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.
hi all! hope you are having a very blessed christmas season and are finding peace and joy in your hearts. my favorite line from a christmas song this season is "let your heart be light"-it's so easy to let our hearts and minds be troubled!
just wanted to write a quick update. had my most recent rheumy appointment the beginning of december and it went so well. i'm so thankful for my doctor. he said i looked great and was so impressed with my gained strength. i told him that i went hiking in canada in august, and that i've started lifting weights at the ymca. he was so thrilled! he told me i'm making him look good! he also said that i was worse than he thought in the beginning, and better than he expected me to be now. i'll never forget those words! i will also never forget what he said to me in november 2011 when i was being discharged-"the good news is this will all get better." his words of hope helped me so much and he has always believed in me! it amazes me that he could see me in that condition and believe that i was going to get better. i'm so thankful for the Lord's healing hand in my life!
i still need to call to get the results of the bloodwork, i'm curious what my CPK is. in may it was 151 which was good for me. my husband and i just moved into our first home, and i started a new job that i LOVE but it's tiring...so i haven't gotten the rest that i'm used to/that i need. so i'm anxious to see if that affected my cpk at all. rheumy looked at me with a smile and said "I think we can get you off predisone!" i was shocked, because i think he was ready for me to just quit it right then haha. i said "...wow, completely??" and he said to start with 10mg every other day (i was on 5mg daily at the time), then when i'm ready to go down to 5mg every other day, and then go off of it and take 5mg randomly whenever i feel like i needed more support. i was really nervous for this because i know how dangerous it can be to decrease too quickly-but i have always questioned his decreasing plan but gone along with it anyway and it has never failed me. i trust him and he knows me well! i will be very very careful and stay in touch with him and make any changes we think are necessary.
by the way, my mother in law gave me a ninja kitchen system because i told her i wanted to get into juicing-so hand over your favorite juicing recipes if you have any :)
thanks for reading my long update and for your continued support! enjoy your christmas and time with your family, and i pray that you are celebrating the birth of Jesus with me!!
just wanted to write a quick update. had my most recent rheumy appointment the beginning of december and it went so well. i'm so thankful for my doctor. he said i looked great and was so impressed with my gained strength. i told him that i went hiking in canada in august, and that i've started lifting weights at the ymca. he was so thrilled! he told me i'm making him look good! he also said that i was worse than he thought in the beginning, and better than he expected me to be now. i'll never forget those words! i will also never forget what he said to me in november 2011 when i was being discharged-"the good news is this will all get better." his words of hope helped me so much and he has always believed in me! it amazes me that he could see me in that condition and believe that i was going to get better. i'm so thankful for the Lord's healing hand in my life!
i still need to call to get the results of the bloodwork, i'm curious what my CPK is. in may it was 151 which was good for me. my husband and i just moved into our first home, and i started a new job that i LOVE but it's tiring...so i haven't gotten the rest that i'm used to/that i need. so i'm anxious to see if that affected my cpk at all. rheumy looked at me with a smile and said "I think we can get you off predisone!" i was shocked, because i think he was ready for me to just quit it right then haha. i said "...wow, completely??" and he said to start with 10mg every other day (i was on 5mg daily at the time), then when i'm ready to go down to 5mg every other day, and then go off of it and take 5mg randomly whenever i feel like i needed more support. i was really nervous for this because i know how dangerous it can be to decrease too quickly-but i have always questioned his decreasing plan but gone along with it anyway and it has never failed me. i trust him and he knows me well! i will be very very careful and stay in touch with him and make any changes we think are necessary.
by the way, my mother in law gave me a ninja kitchen system because i told her i wanted to get into juicing-so hand over your favorite juicing recipes if you have any :)
thanks for reading my long update and for your continued support! enjoy your christmas and time with your family, and i pray that you are celebrating the birth of Jesus with me!!
I like to juice, but I do not follow any receipes that are too exciting. You can add an apple to most everything, and it will taste good. Be careful that you watch the sugar content in your drinks. Juicing is a quick way for some people to develop diabetes and gain a lot of weight, so watch the sugar!
I think it is terrific that you have an excellent doctor that cares. I am not able to go below 5mg of prednisone without a flare. My disease kicks in when I go to 4.5mg. I know it is not adrenal insuffiency. Adrenal insufficiency causes nausea, sweating, & heart palipitations but never a flare. I have an endocrine doctor too. My rhuemy & endocrine doctor agree that I will probably be a permanent 5mg prednisone person. I hope some doctor will get to the bottom of what causes flares, and develop a better set of meds for this disease. I do not care for deadly med side effects.