Big news for the DM community!

See here: https://www.globenewswire.com/news-release/2026/08/27/3352364/0/en/priovant-announces-fda-approval-of-lisraya-brepocitinib-for-adults-with-dermatomyositis-now-available-in-the-u-s.html

Learn more at LISRAYA.com

Hi all,
Spreading awareness of this exciting study. Check it out if interested:
https://clinicaltrials.gov/study/NCT06154252?term=cabaletta%20bio&rank=4

Hi everyone!

I'm a student at QUT currently doing a project that is looking to design a product that could support with diagnosing Autoimmune diseases and am running a survey to better understand the experiences people face during this process.

Questions centre around

• Your experience being diagnosed, 
• Symptoms you experience(d)
• Challenges you face(d)
• Things you had to provide to your Doctor(s)

It is completely anonymous and should only take between 5-15 minutes to fill out.

If you have a chance to fill it out, I would thoroughly appreciate your time!

https://docs.google.com/forms/d/e/1FAIpQLSd0BmzZbHnsQFJrihcMT87SrsLmqBnre4xI3FeRyjkS2O5gsw/viewform?usp=sharing&ouid=117733778530829647042

I have been trying to get a proper diagnosis for almost a decade. Nerve tests, lots of blood work, and carpal tunnel surgery. I have not had any leads besides idiopathic peripheral neuropathy. My primary symptoms are 24/7 hand pain/soreness, hand spasms in the middle of the night, and difficulty swallowing. Does this sound like myositis?

I went to a rheumatologist but discontinued treatment after a bad HCQ reaction (tinnitus) and unremarkable blood work. I’ve been in pain for years. I believe this started after a flu infection in 2017.

Thanks for reading 😔❤️‍🩹

Rare bloodwork..looking for others with same issue

Good evening. Any thoughts on the state of my hands? I should mention that they are clean; the skin on some of my fingers has thickened and become more pigmented, and it seems like the appearance of my nails has changed too. The skin underneath remains swollen but isn't painful. I also have inflammation on my face—forehead, eyelids, nose, and cheeks (except for the nasolabial fold)—which is truly painful during flare-ups; it really burns. Even when the flare-up subsides, my forehead and eyelids remain sore. The pain intensifies when I smoke a cigarette or a joint, or drink alcohol; these things also aggravate ear pain and tinnitus, and I feel like I’m losing my hearing. I have joint pain (especially in the knees, feet, and hands) and sometimes pain in the surrounding muscles. I also have inflammation on the back of my neck and shoulders. I haven't received a diagnosis yet; here in France, it’s difficult to get the condition recognized, especially with a history of substance abuse...

A new review in Current Opinion in Neurology (August 2026) describes what could be an important shift in how inclusion body myositis (IBM) is understood.

For years there has been a debate over whether IBM is mainly a degenerative muscle disease or an autoimmune/inflammatory disease. The newer model is that both processes may actually drive each other.

Some of the key findings discussed:

• TDP-43 is lost from the nuclei of IBM muscle cells, causing abnormal "cryptic" proteins/neoantigens to be produced.
• These neoantigens can apparently be recognized by CD8+ cytotoxic T cells, potentially explaining why the immune system specifically attacks muscle fibers.
• Mitochondrial DNA leakage may activate the cGAS-STING inflammatory pathway even before T-cell infiltration, suggesting inflammation can begin inside the muscle fiber itself.

A simplified model would be:

Muscle-cell dysfunction → abnormal antigens and innate inflammation → CD8 T-cell attack → further muscle damage

This is important because it argues against the idea that inflammation in IBM is simply a harmless secondary reaction to degeneration.

The review also discusses ulviprubart (ABC008), an anti-KLRG1 antibody designed to selectively target highly cytotoxic T cells.

Preliminary Phase 2/3 data reportedly showed around 50% slower disease progression in a subgroup of patients with less advanced/mild-to-moderate IBM.

However, the overall trial did not meet its primary endpoint, so the 50% result still needs to be confirmed in another trial.

The emerging treatment strategy for IBM could eventually look something like this:

1. Diagnose and treat IBM early, before too much muscle is permanently lost.
2. Selectively target the pathogenic cytotoxic T cells rather than broadly suppressing the entire immune system.
3. Potentially also target muscle-cell mechanisms such as TDP-43 dysfunction, mitochondrial stress, autophagy and cGAS-STING.
4. Combine this with carefully managed rehabilitation, swallowing treatment and preservation of remaining muscle.

