progressed. So my doctors are monitoring me closely with ILD, and watching for inflammation which will cause issues with my muscles. The skin rash I can live with. Nance I hope this information is helpful to you, I have learned a lot since my diagnosis. Most days I feel pretty good, and I have been living my life just like before DM. I feel very fortunate to have such great doctors, My Primary Doctor, Rheumatologist and Pulmonologist. I was quickly and properly diagnosed, and then aggressively treated.
Kathryn
Update on my diagnosis of Dermatomyositis and Interstitial Lung Disease in January of 2021
I am so grateful that everything is remaining stable for me. Current I am on 5mg Prednisone, Azathioprine, and HCQ, I started IVIG treatments in February of this year. I do two days in a row of Gammagard, every month. Praying that things continue to remain stable.
The most important things I have learned are, how important it is to get the proper diagnosis, and to start aggressive treatments as soon as possible. Also having a good care team. Try to take things One Day at a Time, because it can be overwhelming at times. And don’t give up HOPE!
Kathryn
I'm sure this is frightening for both you and your wife. Like, @loribmt, I look forward to learning more about you and your wife, how you are coping with the new diagnosis, and the questions you have.
Anyone been diagnosed with Dermatomyositis? I was diagnosed in August…IV/IG treatments…methotrexate…etc
Prednisone titrate has started and feeling what I think is withdrawal symptoms. Has anyone experienced tingling with this?
Anyone been diagnosed with Dermatomyositis? I was diagnosed in August…IV/IG treatments…methotrexate…etc
Prednisone titrate has started and feeling what I think is withdrawal symptoms. Has anyone experienced tingling with this?
@livinglife1 Welcome to Mayo Clinic Connect!! You’ve found the right site! There are many discussions on dermatomyositis. To find them, go to the main page for Autoimmune diseases, and find the search box. You can enter ‘dermatomyositis’ in the search box and hit “return” or “search” And a whole list of discussions will pop up and you can read any and all of them. From here, I’m going to let members answer you questions.
Anyone been diagnosed with Dermatomyositis? I was diagnosed in August…IV/IG treatments…methotrexate…etc
Prednisone titrate has started and feeling what I think is withdrawal symptoms. Has anyone experienced tingling with this?
@livinglife1 Welcome to Mayo Clinic Connect!! You’ve found the right site! There are many discussions on dermatomyositis. To find them, go to the main page for Autoimmune diseases, and find the search box. You can enter ‘dermatomyositis’ in the search box and hit “return” or “search” And a whole list of discussions will pop up and you can read any and all of them. From here, I’m going to let members answer you questions.
Anyone been diagnosed with Dermatomyositis? I was diagnosed in August…IV/IG treatments…methotrexate…etc
Prednisone titrate has started and feeling what I think is withdrawal symptoms. Has anyone experienced tingling with this?
I’ve had 2, 5 day IV/IG treatments. Start another on Saturday. Did you have IV/IG? Did it help you?
As I’m tapering off the prednisone my body feels like it’s withdrawing. Like tingling…did you experience any of that? I’m so new at this. I’m hoping and praying to get some of my life back. I’m being treated at Mayo Clinic. They seem to be very knowledgeable so far.
Anyone been diagnosed with Dermatomyositis? I was diagnosed in August…IV/IG treatments…methotrexate…etc
Prednisone titrate has started and feeling what I think is withdrawal symptoms. Has anyone experienced tingling with this?
Did you have a Dermatologist and a Rheumatologist at Mayo? I currently just have a Dermatologist who is Awesome! Hes ordering cancer screenings and is very patient with all my questions and worries.
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My wife was just diagnosed with dermatomyositis, is this disease manageable with the proper medication
Good morning, @brfire63 I don’t have any experience with your wife’s condition but I have found the following information on our Mayo Clinic website.
“There's no cure for dermatomyositis, but periods of symptom improvement can occur. Treatment can help clear the skin rash and help you regain muscle strength and function.”
https://www.mayoclinic.org/diseases-conditions/dermatomyositis/symptoms-causes/syc-20353188
It looks like dermatomyositis is a fairly rare disease with only 1 in 100,000 people developing symptoms. From my research, it can be very serious but if caught in the early stages and with treatment, it can be fairly well managed.
Is your wife currently on medication? If you don’t mind my asking, what were her symptoms?
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Hug
2 ReactionsUpdate on my diagnosis of Dermatomyositis and Interstitial Lung Disease in January of 2021
I am so grateful that everything is remaining stable for me. Current I am on 5mg Prednisone, Azathioprine, and HCQ, I started IVIG treatments in February of this year. I do two days in a row of Gammagard, every month. Praying that things continue to remain stable.
The most important things I have learned are, how important it is to get the proper diagnosis, and to start aggressive treatments as soon as possible. Also having a good care team. Try to take things One Day at a Time, because it can be overwhelming at times. And don’t give up HOPE!
Kathryn
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4 ReactionsHi @brfire63, I'd like to add my welcome. I moved your question to this existing discussion about dermatonyositis https://connect.mayoclinic.org/discussion/dermatomyositis-1/
I did this so you can connect with others living with the disease like @amberrose @kathrynmccune
I'm sure this is frightening for both you and your wife. Like, @loribmt, I look forward to learning more about you and your wife, how you are coping with the new diagnosis, and the questions you have.
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1 ReactionAnyone been diagnosed with Dermatomyositis? I was diagnosed in August…IV/IG treatments…methotrexate…etc
Prednisone titrate has started and feeling what I think is withdrawal symptoms. Has anyone experienced tingling with this?
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Helpful -
Hug
1 Reaction@livinglife1 Welcome to Mayo Clinic Connect!! You’ve found the right site! There are many discussions on dermatomyositis. To find them, go to the main page for Autoimmune diseases, and find the search box. You can enter ‘dermatomyositis’ in the search box and hit “return” or “search” And a whole list of discussions will pop up and you can read any and all of them. From here, I’m going to let members answer you questions.
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2 ReactionsI was diagnosed seven years ago with Dermatomyositis. I'm on immuron and prednisone both meds have worked well for me.
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1 ReactionI started out on 60 mg of prednisone I am now down to a maintenance dose of 5 mg.It works well.I will probably take that the rest of my life
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1 ReactionI’ve had 2, 5 day IV/IG treatments. Start another on Saturday. Did you have IV/IG? Did it help you?
As I’m tapering off the prednisone my body feels like it’s withdrawing. Like tingling…did you experience any of that? I’m so new at this. I’m hoping and praying to get some of my life back. I’m being treated at Mayo Clinic. They seem to be very knowledgeable so far.
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Helpful -
Hug
3 ReactionsDid you have a Dermatologist and a Rheumatologist at Mayo? I currently just have a Dermatologist who is Awesome! Hes ordering cancer screenings and is very patient with all my questions and worries.
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1 Reaction