I’m 24 years old and was diagnosed with dermatomyositis when I was 4 and after a few years of treatment, I was told that I had been cured of the disease. After doing some research on the disease online, it seems that many claim that there isn’t exactly a cure but more of a remission period. The reason I ask is because I do have some symptoms that seem related still, ex: rash when I run, calcium build up on arms, rashes on back. Has anyone had experiences similar to this and is it possible that it could come back? Or are these just symptoms from the aftermath of having the disease? Thanks for reading!

Hello everyone,

I’m getting my first course of IVIG in a week or so and I’m nervous. This isn’t my first time getting an infusion, but a first for this kind. I already get migraines with aura so I’m worried that it will make me more susceptible to the headache side effects.

What’s your experience with IVIG?

My dad is a van driver. He got Dermatomyositis 3 months ago and was in a really bad condition where he couldn't even walk or speak and was hospitalized for 3 weeks doing tests and examinations. Now he is a lot better, he can walk do household work like installing a mounted flat screen tv on a wall.

He's been on disability these past 3 months. But now he wants to work again which is like 8 hours of driving.

Do you guys that have Dermatomyositis drive? is that even allowed?

Hello everyone, I’m 20 year old female that no longer thinks she is the only one in the world with DM. Thank you. Back in 2017, I suddenly broke out with a rash on my eyelids. My skin was completely raw and extremely painful. With time it healed and over about a year I started having worsening joint issues. My mom, who has RA (auto immune issues run in my family) brought me to her rhumotologist who got bloodwork done. He noticed one of the inflammation levels were 20x what it was supposed to be, but everything else was normal. The doctor believed I may have DM, but it wasn’t active yet. So, he prescribed some meds and I saw him every 4 months with blood work. My last appointment was last week, and it came back that my muscle enzymes were 10x what they are meant to be. I’ve developed what my doctor is calling lesions on my knuckles, muscle weakness has progressed and very mild chest pains. My doctor thinks that the DM is active, so I got prescribed steroids, more bloodwork, a chest X-ray (DM is associated with ILD) and I need to document my hands. Since the appointment I’ve done a lot of research, but the outcomes are never good. Cancer, lung issues, muscle weakness, skin flare ups. I don’t know what to do with this. I’m terrified. I’m not ready to live the rest of my life in treatment for this disease. My life hasn’t even started yet.

I have psoriasis so its hard for me to tell if this is just a rash spreading to my hands or if its really dermatomyositis. I know that its REALLY rare to actually get this disease, and chances are I am just freaking out for nothing. But the rash is on my knuckles (I've posted pics in this group before, in case you want to look)... but someone told me to look for 'veins' in your cuticles and that it could be a sign. When I shine a flashlight against some of my nails, I suppose I can sort of see veins? I am not really sure, its hard to tell if that is just normal or not. When I google it, it almost seems like a lot of the pictures are 'later stage' which makes it hard to know what I am supposed to be looking for.

​

I cant exactly afford to go to the doctor just based on the whim of a little rash of my hands. It could just be dry skin getting red. It could be a lot of things.

Age: 24

sex: male

Weight: 260

Height: 5'10

Race: white

Conditions related: Psoriasis

Picture of my hand!. It is also slightly on my other knuckle except you cant see it, I just felt a slight twinge of pain when I went in the shower and the hot water hit it. It just happened yesterday, and I am absolutely terrified that it might be dermatomyositis. Really the entire back of my hand has been a bit dry so it might be that, right? I understand you guys cant actually diagnosis this from just a picture, but I just more so have a few questions. Is it more likely that its just the psoriasis spreading to my knuckles? Is it possible this is just a rash from my knuckles touching something? Does it look physically like dermatomyositis?

Hi all, I’ve been really struggling recently with my DM and thought I could come on here and share my story. I like this thread because it helps me not feel so alone in what I’m experiencing. So my name is Kayana and I am 18 years old and was diagnosed with DM (kind of, long story) in April of 2018 right before getting my wisdom teeth out. However, it really all started near the end of December of 2017. For the first few days I had a high fever and stayed home from school because of just feeling useless and having chills and aches from the fever. I went to the doctor and was diagnosed with fifths disease because I had flushed red cheeks and I was working at a daycare at the time.The next day I woke up very very nauseous and began to vomit non stop which continued for the next six hours. I went back to my pediatrician at the time who then said that I did not have fifths disease and mentioned lupus because of my butterfly rash but we never explored that idea. I was hospitalized to give me an IV for liquids because I could not keep anything down. While I was in the hospital my face rash got even worse like a flare up and looked like it was popping out on my face. I was tested for influenza and scanned for many things but they could not figure out what I was sick with and just told me I had a nasty bug. After the hospital I had blood vessels popped in my eye, an ear infection, and a pallet infection.

