By - bunnyqueens
Details: SLE, Dermatomyositis diagnosis. Prominent anti JO-1 antibody. Recently got told bad news about my lungs relating to DM after some disappointing CT scan and pulmonary function test results. Seeing pulmonary doctor on Wednesday and my rheumatologist again on Friday. Pretty let down but wanted to remain positive by seeing how far I’ve come in terms of other symptoms. Always here if anyone needs to talk or has questions.
Oh, I'm so sorry you've had bad news. :(
I really hope things turn around for you.
I myself have strong anti-jo antibodies (antisynthetase, and it's been just hell). And, imuran was actively poisoning my liver, so it's been a long dance with steroids.
I’m so sorry for you as well 😔 That antibody is really so scary. I hope you’re able to find a medication that gives you minimal side effects. I know steroids can be rough so I hope you’re doing okay.
No advice just a motherly hug. Im so sorry hun.
Thank you so much. I needed this
I'm so sorry you have to go through that! I was diagnosed with Dermatomyositis in 2006, and I've been fighting it ever since. I've never been on imuran, just the standard prednisone and methotrexate. Did you get the cuticle problems too? During my latest flare, I had the rash so bad on my eyes and cuticles they were all broken and scabbed over. It was a nightmare!
Luckily, once you get back to a more "normal" point, it's mainly just maintenance, or at least it has been for me. Your positivity and your progress are both amazing!
Thank you for your kind words. Yes! My cuticles and my knuckles were pretty beat up. It’s better now for sure, but I still regularly will have one or two fingers with rly messed up, swollen cuticles. My doctor prescribed me Tacrolimus cream which helped a lot with the rash, not a miracle cure but the only topical that ever did anything. I hope you continue to maintain manageable symptoms, I’m wishing you all the best!
Hey how have you been feeling ?
You look great!
I was recently diagnosed with DM. My similar face rash and the sores on my knuckles is what led to finally getting the correct autoimmune diagnosis.
I am 60 years old and had a healthy 55 years. My heart breaks for you having a serious autoimmune diagnosis so young.
I’ve felt lucky that the pandemic has forced me to wear a mask at work. It does make you feel self conscious.
My muscle problems showed up before the skin issues and has given me more problems than my skin.
So sorry to hear your lungs are involved. I’m not sure I’m ready for all the labs, physical therapy, cancer screening, etc that my dermatologist told me I’m in for now.
Thanks for posting one of your triumphs and being so positive. Gives me hope :)
I had a similar experience when I had my first flare-up with DM. I lived in a small town, and it was 2006, so we didn't really have specialists there, and it progressed way farther than it should have. I only had the "raccoon mask" and the inflamed cuticles, skin wise, but my muscles atrophied so I couldn't straighten them past a 90 degree angle or so, and my strength was completely sapped, so I couldn't sit or stand on my own, but it's gotten a lot better since then, and more doctors recognize DM, so that's good.
All the tests and PT and things seem daunting, but they'll get less and less as you go, plus you'll get used to all the labs, so it won't always seem that way. If you need anyone to talk to about it, or have any questions, feel free to let me know. It can feel really isolating having such a rare disease, so sometimes it helps even if you just need someone to vent to who understands. :) Good luck!
Thanks for sharing your experience. I just got my diagnosis last Thursday so really in the beginning stages but I do have a question since your history sounds similar.
You mentioned that your muscles have atrophied. I’m really thinking similar has been happening to me. Just Saturday morning I was walking down my basement steps and reached my right foot to the next step and suddenly felt and heard a snap, pop.
Blinding pain in my right calf. I sat down immediately on a step it took my breath away and I just cried. Called for my partner who helped me up and into bed. Applied ice, compression wrap and elevated with pillows. No redness or swelling but I couldn’t walk without screaming in pain. I swear if I hadn’t already had Tramadol I’d have had to go to the ER.