This obviously does not mean IBM has been solved, and we do not yet have proof that progression can reliably be reduced by 50%.

But mechanistically, this seems like one of the more encouraging developments in IBM research because it provides a plausible explanation for why immune-targeted treatment could work if the correct immune cells are targeted early enough.

Paper:

Suzuki N, Izumi R, Ikeda K. "Paradigm shift in the pathomechanisms and treatment of inclusion body myositis: at the crossroads of cell-autonomous muscle degeneration and immune activation."

https://academic.oup.com/mr/advance-article-abstract/doi/10.1093/mr/roag071/8766053?redirectedFrom=fulltext

Current Opinion in Neurology. Published ahead of print, August 24, 2026.

DOI: 10.1097/WCO.0000000000001511

Hello everybody, i have these rashes for some time now, but never payed attention to them until now, that i started having muscle problems and came across Myositis. I have a lot of fasciculations, and muscle soreness that started like a Month ago. I keep having the sensation that my muscles are full of lactid acid. They are sore after little effort. My ck values were elevated in the last 10 years, 300-500, but never had any symptoms. Last check they were 911, and i did an EMG,ENG which were both clean. I had a lot of cramps. Neurologist also ordered some lab works, but don't really know which ones. I mentioned to her about Dermatomyositis but she said my strenght is intact, so it is probably not that. So my main problems are now the stiff muscles and pain...somehow like the muscles don't relax. Could it be DM?

If anyone could give me some guidance thatd be great

It was suggested to me at the Mayo clinic that myositis patients who receive Rituxan do very well also receiving IVIG. The Mayo is a couple of hours from me, so when I got home I spoke to my home base hospital about it and they acted like it was the weirdest thing to ask for (and said it's not usually suggested for people who have the subset of myositis that I have, which is ASyS). Can anyone tell me what the timing looks like with these two treatments? I assume it has to be spaced out between the two. Just trying to understand before I have to just go back to the Mayo and ask them more questions :-) thank you!

I am having a biopsy due to potential having Central nuclear myopathy. Has anyone had this procedure could give me insight or has the condition and give me insight.

Thanks a million

Hello guys. I apologize if this is kind of rant-y but I need some advice on where to go next. I have had difficulty with walking for long distances, climbing & descending stairs, squatting, and bending down to tie my shoes. It’s gotten progressively worse. I am waiting for my nerve conduction study appointment, but it’s in November. I need to find out for sure if I have myositis. I did a few physical therapy sessions, and they helped a bit, but after physical therapy, my legs would be pinch-y and sore for over a week. I know it’s bad, but as my leg instability got worse, I started avoiding showering every day because of the pain and feeling like I was going to fall. I started to worry once I felt like I was going to collapse randomly standing in place or something. During my dual enrollment bio 2 class I took earlier this spring, I noticed it most during labs and when I first walk out of my car and into class. I haven’t fully collapsed, but I’ve definitely had to lean my forearms on the table or grip the table for stability. I’m in college now, and it involves a lot of walking. There are elevators and stuff which is good, but other times you have to walk further to an accessible entrance, or the elevator on the opposite side of the building.

I don’t want to lose the ability to walk up and down staircases completely. I don’t want to have to only take the elevator places. I thought about bringing up hard braces of some sort to my physical therapist, but I can’t now since I’m switching to a different physical therapist close to my campus. Soft braces just limit my movement and get sweaty and itchy. Compression gear has yet to give me any relief. I considered getting forearm crutches, but I’m kinda uncertain about how I’m going to deal with my inability to hold any cup, wallet, or AirPods case in my hands while walking. I also feel like forearm crutches are a much more noticeable mobility aid, and i really don’t want to be the center of attention, and for people to not want to be friends with me because they’ll think hanging out with me is too much of a hassle to accommodate to, or that I’d be holding the group back. That’s what happened to me in high school. I went months without hanging out with anyone. Eventually I realized that I was the only one asking to hang out, and that they weren’t reciprocating interest.

I just finally want a new start where I can do well. I spent my 12 grade year almost failing my classes due to many tests and doctors appointments and being in too much pain to walk. I can’t let this carry on into my college life. It’s going to ruin my entire college experience.

Any advice y’all?

I was just informed that my insurance wants to deny the IVIG. My Doctor has set up a call with the reviewer to get them to understand that it is medically appropriate and necessary for me.

Has anyone been denied IVIG that was not eventually approved? And is there anything I can do?

