Dermatomyositis Facts your Rheumatologist wants you to know

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Dermatomyositis is an inflammatory muscle disease that leaves many weak and overwhelmed. It's relatively rare and as a consequence it can be hard to find information out there to help maneuver life with this autoimmune disease. Knowing the signs, symptoms and common treatments used in dermatomyositis will arm you with the information you need to work with your Rheumatologist to get you feeling better!
🔗 Links:
Your Appointment Home Run Handbook - connectedrheumatology.com/app...
The guide you need to be able to tell your doc your story -and find get answers once and for all!
⏱Time Stamps:
0:00 Intro
1:07 What, Who & Why?
2:46 Dermatomyositis symptoms
3:54 Rashes of Dermatomyositis
5:30 Muscle weakness of Dermatomyositis
8:16 Lung disease in Dermatomyositis
8:37 Blood tests
10:32 Know your muscle enzymes!
12:21 The MRI and Muscle biopsy
13:49 Why you may not get a biopsy
15:25 Prednisone & Dermatomyositis
16:05 Dermatomyositis & Cancer (don't skip!)
19:03 Physical Therapy for Dermatomyositis
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🎥 watch more:
Common Lupus Symptoms: • Learn about Common Lup...
Polymyalgia Rheumatica: • Polymyalgia Rheumatica...
Do I need Prednisone?: • Do I need Prednisone? ...
The Dangers of Prednisone: • The Dangers of Prednisone
🩺 Contact us: info@connectedrheumatology.com
Please note - we do not provide medical advice, opinions or diagnosis via email, phone or social media messaging. We are only open to new patients who reside in Texas, USA.
👩🏻‍⚕️ About me:
Hello! I am Dr. Elizabeth Ortiz and I'd like to thank you for stopping by Connected Rheumatology. I am a board certified Internist and Rheumatologist with over 10 years experience practicing Rheumatology and am passionate about teaching & empowering patients to step up and partner with their doctor. Connected Rheumatology is based in Dallas, Texas and provides state-of-the-art, personalized rheumatology care for anyone with confirmed or suspected rheumatic, autoimmune or musculoskeletal conditions.
We discuss all things Rheumatology, Immunology, Diet & Movement & Mental Health & Wellness because we believe IT IS ALL CONNECTED!
* The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional. Any comments and/or recommendations made in the comment section by anyone other than Connected Rheumatology does not reflect the opinion or recommendation of Connected Rheumatology.*

Опубликовано:

23 июл 2024

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Комментарии : 102

@tsxdude2012 2 года назад

I’ve been in remission for 23 years. Hoping for a cure for those that have been newly diagnosed or are still having complications from this awful disease. Some days, the side effects of the medicine were awful. I still experience skin issues but I’ll settle for that over not being able to walk. Sending positive thoughts for all those who have been impacted by this disease.

@petrprecious4345 2 года назад

his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..

@bs1820 2 года назад

What medication are you on ?

@ridgley017 Год назад

How were you able to go into remission? did you ever have your lungs get infected?

@tsxdude2012 Год назад

@@bs1820 Occasional steroid tapers.

@tsxdude2012 Год назад

@@ridgley017 No infection of the lungs, thankfully. It took me about 7 years before going into remission. I do have an ocasional and mild flare up that only lasts about 1-2 weeks. I believe it was the prednisone and methotrexate combination along with IVIG that helped my remission start. Hoping you feel better!

@SatumainenOlento 2 года назад

Thank you so much! You can read about a condition as much as you like, but when information is actually explained to you this clearly, you get so *much better* understanding about it!

@LolitaDavidovich934 Год назад

I went to a Dr, I was purple, had fatigue, gi issues, swelling of my hands, fever, chills, broken facial, blood vessels rashes, Raynaud's, heliotrope rash, my skin turned black on my hips and between my legs, light sensitivity, and all the classic symptoms, yes all the stuff you are saying, he gave me a pamphlet on Dermatomyositis. Like 6 years later, I finally got diagnosed. I was always ANA negative, but I was Sjogren's A positive.

