Hi everyone. I live in Belgium, Europe, and I have dermatomyositis. The reason I come to this board, is because here in Belgium, such a very small country in Europe, it's an extremely rare condition, and my search for others with this illness has been in vain. I need to talk to others and share my experiences, feelings, fears, hopes, perhaps get answers to my questions... so my search got me here. Excuse me if I should make mistakes in the English language, it isn't my mother tongue... In September I was diagnosed with dermatomyositis. It started very accutely during the summer with flu symptoms and fatigue, fever, achy muscles in my legs, abdomen, shoulders, arms and neck so I thought I was coming down with a bad flu. At the same time I had this purplish/dark reddish rash on my face, but I didn't think it was related to the other stuff I had. I checked in with my doctor when the flu symptoms didn't go away by themselves and was shocked at the results of the blood test. I was told my CK enzymes were elevated and I probably had a muscle illness. The search for the actual illness, in fact, took only a few weeks. A skin- and muscle biopsy finally determined the illness. I was sent to a young, keen specialist, who considers this a challenge, but it also means it's been a search for the right treatment, and I guess I'm not getting the right treatment so far. I was first put on prednisone 32 mg and Imuran 50 mg. I started to improve quickly and started to feel really good. The rash cleared up and I wasn't in any more pain. I even went back to work. My prednisone was reduced to 24 mg quite soon after that. Unfortunately, after 3weeks, my body started to reject the Imuran and I had to throw up every time I had taken my meds. So I was taken off the Imuran like 2 weeks ago, and in the mean time was reduced to 20 mg of Prednisone. I still kept doing well and my CK levels were back to normal. But suddenly the rash is here again, out of the blue, I get cramping in my legs, my arms hurt again and I am getting this new symptom, a dry throat and hoarseness. Looks like it's back, with a vengeance. It's another week before I see my specialist again, but I spoke to her on the phone and she wants to put me on Methotraxate to replace the Imuran. I'm afraid to get sick again, and I'm also reluctant to go thru the side effects of another new drug. But I guess I have no choice. I had hoped the illness would go away as suddenly as it had come but no such luck. This is the first flare-up since I was diagnosed and I have no clue what's waiting around the corner. I hope to find a few people here to talk to and maybe find some moral support as well. Anyway thanks for reading the whole story of you did !
Were you tested for Lyme Disease? Even if you test negative, I would suggest that you request a course of minocycline for several months.
I developed Gottron's Papules after being infected with Lyme Disease in 1990, and Belgium has a very high rate of Lyme Disease. Your story of a summer flu sounds very suspicious, and there are quite a few case studies from Europe linking Lyme Disease with Dermatomyosystis.
Hi Duncan. Thanks for your reply to my post. Well I had several tests, including every possible blood test to exclude other illnesses, so I suppose Lyme would be one of them. I'm not sure, but I'll check with my reumatologist next week when I see her. Actually I'm feeling better again today, it's on and off, really crazy. I often have allergic reactions to bug bites but as far as I know, I never had a tick bite, not that I noticed anyway. Also I live in the city and I'm not really an outdoors person so I guess that would reduce my chances of getting a tick on me... But I'll see with my doctor to make sure if I was tested.. !
Most people who get tick bites never notice them because the tick saliva contains an anesthetic and an immunosupressor which allows them to remain attached to the host for many hours, without causing an immune system reaction. A nymphal stage tick is almost microscopic, and very difficult see, but could be picked up after a walk in a park, or while sitting at a cafe. Unfortunately even the best serological tests for Lyme Disease are only about 70% accurate, so even if the test is negative, a trial course of antibiotics might be the only way to determine if it was Lyme Disease. A month of minocycline or Doxycycline, should produce a period of feeling unwell followed by a reduction in symptoms after a few weeks.
Last edited by duncan1; 11-25-2008 at 12:49 PM.
In 1988, the noted Lyme Disease researcher, Dr Alan Steere observed: "Finally, the perivascular lymphoid infiltrate in clinical myositis does not differ from that seen in polymyositis or dermatomyositis. All of these histologic derangements suggest immunologic damage in response to persistence of the spirochete, however few in number.", in his article, Clinical pathologic correlations of Lyme disease by stage.
So he was noting that Lyme Disease was indistinguishable from the changes caused by myositis, and this parallels my experiences with both diseases. I read in your post about Polymyositis or what? that you had issues with neck stiffness, sore throat and occasion difficulty in speaking, and sore wrists. I had all these symptoms as well. Your description of your initial onset symptoms is completely typical of Lyme Disease, and closely matches my own onset symptoms. In my case the tick bite was behind my left knee, and I got the characteristic bulls eye rash, but if the tick had detached before I noticed it, I would probably have never seen the rash, due to the difficulty of seeing that portion of my body.
