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.
I want to let you all know that I am sorry that I have not been online in a very long time. I seem to allow life to take over. I haven't felt good in so long, but I know that you all have ups and downs also and I should be here for you. It seems that each time I try to log in the website doesn;t recognize me and I have to update my password, so I ge frustrated and tell myself that I will do it later, but never do. Anyway, July 16th. I had a total left hip replacement and the pain which I thought was caused by my left knee went away. My CPK has gone done to half the number it was. It is now in the 80 range. I couldn't believe it when my Rheumy told me. If only the neuropathy would go away I would neve stop smiling. Neuropathy is my only complaint. I am trying to taper the Prednisone. I was suppose to go down to 12.5 from 15 mgs per day, but the pain is too much, so I went back up to 15 mgs per day. I still have no idea why I take the Metrotrexrate, (spelling is probably off). I know it is for arthritis, which I was never diagnosed with and I can't tell if it is working at all, as I have numbness and tinkling in all my fingers. I add up the cost of my meds, which the insurance paids for and it is unbelievable. Over $2000 per month. I would never be able to pay for all these meds. Prednisone cause my blood glucose to stay high, which in turn causes me to take more insulin, which I didn't take until I was diagnosed with PM and placed on Prednisone. The insulin is over $400 alone for each box, which has 5 pens each and I use over 5 pens of Levemir every 4 weeks. I am blessed to get enough Social Security to be able to pay my Affordable Act Insurance premium. No matter what anyone says about Obamacare, as they love to refer to, I have no complaints. It costs me less than I paid for insurance when I was working and it is a better insurance. My premium is going up in 2016, but my out of pocket for copays will be less. If anyone hasn't signed up for Affordable insurance and need help, I am willing to help you through it. It can be complicated at times and sometimes the hold time to speak with a rep can be very long. Again I am sorry to not check in more often. I am going to read through the other postings and answer what I can. I hope there are no misspellings or anything as I am not proofing.
autumm
Hi Brenda. How lovely to have news of you. I am so pleased your operation was successful and that you have less pain and I do so hope that you can get off the steriods. It is good news that the new Health Insurance is working for you and you are finding it a help to you, I am sure this is what it was designed to do. Take care of yourself Brenda and continue to make progress. Best wishes. Autumm
nanny1611
It's always good to hear from you, Brenda. Whenever I think of you, I pray for you, because you were having such major difficulties. So glad to read that your surgery helped your pain and CPKs. Maybe you have now "turned the corner" and are finally headed toward recovery. I think I'll start praying about your glucose levels, because the Lord is able to lower those numbers as well. Thank you for updating us. Blessings and best wishes to you.
trpt1
Hi Brenda, It is great to hear from you. I am so glad things are improving well with your health. I know it is one day at a time for all of us. I will also pray that The Lord opens the door for excellent care, diabetes control, and affordable, accessible meds & procedures. There is never a dull moment! Keep us posted.
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