Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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junedm 01/03/2016

CryThe middle of 9/2015 I developed a rash on my face and chest. @ this point I had minimal upper arm weakness. My primary medical doctor prescribed me some topical ointments, he thought maybe I had Rosacea and not sure what was up with the chest rash. 9/30/2015 my rashes came back "flaming" and my weakness was really bad, I could not hardly go, my husband was having to brush my hair. Also, I developed new rashes to my right lower abdomen and left upper thigh. @ this point he did some lab work and placed me on Doxycycline for the Rosacea. The first week of October the nurse called me back and stated they were referring me to a Neurologist and the referral team would be calling me back with an appointment, @ this point all she told me was my CPK was elevated. The referral team called me back and said I had an appointment sometime in November. I was basically freaking out because I was just getting worse and I was not sure what to do! I called my doctor's office and got a copy of my labs and see that my CPK was greater than 1000 and my Aldose was elevated. I am a RN, so I knew this was alarming. So I called around and attempted to get an earlier appointment to make a long story a little shorter on 10/8/2015, thankfully the neurologist looked @ my lab work and asked me to come in that day! He believed due to my symptoms I had some type of myositis but not sure what type and did not want to start treatment until he was certain. 10/12/2015 I had a muscle biopsy-this did not show inflammation, which was very weird, so he did not start treatment. My symptoms just progressively got worse and my liver functions were elevated. I got to were I could not drive, my husband and 3 boys were having to help with everything! My neurologist then referred my to a dermatologist the first week of November and he completed a punch skin biopsy it was positive for the Dermatomyositis. @ this point both neuro and dermatologist were now ok with placing me on treatment. So I have been on Prednisone 40mg daily and Plaqnenil 200mg bid. I have been out of work since 11/5/2015. I am now seeing a Rheumatologist, they all want me to start on Methotrexate so I can be weaned of the Prednisone, but my GI MD will not clear me for that until he rules out my liver. My liver studies are still high and something showed up on my CT, so tomorrow I have MRI of my abdomen. As of Tuesday my CPK lever is finally normal and the only things I still need help with is brushing my hair and putting jackets on, huge improvement! So now I just struggle with when and will I be able to go back to work. I really need to finanacially but I am not sure if I can:-( I will start some physical therapy this week, so maybe after this I will know more.

nanny1611 01/03/2016

At the start of our myositis journeys, things are a struggle. But there is life after PM or DM. It just takes time. It seems like your diagnosis and recovery are progressing well, and I'm so glad for you. It's good that you are beginning physical therapy, as the right therapist can help a lot. Regarding work, some of us have to make changes in our job situation, while others return to former careers. Give yourself time to recuperate before making the decision whether to return to your current job or to find a new one. Best wishes to you.

autumm 01/04/2016

Hi June. I am sorry you have DM but very pleased to read you are getting better as your CKs are dropping. Most of us have elevated liver enzymes and CKs at diagnosis but not all of us, this makes the diagnosis difficult for some. I was ill for nearly two years before the lab work showed anything nd then it all went off at once. There is a work up that goes with having DM when your Rheumatologist should be looking for any under lying cause of your illness and what auto antibodies you have as these tell te disease pathway and best treatments for you. The fatigue will go and strength will return with treatment, you may just have to take it easy until all tests are done and your Meds like MTX or Imuran kick in and help to wean you off the steriods. Do sk about your Vit D levels, most of us have very low Vit D levels, take something to protect your bones nd tummy from high dose steriods and watch your weight cutting out the carbs until you have tapered off the steriod. I live in London, here Rheumatologists treat DM/PM because they have great knowledge of Mes and general medicine and Neurologists treat IBM. You will get thee June it does take a bit of time and patience. People here re helpful friendly so you are not alone. Best wishes. Mary

junedm 01/04/2016

Thanks guys!! All of your support is much appreciated! I found out on last week that I also have autoimmune hepatitis! But thankfully the same treatment for this is the same for DM. I see my rheumatologist today & hopefully he will start me on Imuran and wean my steroids! Also, physical therapy has been good for me physically and mentally! Hope all had a wonderful and blessed Christmas and New Year!

trpt1 01/04/2016

Hi JuneDM, Welcome to the group! I am at the point where I might be slowly moving into type 2 diabetes. I have fatty liver with chronic kidney disease. I take 5mg Prednisone and 750mg of Cellcept. I totally credit the Cellcept for controlling my DM and helping my liver very well. I was on MTX at the beginning of my DM. The MTX and Prednisone did help to get the disease under control quickly. I moved to the Cellcept in my third year with DM.

You are correct that our disease modifying anti-rheumatic drugs (DMARDs) do address the liver. Many DM patients will also have Ivig that has been found helpful. The Ivig strengthens the immune system by providing antibodies. Ivig does not always help much with muscle weakness.

I had a lung x-ray in the second year of my DM. I had enlarged lungs and an enlarged right side of the heart. The heart & lungs did go back to normal size over time.

DM will often overlap with Lupus and/or Scleroderma. The Plaquenil does help to reduce rash.

I do not know about the world of nursing. I continued to teach elementary music for two years after my DM diagnosis. I found that my job was just too intensive. I taught eight classes per day with fifty five children in each class. I was also in-charge of eight programs a year for the school. I had a show choir & handbell group that went to contest each year too. DM is different for each person. I found that it is important to not make any fast major life decisions. Give yourself a lot of time in your job and plan carefully, and prayerfully for your future.

Do visit The Myositis Association website at www.myositis.org to read up more on DM, PM & IBM. You might also find the International Scleroderma Website to be most helpful and informative for autoimmune disease at www.Sclero.org

It is always beneficial to have input from a nurse! Welcome to the group. Best Wishes.

saranelson 01/04/2016

June,
I am fairly new to this group, too and everyone has been very supportive. I've been having symptoms since last February and am still waiting to see a Rheumatologist. I have my first appt with one on Friday. My blood work has been normal throughout this last year but I have a terrible rash, muscle weakness, extreme fatigue and my muscle and skin biopsy came back positive for DM. Not sure why my CK levels have always been normal. Weird disease. Keep us posted!
Sara

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