View Full Version : Being tested for Dermatomyositis

11-26-2006, 07:42 PM
This is the first time I am posting here. I have been having muscle and joint pain for about 3 to 4 months. When I stop and think back to some of the symptons I have had, I wonder if this has not been developing for about a year now. Last December I went to my PCP with a rash around my neck, upper chest and back that I had noticed for about 3 weeks at that time. He thought I was allergic to something and gave me predizone. It cleared up for a few weeks and would sparatically appear over the next 6 months. After a while it started appearing on my face & arms too. I made an appointment with a Dermatoligst and she prescribed predizone in a cream form to apply to my face, neck and arms for a month. I went back for a check-up and I looked better. She said she thought I had Polymorphis Light Eruption and told me to use the cream whenever I needed to and said to make an appointment if I thought I needed to be seen again. That was in July or August. Late September I noticed that when I would go to get out of bed in the mornings I could hardly lift myself up because the muscles and joints in my shoulders hurt so bad. I had just had my blood pressure medicence changed a few weeks earlier and I thought it might be a reaction to it so I made another appt. to see my PCP. By the time I got in to see my doctor the pains had moved to my hands and the big toes on both feet. When I saw him he took me off of my blood pressure mads. for a week and at the same time they did a bunch of bloodwork. A few days later I got my results and they said my results showed high levels indicating Inflamed Arthritis and wanted to see me again for more test. I went back they did more bloodwork. This was on a Tuesday. They got me an appointment with a RA doctor. But could not be seen until Jan. 18, 07. I called another RA doctor and made my own appointment and they could see me on Nov. 17th. They had prescribed me Loratab for the pain. By Friday I was in so much pain I called them to see what could be done and my doctor was off and the other doctor that was in would not do anything. I was told that they could not see me again until Oct. 23rd. but to call back on Monday when my doctor was working and maybe he could change the pain meds. Monday came and by miday my face was broke out in a splotchy rash across my cheeks (in a butterfly shape) and was running a fever. My sister is a nurse and works in the ER at my local hospital. I called her to tell her how bad I felt and what my symptons were. She said come on in. I work about 30 minutes from the hospital. I do not remember driving to the hospital that day. When I got there they immediately said that it appeared that I might have Lupus. I was admitted to the hospital and had every kind of test possible. I ran a fever of 103* for three days. The only thing that came out of all the test was that my muscles were inflamed about twice the amount that they should normally be. They finally let me go home Friday night with more pain medications and they were able to get me into the RA doctor the next Friday. He ran more rare Autoimmune Diseases blood work. It all came back ok except the same thing showed up about my muscles being inflamed. He said to come back in January had he would check my blood again. In the meanwhile I went to the 2nd RA on Nov. 17th. He did a much more thourgh exam and more bloodwork. He talked to me in great lengths and after we talked he said that what he thought it was was Dermatomyositis (DM). He has scheduled me to have test done with a Nuralogist on Nov. 28th. They are doing an EMG and NCV's then.

I know I have been lengthy in my post but I am confused and frustrated. I have been very emotional over the last few months. I wrote this in an attempt to see if anyone else went through this before being diagnosed. I feel helpless, sad and angry all at once. I will be feeling fine and then the pains hit and I will find myself crying in frustration. I hope someone understands this. As much as my family trys to understand I know it will get old one day and I hate letting them down when they want to do something and I do not even want to get out of bed.

Sanford, FL

kiwi girl
11-26-2006, 08:38 PM
:wave: Hi Elsie. I do understand to a point, my problem is MS related and I have been very ill and feel terriblely alone, but more to the point for you is I have a child who has been ill with Dermatomyositis for 18 months, you may have read my previous threads. She is such a brave kid. Are you meaning the muscle test as the CK which is a muscle emzyme, my daughter was 16,000 in may last year, she lives with awful pain and rash, sore stomach and knee. She had EMG which showed muscle myopathy and had biopsy in August which showed to cells, but living in a very small country the Doc;s have never had to deal with this and are driving me nuts with all there mucking around, they have decided to send biospys to another country for more testing, so she has still not had any treatment. 18 months is along time. Her liver was elevated as well. If you want to chat, I am here for you, as I can understand seeing what my child goes through and course the pain that I suffer each day. Find out if you are to have a biopsy and see if you can find out if the blood test is the CK.
Take care:angel:

11-26-2006, 08:46 PM
The blood test was CK and it was elevated. I am having two test done this Tuesday. One is an EMG and the other is an NCV. Tonight is a bad night I can not lay down because the muscle in my left leg (around my hip) is having spasams. All I have to take right now are pain pills. And they don't seem to work as good as they did in the beginning. Right now all I am doing is crying. How old is your child? I can not imagin being a child and going through this.


