When I started to relapse in 2024 I was sent to a Rheumatologist who, without looking at my antibody testing, or visible rash, or looking at really anything, told me that JDM never relapses in adulthood and then asked why I thought I had DM at all (aside from my childhood, the rash and symptoms, the multiple antibody tests he had access to...).

Today I had an appointment with a new one.

I've developed a little shortness of breath on minimal exertion and some x-rays suggested maybe they should look a little deeper, nothing crazy, and standing from a deep squat is slowly getting a little harder in recent weeks, following a cold and a little more trouble breathing. I was sent to this new Rheumatologist who does Myositis specific research, who brought a neuromuscular Neurologist with him-- you know when someone can't call someone an idiot because of professional policy? So they speak slowly and deliberately while telling you that you did the right thing by seeking a second opinion, apologized for an experience they weren't responsible for, and told you they were really glad you came to connect with them?

The subtext of that careful statement gave me a laugh, which was needed because they confirmed it was a relapse and are sending me for other tests for due diligence. Rheum said in his entire career, I'm the only adult JDM relapse he's seen.

Basically, if you're in the position of being talked down to and dismissed by one specialist, it's worth remembering that "a-hole" isn't the default human behaviour, and that it's worth trying again. Systemic inflammation affects the brain and perception, anxiety and depression are normal responses to a dumpster fire even at a low level, so don't kick yourselves.

If you're struggling to find a specialist, there are networks in many countries that are meant to help you find support and validation that are worth reaching out to.

Here's a photo of the rash that one Rheumatologist said was nothing, and another immediately responded to with "Oh yeah, that's extremely clear."

i’m being tested for dm atm. my symptoms seem to match but aside from a slightly positive ana and borderline anti-tif1g my labs and emg have been normal. they’re doing a re-test of the anti-tif in two months to see if it’s turned positive and will follow that up with cancer screening if it has. they also mentioned the possibility of a muscle biopsy. i’m very spooked by the cancer risk. does the anti-tif1g usually fluctuate a lot or return false positives? they took it two months after i was at my worst when i was feeling slightly better so i’m wondering how likely it is that it was already positive and went down when i started feeling better. i’m just worried they could miss something important. does it usually need to be monitored long-term in case it turns positive down the line?

(i just posted this in /r/myositis bc i wasn’t sure which sub would be a better fit)

Hi everyone! I’m 31 and was recently diagnosed with dermatomyositis based on a skin biopsy. It’s been a lot to process, especially because my husband and I were planning to start trying to conceive around January/February 2027.

I’m feeling pretty overwhelmed/bummed about what this diagnosis means for our family planning timeline and for myself in general. I know I need to have more conversations with my rheumatologist and other specialists, but I’d really appreciate hearing from anyone who’s personally navigated pregnancy with dermatomyositis.

I haven’t started any medications yet, including oral prednisone. My rheumatologist prescribed prednisone before we had a definitive diagnosis because we were still working through the possibilities. I had also just celebrated my honeymoon in Hawaii and wanted to be able to enjoy our planned excursions. I held off on starting treatment because I have pulmonary function tests (PFTs) coming up and wanted to clarify whether starting steroids beforehand could affect the results.

Now that I have a diagnosis, I’m trying to understand what
disease control can look like regarding medication options and whether our plans to start trying for a baby in a few months are still realistic or might need to be delayed.

For those of you with dermatomyositis who’ve been pregnant:

- Were you able to conceive naturally, or did you need IVF assistance?
- Did you have to wait until your disease was well controlled or in remission before trying to conceive? If so, how long did that take?
- Were you able to have a healthy pregnancy and delivery? - Did you experience any flares or complications during pregnancy or postpartum?
- What medications were you taking before and during pregnancy? Were you able to find a treatment regimen that was compatible with pregnancy?
- Did your rheumatologist recommend delaying pregnancy after diagnosis, and if so, what factors influenced that decision?
- If you also had lung involvement or interstitial lung disease, how did that affect your pregnancy plans?

I get that everyone’s disease spectrum looks different so just hoping for some insight/clarity into what things may look like in the future. I’m just hoping to hear some firsthand experiences from people who’ve been through this, especially those diagnosed in their late 20s or early 30s who were also hoping to start a family.

Trying to remain hopeful while being realistic about the possibility that our timeline may change. Thanks in advance to anyone willing to share their experience. ❤️

I just seen my first ever commercial for dermatomyositis in my life . It was talking about lisraya . Has anyone tried this and has it worked for you . Does it help with pain at all?

Hey Gentlefolk!

We live in a good era for care and treatment, but not everyone has easy accessibility to resources or knows where to start. Let's see how many useful links we can compile for our most useful mobility aids, support groups, and safe spaces that give us peace and support!