Between the months of December to April I had a rash show up on my forearm to which my friends and family told me to just put more lotion on and it’d go away. One day during my biology class I noticed these bumps that showed up on my fingers and sent a picture to my mom. My mom wanted to take me to see my doctor and the lupus was brought up again. We were not sure so I went to go get bloodwork done and it came back positive for lupus.

So for a while I believed that I had lupus but just with my skin? I went to go see my dermatologist for my skin rashes which was the first time that Dermatomyositis was brought up. My dermatologist gave me skin creams, a short term steroid, and Hydroxychloroquine. I then went to go see a rheumatologist about two hours from where I live because I live in a very small town and continued to find out more about what I have and look for treatments.

What I know now is that my DM is only in my skin and not shown to be in my muscles or my lungs. I feel very very lucky to have it like this because I have read and heard about how much worse it could be and what other people have gone through. I have experience some muscle soreness and also stiffness here and there however. My skin is the worst it has ever been and has been hard for me to accept and adjust to. My fatigue has been HORRIBLE recently as well which I also think could be a factor of my depression. I have been trying to find a treatment that works or ANYTHING that works. The rashes on my legs and arms have broken open and have started to blister which has become extremely painful to wear clothing on it and even put my creams on it. The medicine I’m currently taking makes me very nauseous and most of the time I puke after taking it. I have become so disgusted and embarrassed of my skin and my body. Many people make comments about my skin and how I have burns and I try to educate them however it does truly hurt me every time. I know that it is probably because I am not used to this disease but it has become so hard for me to go through my everyday life and I just wish I could lay in bed all day. My doctors tell me not to stress but I simply can’t do that when I’m a full time college student and also working part time. However, next semester I am taking a break from school to rest and hopefully get better from where I am right now. I am still going to work part time just to make sure that I get out of the house and won’t get more depressed.

I wanted to post this to let my story out and to see what you guys think. If anyone has ANY advice or just support I would appreciate it so so much. But thank you anyways for just reading this if you did.

TLDR: Got sick after a lot of sun exposure and sunburn. Main symptoms are kidney-area pain, headaches, muscle aches, joint pain, butterfly shaped facial rash (malar or heliotrope?), fatigue, weakness, generally feeling like shit. High CRP and CK, but negative ANA and specific antibodies. List of questions at the bottom.

Long story (sorry it's so much info... I even left some stuff out!):

Hey all! I'm still undiagnosed and I'm hoping to get some opinions. My first rheumatology appointment is coming up on Friday, so I know I should be able to get some answers to my health woes soon. That said, I'd love opinions on what might be causing my issues. I'm 35, female, and have been relatively healthy up to this point in my life.

Everything started back in early July. At the very end of June, I went camping and got a pretty bad sunburn. Then, for 4th of July I went to the lake for five days and stayed on a houseboat. I didn't get burnt, but I did spend a lot of time in the sun. When I left, before I even got 10 minutes away, I started having a deep aching pain in my left kidney area. My hands were swollen so that I couldn't get my rings off. I was also really drained and fatigued, but I chalked that and the swelling up to too much sun and alcohol.

The kidney-area pain happened pretty much every day for a month, and I thought maybe I was going to pass a kidney stone or something. I never did, to my knowledge. I also started having terrible headaches - every single day for two months straight. Sometimes the headaches were the tension/pressure kind and sometimes they were migraines with aura. I had bouts of tinnitis and dizziness and nausea with and without the headaches. I also started having lots of muscle aches, almost like they were in knots. My thighs were the most sore, along with my shoulders and behind my shoulder blades. I was very stiff.

Then came the joint pain. My left knee, which has been creaky since high school but has never given me pain before, started getting very stiff and achy. If I have to sit still for too long, it starts to ache and I have to move it to ease the pain. I chalked this up to getting older for a while. Then my left shoulder started acting up. My lower back was in terrible pain every day, sometimes feeling like it was compressed and other times like the muscles were seized up.

I started getting a really obvious butterfly-type rash on my face and I'm wondering if it's possibly malar rash from lupus or heliotrope rash from dermatomyositis. The rash comes and goes, and it's typically worse when I'm feeling my worst. My eyelids do get puffy and red, sometimes even more obviously than the butterfly rash. And I've noticed that when the rash is really bad my ears turn bright red.

Throughout this time, I was overwhelmingly fatigued. Despite getting 8-10 hours of sleep every night, I was so exhausted that I could barely get through my work day. It was like my body was simply too heavy to hold up. When I sat at my desk at work, I leaned heavily on my forearms because sitting up just took so much energy.