11-26-2006, 09:25 PM
Sorry to here you are going through this. I was diagnosed in August. Mine started with a rash, very similar to what your experienced. In July, I was given Allegra for the "allergy" with all the itching, but that didn't work. By the first week of August, I had raw sores all over my chest, head and neck and my chest was purple and I could hardly walk. When I finally saw the RA the end of August, I could hardly get out of a chair, walk up stairs, etc. and my skin on my neck, chest and thighs was horrible! My CPK at that time was 6,000 (normal is under about 170 I think) and my muscle strength on manual testing was about 3/5. He started me on prednisone (80 mg a day) and sent for all those "rare" blood tests. He also ordered the EMG/NCV which showed muscle deterioration consistent with DM.

The pain will subside as your muscles start to heal. I have been told the course of treatment is prednisone to get things "under control" and then adding Imuran with an abnormal CPK and Methotrexate with a "normal" CPK as well as Plaquenil for the skin. I started with 80 mg of prednisone the first of August and finally (after a miraculously normal CPK) was able to taper to 60 mg about four weeks ago and am now down to 20 mg. I was given Vicodin for pain...don't know if that is stronger than what you are taking, but it did help quite a bit with the pain.

If your RA did not start you on prednisone or any other medication besides pain meds and believes you have DM, I would definitely start asking some questions or request a second opinion. While the EMG/NCV should confirm or disprove his diagnosis, you should still be treated with something besides pain meds.

It does get better! Each person is different and require different dosing of medications. It is a lonely, hard world right now, but improvement is on the horizon. I tried everyday to think of how much worse I could be and tried not to focus on all the symptoms of the disease (like when I couldn't dress myself, get out of bed on my own and had to get a lift chair because I couldn't get up). I was a healthy 40-year-old one day and within two weeks could hardly even walk. Now, four months later (and definitely a miracle along the way) my muscles are much, much better but my skin is still an issue, but I continue to focus on the positive things which really seems to help.

I totally understand your situation and will pray for your healing!

11-27-2006, 03:19 PM
Thanks, I will ask him on Wednesday about getting me started on something besdies pain med. And I want to know what my CPK has been. Today I have been getting muscle spasms in my legs real bad. This is encouraging that you have saw that quick a results from the Pred. Hopefully that will be the same for me if they ever get me started on them. haha.


01-15-2007, 10:55 AM
:p Hi, I too suffer from Dermatomyositis. It took over a year (2005-2006) before I got a diagnosis. After many visits to family doc, 3 different dermatologists, many pills to help w/ the itching and swelling, prednisone injections, prednisone pills, triamcinalone cream, and finally collapsing on my bed for three days, I ended up at the U of M ER.

After 3 weeks of testing, (blood, skin and muscle biopsy, EMG, scans, x-rays, dermatologist, rhuematologist, etc.) I was told I had Dermatomyositis. Thus my life of taking pills everyday commenced. And I hated it. And I hated being weak...after all, I work Construction! Telling the guys why I was weak sucked. Over and over I told my story. Prednisone 60mg/day, Fosomax, Immuran, pain meds...

After several months of taking Immuran, I suddenly got sick from it. It took awhile to figure out which med was making me sick, but eventually pinpointed Immuran. On the night I took Immuran all by itself, I began vomiting so violently that my heart went into Atrial Fribulation...more meds...and 3 days in the hospital.

That happened in Oct. 2006. I was hospitalized again in Oct. and never made it back to work in the 2006 season (frost, snow, winter lay-off). All total, I missed about 9 weeks of work last year. So not only am I way behind in medical bills, I am broke!!

Now I am on Methotrexate and have tapered down to 20 mg/day prednisone. I think prednisone, along with my narcotic pain meds, altered my mood. Depression, anxiety, insecurity, and hopelessness set in each and every time I ran out of pain meds. I happen to be an alcoholic/addict and have been living a life of recover since 12/30/05. Although, I never touched a drop of booze, I became hopelessly addicted to Oxycontin and Dilaudid. Eventually, (12/19/06) I ended up in the hospital for Detox/Rehab for Opiate pain killers.

Today, I take a cocktail of meds 5 times a day. My pain is under control for the most part. And not with mood-altering meds. My Dermatomyositis is under control according to my Rhuematologist. I still feel weak and don't have much endurance. My belly is huge from all the prednisone and I weigh more than I ever have my whole life. I continue to struggle with accepting that I have two diseases, Dermatomyositis and Addiction. But I believe that I may choose each day how I feel, and today I choose to be happy.