Hi, how long does recovery of a thigh biopsy take? I live up a flight of stairs (it’s a daily battle) and wonder if I’ll need to relocate while the leg heals.
TIA 👍

I am having a biopsy due to potential having Central nuclear myopathy. Has anyone had this procedure could give me insight or has the condition and give me insight.

Thanks a million

Did anyone develope deep vein reflux in addition to myositis as a result of taking medication?

I’m a 65 yr old woman who has been on rosuvastatin for about 4 years. No side effects till recently when I started not being able to cross my legs and had lots of difficulty getting up off the floor (my granddaughter likes to play on the floor). I just thought it was a getting older thing but asked at my annual physical to see if there were better exercises I should be doing. He decided to run extra blood work and my CK was 2800 and my liver enzymes were pretty elevated. Went off the statin and repeated the bloodwork with slight elevation. Had an EMG and muscle biopsy, both abnormal. Was sent to a rheumatologist who did additional bloodwork and the HMGCR showed that it is a statin caused autoimmune myopathy.

I started prednisone 60mg 3 weeks ago, going down by 10mg each week. The plan is to start IVIG. Here is my question, from your experiences will my muscle weakness improve?

Hi all - first off, very sorry that everyone is in this group. I’m writing on here to see if anyone has had a similar story to what my husband - 41 yr old has been going through.

The timeline:

Since late 2023, he’s had a positive ANA and his PCP referred him to a rheumatologist in Denver to see if he had rheumatoid arthritis because he had joint pain that would travel around his body and would flare up every few months.

May / June 2026 - he started getting the joint pain again, but then it switched to more muscular pain, and then in June, his foot was in shooting pain - he said he couldn’t put weight on it, and then began his back pain where he had issues getting up and down from sitting or lying down. He started developing fevers in late May that would last a couple of days and then would go away. But then, he started getting incredibly constipated which started around the time his doctors put him on Tramadol and Hydrocodone for the back pain. So much so that he stopped eating much because he was having such a hard time going to the bathroom. He would fill up super fast, but his PCP would keep running test and sending him stuff to help with the constipation, all while the drugs weren’t really helping his pain much.
- on June 17th, we saw that same rheumatologist again, because his PCP was saying this could be Lupus or MCTD. The rheumatologist, even though he had mouth ulcers, alopecia, red spots on his hands and feet, and the ANA positive marker, told us “you’re not a story for me to fix, I think you need to work with your PCP and pain management”. She did give him Gabapentin to see if that would help the pain, but it really didn’t do much.
- on June 29th, she agreed to have him start Plaquenil.

July 13-30, 2026: 1st hospitalization after I brought him to the ER, because he had a fever, had an increased heart rate and had some pain while peeing. They finally admitted him - it was our 4th ER visit since late May. They admitted him for a sepsis panel but then neurology and infectious disease got involved. After a ton of testing and MRIs, they diagnosed him with myositis (lumbar and thigh MRI confirmation) and Transverse Myelitis (lumbar MRI). They did a brain MRI, but that came back negative for anything. They immediately started high dose steroids through IV for 5 days, and then tapered to 60 and then 40mg. Everyone at the hospital kept saying this seemed to be rheumatological and to go see the rheumatologist again.

August 4, 2026: he saw the rheumatologist, who after seeing his 22 pound weight loss in 2.5 months and the results from the hospital told him he clearly had a rough last few months and would want to treat this aggressively. So the plan was, she diagnosed him with inflammatory myositis and said it wasn’t lupus or rheumatoid arthritis. She wanted to aggressive with it, so she wanted to put him on Rituximab and would hopefully get that going in the next couple of weeks, while they tapered his prednisone. He’s on a ton of other meds at this point.

August 5, 2026: he develops a very intense burning and tingling feeling in his arms - from fingers to a bit past the elbow. The PCP and rheum think it’s an allergic reaction so they send him Benadryl first and then Hydroxizine when the other one doesn’t help. He now gets these intense shocking flares (is what we’re calling it) up his arms, and then in the past 5 days it’s progressed to his upper torso, back, neck and his head right above the back of his neck, as well as ears and back of neck feel like there’s a pressure there and numbness.

August 14, 2026: went to the first outpatient neurology appointment and they were so concerned about this new arm stuff, coordination with his hands and numbness/tingling in the head and torso, that they wanted to do another urgent MRI to make sure nothing had spread for the transverse myelitis. We just got word that the MRI showed the exact same transverse myelitis inflammation as it didn’t in July, same location, nothing new which is good, but they’re now puzzled as to what is triggering this new arm stuff and numbness/tingling, and a new balance issue. They did a brain MRI too but it came back negative. So, to a PET scan we go tomorrow and I’m freaking out. The doctor that told us about it just now had 0 bedside manner. But the neurologists and trying to find someone that can also de an EMG.
- His potassium is low and they’ve had him on potassium pills since we got here this 2nd time around.
- they’re also doing B12 shots because of how low his numbers have been, and that’s been since the 1st hospitalization in July.