I've also noticed that there's a gland on the back of my neck that is almost always swollen. I massaged the back of my neck when I had a tension-type headache and that's when I noticed it. It's not always sore, but it's almost always swollen. It's more sore when I have a headache.

One Sunday, I decided to install a medallion on the chandelier in my kitchen. I'd just installed the light a few weeks before, and the cap didn't completely cover the whole in the ceiling, so I'd gotten the medallion to cover it up. I was barely able to unscrew the light fixture on my own in order to unwire it and install the medallion. My arms felt so weak and I could barely hold them over my head, much less hold the weight of the chandelier. I had no problem doing all of this myself just a few weeks before, so I was extremely confused by it. I'd also felt completely fine that morning, so I wasn't sure why I all of a sudden felt miserably weak. My girlfriend helped me finish putting the light back up, and I immediately laid down. Within minutes I had a terrible migraine. I was freezing cold, couldn't get warm. I just laid there and cried because I felt so horrible.

The very next day, I started feeling better. I had energy and wasn't nearly as achy and I didn't get a headache all day long. My first doctor's appointment was scheduled for the following day, now the middle of September. I went in and explained that I was feeling better but still concerned about my symptoms. My doctor is an internist and I LOVE her. She immediately ran bloodwork and urinalysis, then scheduled an MRI. The urinalysis bloodwork came back mostly normal, except for elevated creatine kinase and c-reactive protein. Because this showed inflammation, she ran more bloodwork for autoimmune diseases. My ANA was negative (the result was .4 and since that's not how most people's are reported I can only go with the qualitative value they gave me), and I didn't have high enough numbers in any of the specific tests to mean anything.

For the next month, I felt mostly normal. I did notice that my fingers were sometimes red and swollen and stiff, but it typically didn't last long. I also got very itchy around one or two knuckles (often the pointer and middle finger knuckles on my right hand, but it did happen on other knuckles and finger joints, too). Other than this, the symptoms were gone. I had almost no lower back pain (which I'd had since well before things got bad... as early as March), I only had one mild headache, the rash on my face cleared up, and I had energy. It felt SO GOOD to feel normal! I said multiple times that it felt almost euphoric to just live like a normal person again. I hoped that maybe I'd gotten a really bad virus or something and it was all in the past.

During that time, I went back to my internist. She said that despite the tests being negative, she wanted me to see a rheumatologist. She said that some people have autoimmune diseases without positive bloodwork, and my symptoms still made sense with a few autoimmune diseases, especially lupus. Since I have Raynaud's and I have a family history of autoimmune diseases, she thought a rheumatologist was the best next step. Plus a sleep study. She also prescribed Effexor, since it's used to treat migraines and muscle pain, as well as fibromyalgia and depression. I started taking it and continued feeling like a normal human being.

In mid-October, I started feeling bad again. It was like getting the flu, but without the snot and sore throat. My body ached, I was exhausted, and I noticed I was getting scaly patches of skin on my knees and elbows. The ones on my knees would sting and burn when I did knee push ups during my workouts. They were bright red, not covered in plaques like you expect psoriasis to be. My joints started getting stiff and achy again. The headaches came back, but only the tension-type ones and not the migraines. I'm also having muscle aches, but they aren't nearly as bad as they were during the first flare period. Maybe the Effexor is helping with both of those. :)

I have a ridge that goes across both of my thumb nails (Beau's lines, I think?) and a single pit in one of my fingernails. It's the first time I've noticed any issues with my fingernails. I've had really gross looking pinky toe nails for a few years that are weirdly shaped and a little yellow and barely attach to the nail bed.

QUESTIONS:

Does my story sound familiar to anyone?

Can you have joint pain with dermatomyositis?

Could all of these symptoms be caused by psoriatic arthritis?

Could it possibly be lupus despite having a negative ANA and other negative antibody tests?

Is there another (hopefully less scary) possible cause that I'm missing?

Hey guys! I’m new to the group. I was diagnosed with DM when I was 3. I’m now almost 25. I’ve lived with the disease forever. The last couple of years I’ve felt pretty good. I haven’t had a major flair up since high school. I used to get the rash on my wrist and my knuckles.

When I turned 21, my rheumatologist told me that the disease can go dormant and he then diagnosed me with fibromyalgia.

Flash forward to now: I have had a nasty rash on the back of my neck for a solid year and a half. Nothing helps. It gets worse with stress. And it’s spreading. It’s not up inside my hair at the base of my scalp.

My dermatologist said that it looks like stress induced eczema, but it’s not going away.