That is my story and I'm stickin' to it...!;)

Thanks to my little sis for sending me this site. I am a firm beleiver in the power of groups and sharing...

01-21-2007, 05:46 PM
Ice43 sounds like you have what it takes to conquer this disease. My husband has dematomyositis and it took an ER visit for him to finally be diagnosed. He had cancer and was receiving chemo when his diseased surfaced and of course the docs all thought his rash and muscle weekness was from a reaction to the chemo. This was in the fall of 2005 and he is just now considered having it under control.

02-06-2007, 02:53 PM
I am new to this post. I have been diagnosed w/dm since 1/1997 but showed symptoms since summer of 1996. It started w/rashes on my eyes that looked as though someone punched me, blue/black knuckles, slow,consistent weakening of my arms & legs, trouble walking, climbing stairs, etc.. My Dr thought I had a viral infection & subscribed some antibiotics (which I recently read can increase myositis), but when I returned to her in early January,1997 & was unable to sit on the examining table let alone control any of my motor skills, she sent me over to the lab for some tests. While at the lab,she came over & requested that my cpk be checked. I was fortunate in that she had another patient (male) that suffered from the same disease & she recognized that I may be affected as well. I then had a biopsy, emg,stress tests,ekg that supported the diagnosis. I was on disability for 4/months & did go into remission for a while. It is a stressfull disease for me. I am used to moving at a fast pace & am a little anal but I am learning as I get older to relax more & take things in stride even though the disease affects your moods and your body. I sometimes wonder why me? I have always been the healthy one in my family. But it is good to release my frustrations to people who understand.

02-06-2007, 03:06 PM
I also wanted to add that I am flaming again. I started late August 2006 with extreme shoulder pain on my left side which I related to carrying my purse/tote bag. I also had a nasty rash,itchy rash on my right elbow. When I saw my doctor, he did not (nor did I) relate this to myositis. He gave me some cream (which did nothing for me), and I also went to physical therapy for my shoulder to no avail. I requested to go to a dermatologist who asked me some questions & suggested it may be related to myositis. Prior to Thanksgiving my arms started to weaken & I went to the rhumatologist to have my levels checked & it was confirmed that my levels rose @ 4000. It is strange that my levels went from 4000 to 13,000 & today that are at 8000. One positive note for me is that when my symptoms return, I recognize them right away & I get my levels checked. They havn't been this high since Dec 2003 & sometime I can be treated with imuran alone if it is a mild case. Also, in my case, stress is a small factor. When I am overwhelmed, my myositis always kicks in, so I am trying to change my way of thinking & dealing with the normal day to day stress of living.

02-22-2007, 04:03 PM
I am new here. I was just finally diagnosed with dermatomyositis. Last year I got very sick with a severe cold and 2 months later overnight lost my ability to swallow and than a couple weeks later lost my voice. Went to family doctor who sent me to ENT who said I had an immobile soft palate which is why I was talking so nasal and had fluid coming out my nose (sorry). Than went to nuerologist who did some testing and proceeded to tell me I had ALS.
Went to a well known hospital in Philadelphia and the head ALS said I also had ALS. Meanwhile I had 2 swallowing tests, 1 brain MRI, spinal MRI, 4 EKG (oucH) countless blood work and was seeing an arthritis doctor too. He put me on 10mg prednisone which helped with the joints.
After 7 months of living with a diagnosis of ALS, putting my home on the market, buying a burial plot, returning my grandchildren to their mother after 12 years, quitting my job, I went to another Philadelphia hospital and met with another ALS doctor. Lo and behold she took one look and me and asked my how long I had the rash and informed me I did not have ALS but suspected a Connective Tissue Disorder. After another EKG and a muscle biopsy which really did not show anything abnormal she sent me to a new Rheumitologist who immediatedly suspect Dermatomyositis. He sent me to a dermotologist this week and he immediated diagosed me with derma. He actually brought in the nurses and other doctors to show them my disorder.
I have not had any pain the only thing that bothers me is the swollen feet which he says is part of this. My muscles are alot weeker but I can still walk. My predinosone had been upped to 60 but is now down to 40 and I have had more problems with that than anything. I am going tomorrow to get my lungs cleaned out because with my swallowing I have gotten junk in my lungs and its infected. I have lost over 90 pounds in the past year due to the swallowing.
What frustrates me is how all these doctors missed the correct diagnosis and that for 7 months time was wasted in finding out what was really wrong with me.
My blood work actually is very good and to look at that you would not know I'm sick.
The doctor is going to put me on methotrextite next month. Has anyone seen improvement when they take that in addition to prednisone? I am hoping that it will help build up my muscle some.
I guess I'm lucky in that I don't have pain like some of you have written.
Any advice or suggestions would be appreciated

