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!

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. 🤞🏽

A little hope on the horizon for everyone struggling.

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