@Connie-nt5nm 6 месяцев назад

I would give anything , in my life , ANYTHING, to have/see a doctor like you . I have Ben struggling with every single one of these symptoms for about a year now and now I have the “rash” it’s painful .. it burns .. I’m unable to even wash my hands without so much pain . I’ve been to the hospital ( ER) 3 times in the last few months .. and not yet have seen a doctor . I can’t even swallow my food properly anymore and it’s feeling like it gets stuck behind my breastbone . ( for lack of a better description ) I can feel my food going down when I swallow and it’s almost painful .

@madeleine7 3 месяца назад

I am the same. My Blood-Pressure shot up to 200 over 140 ( with very fast, irregular heart-beats) in early October and I went to Emergency but nothing seems to bring it down . Then I noticed a violent rash on kuckles of right-hand, as well as extreme pain in that hand, arm (especially upper arm) and shoulder. and one day on Google, I googled "red knuckles on back of hand." Up came multiple hits from the Mayo Clinic about Dermatomyositis. Finally, my multiple symptoms ( including abdominal swelling and pain, hip and lower back pain and difficulty walking) as well as that feeling of food, "not going down but being stuck behind breast-bone," all made sense and seemed to have a common cause - Dermatomyositis. My own GP had never heard of this Disease (I am in Spain) and told me I could only be referred, urgently, to Hospital Dermatologists if I had Melanoma. I am almost 79 and on the point of giving up!

@jbb3584 Месяц назад

How are you now

@jbb3584 Месяц назад

@@madeleine7how are you now

@biakay73 2 года назад

Thank you for sharing this video. I have MDA5 positive Dermatomyositis that we are struggling to get under control. Mine was actually found when my rheumatologist ran a Myositis panel because of the rashes on my hands, neck and face. It is hard to help friends and family understand my disease. This video explained it so well in understandable terms. After my diagnosis and struggle to find care in 2020, I started an MDA5 specific group on Facebook. We have grown to over 170 members worldwide. Many are terrified after diagnosis because of the lack of information about our specific antibodies, ILD, etc. I would love to see a video about MDA5 to share with my group. Thanks!

@damaliemukiibi3430 10 месяцев назад

My daughter was diagnosed with MDA 5 as well. Can I please join your Facebook page? What's the page name?

@miguelchavez4372 2 года назад

Thank you, thank you for this!

@madalinamarti1911 Год назад

Thank you from my heart ❤️ my mother was diagnosed and we are searching for answers, searching for therapy and wondering if she will ever get “healthy “ again. This helped us so much understanding better were we are and what to do next. 🙏🏼 thank you!!!

@joeymama3889 Год назад

Very informative,spot on accurate

@soniagrindstaff2416 11 месяцев назад

Hi Dr. ❤new subscriber 🙂 so Blessed to come across your videos. 15 years with polymyositis and Dermatomyositis. In addition I have ILD mechanic hands. I’ve been reclusive and falling into severe depression. Thank you for all you do. 😊

@virgemart3091 4 месяца назад

I have DM, I feel alone sometimes and don't socialize as much. What helps me is attending the Myositis Association Support meetings on Zoom. The next regional meeting is April 6th.

@kaukabazim8912 7 месяцев назад

Excellent. Thank you

@marydavis7860 2 года назад

Thank you… very helpful!

@lizaconcepcion386 2 года назад

Thank you for your videos Dr Elizabeth Ortiz. I’ve found them very helpful. I have Sjogren’s and RA. I’ve been getting infusions of Rituxan (Truxima). I would love if you did a video about the infusions, the process and what improvements should be seen and when those improvements occur. Again, thank you for taking the time to explain all things rheumatic!

@Connie-nt5nm 6 месяцев назад

Does anyone here know .. if I have a bloood test done , a regular blood test , would there be any indication of this ? I know the doctor has found out I have severe iron deficiency anemia for the last year now . The last time I had it checked it was up to 6 .. but the first time it was 2 . But I’m not sure what other blood test was done .. what would I need specifically on a blood test for this tk show ?

@amitj4000 2 года назад

Dear Elizabeth, thanks for sharing these informations. Could you give your insights about peripheral SpA? Could you also include what type of diets can actually help with rheumatoid symptoms. Various online resources seems to contradict each other when it comes to diet. So your perspective on this would be highly valuable.