02-26-2007, 07:09 PM
Slkfocus, your story sounds like so many I have heard. DM is a hard disease to diagnose I believe. My hubby had cancer and all his strange symptoms were thought to be from the chemo. He had swallow problems and finally had a gastric tube put in. I can't believe that was not suggested to you so you would not lose so much weight. He is doing much better with his swallow problems after speech therapy and coming down off prednisone and off some other meds. He did get pnuemonia and during his hospital stay he had a bronchioscope done to clear out his lungs. He still cannot drink reg. liquids but has to drink necter thick liquids by adding a simply thick gel.

He takes methotrexate and as I said is coming down off the prednisone. He is getting stronger, but will still need physical therapy to build up his muscle strength which we understand will never be back to where he once was. He has lost over 60lbs and it was all from the DM, he did not lose anything during his chemo. As he says the cancer and Chemo was a snap compared to this disease. I wish you well and hope you are doing better soon.


03-05-2007, 10:42 PM
Hi Elsie. This disease is frustrating and unfortunately, a lot of docs just don't know enough about it to really help you. I was dx in 2004. I have a mild case of DM and yet I am amazed at how it has changed my life. I can relate to the muscle pain, and if you read a list of the symptoms of DM, it usually says there isn't much pain, but that is wrong. I have upper leg pain that at times seems unbearable. I had a rough year after I was dx, and then some improvement. I am concerned that maybe it is getting bad again because of how I feel.
Don't give up Elsie. You aren't alone and we are here when you just need to vent. It is difficult living with this.
Take care. Julie

03-08-2007, 04:29 PM
Thanks so much for your comments. Hope you are not getting worse again.


04-15-2007, 06:22 PM
i am graping for straws here. so much of this seems familiar (symptom wise) but still waiting:mad: to see rhum.

what i was wondering is this.......has anyone had any problems with their soft palate involving bumps/lesions/redness/increades blood vessels...general nastiness.

it was biopsied as hyperplastic squamous mucosa, and no, i do not smoke. all these doc.'s are doing is telling me what i don't have, and no one is giving me any answers. i have a myriad of symptoms:glands, rashes, pain, fevers, fatigure. i am in misery.

05-19-2007, 04:26 PM
anyone here??

does this disease have elevated ANA?

09-01-2007, 04:42 AM
Hi I am right with you for being new. I came back from South Carolina after visiting my folks in PA, and had an ugly purple pain ful rash and welt on my right hip. THe ER said is was lyme and began antibiotics. I had the pain in joints, fevers, muscle weakness, loss of weight fatigue etc. But then I also ran 5 miles a day and am 39 and thought I was just feeling the affects of Lyme and my exercise regime. I saw my regular doc less than five days later who looked at my hands, feet and face and said this is not lyme and due to the purple rash and fingernails, etc and got me to a rhumeutologist because he thought it was Lupus. The rhu. started all testing blood work (normal surprisingly),eek nerves ok but muscles inflammed, muscle biopsy(normal),skin biopsy(dermatologist confirmed rash DM awaiting biopsy results), weakness and atrophy tests done by rhum on exam not good, chest xray etc. I have all the symptoms but some of the diagnostics are out of whack but he started me on steriods due to the decline of muscle strength. I have swallowing issues, speech and hoarseness and shortness of breath. So that is where I am. My rhum. explained that is a complicated disorder and that the rash is the tell tale sign and the symptoms etc. some of the diagnositc tests results are deceiving and frustrating. At times I think I am crazy, but he reassures me that I am not and says just look at your hands and that is a reminder that I am not crazy. Once you have that rash and that pain you know it is real. I hope that helps

09-13-2007, 07:03 AM
Hi everyone, thank you for your responses. It has been a world wind. The skin biospy confirmed the DM diagnosis. I was ived with 500 mg of steriods for three days and now am trying 60 mg prednisone. I started the Imuran too. I also am nexium alot to help with swallowing and lunesta for sleep. The hardest part is the sleep factor. I can deal with pain, but being tired--is cranky!! Thanks for all your support, it is nice to know that we are a team. I quess I must except that this will not be a quick fix? Thanks, Jenn