Dermatomyositis

Hello @kathrynmc and welcome to Mayo Clinic Connect. I found 2 links to organizations that talk about patient support groups. You may have to do a little research with them.
https://www.myositis.org. https://rarediseases.org

You might also check with a large regional medical center or university teaching hospital in your area. Or Facebook. My AD is pretty rare but we do have a group on Facebook!
Will you check out the sites and let me know what you learn?

Thank You Becky, I will check out these links.

I was seen at Mayo Clinic in September of this year for an second opinion on my treatment options, and I am just trying to get as much information as possible, so I can make the best decisions going forward.
Kathryn

@kathrynmc That’s so awesome that you are trying to find lots of information! An educated patient makes such a difference.

Doing the best I can! There has been so much to process, and because what I have is so rare, I find it hard to figure out what to do next. Most of my options are very freighting to me, a lot of powerful drugs with lots of side effects. I know that I have a great care team, so I have to listen to them, and Pray for the wisdom to make the best decisions. Trying to take it one day at a time!

@kathrynmc Oh, i do know what you mean! Before i was diagnosed, i was admitted to the hospital in a non-responsive state. My sisters came and my sons were called to come quickly. With the help of infusions of steroids, i finally came to. My AD was on my brain and so frightening! Thank heavens for the drugs and procedures that are keeping me here today. But, it is scary!!!
Keeping good records is very helpful. My husband kept notebooks of everything starting from day 1. Date everything! Do you have someone who goes with you?

I bring a notebook with me to all of my appointments, most of which I have gone alone. My Husband did go to all of my appointments at the Mayo Clinic. I also have found that My Health Partner Clinics do an amazing job, after all of my appointments I receive an After Visit Summary, which Is a good reference for me. Telling me about today’s visit, if my medications have change, and any instructions from my doctors, and also reminding me of my upcoming appointments. It really helps me a lot to keep everything straight.

Kathryn, I have also been diagnosed with Dermatomyositis since 2018. Are you on statins for high cholesterol? Would be interested in knowing if you have desesthesia as well. It is caused by the DM. Yes, information is difficult to obtain! My Dermatologist who diagnosed the DM was trained at Mayo! Let me know what questions you may have... feel very alone out here! Nance

Nance, I am not on medication for high cholesterol, and I do not have Desesthesia. My primary doctor diagnosed me with DM with MDA5 antigens. I had all of the classic symptoms, the most telling was the rash on my hands, I also had the “Shawl” rash. I also had shortness of breath and muscle weakness especially my lower body. My biggest concern is ILD, I was referred to rheumatologist and pulmonologist specialist by my doctor. They have been treating my ILD aggressively. I was seen at Mayo in September of this year, and got good news, my lung function was stable, even a little improved since my last test in April. So I am staying on current treatment, unless there is progression with my ILD. It’s truly been a life changing journey for me since my diagnosis in January of 2021. Thank You for reaching out to me Nance, I pray that you are doing ok, it gives me Hope!
Trying to take things One Day at a Time! Sometimes easier said than done!
Kathryn

Kathryn, I am so sorry to hear of your ILD! I was not familiar with it so had to research it! I am always wondering from where these rare diseases are originating.
You seem to have better health care than what I have been experiencing.
My Derm and I have difficult time in telling my Neurologist that I have DM! It’s possible to have only the skin involvement without the muscle, which leads me to a question for you. How are your muscles affecting your lower body? Do you have an awkward walking gait? How about constricted hips or thighs? Sometimes I feel I am walking like a duck! Lovely! I have never spoken with anyone with DM, so I really appreciate your responses! Thank you...Nance

Nance, as I understand it, DM can attack your lungs, muscles, and your skin. I am dealing with all of them. I was diagnosed with Dermatomyositis with MDA5 antigens and Interstitial Lung disease. ILD has caused scarring of my lungs, the damage can’t be reversed, my hope is to prevent it from progressing. The muscle weakness is caused by inflammation, I don’t have trouble walking, or issues with my hips or thighs. Sometimes my lower body, mostly my legs feel weak. Maybe because I was put on prednisone as soon as I got the diagnosis, the inflammation has been keep under control. I went to my pulmonary specialist today for a follow up since my appointment at Mayo Clinic, it was all good news, and I have hope that the treatment I am on for ILD is working. So I will continue with my current treatment, unless things progress. My doctors recommend I have Pulmonary Function Test every 3 to 4 months, this will show if things have progressed. So my doctors are monitoring me closely with ILD, and watching for inflammation which will cause issues with my muscles. The skin rash I can live with. Nance I hope this information is helpful to you, I have learned a lot since my diagnosis. Most days I feel pretty good, and I have been living my life just like before DM. I feel very fortunate to have such great doctors, My Primary Doctor, Rheumatologist and Pulmonologist. I was quickly and properly diagnosed, and then aggressively treated.
Kathryn