In bed most of the day Saturday and Sunday. Resting pain finally went away. Could move with cane dragging my leg. Today it’s a better but still sore to the touch and pain comes from heel low toe up movement. I didn’t even call my GP since I’m convinced I did all I could do. I’ll let them know next appointment what happened. This used to be my ‘good leg’ ha.
It wasn’t the first leg injury. Two years ago walking the dogs up a very small hill and suddenly snap, pop. Excruciating pain in my left knee. Couldn’t walk blah blah but this time I did call my doctor and he ordered X-ray. Inconclusive so a week after the injury I had MRI. Turns out I completely tore my ACL and my meniscus. Had to wear a brace for a month. Use cane. Do physical therapy.
Nobody believed I got that serious of an injury just walking normally up a small hill.
So that year I fell 4 more times. Every other month. Usually walking my new 80 lb rescue dog who was a handful, but he could pull me over when I was standing still. Once I just fell get groceries out of the car. Lost my balance.
My rheumatologist watched my crazy walking and said it wasn’t my RA he said it had to be neurological. So MRI lumbar spine and Neuro consult with no diagnosis of why I couldn’t walk right.
The orthopedic doctor said they would not try a surgical repair due to my age and because I also have rheumatoid arthritis.
My other problems I informed them of were could not do stairs at all. Had to use a cane to get up and down from toilet. Cried to my pain management psych one day that I was going to have to cut my long hair because I can’t wring it out after washing it anymore.
Yeah. Starting to make sense. I also live in small Midwest US town. Nearest teaching hospital is an hour away.
So finally my question. The muscle tear that happened this weekend I’m thinking probably related. Should I say something sooner rather than later? Is it probably related to DM effects on my muscles?
I called my rheumatologist today to move up my 4 month return due in April to next available since my dermatologist said I should not wait that long now that the biopsy confirmed DM.
Jeez. Not sure what to ask, say, do now. Thanks for offering to discuss.
My experience wasn't exactly like that. I was 16 at the time, and nobody believed me that anything was wrong, so I had to fight against that, but I was staying home from school, because I was in so much pain and I was so exhausted. I ended up keeping my hands in my hoodie pocket, so it got to the point where I couldn't stretch my arms out past that point. I never had anything "snap" or anything like that, I just had to go through a lot of physical therapy to stretch the muscles back out.
The biggest thing I can recommend is for when you're talking to your GP, Rheumatologist, Neurologist, etc., tell them anything you think you should. Either you tell them about it and they tell you it's nothing to worry about, and you've wasted nothing, or you could possibly keep something important from them that they need to know. If anything, mentioning it to your doctors will help you to keep from constantly worrying about it. Since one of the triggers for DM is stress, do what you can to avoid it. It's one of the things I have the hardest time with, because stressing out about keeping stress down is definitely something that happens. Make sure your doctors listen to you. (Another thing I struggle with.) I've had probably 90% of my doctors try to convince me that I don't have anything wrong with me, or "it's not as bad as you make it out," "You're not really disabled" etc. I've had a doctor straight up tell me "You're only 25 (I'm 32 now), and if you get disability, you'll just waste your life sitting on a couch doing nothing and collecting checks. You're too young for disability." When I have a flare-up, I'm completely dependent on others. The first time it happened, my mom had to take months off of work, because I couldn't sit or stand on my own, clean myself, even wipe my own butt. It's terrible. I know exactly how you feel with your hair, I had to basically just stand in the shower and have my mom (or more recently, my fiancé) do my entire shower for me, because I just physically couldn't do it.
Something that (for me) is a good and a bad thing, I know what to look for to watch out for a flare-up. In my case, if my muscles start to get sore, I have a mini panic attack, because it could be coming back, or it could just be that I did more walking in the grocery store the day before.
