Hi, mccourtjs, and welcome to this forum of great people. I hope you will be encouraged here with us. I got sick in 2006 and was diagnosed with PM in 2008. Then, after a long-term rash, I was diagnosed the beginning of 2011 with overlapping DM and Lupus. I have been in remission a long time, although there have been some minor flares along the way. The neuro put me on prednisone in 2008, to which I responded well. In May 2011, I took my last dose of prednisone. Yay! Some of the natural things that help me are a gluten-free diet, avoiding artificial sweeteners, and taking lots of supplements--one of the most important is a natural anti-inflammatory called InflamericZyme from Olympian Labs. Also, my current doctor told me to take CoQ10 for my muscles and another supplement called Lauricidin.

While all this might not seem great, to me it is a big victory. Before my diagnosis in 2008 I was nearly paralyzed from the jaw downward. Even though I'm not what I was before PM, I am better than in 2008. My life is nearly normal again. There are others with similar stories, who oftentimes don't stay around. But there are others still here with success stories, and I am sure they will respond to your post. Best wishes to you. Life does get better once your doctor finds the right meds for you and those meds kick in.

I think there are many stories of success here. I guess it depends what lens you have on. I think the hope of going back to your old "normal" is probably less likely than improving some and going on to live a full life with a health issue.

I have PM diagnosed in 2008. While I get frustrated with my limitations, I feel very successful in my approach with this disease and the life I've lived since 2008.

When I was first very sick, I found this site in search of support and research. Someone posted, not sure who or where...that people who are doing so well don't need as much support as those who are having a harder time, so they might not show up here as much. I was encouraged by that.

I consider my story a great success story and wish everyone could have the experience I have had. I do believe that Jesus, in answer to prayers, has healed me and continues to maintain my health as the Great Physician!

I was diagnosed with DM in November 2011. I got sick very suddenly after a year of simple skin problems that couldn't be solved. I then lost my swallowing, got incredibly weak (couldn't even get out of bed) and dropped from 100lbs to 67bs. After a lot of testing, a couple nights in ICU, and 2 weeks in hospital...I was sent home to start my recovery with Methotrexate and Prednisone. My doctor told me the day I discharged, "The good news is, this will all get better." He believed in me when I was at my very worst! I gained my swallowing back and 4months later got my feeding tube back, regained my weight, went back to work, etc all in time to get married in June completely back to normal (still on meds and dealing with lack of energy and fatigue,etc. though). Since then have been decreasing prednisone and got off of it completely May 2013. Never had problems decreasing. I have been hiking in Canada, just started a full time job, adopted a dog, and have a beautiful life! Last week Oct 10, 2013 started my decrease in Methotrexate. At my Oct 7th doc appt, my rheumy said, "sometimes dermatomyositis goes away!" I have never heard that, but my rheumy has always always always been right in MY case this far. He told me not to get my hopes up and he's not saying that will happen, but I love that he still believes in my good health!
So I have had good success, and I think it's a beautiful story. I think my disease is a gift, because it has taught me so much and brought loved ones so much closer.

Thanks for the topic. I think it's a really good suggestion!

got my feeding tube out* i meant :) i don't want it back! haha

We are all a success story. On the whole we are all much better than we were. We come to the site now mostly to support those beginning their journey are having a setback along the way. I will always be grateful to my friends here who walked with me and taught me so much. Autumm

Hi Mccourtjs. I completely understand your wishes on looking for hope with DM/PM. Many on this site have been here for years, and we know one another pretty well. This site is a wonderful place where we do vent, discuss many issues, and relate well to one another. I think over time you will find this is a great group!

I think you may enjoy The Myositis Association website. You could read the research available, different meds used in myositis, and find many answers to questions. The TMA is a great resource.

Success with this disease is individual. I have a good doctor and appropriate meds. I feel awful at times, but that is part of having myositis. My goal is to function well on a daily basis. I would like to eventually get a part time job. I think it is important that I see my disease realistically based on the research available. I know my autoantibodies and the direction my disease will take. My knowledge is my best power in seeking treatments to keep the disease under control. The idea is to keep things from advancing forward.

My hope is found in The Lord Jesus Christ. I have a knowledge of scriptures that I use daily. I am on the prayer list at my church. I have confidence in time and for my eternal future. My disease is in excellent shape and I can thank The Lord for His guidance.

I have learned many good things from this DM. Patience and appreciation for many things that I would not have noticed without DM. I do appreciate all that I have learned.

Thanks to everyone who replied to my comment. I try to be a positive person and look for the good in every situation so I appreciate you reminding me of that. I have made progress since being diagnosed with less muscle weakness and most of the rash is gone. The inflammation and itchy head is tolerable but the fatigue and just feeling sick has been pulling me down. Since I have been off of work, even that has been better. I think that I am scared since my family depends on me as the major income earner and I have 2 kids, one in college and one a junior in high school. I'm hoping that this time off will help me to get stronger and on the right course of meds. Thanks for the tips on supplements and the site for information. I read anything I can about this disease and have been looking for other ways to fight the disease such as decreasing glutens and supplements. Thanks

Glad to read that you are trying to be optimistic. That is a good part of the treatment. I've been on a gluten free diet, but it made no difference. I have Undifferentiated Connective Tissue Disease, which includes PM and DM, Scleroderma, etc. Have also had Non Hodgkins Lymphoma--7 years ago. After 5 chemo treatments I decided to change from a vegetarian to a vegan diet. This, I believe, has been the most helpful for me. Do I take medications? Yes I do. But I've lived with this autoimmune disease for more than 21 years and am still mobile, enjoying gardening and cooking. There are a lot of challenges to deal with, but a positive outlook, good family support, and faith in God, are all things that make it possible to cope. I hope you are blessed with these, and that you are getting the medical treatment that works best for you.