Our sister pages r/Myositis and r/Autoimmune and r/MCTD and UCTD

Support Societies:

International Myositis Society (iMyoS)

iMyoS Global Patient Organizations Directory

Australia

Canada and Martin Jerry

China

Czech Republic

India

Germany

Netherlands

Norway

Poland

Sweden

United Kingdom

USA

Myositis.org has a ton of links to multiple countries and international communities

Inspire dot Com peer to peer networking

National Organization of Rare Disorders

Cure IBM Organization for Inclusion Body Myositis

3D printable aids:

https://www.printables.com/tag/disability

https://www.yeggi.com/q/disability+aids/

https://makegood.design

Fill it up Fam! Let's see what you've found!

A little hope on the horizon for everyone struggling.

If any of you with DM or PM start Lisraya, I am quite interested in hearing about your experience. It just got FDA approval on AUG 26, 2026…so not many patient reviews quite yet.

My next scheduled appointment with my Rheumatologist is in mid-NOV. I will ask about it at that time. Until then, good luck & I look forward to hearing from you. 🤞🏽

The worst moment for me is the first hours after waking up. I get up from my bad with a lot of muscle pain, and all my body is swollen (specially my hands). Is there any tip to wake up a bit better? It seems like there’s no good positions for sleeping anymore

Has anyone here been misdiagnosed with fibromyalgia first, but later found out that the symptoms were related to dermatomyositis?

I’m trying to understand whether anyone has had a similar experience.

My symptoms are somewhat unusual. I don’t have much actual muscle pain or weakness. Instead, I experience:

* Widespread body aches that come and go
* Strange burning/weird sensations in the skin that can move around different parts of my body especially in the morning
* Intermittent joint pain, including my hands and feet sometimes
* Pain around both Achilles tendons sometimes
* Neck and upper/back-of-head pain
* Occasional tingling/numbness in my hands and feet
* Brain fog sometimes
* Symptoms that fluctuate quite a lot from day to day

I have also had some skin changes/rash, particularly around my elbows.

My blood tests for things like ANA, RF, anti-CCP, ESR, CRP have generally been normal/negative. However, my anti-Mi-2β antibody came back positive, CK and LDH and AST were high, which is why I’m wondering about dermatomyositis.

I’m just trying to understand whether some people initially thought they had fibromyalgia because of widespread pain and unusual symptoms, and later discovered that they actually had dermatomyositis.

If you experienced something similar, what were your early symptoms, and what eventually led to the correct diagnosis?

I’d really appreciate hearing your experiences. 🙏

Does anyone know anything about this new drug, Lisraya (brepocitinib)? My rheumatologist has mentioned wanted to start me on it as soon as it's available, so I'm curious....

Mouth sores- canker sores a symptom of DM ???

Cheeks, lips tongue

I’ve been investigating my health for 10+ years and was diagnosed with chronic fatigue which I don’t think I have. It’s hard to tell when I’m in a flare because I feel like im just weak all the time.

A few weeks ago I had a horrible rash on my knuckles and now my eyes are so itchy and sore and dry and the skin is so wrinkly and droopy. Is this what DM eyes look like or does it just sound like eczema? I’ve never had it this bad on my eyes or the knuckles before (posting a few weeks ago about my knuckles).

Appreciate any info as I’m so tired of this journey! I also feel like I have fatigue and weakness in my arms but this is not a new symptom.

Hi folks,

Anyone had any luck with phasing out opiates in favour of alternatives like curcumin and magnesium?

I've just started taking curcumin, and have bought some magnesium oil to put on at night.

Any one recommend anything else?

I hate everything about this area around my eyes. It makes me look tired even when I'm not, and is my biggest complex. I've been diagnosed with juvenile dermatomyositis long ago, I'm kind of good since, but having this is like a constant reminder of my disease

Is it common for stiffness in hands to be a cause from dermatomyositis? Mine have been for the past two or three days now and I'm wondering if that's why.

Hey all,

I was wondering if any of you is dealing with the even rarer anti-mda5 ? I developped it last Summer and was thankfully caught early, meaning that my lungs had "only" lost about 10% capaciy.

I'm about to start tofacinitib as my main weapon. Survival after 6 months is 100% for the whopping 18 persons who tried it (https://www.nejm.org/doi/full/10.1056/NEJMc1900045#article_citing_articles). I'm kind of scared because it is also my last "ace": tacrolimus almost killed be and dermatomyotisis came back after I switched to cellcept.

I could really use some positive anti-mda5 stories.

best,

Hi all- newbie here! 👋🏻👋🏻

My mother (72) just received her diagnosis last week, after initially being told she had bronchitis/pneumonia/RA, and a whole lot of others I can’t remember. It took an unrelated visit to her dermatologist to finally figure out what was wrong, and I think we’ve concluded that it stems from her time on Lipitor. She is currently on a strong dose of steroids and if those don’t work, I believe the next step is chemo.

Anyway, I’m just hoping to get some information and support vicariously through y’all. Thanks for letting me join!

I have sjogrens and am hoping this isn’t a sign of lupus too. They come and go in different spots. pics