@shelleypartridge1 7 месяцев назад

Thank you so much!

@TINYANCA 2 года назад

Hello! is it possible to have a video about imunnosupresants and side effects and what to do/ or not to do while immunosupressed.Thank you.

@alison1979 2 месяца назад

Nice information Doc! I wanted to see a video about Myositis, but seems you haven’t tackled it yet. Thanks!

@dontuckerjr Год назад

Dr. Ortiz, I appreciate your kind approach to this disease. Two weeks ago I was essentially thrown out of a neurologist office because I would follow their protocol. I had another physician friend who got me on methotrexate and it’s working wonderfully, but I would prefer not to stay on it forever. I have some kind of Myositis but I really don’t care what it is since the treatment is the same; prednisone and methotrexate. My Myositis diagnosis came from an EMG and high CK levels in lab work. I suspected IBM at first, but redness on my face and neck makes me feel differently. Plus, methotrexate is working and most folks with IBM find nothing works. I’m working on finding interventions to put whatever I have into remission. Within the past week I’ve experimented with Keto diet and I’m feeling pretty good. I think I may have one intervention I can be in control of. I’m also trying to find a way to get IvIg, but that is going to be a little harder for me to acquire. I say all of this because I sometimes think the medical profession is so focused on getting an absolute diagnosis that they miss the fact that the treatment is the same no matter. I mean, think of how often you mentioned prednisone in this video. I’m not meaning to be critical of you, it’s my experience with our medical system in the USA that I feel is frustrating me. I am continuing to find interventions. I want my Myositis stopped and sent to remission. I was a body builder when I was younger and now I can’t muster a firm handshake. It’s depressing. Keep up the kindness. It’s the way to be always. 👍

@cooperfreckles 2 года назад

I have the Dermatomyositis where my breathing muscles are weak. My lower lungs never get used because I can not take a deep breath. I have been on oxygen since my mid 40s. I am 54 now it took 17-20 years for diagnosis. I have dysautonomia that is very tough to deal with. I can not walk very far without having to sit down. My legs go numb anytime I get up. I had purple/blue arms and face for years funny I had my one pcp say years ago that someday I would have a strange syndrome that would tell us what I have! Sadly I had that weird symptom and he ignored it! I never had a muscle biopsy. I was to ill for a muscle biopsies. But I was diagnosed by one of the leading scientist/Doctor in the United States. Or that is what my dermatologist. I had head to toe ct scan plus a MRI and some ultrasounds. Plus my blood work has many abnormalities. But I choose to have a positive attitude! I can not control my temperature at all. It is the number 1 thing I have a hard time dealing with. I hibernate in my room in the summer. Keeping it at like 50. My poor hubby has to wear winter pjs to not freeze! I am excited because I am going to be using a little home use ventilator and me trying it was amazing! My bipap is what I do use during the day if I have to. But the mask breaks my skin down. So fingers crossed I can get the ventilator. I had chest pain because my lower lungs have not work in like 10 yrs. In a hospitalization a few months ago I was thought to be disgusting because I can only shower every three days. I kept telling them if I have a shower my skin will start breaking down. My hands were already broken down because of having to wash them. I can not do my hair anymore but I hate short hair on me my husband does it mostly. The aide at the hospital instead of fixing my hair said a nasty comment to me. Anyone reading this that has Dermatomyositis life will be ok. Just keep a positive outlook. I get to read, watch Movies, binge watch any show I want, plus I get to do my puzzle books I like. The best part is I can order my groceries and someone else does the shopping and then just loads it in the car when one of my kids or hubby picks it up. Be careful though I have a lot of falls. We as a family have to laugh at what we call my drunk walking. I do not drink even one sip of any alcohol. But I walk like I have drank a six pack. No I do not drive anymore right now.

@eleanorwewers1616 Год назад

hi thanks for all the information l now understand what's happening to my body

@jackg.3187 Год назад

I love your videos. I wish you could talk about relapsing polychondritis some day.

@AngelRoseHeaven 7 месяцев назад

Thank you

@janmartell9792 4 месяца назад

This is an excellent video. This condition is st the top of my dr's list as to what is affecting me. I also have high AST and ALT levels, but not real high. I am being referred to s rheumatologist.