I also discovered that Holland has the highest rate of Lyme Disease in the world, at over 100 cases per 100,000 people annually, about 15 times the rate in the USA, while Germany has a rate of about 25/100,000 so you are located in a region with an extremely high incidence of this disease.
Last edited by duncan1; 11-25-2008 at 06:07 PM.
Reason: additonal info
Hi Belgium .. I was also diagnosed with dermatomyositis this year in Feb Im 43 yrs old. I was also put on predisone started at 60 mg in feb little by little it has come down in sept the doc tried to take me off predisone but my cpks went back up now Im still on Imuran predisone methrotextrate. Its been a touch year there are days that Im not sure whats gone happen I go to sleep at night and I dont know if I'll get up the next day.. friend in mia
now what is you r final diagnosis. have you taken muscle biopsy?
I had a muscle and skin biopsy back in feb when I was hospitalized and the diagnoses was dermatomysitis I had never heard of these rare disease I spent 3 months without driving I couldnt get out of bed or take a shower alone I had muscle weakness but Im much better today takes to my doc I look forward this year to better treatment lets see.
I was originally dx'd with Dermatomyositis in 1989. I had just turned 13 which was a very important time in my life. I was born and raised on a horse farm here in Texas. Every minute of my day was spent on or with my horses. My symptom's started with an upper respiratory condition and fatigue. My local Dr. had me on antibiotics for approx. 4 months. My condition progressed to the point of severe muscle spasms/contractions(ending up in the fetal position). I was unable to bathe, brush my hair or teeth, or even walk to the bathroom by myself. After the first episode of contractions I was rushed to a local hospital where a series of tests were run. First came the botched muscle biopsy, that I awoke to while being sutured back up. Then came the unforgettable EMG. That was the most horrific experience I have ever gone through. The Dr's were unable to complete it due to the number of spasms I was having. I did have a battery of blood tests as well. After having all the tests done the Dr's still had no idea what was wrong. Approx. a month later I was finally referred to Children's Medical Center of Dallas. There I finally met the Dr that would save my life. Dr. Fink. He also worked at what I considered my second home for the next 5 years, Scottish Rite Children's Hospital in Dallas. At this point my condition had worsened dramatically, I was unable to lift my head off the pillow. My family was fearing the worst if something didn't happen soon. After looking at all my results he was able to dx me with dermatomyositis. I can remember my mom and I looking at each other with shock on our faces, not believing that someone actually knew what was wrong and that there was a treatment. Dr. Fink asked me if I would be interested in participating in a research study that was going on to try and find out more about the disease. With the good also came the bad. At that time the only treatment was prednisone. I was informed of all the side affects of the medicine: severe fluid retention(weight gain), extremely deep and painfully stretch marks, canker sores covering entire mouth, severe heartburn, severe depression, aching muscles, bruising extremely easy, cataracts, discontinuance of menstrual period, sensitivity to sun, arthritis, excessive hair growth, muscle enlargement and stunting of growth. Those are just the ones I can remember, and unfortunately I had everyone of them. During the treatment I got to the point where I almost rather keep the disease than have all the side affects. I finally realized I better just be happy to have a future ahead of me. I agreed to join in the study by providing extra vials of blood on my trips into Scottish Rite. I started the steroids at 80mg 3 or 4 times a day(can't remember which). Over the next 3 years it was decreased very slowly. Almost immediately I started seeing a physical therapist, who in turn rode horses in her spare time. After visiting with her about my options she felt it best that my horses would be my physical therapy. Mentally and physically! At first, all I could do was sit and try to hold on while my mom led my horse and my sister and dad held onto me. 3 to 5 minutes was all I could take at the beginning. Slowly but surely I was able to get on with a little help and ride by myself. It took over 3 years to lose the weight I had gained and recover most of my strength back. I will always have permanent scars, physically and mentally, but I am now 32 with 2 beautiful children and our own horse farm. I have not had a relapse(knock on wood). I can honestly say this is actually the first time I have shared my experience with others who have gone through or who are going through the same things I did. I just recently found out that dermatomyositis is not just a childhood disease and is more common than what the Dr's thought when I was diagnosed. Hopefully, after reading my experience you will take something good from it and share it with others. Please feel free to ask me questions if you have any....
My name is Trish,i live in CORK Ireland. I was diagnosed with Derma Myoistis last July 09. It started aches in my thighs and upper arms and the trunk of my body all of which felt very heavy. A long with awful fatigue. Went to rheum team who prescribed steroids 80mg, 12 months later I am still on them I almost died in August I was in hospital for 9 months . There is a cancer connection which showed on a PET scan, I am doing will now my doctors have said I am a miracle (I receive an infusion of immunoglobulin each month. I would like very much to talk with you sometime in the future.