Dermatomyositis – An Unsolicited DM!
So, some call it DM…
A few months ago, I was a (relatively) normal 47 year old man. Then, in mid-November 2024, a rash and swelling developed on my face for weeks that wouldn’t subside. This was followed by a near complete failure of my abdominal muscles, seemingly overnight, which occurred right around Christmas.
Within days of that, raising my arms above shoulder height was a near impossibility. Standing up became difficult, rolling over in bed, downright impossible. Getting into the car and driving it was a challenge, additional muscles failed, and most concerning of all, by the second week of the New Year, swallowing anything without multiple gulps of liquid was an unenviable task.
I was placed on high doses of Prednisone by my doctor, which, after 10 days, had zero effect. Then my PCP referred me to a Rheumatologist. By 1/24/25, I was in her office and after counsel and examination, she was fairly certain that she knew what she was seeing…drumroll…DERMATOMYOSITIS.
Wait, what? What is Dermatomyositis, or DM?
Regardless of what it was, 6 days later, on 1/30, I was back in my Rheumatologists office after 6 days of completely ineffective Methylprednisolone. The pain and malfunction of my muscles were at their breaking point that morning. She knew I was not absorbing the steroids, and the only option for relief was to send me from her office to the ER for admittance to the Hospital immediately. These steroids were going to have to go right into the bloodstream via IV if they had any chance of providing relief.
So, on 1/30/25, the diagnosis was all but official, and I was admitted to a local hospital.
A Most Unsolicited DM had “slid in”…
February 13 – 20 Days since Diagnosis
Today I had my first in-office appointment with my PCP since I left the hospital. My primary concerns were:
-Confirm he agrees with Rheumatologist diagnosis!
-Verify how he interprets her next steps…
-Should I seek a second opinion?
-Additionally, some quick inquiries about the meds I’m on, as well as what future PT might look like***
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February 14
Notable DM interaction of the day:
Called the Infusion Center at the hospital (per advice of my doc yesterday). Told them that I believe the order for my IVIG and Rituximab Infusions had been ordered a week ago…Since I haven’t yet heard from them, could they tell me when I’ll be able to schedule? A nice person named Lauren informed me that once the order is in, it typically takes 6-10 business days for processing through the admin system and Insurance. Once that’s complete, they’ll call me to set it up.
I guess I can understand that, but I must say, I’m really desperate to get that next IVIG and a week or two worth of Red Tape seems a bit silly. Can’t complain though. I’m learning that it’s important to advocate for yourself but complaining about a system I cannot change right now will do me far more harm than good as it pertains to the stress of psyche that I’m trying to manage here.
BTW, I’m writing this post at 1:42AM (2/15 now). The steroids have my sleep quite screwy the last two days, and tonight, I’ve had three serious bouts of releasing bowel contents that have been stuck in the “HOLD” position for three days. The Prednisone Effect is REAL, folks. Goodnight.
February 15 – Today wasn’t all that eventful on the DM symptom front, save for the fact that a few the cuts on my knuckles opened up at various times today. I’m using various lotions, but my hands continue to remain irreversibly dry all day. It’s frustrating (as are most of the other symptoms), but it bothered me more than anything else for some reason today. On another note, a good Doctor friend of mine had sent me an HHS Public Access paper on DM earlier in the week. I had perused it when he sent it but dug in all the way and made notations today. Quite a bit to take in, so I’ll get to that in a side post over the coming days. Suffice it to say, the options my Rheumatologist is pursuing are listed as common treatments, but there ARE some other, more progressive potential methods of treatment to be explored. Again, that’s best for another post when it’s not after midnight; but, alas, my sleep patterns are quite mixed up due to ‘roids…and so I can’t yet hit the pillow. Close though…Good Evening, all.
FEBRUARY 16 – Not a good day today, and it was foreshadowed the moment I woke up. I can tell almost immediately what the day holds for my body and DM’s hold over it the moment I open my eyes – LITERALLY. The way the disease first presented in me was a swelling and rash above and below my eyes, accompanied by skin pain anytime I tried to stretch my face. When I wake up, if the face seems extra tight, and the eyes feel swelled, I’ve learned to predict a day where the muscular pain and lack of range is particularly apparent. It’s possible that I could be imagining that, but it seems to prove true on most days. It did so today, as the discomfort was pretty frustrating, and the steroid induced agitation was apparent to my wife and kids. I had a nasty argument with my wife which was, in hindsight, completely preventable if I had just dropped a seemingly meaningless issue. To this point, my wife has been very understanding of the Prednisone laced tirades, but it really sucks to put her through it (as well as the kids). I’m not blaming the drug, but I am. It’s just that the moment the outburst is over in these instances, I can immediately realize that I just lost all sense of sanity for absolutely no reason that was anywhere near worth it. Dermatomyositis gets too many victories some days…today was one. Thanks for listening.
FEBRUARY 17 – No real news fit to dish today. As it was President’s Day, I did not hear from the Infusion Center; guessing they were off. Fingers crossed for tomorrow. I also failed to hear back from my doctor about a Prednisone refill which I’ll need after tomorrow. She may have been out too, and honestly, these little downers are having less effect on me as I try to learn the sort of patience that I think DM is meant to teach me. Regardless, today was a bad day for my right foot. Quite swollen, and one of the small cuts has developed on the top of the foot. Hopefully it’s easier to manage than the ones on my knuckles. By evening, the limp was pretty bad, and my wife went with me to finally get some new sneakers that one can “Stand Into”, which paid IMMEDIATE dividends. Much more cushioned and being able to put them on without bending over is a life saver right now. We’ll take that as today’s win. Let’s see what Tuesday brings…
February 18 – Well, I can tell you what Tuesday DIDN’T bring…It DIDN’T bring a call from the Infusion Center to schedule my IVIG or Rituximab treatments. Here’s hoping for tomorrow. What did occur today is that after 15 days of the Prednisone at 60mg, my doctor ordered that I take it down for 50mg for the next phase. Not sure why we’re bothering to ramp it down when it doesn’t really seem to have any effects anyway. I think I’d experience just as much inflammation if I were eating Skittles, but, alas, Dr’s orders, so we’ll give it a try. Actually, I must say that the swelling was down in my foot today. The eyes were bad though, and my vision was slightly blurred at times today, which is one of the most disconcerting symptoms I’ve experienced so far. Big appointment with the Rheumatologist on Thursday, so I’ll be bringing it up. In any event, this blog is clugy (not that e=anyone but me wil ever read it), but I do plan to work out the aesthetics of it in the coming days. Stay tuned.