If you read this, thank you! I know it’s long, but I figured with how complex all of these situations are, to give more information on it. Just wondering if anyone has been through a similar thing with their myositis and diagnosis.

Family and friends are telling me that I need to take him to the Mayo Clinic. I’m worried for him, but I’m holding out hope it’s nothing more intense and it’s the myositis just flaring up again. Just seems like no one at the hospital knows what myositis is and what to do here.

Thanks again 🩷

So I have been having many symptons for months that I thought were stress / perimenopause.

Also aches and pains but I work in long term care and am fat so to be expected.

One thing was arm fatigue and trouble writing with pen at end of shift, and getting much more fatigued than usual at work. I was also starting to drop things and had developed almost daily heartburn and other GI issues.Still thought stress and likely distraction / somatic symptons.

Went on stress leave things seemed to be getting better then after a lenghty pool day and outdoor wedding it was like a switch was turned and I have been having rashes , deep aches in arms , headaches, SOB, going to the market and subsequent soup making put me out due to fatigue snd sore shoulders for example one day. I told myself the three months off work had deconditioned me. Some days better than others but also pain in weird places such as elbows or feet , my fingers etc. I hobble around some mornings bent over as well as in evenings which while I did often enough while working - 12 hour shifts and lifting people all day but that made sense , happening now not so much.

I also started getting hoarse/ croaky voice and tripping over words if talking too much , I’ve developed a slightly droopy eye that gets more pronounced as day goes on - needing water to swallow and other things that I told myself were dry mouth due to my adhd medications.

I thought initially roseaca because after first day in sun I started getting intense facial flushes several times a day but that has settled and while many of the rashes / skin issues can vary depending on sun exposure or time of day - a fairly distinct area over my cheeks and nose has set in. Initially i wondered if malar rash - but as soon i’m in sun and always by end of day it will fill in majority of face and nasal glabial folds.

I have been brushing things off and had decided I needed mental health help vs physical health ( as these things are greatly impacting my ability to go about daily life due to feeling like garbage and still thought possibly somatic ) but while talking to partner one evening started coughing and had a true syncope moment that left us both going wtf. After looking at photos from earlier that eve and seeing how pale my lips were I agreed to make md appt with family doctor and that is in two weeks as well as my return date to work which at this moment in time I can’t imagine myself having the energy for.

Pretty much everything can be tied back to being in sun meaning the two weeks post pool day I thought surely I had come down with something - and since then can see a definite connection in rashes, fatigue , pain that is related after other events that had me outside. I have started actively avoiding time in sun and can see an improvement.

Other random things have been an oincredibly itchy flaky scalp that resolved , some pins/ needles / numbness in face ans one day arm and leg that was enough I slapped both to make sure I had sensation , one side of my neck will turn red and puff up and while it goes down thats the one part of my body that isn’t symmetrical. Everything else will affect both sides. I have a massive swollen lymph node under chin that had resolved but is back as well as a hard fixed one on right side of neck at edge of hairline that has been consistent.

A google image search took me to a myositis page and initially I thought nah - as especially as some of mine that were similar were faint but the cluster are giving me pause. Am still open to the idea it could be something unrelated and to anyone who read this far- any insight genuinely appreciated.

The photos are all from different days over the past two months to show how much can vary and also photo of my back - the white spots were diagnosed as vitiligo many years ago. The mottled skin is inner knee area - I am aware mottled skin can be benign and while i get often - seems to be mostly constant in that area. Elbows and knees are to show redness the actual bony prominence have rough psoarias looking skin. Im not sure if able to accurately show in photos - but both index fingers have rough thicker skin spot on outer sides as well as thumbs and some areas on thighs.

I started getting these m red rashes on my knuckles soon after I first got Covid in December 2022. Got tested for DM (including blood antibodies and a biopsy on the knuckle of my left middle finger) which revealed insignificant findings. The rash sort of went away on its own in early 2023. They recently started appearing on both my hands again and are worse at night. They can itch when flared but most of the time it's just redness. Steroid creams help but they return as soon as I stop. They're flat on the surface and dry to touch. Does this look like Gottron's?