Hi, Kat. I don't recall "meeting" you before, so I'd like to welcome you to this community of great people. I trust you will get some answers to your questions. I have PM, with overlapping DM and Lupus, but have not had the Gottrons problem. However, my skin is dry, I've battled rashes, and my cuticles are split. For me, I use lots of coconut oil, sometimes several times a day. Hopefully others who have experience with Gottrons will give you better info. Best wishes to you on your myositis journey.

Weldome Kat, I had horrible Gottrons too, The only thing that helped me was the Steroids. They all went away with that. The doctors at the conference last year for TMA said that the skin conditions we get are caused from internal issues and ointments really won't help much at all.

Are you seeing a dermatologist familiar with DM?? Or one willing to email photos of your hands to another doc more familiar with it? I know there is a DM clinic at STanford and i would ask a doctor to email them photos of your hands for advice.

Hope they can figure out something to help. I know how hard that can be. I had to interview for a job with bad gottrons, and i always hid my hands too. They did comment, it was awful.
Shawna

Hello Kat. I have mild Gottron's on my hands. Like Shawna mentioned, do talk to a doctor about what s/he will recommend. I would use green colored make-up concealer followed by a liquid foundation to cover the red. Green cancels red. I would use make-up on your hands if the look of the Gottron's is too overwhelming. You can try green powder eyeshadow with a liquid foundation too. This will help but it is a temporary fix. Good Luck.

nanny1611- yes, I am new here. I was diagnosed with DM in Feb/March. I also use a lot of coconut oil which helps with dryness- just not the redness.

Shawna- No I am not seeing a Dermatologist. I am currently taking 30 mg of steroids-tapered down from 60mg. I will look into the Stanford clinic as I am in the Bay area. I have also heard that they wont heal until internal issues do. I am patiently waiting and trying to stay healthy.

trpt1- thanks for the makeup idea. I will try that when I go to work. :)

-Kat

Kat, Stanford has a dermatomyositis clinic. I see Dr's. Fiorentino and Cheung both together. Derm/Rheum. they were good at getting my condition in check. Now i stick closer to home for most things, i am healing up well.

all the best, Shawna

Hi, Kat. When mine were really bad once, I went to a dermatologist specializing in rheumatological conditions. She prescribed an ointment called clobetesol propionate which helped a lot.

Great-thanks for all your help!

I will ask my doctor about that ointment on my next appointment, I was using Fluocinonide, but stopped because I think that is what caused my skin to thin and peel.

Hi Kat
I also had gottrons papules and inflammed cuticles and I thought they'd never go away. I tried all kinds of ointments prescribed by derm and lots of home remedies. Looking back I think the only thing that made them go away was getting the DM under control. I took Methotrexate injections, prednisone and plaquenil. They went away about 10 months into treatment. I am now technically in remission but sometimes my knuckles will start to get red when I do too much with my hands and I get scared everything is going to flare up. I continue to put coconut oil and aquafor and sarna cream on my hands. I think the steroid creams made them worse, thin skin as you said. I also wore gloves when I did any chores that involved water or cleaning products. Good luck.
Maruska

Hi all,

I was diagnosed with Amyopathic Dermatomyositis this summer, but cannot get in to see my new rheumatologist until Oct. 4th. I have been on Autoimmune Protocol diet since August 1 with minimal difference in my rashes and Grotton's papules. Anyone else tried the AI Protocol and/or have the ADM version of DM? Thank you!

Hi,
My 12 year old daughter has JDM and we have been on the AIP diet since July of 2018. Healing can take a while, so hang in there! :-) I think my daughter's gut got worse before it got better, but she is doing really well now and she's never had to use conventional meds as of yet. We also use many supplements and pure essential oils. She stayed out of the sun & heat last summer, as it caused some flaring, but this summer she seems to be ok. She does get a few bumps here and there on the sides of her fingers and on her knees, but no longer has a noticeable rash or grotton's papules.
Many Blessings,
Keri