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 am on my second week of Acthar injections. The shots are similar to my insulin injections so I have no problem as long as I remember to take them. The bottle is so small and I have to use one needle to withdraw the hormone/liquid and then attach a smaller needle to give myself the shot.
It is amazing how much it costs, but as long as my health insurance is paying and I only have a $60 copay, which in my world is alot, I plan to continue the treatment with the hope that it helps.
I am still confused, as often I am to exactly what it is supposed to do. The literature states that it is repalcement for Prednisone, but right now I am increasing my Prednisone. My rheumatologist has been speaking about me starting another treatment along with the Acthar, but I don't think that I am going with it as it is an RA drug and it has severe possible side affects.
I am noticing my pain is increasing even though I am on 30 mgs of Opana ER every 12 hours with 10mgs every few hours as I need them. Some days I can't remember if I have taken my pain medication since my pain is increasing and my fingers are numb. I think that my body adjusts to the amount of Opana that I am taking and after awhile it builds up a resistance. I don't want to go to a higher dosage but I also do not want to have to tolerate more pain. I will see.
I am going to eat me a bowl of Strawberry and Vanilla Blue Bell ice cream and read for a little while longer before going to sleep. I was sleepy earlier, but decided to bake instead. This time I am going to give in. Thank you my friends. I need and appreciate you all.
It is amazing how much it costs, but as long as my health insurance is paying and I only have a $60 copay, which in my world is alot, I plan to continue the treatment with the hope that it helps.
I am still confused, as often I am to exactly what it is supposed to do. The literature states that it is repalcement for Prednisone, but right now I am increasing my Prednisone. My rheumatologist has been speaking about me starting another treatment along with the Acthar, but I don't think that I am going with it as it is an RA drug and it has severe possible side affects.
I am noticing my pain is increasing even though I am on 30 mgs of Opana ER every 12 hours with 10mgs every few hours as I need them. Some days I can't remember if I have taken my pain medication since my pain is increasing and my fingers are numb. I think that my body adjusts to the amount of Opana that I am taking and after awhile it builds up a resistance. I don't want to go to a higher dosage but I also do not want to have to tolerate more pain. I will see.
I am going to eat me a bowl of Strawberry and Vanilla Blue Bell ice cream and read for a little while longer before going to sleep. I was sleepy earlier, but decided to bake instead. This time I am going to give in. Thank you my friends. I need and appreciate you all.
I have a check off list that I mark immediately after taking a medication. I do not wait around to check off my list. I write the time, dosage, and med name under the date. My brain has bad short-term memory problems too. My system has helped to avoid overdoses or forgetting to take a med.
My favorite Blue Bell ice cream is Southern Blackberry Cobbler. It is in the purple container. The Praline and Cream ice cream is also dreamy. You can not go wrong with any flavor of wonderful Blue Bell! I wish I was there to enjoy the Strawberry and Vanilla with you. It is so hot in Texas, that I need to eat ice cream quicker so it does not melt.
It is good to get your mind off this disease if possible (HA! I know its hard.) I am not a cook. I admire anyone who can bake. My hobbies are practicing my trumpet, and feeding the birds & squirrels at my home. I have been doing some oil and watercolor painting too. I paint farm animals, barns and landscapes. I also love watching college football. These things help to divert my attention from DM.
Thank you for the update. I will pray for pain management for you. Keep us posted.