Diagnosed 12 years ago. Never had to go on meds, so far. Protecting from direct sun with hats,sunscreen, special clothing brought my CK levels down to near normal.
@@austinz9862 I had a very good dermatologist that diagnosed my DM, cuticles all cracked and bleeding, rash around neck and losing strength in legs mainly. I actually started with Rosacea too, many years ago. Cutting the alcohol, spicy foods and careful with the sun helped, but still had breakouts. Had to go on antibiotics for awhile. You need to get with a rheumatoligist for the DM to run some tests.
I was 18 when I got Dermatomysositis, but I got the diagnose when I was 29 wich is now because of the biposi of lumps on my fingers. I don't have muscle weakness, but I have stiffness in my fingers and toes in the morning, I have gottron's papules mostly on my fingers, but also my toes, elbows and rearly but sometimes on my knees. I feel that the pain comes from my joints, and not my muscles, especially when it is cold outside. When it's warm I don't feel the pain as much. But if I stand for a long period I get really bad knee pain. It started with my fingers, then knees, then elbows, then hips, then wrists and ancels and now my shoulders.
Great - for those lucky enough to have amyopathic. Nothing for us with dermatomyositis? I am NOT taking the Methotrexate amd the Predinisone. I am totally going to a Functional Medicine clinic.
Diagnosed w/Dermatomyositis in 2013; started out with Gottron's papules on knuckles, rash on face that resembled lupus rash; pretty sure a combination of a very stressful incident & sun exposure triggered. Have tried many different meds - Prednisone(raised my blood pressure, so can't take now), Hydroxychloroquine(caused rash), finally Mycophenolate by mouth and 4 different topicals, kept dm in check 1. Clobetasol cream & 2. Clobetasol solution, 3.Desonide cream and 4. Tacrolimus; until 2020 when I developed worst flare I had ever had. Ended up having to have IVIG- Intravenous Immunoglobulin, 3 consecutive days per month for 6 months, but had to stop after 4 months because it caused a pulmonary embolism. Now continuing Mycophenolate & topical creams/solutions, but starting to have increase in symptoms again, and I think heat and stress have triggered beginnings of major flare. I continue to have muscle weakness & fatigue. Edited- lots of sunscreen.
Have you tried intermittent fasting and keto/carnivore diet? I have suffered for 15+ years and recently started this protocol, with good results. Good luck to you
Really enjoyed this. I often look online for more information on Amyopathic DM, not much out there. I was diagnosed a few years ago with it and have been on Mycophenolate for most of that time. Appears to be working very well. Thanks again for post this.
You have leaky gut (dysbiosis and injured mucosal layer) that's allowing LPS endotoxins to dump from your intestines directly into your bloodstream through the epithelial tight junctions. This is the absolute ROOT cause of every autoimmune disease on the planet, it just presents itself differently in everyone. Some are labeled with "Dermatomyositis"; some are labeled with "Lupus"; some with "RA", etc., but they are all the same disease-leaky gut. Watch: rebelhealthtribe.com/total-gut-replay/ Look up Dr. Sonnenburg here on TH-cam who explains a lack of fiber in the diet forces the gut bacteria to feed on the mucosal layer in the gut (from mouth to anus is gut), which is the ONLY thing that separates THEM from US!
Hello, I might have this issue. I thought I had Candida but was “cured” from it and I still have some symptoms. My hands have the terrible calcium lumps and I think I have muscle weakness. Did you take a steroid to help with this, and what did the steroid help with?? There isn’t much information on this so anything could help. I hope you’re feeling okay.
im currently on prednisone and methotrexate + on a gluten free dairy free and high protien diet with omega, b12, folic acid: probiotics, NAC and gulatime supplements im throwing the kitchen sink at it with diet , exercise, supplements and steriods everything that i can control :( The scary part is getting tested for ILD every few months to rule all the bad stuff - leading to a lot of anxiety and stress which again could be one of the triggers :(
@@divyaneetha685 Hi, my name is Candice I was diagnosed in 2017 with DM. I am still struggling with trying to get to a stage of remission. I would love to connect with you on what success you have had with surviving DM! I would be extremely grateful🙏 for ANY insight you can offer as this has been really been a a struggle 😒
My doctor prescribed Triamcinolone Acetonide 0.5%, your doctor will know what dosage is best for you. The ointment worked better than the cream. And for the itchyness an icepack works for me.
I have the worse flair of DM that i have ever had and it just isn't improving. I am so heartbroken. I just am at my wits end. My rash is so bad I don't want to leave my house. My rash is painful at times. I wish i had a diet to go by.
Im being ck for this . waitin on my test.But my rash 🔥 terrible.But the diet carnorvore. Im doing my research on meat only .But i hope u get some relief. Because this is very painful😭
Diagnosed 12 years ago. Never had to go on meds, so far. Protecting from direct sun with hats,sunscreen,
special clothing brought my CK levels down to near normal.
@@austinz9862 I had a very good dermatologist that diagnosed my DM, cuticles all cracked and bleeding, rash around neck and losing strength in legs mainly. I actually started with Rosacea too, many years ago. Cutting the alcohol, spicy foods and careful with the sun helped, but still had breakouts. Had to go on antibiotics for awhile. You need to get with a rheumatoligist for the DM to run some tests.
Thank you all for helping us patients.
Your life savers and love you.
I was 18 when I got Dermatomysositis, but I got the diagnose when I was 29 wich is now because of the biposi of lumps on my fingers. I don't have muscle weakness, but I have stiffness in my fingers and toes in the morning, I have gottron's papules mostly on my fingers, but also my toes, elbows and rearly but sometimes on my knees. I feel that the pain comes from my joints, and not my muscles, especially when it is cold outside. When it's warm I don't feel the pain as much. But if I stand for a long period I get really bad knee pain. It started with my fingers, then knees, then elbows, then hips, then wrists and ancels and now my shoulders.
