There are various forms of dermatomyositis. General weakness of the muscles and an associated rash typically, purple in color, on the bony skin protrusions (elbows, knuckles, etc.) I was diagnosed with dermatomyositis by a rheumatologist after a year of different dermatologists. I was lucky...I only had the skin rash and none of the muscle degradation- which can be quite serious. I was on a course of predisone, methotrexate and plaquenil all of which did nothing. I was then given 4 treatments of IVIG (Baxter Gammaguard) which cleared my rash about 90%. It's been 3 months without treatment (although I am still on plaquenil) and my rash has stayed at the 90% clear level. So far so good. Good Luck!
I myself was diagnosed in Feb 2009 with DM. My symptoms were basically the rash on the hands, and around my eyes. Luckily I was running a lot the last quarter of 2008, so I didn't have muscle weakness in my body which is one of the symptoms as well. I think my running helped keep my muscles strong. But I did notice during that time, that my immune system was down, as I kept having repeated canker sores in my mouth, and had to get my teeth cleaned every few months. Finally after seeing a dermatologist, she referred me to a rheumatologist, who diagnosed me. I currently live in Asia and this is not very common here, although I do have to say, I was diagnosed in a matter of days. Did the cancer screenings, and luckily - no sign of cancer - touch wood!
It's been 2 months, and I'm on a lot of drugs. I'm on the steroids, which has been tapered down from 60 mg/day to 50 mg/day, Rabeprazole - anti-ulcer meds, anxiety pills cause I'm jittery from the steroids, Hydroxychloroquine - anti-malarial drug, a bunch of different vit D supplements, folic acid to strengthen my immune system, and Myforitic Sodium which is my immunosuppressant drug. I'm happy with my doctor here, but wondering are all these different meds necessary? Are others on this much? By the way, what is plaquenil?
I've lost about 15 pounds since being diagnosed, partly because I'm eating healthier, and also because of being sick. It was good that I did lose the weight, because with the steroids, it's given my face a very bloated look about it. So now, I look like a lollipop girl, full face, stick body. Apparently, this will go back to normal once the steroids are tappered down.
I was in the hospital 2 weeks ago due to a bad reaction on another med - we've since switched, and they found another bacteria in my stomach, which has put me on a whole bunch of other meds, approx 6 other pills to add to my list - however this is hopefully temporary for the next 1 - 2 months. Again, this would affect me due to the low immune system.
It's just hit me that I'm ill, and from reading the forums, I feel I am more lucky than others. I know that this should go into remission in hopefully 6 months to 1 year, and cross my fingers, no flare-ups! Let us know how it goes for you and how you're doing!
Hi Blubird, How are things going? I am new to this group so I have just now seen your post. I have had Dermatomyositis for 8 years now and have been through it all. Will be happy to help by sharing info if you still have questions.
Well, it's been an adventure. things are going okay. I've changed Dr's a few times since I posted. It turns out the Dr. I was seeing, wasn't treating me aggressively enough - I wound up being put on 60mg prednisone in June and have been tapering down from that. I'm currently at 20 mg and seem to be doing very well. Once I was at 60mg., the rashes started clearing immediately...
I've been told that people with DM can have normal CPK levels and the disease still be active...(when I couldn't lift my arms, my CPK was only 239) - If that's true, how do they/you know the disease is active????
