Age is strictly a case of mind over matter. If you don t mind, it doesn t matter Jack Benny

Transcription

1 February 2014 Age is strictly a case of mind over matter. If you don t mind, it doesn t matter Jack Benny Meeting Attendance On February 8 th, we held our second Carolinas KIT meeting. We had eleven attendees. The first hour we shared the tools that make our lives a little easier. Eddie Smith brought in a bag full of items that he frequently uses. Some of those tools he invented himself. Good for you Eddie! Thank you all for sharing. Eddie s tools Victor Ruotolo guest speaker Guest Speaker Our guest speaker was Victor Ruotolo, a Questcor Pharmaceutical Representative. He spoke about the drug Acthar and its usefulness in helping to reduce an overactive immune system. Victor visits many rheumatologists offices in the Charlotte area and will be promoting an awareness of our Myositis support group. Upcoming Events Our speaker for our March meeting will be Dr. William (Bill) Wells, PhD. He will be speaking about depression and pain as related to chronic disease. He will also provide us with an introduction into Energy Medicine.

2 Also, our coffee mugs should arrive before our next meeting. So plan to pick up the ones you need and to turn in any contributions you may have received. Just for Fun At our next meeting, please wear your favorite hat. Be prepared to tell us about your hat and why it is important to you. Did you get it on a special vacation? Did your grandchild give it to you? Do you wear it when you work on your favorite hobby? It will be a fun way to learn something interesting about each of you. Getting to Know You This month you will get to know our KIT members a little better by reading the brief summaries they have submitted. Please note that due to the number of submissions received, additional members submissions will be in our March newsletter. From Anda C., In 2004, after dealing with issues of weakness and falls, I was referred to a neurologist who quickly diagnosed me with myositis, type unknown. (Note that I had had weird symptoms as early as 1996). A subsequent biopsy indicated that I most likely had polymyositis. However, none of the typical treatments put me into remission. It was thought that I had refractory polymyositis. I left work in 2005, after having difficulties with methotrexate and other medical issues. A visit in 2007, to Dr. Oddis resulted in a possible diagnosis of IBM because I presented clinically in that direction. A biopsy did not confirm the diagnosis, but I was told that it was most likely IBM. I did try IVIg in 2007 and 2008, which I credit to slowing my slide. However, my inflammation markers did not reduce. I am resigned to the IBM diagnosis. I take 10mg prednisone a day and deal with increasing muscle loss, fatigue and weakness. Generally, I feel better than I did before I have Sjogren's symptoms, fibromyalgia, high blood pressure and atrial fibrillation, along with increasing swallowing issues.

3 From Bucky J., After muscle weakness started in late February 2010, I went through three months of testing including a muscle biopsy. I had been asking my neurologist, if I had Polymyositis. However, even after my muscle biopsy indicated I had myopathy, he never would confirm that it was. I had previously had an EMG by another doctor who had told me that I had myopathy, but the neurologist didn t agree with that EMG report. So he did the EMG again and with the same results. I told him from my research on the Mayo Clinic website, that I had all the symptoms of Polymyositis. He then sent me to a rheumatologist. At the time, I could barely walk with a 4- pronged cane. I saw the rheumatologist on June 3, 2010, and he started me on high doses of prednisone 60mg and Methotrexate. By mid August, I had begun to improve. On my first appointment with him, he agreed that I had Polymyositis. It was during the three months of testing that I lost so much muscle mass. I had tried Imuran in late 2010, with no results and in May 2013, Cellcept, which caused me to have swallowing problems. After two tries of different dosages, we had to stop it. Now, I am on my original medicine of Methotrexate once a week along with 5mg of prednisone daily. In October of 2013, my doctor cut the Methotrexate from a 25mg injection back to 20mg of tablets. During my January 27 th appointment, he told me he wanted to try Rituxan again. It had been two years since my insurance had denied it. Recently, I went by his office to sign the papers to see if my insurance would cover it. My main problem now for the past two years is chronic fatigue. I do have a couple days or so a week when I have lots of energy. I always know after these awesome days that my body will become exhausted as this has been the trend. I would love to get back to walking again. Prior to the PM, I did six miles daily. I thank God that I am much better that I was in 2010!! I am a very positive person and even through my ups and downs I remained that way. I am truly blessed even with PM! From Kathy M., I have had dermatomyositis for 15 years and receive treatment at MUSC. From Claire K., I have amyopathic dermatomyositis which was diagnosed by the biopsy of a rash in 2005.