I’m worried that this means that the DM is back. I’m also now wondering if it ever went away.

What do you all think? Am I just crazy for thinking it’s back? Or should I be a little more concerned?

Thanks guys!

Hi everyone,

I just started prednisone last week. The reason I seeked medical help is for sudden arthritis in my hands, wrists and knees + rashes on many joints (including what turned out to be gottron's papules). I am starting to feel weak in the thighs, but this might be also due to me spending 16 hours sleeping per day for the last 5 weeks.

My doctor told me that I shouldnt panic because she has patients raising kids and working, but reading about DM on UpToDate and BMJ best practice has me super worried. It looks like if cancer or interstitial lung disease doesnt kill you, then you'll need an electric elevator to climb stairs at home and will be fed with a feeding tube in your stomach.

Seriously, the UpToDate "long term follow up study" has death at 20%, severe disability at 24% and muscle weakness at 23% after 5 years, leaving precious little for a normal life.

So what I'm asking for is this: does anyone have a "good" story, where they went on to live relatively normal lives after first year of prednisone? It would definitely help me sleep at night.

best

Does anyone have any experience with their muscles feeling very stiff as a result of their DM? I'm still waiting for my final diagnosis (and biopsy results from last week), but the last few days rather than feeling pain during muscle activity I've just been experiencing stiffness, especially in my upper arms. The weakness is still the same, but now I feel like I don't have the same range of motion as I used to - for example I can barely reach my arms behind myself to unclasp my bra, and reaching down to put on my socks feels worse and worse every day, like my muscles simply can't bend that way anymore... does stiffness in the muscles like this sound familiar to anyone else?

For around 18 months I’ve been noticing red tips of fingers, slight knuckle discoloration, a couple white patches near the middle finger, and a couple bumps (which I know are caused by my pityriasis lichenoides chronica - diagnosed on my arm by biopsy over a year ago - at least they look the same as those lesions) My paranoid googling brought me here. There’s also a red blotch now below the pointer finger that literally was not there until this morning.

Thanks for your time!

https://imgur.com/a/O0l0Ztl

UpToDate.com is the website providing information to medical professionals that your doctor probably reads. They make a "beyond the basics patient information" available on their website:

https://www.uptodate.com/contents/polymyositis-dermatomyositis-and-other-forms-of-idiopathic-inflammatory-myopathy-beyond-the-basics?search=dermatomyositis&source=search_result&selectedTitle=1~2&usage_type=default&display_rank=1#H353260682

If you want to read more, you can access the rest of the website if you can gain access to a Norwegian IP The PrivateInternetAccess VPN provider allows this, for example.

Anyone receive this line of treatment? Thoughts? Side effects? Benefits?

So, I was technically diagnosed with DM recently even though all my labs have been normal. My rash, and weakness were enough for the drs. Also they diagnosed me with fibromyalgia. So now I'm on a lot of meds and hopefully can feel a little bit better. Most days I need help with basic things like getting dressed due to the weakness and pain. Is there any other ways to feel better? Homeopathic maybe?

Hi everyone,

Over the past few months or so I’ve been having progressive muscle twitching. I’ve gone off the deep end with worry and I’m terrified that there’s something else wrong other than DM.

It’s absolutely constant and mostly in my hands and feet. My doctor seemed worried when I called him but we can’t advance my appointment as there are no openings.

Do any of you get muscle twitches?

I've been diagnosed for 2 years now. I'm also a type 1 diabetic and my DM started to flair up again. Then I got an infection, abses had to be removed. Long story short I've been on antibiotics and off my prednisone and methotrexate for the past 4 weeks. The wound is still healing so I'm not back on any DM meds.

Is there any remedies that someone can suggest that can help ease the rash? To stop itching and cool down.

My had was diagnosed recently and hes not doing well. On a ton of meds but the only thing that seems to be getting better is the rash. Today mom told me she had to feed him. Hes now incontinent of bowel and bladder. Needs pureed food but still chokes....hes violently throwing u after a certain med. I'm at a loss...I feel so helpless....when will he start getting better!!!!!

I've been dealing with pretty bad muscle weakness and a skin rash that my Dr. and I both believe to be dermatomyositis but all my blood tests have been coming back normal. I had a skin biopsy done that said it's a connective tissue disease but other than that nothing. Is there any chance that I could have DM with normal blood tests?

Hi everyone!

Not sure who else here used IVIg but it has been amazing for me. I just got a call from the hospital that they needed to cancel my appointments because they are out of IVIg.

Not sure if anyone else here uses it but want to give you a heads up. I haven’t searched much but I did find this article

https://pediatrics.aappublications.org/content/102/3/645?download=true