@katebarlow7320 9 месяцев назад

Hello, thanks for your really informative videos! Can you please explain the difference Gottrons sign and papules? Thankyou, Kate.

@gamaltaher9714 2 года назад

Thanks

@ZL3IO 2 года назад

Hi, Thanks for this good video. It may be worth to mention that the muscle pain is always synchronous on both sides, like both arms /legs/back areas. That is very different from other muscle aches.

@petrprecious4345 2 года назад

@rashidasojar3963 2 года назад

Hi ... Really gd video .. i am one of a dermatomyositis.... Too much of weakness , fatigue ... Really difficult to live with it

@theropesofrenovation9352 Год назад

ABsolutely!!!!

@lovetitleist69 Год назад

I wished you would have mentioned IvIg infusion treatment and the success rate.

@pappaciccia105 2 года назад

I was very weak in 2018, but now I'm weight training and very strong again, my hands have not really improved though. unfortunately, I have now developed scleroderma, so that's a new battle.

@pamsego4926 11 месяцев назад

Thank you! Any way to increase volume on your videos, my volume is up all the way, but a little hard to hear you.

@stephy4533 2 года назад

My daughter diagnosed with JDM started medication on last Saturday but her skin only affected right now.

@stanceworks7995 11 месяцев назад

The sister who did my bloods read my blood tests and my dfs70 was positive (reading 78.0 u/ml)she said i could have this dermatomyositis. Lupus test was negative. Scl70 also negative. I dont have any muscle inflammation but i do have rosacea on face only. No rash anywhere else bit also itchy scalp-not dandruff.

@jacintasimpson1719 Год назад

Do you have an information session of Giant Cell Arteritis?

@elizabethopdycke Год назад

I have the symptoms, positive mri, and positive muscle biopsy for myositis. My Rheumatologist still refuses to give a diagnosis or look more into it. So far he says Sjogren’s only.

@fatmoma1761 2 года назад

How prevalent is multiple myeloma with dermatomyositis? I was diagnosed with DM 2 years ago. Ovarian cancer isn't possible with me due to a full Hysterectomy in 2014. But my grandfather died from multiple myloma.

@ballinbenny0128 Месяц назад

I was diagnosed with dermatomyositis at the age of 5 and spent 11 years fighting it. I'm 30 now and I'm showing symptoms again. I go to a new doctor soon to get tests done. They never did a muscle biopsy on me, I guess because I was so young but I had the rash and weakness at the time.

@not.ordinary Месяц назад

I hope all the good things come to you,stay positive and strong ❤......

@LunaSea-000 2 года назад

Could you please address immunity and Rituxan. I have taken the Covid ( two shots and two boosters) but I have no immunity at all. What exactly does that mean for future immunization of Covid vaccine and for that matter any immunization ( shingles, flu, etc). I can’t seem to get any answers. Thank you!

@auroracolaco8105 Год назад

Hi... Mam my husband is suffering from auto immune disease .I.e skin psoriasis n vesicuboule To control dat I hv to take t hospital follow up treatment.Can u suggest?

@madeleine7 3 месяца назад

Thank you, Doctor, for this very in ormative v ideo. My one, little quibble is that the sound-volume is so low and I find it difficult to hear you, correctly. I have to keep, repeating the video. I am 79 and do not have hearing-loss.

@virgemart3091 4 месяца назад

I dont have any skin rash or skin issues of any kind.. I do have a lot of upper arm pain and disfunction, cant lift arms above head.

@niiabbey111 6 месяцев назад

what if my CK, AST, ALT, is normal but my Aldolase is high - having muscle pain in the upper arms

@audriemeraki Год назад

I have not had a clear diagnosis still. I’ve been dealing with this for over 7 years now. I’m 25.

@joywanza 2 года назад

Thanks you for sharing .. Why do a dermatomyositis patient gets calcinosis... How can the calcinosis be managed

@djurdjinazubac7353 Год назад

I mene zanima kako liječiti kalcinozu

@MaddenAllstars Год назад

I got all the rare effects she mentioned

@Katie-qg7xz Год назад

My physician said I don't have Dermatomyositis because I am obese. Can it be ruled out because of that.