I wish I were smart enough to understand this better.
Great - for those lucky enough to have amyopathic. Nothing for us with dermatomyositis? I am NOT taking the Methotrexate amd the Predinisone. I am totally going to a Functional Medicine clinic.
Can u please let us know what is functional medicine, looking for treatment options for my 18yr old son who is diagnosed recently with DM
@@vakaarchana517Did you find anything natural that helped?
Diagnosed w/Dermatomyositis in 2013; started out with Gottron's papules on knuckles, rash on face that resembled lupus rash; pretty sure a combination of a very stressful incident & sun exposure triggered. Have tried many different meds - Prednisone(raised my blood pressure, so can't take now), Hydroxychloroquine(caused rash), finally Mycophenolate by mouth and 4 different topicals, kept dm in check
1. Clobetasol cream & 2. Clobetasol solution, 3.Desonide cream and 4. Tacrolimus; until 2020 when I developed worst flare I had ever had. Ended up having to have IVIG-
Intravenous Immunoglobulin, 3 consecutive days per month for 6 months, but had to stop after 4 months because it caused a pulmonary embolism. Now continuing Mycophenolate & topical creams/solutions, but starting to have increase in symptoms again, and I think heat and stress have triggered beginnings of major flare. I continue to have muscle weakness & fatigue.
Edited- lots of sunscreen.
Have you tried intermittent fasting and keto/carnivore diet? I have suffered for 15+ years and recently started this protocol, with good results. Good luck to you
Really enjoyed this. I often look online for more information on Amyopathic DM, not much out there. I was diagnosed a few years ago with it and have been on Mycophenolate for most of that time. Appears to be working very well. Thanks again for post this.
You have leaky gut (dysbiosis and injured mucosal layer) that's allowing LPS endotoxins to dump from your intestines directly into your bloodstream through the epithelial tight junctions. This is the absolute ROOT cause of every autoimmune disease on the planet, it just presents itself differently in everyone. Some are labeled with "Dermatomyositis"; some are labeled with "Lupus"; some with "RA", etc., but they are all the same disease-leaky gut.
Watch: rebelhealthtribe.com/total-gut-replay/
Look up Dr. Sonnenburg here on TH-cam who explains a lack of fiber in the diet forces the gut bacteria to feed on the mucosal layer in the gut (from mouth to anus is gut), which is the ONLY thing that separates THEM from US!
I'm a DM survivor contact me for anything you need
divya neetha my sister was recently diagnosed with it recently what treatments helped you, or did you find anything that helped the pain??
Hello, I might have this issue. I thought I had Candida but was “cured” from it and I still have some symptoms. My hands have the terrible calcium lumps and I think I have muscle weakness. Did you take a steroid to help with this, and what did the steroid help with?? There isn’t much information on this so anything could help. I hope you’re feeling okay.
im currently on prednisone and methotrexate + on a gluten free dairy free and high protien diet with omega, b12, folic acid: probiotics, NAC and gulatime supplements
im throwing the kitchen sink at it with diet , exercise, supplements and steriods everything that i can control :( The scary part is getting tested for ILD every few months to rule all the bad stuff - leading to a lot of anxiety and stress which again could be one of the triggers :(
I was diagnosed with Dermatomyositis in 2018.
Lucy Martin how are you doing? I was diagnosed 2 months ago
My friend has it any information u could share on witch treatment is the best i would really appreciate it!
@@kingofkingz235 hi I am a DM SURVIVOR please reach out to me for anything you may need
@@divyaneetha685 Hi, my name is Candice I was diagnosed in 2017 with DM. I am still struggling with trying to get to a stage of remission. I would love to connect with you on what success you have had with surviving DM! I would be extremely grateful🙏 for ANY insight you can offer as this has been really been a a struggle 😒
@@candicedowden6595 hi pleasure to help u...you can reach out on Facebook my id would be Divya neetha or please share some means to reach out to you
I was diagnosed in 2004 when I was 5. I took steroids as my treatment
I wish my doctor would treat this seriously.
How can pts deal with the itchiness . Pts who are heavy on these meds but still having a hard time getting through the itch
My doctor prescribed Triamcinolone Acetonide 0.5%, your doctor will know what dosage is best for you. The ointment worked better than the cream. And for the itchyness an icepack works for me.
I have the worse flair of DM that i have ever had and it just isn't improving. I am so heartbroken.
I just am at my wits end.
My rash is so bad I don't want to leave my house. My rash is painful at times. I wish i had a diet to go by.
Im being ck for this . waitin on my test.But my rash 🔥 terrible.But the diet carnorvore. Im doing my research on meat only .But i hope u get some relief. Because this is very painful😭
Try to cut out glutten, corn syrup and high sugary foods including starche
So this is not treatable?
That is what I thought when I was diagnosed with this horrible disease but trust me you can recover and have a normal life as anyone else
Steroids and autoimmune suppressants are what I'm taking since derma is classified as an auto immune disorder
@@thehumbleebumblee do you have any muscle weakness from derma? Did the steroids help you with this if you did?
@@talulaht9599 i do have weakness and steroid is to help inflammation
@@divyaneetha685 how
My daughter is 6 she just started methotrexate. 🤦♀️
My 4-year-old daughter just started. Wakes me up at night…
She's out of breath, So unfortunate because her speed is quite distracting, while she has a lot of interesting information about dermatomyositis.
Change the replay speed on your YT settings. Helps for very s l o w talkers also !