Glad things seem to be stabling for you. Are you on anything beside prednisone? If not, you really are lucky the pred is keeping it under control. I was not that lucky, I started 60mg pred and methotrexate for almost one full year before my symptoms began to get a little better. cpk was over 5000 when first diagnosed. Stayed on Methotrexate 8 tablets per week (taken all at the same time) once per week, but Dr. started lowering the pred as the cpk began to get lower. After 4 yrs on the methotrexate, started getting really scarry side effects and told Dr. I would not take it any longer so we switched over to Imuran. It has done fine. As far as your question, my disease has "always" remained active, never have I gone into remission. The way you can tell is as your meds are decreased, if your immune system is still attacking your muscles your cpk number will go up. My dr. just plays with the doses and every 5 weeks I am tested for the cpk. If it goes up, he raises the dose. If it is stable, he tries to lower the dose of the pred, and keeps doing that until he finds what "maintenence" dose will keep it under control. Unfortunately, the side effects from the prednisone (8 yrs worth) has caused me as much agony as the disease. Over time, the pred can cause bone deteriation my bones are like paper. Crack ribs when I cough, broke my ankle doing nothing at all, and both of my hip sockets collasped and I had to have two total hip replacements. The side effects from the disease itself and from the methotrexate and the Imuran also can cause lung problems. Mine are severe. I have intertitial lung disease now, (that is when the scar tissue infiltrates your lungs) And unfortunately I also have emphezema and COPD. I even tried IVIG infusions for the Dermatomyositis in the hope that I could get off the prednisone and the other drugs, and made it through 4 sessions, and it seemed to be working but before the 5th session, I had a blot clot to the heart and it caused a heart attack. It may have happened anyway, and no way to tell if the infusions had anything at all to do with it, but I was too scared after that to try again. Right now, the muscle disease is remaining stable, but the lung issues are getting progressively worse. The lung doc keeps raising the pred now to help me breathe, along with about 4 different lung meds. My cpk seems to stay around 225 for about the last year which is a far cry from 5000 So I count my blessings. I try to take each day as it comes and deal with whatever comes my way. I will tell you 8 years ago when I was diagnosed, I honestly didn't think I would make it this long, so I am thankful. I hope you stay stable, and I will pray that all goes well for you.
I switched Dr's again - this time I think I've found the right match for me.
I'm seeing a Rhem that's about a 3.5 hour drive from here - but so far, well worth the drive.
I've started on methotrexate - last night was my second dose - 10mg per week. So far, so good. I'm also on 1 mg folic acid per day for the methotrexate.
I'm also now taking 400mg Plaquenil per day but I don't think it's doing anything.
I'm back up to 25mg prednisone for the moment. I had been told by my previous Dr. to drop to 15 mg. - I did and the rash on my hands returned with a vengence. The new Dr. said go back up to 25mg since that's when/where the symptoms started to appear (itchy scalp).
My CPK was never very high - 239 when I was at my worst. I did notice that as I taper, it has gone up some - it was down to 47 in mid Oct., less than one month later, it had jumped to 107 - still well within normal but I thought a big jump for less than one month.
This new Rhem also looked at my SED rate, Aldolase and C Reactive Protein to get a more complete picture. She said I did have some minor inflammation going on - the SED rate was a little elevated and the C Reactive Protien was a little above normal.
I was diagnosed with Dm in May. I have the rash on my face, neck, arms, back and scalp! I also have the muscle weakness but it is better when I'm up on higher doses of prednisone (20mg) I started out on 60mg prednisone and then added Plaqunil but it didn't help any and just upset my stomach. I'm now on Prednisone 20mg daily and 15mg. Methotrexate on Mondays. My biggest problem is my scalp and I've lost lots of my hair and have scars on my scalp where I probably won't grow hair again! I would love to try antibiotic treatment for the DM. Have any of you tried this or heard of using it to treat and cure DM? Thanks, Becky
I've heard of the antibiotic treatment and discussed it with my family doctor and rheumatologist and a doctor who specializes in complex diagnosis here.
Basically, sometimes myositis is caused by an infection, such as Lyme disease. If that is what caused your DM, antibiotics might help make the DM go away by making the Lyme (or whatever) disease go away.
But if your DM was caused by something else, some unknown virus or chemical or whatever, antibiotics won't help. Even if your DM was caused by a bacterial infection, getting rid of the bacteria might not make the DM go away.
If your blood tests show signs of infection, or if you have symptoms of infection, they probably would have already tried antibiotics, but you should ask about it anyways.
Good luck though. Something like 20% of DM cases go into long term remission and the DM doesn't return for a very long time, if ever. Maybe you'll be lucky like that!
(BTW, prednisone and methotrexate both cause hair loss. When you stop them, or go to very low doses, the hair regrows. So maybe some of your lost hair will return.)