@Bankeranzlybisht4822 Год назад

I m also suffering from dermatomyositis

@carolynsears1710 7 месяцев назад

My husband age 62 was just diagnosed with this terrible disease. It’s heartbreaking! Are there any support groups out there?

@virgemart3091 4 месяца назад

Yes, go to the Myositis Association Support Group. They have monthly Zoom meetings. Next one is April 6th.

@A_ndrea Год назад

Is it normal to be stuck in dermatology hell before being diagnosed with a rheumatological skin disorder? I have always had perfect skin (im 37) but for the past 2 years i have been suffering with confusing symptoms and I keep getting passed around from specialist to specialist who dont do anything. And I live in Boston - supposedly the best healthcare on the planet!

@imab-lever445 7 месяцев назад

Have you had a skin biopsy done yet?

@sarahbridgewater9565 Год назад

I’m still desperately trying to get a diagnosis! My symptoms sort of presented backwards in that it affected my vital organs first… I spent 6 days in ICU and some of that time on a ventilator. I had not only lung issues/failure but heart failure, a heart attack and colitis. It wasn’t until 2 years later that I developed the skin rash, so no one in the medical field connected the vital organs and the skin because so much time had passed between the two health conditions. Also, I forgot to mention serious unintentional weight loss! My bloodwork never shows anything so I’m unable to get a diagnosis… I’m desperate! I took pictures of my skin stuff because even that presented weird but classic as far as other pictures I’ve seen. Again, I’m desperate. What can I do?

@venomx4093 7 месяцев назад

Was a CPK enzyme test ran? If your doctors refuse to listen, find a new dr or order the blood tests privately.

@venomx4093 7 месяцев назад

What all exactly was you tested for as there are a lot of autoimmune diseases that can cause or mimic this like Amyloidosis or cancer like Leukemia.

@lanae68 3 месяца назад

My daughter has SLE LUPUS and MYOSITIS. She's in pain every day.

@mahmamaa 9 месяцев назад

(This comment referse to the beginning of your video): Wrong!, But also right. It doesn't always affect the muscles. I have Dermatomyositis without muscle weakness and I tell every doctor or student online about this, because it took me 12!!! years to get diagnosed because doctors was so focused about the muscle weakness within this diagnose. I have DM with gottron's papules, and I struggle with stiffness and pain in all my joints, but mostly my fingers, toes and knees. My hips and shoulders has been worse the last year. I got diagnosed because of biopsi of the lumps (gottron's papules) on my fingers.

@mahmamaa 9 месяцев назад

But thank you for posting this. This is not only important for the patients, but also the doctors and students, because we all know that doctors are using google and youtube for information sometimes.

@arthurdanielles4784 7 месяцев назад

It is extremely important for sufferers to remember that there are NO absolutes when it comes to this affliction. What some suffer may not be what others are afflicted with OR how, why, when. Don't be conned with those who subscribe to the 'one size fits all' scenario. Also males can suffer and sometimes end up with cancer etc though of course NOT 'Ovarian' !! It is also important for professionals to accept the MALE the FEMALE aspects and NOT apply what works for them re the vast majority of FEMALE patients they have in the same context re their male patients !!!

@lisamonington369 6 месяцев назад

Does everyone get the rashes? Can the rashes develop much later?

@virgemart3091 4 месяца назад

Hi, I dont have the rash or any skin problems, I have DM for 3 years now.

@arlenea7412 2 года назад

What food to avoid if i have myositis

@stephy4533 2 года назад

Can you please talk about JDM

@theropesofrenovation9352 Год назад

You forgot calcium deposits in the skin with eruptions

@lisamonington369 6 месяцев назад

What is that?

@jbb3584 Месяц назад

Right food will not lead to that symptoms ive been there twice thats why i study myself what food to eat

@nickilema1074 Год назад

If dermatomyositis ID associated with ovarian cancer, could it possibly be maybe sexual abuse that could cause ovarian cancer?

@jackiemack8653 Год назад

Yeah right being in agony lying for 45 mins on a flat table getting an MRI THEN a biopsy. How dumb is that. MRI doesn't show you WHY it's inflamed. So I'll skip the MRI thanks.