I'm really in need of some support.
I was diagnosed about 2 months ago. My symptoms are classic. Shawl rash, heliptrope rash, mechanic's hands, some muscle weakness in my upper arms/shoulders.
I've been on 60mg/day Prednisone for a month now. I've developed either a lung infection or pneumonia in the last three weeks. Probably picked that up at work. So now they have me on a Z-Pak also. I've also been given a two week trial of Lyrica for the nerve sensitivity in my hands. They are a mess. Everything I touch feels like I'm gripping a hacksaw blade, or burning.
I'm working on my cancer screenings. So far, my mammogram came back normal, I'm scheduled for an ultrasound of all the "girly-parts" in a couple of weeks, and my doctor will not do a colonoscopy until I'm "healthier" (less steroids).
Is there anyone else here that is dealing with mechanic's hands? That has to be the worse part of this! Doc says I can use OTC Cortisone cream for my hands, but to take a couple days off per week. I'm tired of the hangnail feeling, the skin splitting for no reason(hurts) and the nerve sensitivity.
I diagnosed with Dermatomyositis one years ago I develop weakness too in throat and muscule neck, shoulders,and hips.
I use Prednisone but really star help went use with methotrexate see is work for people have mytosis talk to you dr. about
I call Muscular dystrophy office and give me all info about this the best for you hand is cream name tetracream really is help first moment help take pain and red for hand and chest
Thanks for responding!
Where can I get "tetracream"? I'm also in Texas,if that helps.
Hands are really bad today.
I'm sorry to hear you have this disease also. I don't want to be too nosy, but have you had your cancer screenings done?
I'm scheduled for another lung CT next month. I picked up either a lung infection or pneumonia while on Prednisone. I just finished a z-Pack for that. I'm still not breathing really well. I'm on a Spiriva inhaler right now. that seems to help with passing up the gunk builtup in my lungs. I've had larangytis for a month now.
What kinds of doctors are you seeing? Family doctor? Rheumatologist? Neurologist? Dermatologist?
There are some anti-malarial drugs that can reduce the rash, if you do not get enough of a reduction from the drugs you are taking for your general DM symptoms. I hear they don't produce the long term side effects that topical corticosteroid creams do.
My cousin gets good results from these drugs, but my rheumatologist doesn't think I need them.
The thing with topical corticosteroids is that too much for too long makes the skin thin. If you can get results from the prednisone you are taking orally, or your other oral medications, then you won't need the corticosteroid creams any more. Hopefully that will be the case in a few weeks.
I myself use a topical corticosteroid, a betasol cream. But I only put if on for a couple of hours at a time, for maybe 2 days, once every month or two.
Be sure to wash the cream off your hands, including the finger you use to spread the cream around. It is *very* important you do not get the cream in your eyes (it can cause cataracts). If you need to keep the cream on while you sleep, buy cheap cotton gloves at in the painting supply area of a hardware store.
I've discussed CT scans and MRIs with a couple of my doctors, and I've done a lot of reading about their use on our condition.
I had a CT scan this spring. The nice thing is that the abdominal and pelvic one covers a lot, and it shows more detail than a regular x-ray.
The downsides of a CT scan are that:
(1) It is effectively many dozens of x-rays. So too many CT scans are not good for you.
(2) You can get "ghostanoma" -- where doctors see some little thing and feel obliged to investigate it, leading to unnecessary surgery looking for this ghost of a cancer that isn't there. Sometimes repeated unnecessary surgeries.
An MRI has no x-rays, but it is more expensive, and more detailed. MRIs can lead to a lot of unnecessary surgery because the high level of detail can lead to a lot of ghostanomas.
The bottom line is, whether you need a CT scan, MRI, or ultrasound, or just x-rays and a colonoscopy, mostly depends on your age and medical history. Ask your doctor about them, but don't get them if they aren't medically necessary for you.
From what I've read, they should be checking you for cancer every year for the first 3 years. After that, our cancer rate returns to about the level of the general population of our age and sex.
In the first 2 years, I had annual chest x-rays, one colonoscopy and gastroscopy, and annual prostate cancer screenings. The CT scan was only done in the third year.
My next lung CT is scheduled for 12-03. I've been dealing with a rheumatologist, pulmonologist, dermatologist, and a neurologist.
I woke up the other morning with a rash on my thighs. Just red, and it felt like sunburn. It faded yesterday, but is back today, without the "sunburn" feel. I still do not have a voice. I'm going to call them on Monday, and see if they can squeeze me in. I'm getting tired of being "mute".
I hope everyone had an enjoyable Thanksgiving. I played a little golf (just learning how). I hit my tee shot on #1 and the skin on my right thumb just split open. What a pain!
If I could only talk, breathe, and have my hands back, I could deal with the rest of this a whole lot better.
One other thing, how many CT scans are they sending you on?
CT scans use much more radiation than a regular x-ray, so if a regular x-ray will do, you should get a regular x-ray instead.
But if your doctor thinks you really need a CT scan, then go for the CT scan.
There have been some articles recently on unnecessary CT scans. Some doctors seem to think patients won't be happy without a CT scan, so they are ordering them when they are not really needed. Of course whether a CT scan is really needed depends on your specific circumstances.
I've had DM for 3 years, and in that time I've had 3 or 4 chest x-rays (one at the beginning to check for cancer, and the others to check on infections), and on chest and abdominal CT scan to check for cancer. But then your lung infection may have been more complicated than mine.
If you get interstitial lung disease, then they'll want to look at your lungs much more closely of course. But you don't mention ILD.