There's still so much that's unknown, it can be disheartening. It can also feel very isolating, but there's always new information coming out and more doctors are learning about it. When I was diagnosed in 2006, there were only 2-5k cases every year in the entire country, and there wasn't much online as far as support groups and the like. Feel free to message me anytime, and I can send you my Discord info if you use that. I'll try to respond as quickly as I can. (I ended up getting sick Monday through yesterday, so I spent the entire time in bed not doing anything, which is why this one took a couple days, sorry!) I made a Discord server for people with DM, too. There's only four of us in it right now, and it isn't very active, but I can invite you to that if you'd like, as well.
It's so difficult to deal with, especially at first, but it WILL get easier. Good luck with your doctors and everything, and don't hesitate to reach out if you need or want to. :)
Thanks so much! I want to take time to read in your post. I’m on my way to the rheumatologist right now for my first appointment since the dermatologist diagnosed DM. They got me right in.
Will see the oncologist this coming Monday. My derm said she and my rheumatologist and oncologist are going to make what she’s calling an ‘action plan’.
This morning I wrote a 2 page description of all the physical problems I’ve had in the past 5 years since my Rheumatoid Arthritis diagnosis. Just as you recommended! I’ve written every symptom I could think of. My bf made copies this morning so I can hand it to every doctor I see in the upcoming weeks.
I’d really like to be able to discuss with your DM group. Thanks so much for offering! I don’t know what discord is but will find out.
Thanks again for sharing it’s so helpful. Hopefully my rheumatologist appointment isn’t too stressful. I did work today and I’m tired so I will write another message to ask for details from you as soon as I can.
Hope you’re having a good March.
It’s been a few weeks and things are still up in the air after so many doctors appointments, labs since my Dermatomyositis diagnosis.
Turns out I may actually have something called Mixed Connective Tissue Disorder which is funny not funny.
I can trace my autoimmune illness journey through my Reddit history. In 2016 I joined the Rheumatoid Arthritis subreddit. In 2021 I joined the Lupus subreddit. 2022 I connect with people with Dermatomyositis.
Turns out I may be getting an ‘all of the above’ diagnosis :(
The last blood test results showed I have an elevated IgG Serum and a positive, high U1 RNP antibodies. They are related I guess to the type of antinuclear antibodies ANA. My ANA last week was 1:640. The positive RNP test, with none of the other antibodies positive, is diagnostic for MCTD.
MCTD includes diagnosis of Dermatomyositis, rheumatoid arthritis, lupus and scleroderma. So… I see my rheumatologist again on March 23.
I’m in the cancer screening process now. Had labs and mammogram this week. They want me to do a colonoscopy but I’m refusing.
I refused prednisone so they gave me Azathioprine. Still on that, hydroxychloroquine and Amlodipine Besylate.
She’s giving me Tacrolimus cream for my face and it helps. But my eyes are terrible. Painful, stinging like they’re sunburned. Swollen.
She said the sun is like kryptonite for me, ha. I’m wearing hats and sunglasses everywhere. I’ve put blinds on all my windows and spend most of my time in the dark where I feel comfortable. Ugh.
Blah blah just sharing my experiences because it always helps me to hear from others with these, issues, I’ll call them. I am pretty angry at my body and trying not to feel sorry for myself. Or worry about the future.
I can only spend so much time reading, thinking about the illness. Mostly I try to distract myself with daily routines, work, mindless TV, audiobooks, etc.
The Dermatomyositis muscle symptoms are getting worse and I’m in bed about 16 hours a day. My hips and butt hurt so much after a few hours doing anything besides laying down.
Hope you are having a good spell. Thanks for letting me share.
Thank you so much for your kind words. I hope things go well for you. I know all the tests are so daunting and scary, I just found out about my lungs because I had finally decided to see my rheumatologist and I know how overwhelming it can feel. I totally agree about the masks- I’ve been having a small flare up and while it isn’t too noticeable compared to the worst its been I still love the fact the mask can cover it. I’m hoping your health improves and sending support, and I really appreciated your comment so much. I needed that today, thank you.