4 From Sandy B., I have PM. My symptom onset was March I was diagnosed in February 2013, and started 60mg of prednisone at that time. I tried unsuccessfully to taper the dosage from July through November, but I am back on 60mg of prednisone. I will be adding an immune suppressant in two weeks. I have recovered about 80% of my thigh and hip flexors and probably 60% use of my arms. Fatigue is still present but not as bad as it was a few months ago. I have to be very conscience of my activities and plan ahead so I that don t use up all of my spoons too early! From Barabra C., I was diagnosed with DM in December 2004, by muscle biopsy. I am almost 57. I had been on Lipitor prior to my diagnosis. I have never been in remission, unfortunately. I am currently suppressing my DM by weekly methotrexate injections. I have also done two courses of Rituxan infusions. I have had very few skin issues and my main problem has been with my muscles. I try to avoid steroids, but occasionally have to take them as well. I am still working full time, but do the work out of my home. From Eddie S., After several years of muscle weakness with frequent falls and many doctor visits, I was diagnosed in 2007, with sibm. After 38 years of working, I was forced to retire and close my business. Because there is no known treatment or cure, I chose to take no medications only supplements. The progression has been slow. I now am in a chair 90 percent of the time. I can still stand, but only a short time with the aid of a walker. All together I'm doing very well. I just take the world one day at a time. Life is good. From Nancy C., I have DM and Interstitial Lung Disease. I was diagnosed in 2009, and currently take Cellcept. I see a pulmonary doctor at MUSC. I also have fibromyalgia and other health concerns. I deal with a lot of pain and ear problems.

5 From Ginna H., I began having pain in my joints and facial swelling about 6 yrs ago. After going to various doctors for 8 months and being told everything was normal - finally a family doctor did blood work and said I had RA. I also had a positive Lupus test. About 3 yrs later, at a dermatologist appointment for a spot on my chest, I asked her about the white spots under the skin on my fingers. Blood work indicated DM. (The dermatologist feels it may have been DM from the beginning since many symptoms of the other diseases are the same.) I have been on Plaquenil for 6 yrs. I am feeling much better physically; although cold weather or lots of walking makes me hurt more. I am currently having swallowing difficulties. I am also waiting to get in to see a gastroenterologist. They didn't have an appointment until Feb 26. I am working full time as an Inerant vision teacher with the SC School for the Deaf and Blind. I travel all over to public schools each day - about 2,000 miles each month. I love my job and the students I serve. It is difficult at times with the pain and fatigue due to not sleeping well enough at night. I am so excited to connect with others going through many of the same issues. Up to this point, I haven't met anyone else with DM or a similar disorder. From Alison A., I have had a multitude of physical issues over the past 20 years of my life. I am 53 years old, but feel like 63 at times, 73 at other times! Thankfully, I'm doing well at this time and feel like my age. I've had mitral valve repair, diagnosed with cardiomyopathy, had a couple of small strokes, Reynaud's syndrome, history of migraines and in 2010 was diagnosed with Polymyositis. It came on suddenly one morning when I couldn't raise either of my arms to wash my hair. I was on Prednisone for about a year, came off of that and I'm presently taking 12.5mg of Methotrexate. From Brenda A., Due to muscle weakness, I retired early from my teaching position in December of My skin rash appeared the following spring. After being seen by various specialists, to no avail, my suspicions were confirmed by an endocrinologist the early

6 part of After a muscle biopsy, my neurologist diagnosed me as having Dermatomyositis in March of that year. Today, after three rounds of IVIg and drug therapy with Cellcept, I am more-or-less in remission. I still deal with some muscle weakness; chronic muscle pain; and fatigue. However, I am in much better shape than I was eight years ago. I also have asthma, which is controlled with medication. I have been bi-polar since my late teenage years and depression is a constant nuisance. I currently take two medications for my bi-polar disorder, thyroid medication, inhalers and another medication for my asthma, Tramadol for chronic pain, and a few supplements to help my muscles. Other than that, I m doing fine. Further note: For about two years, I had thought about the need to have a Myositis support group in the Charlotte area. Then a few months ago, I met Alison through the MDA. Over lunch, we decided that the two of us working together could make it happen - - and so we have! Thank you all so very much for your interest and support. We could not have done this without you! Alison and Brenda it s a foundation under your feet. Author What we love we grow to resemble. St. Bernard By Brenda Austin