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.
My husband was diagnosed in July of 2013. He is 44 years old. At frist the doctors could not figure out why he was so sore and why he was losing so much weight. Then the rash came. And he is dark complected so it was hard to see at first. Then it got purple. I suggested they do an autoimmune pannel to check for maybe Fibromyalga! After the results came back, he was sent to the ER with his CK almost at 7000 and adolase at 67%. We did a thigh muscle biopsy to confirm he has DM. Over the last months, he has been resistant to most medications even Prednisone at 60mg and Imuran at 150mg(will be 200mg soon) but once he started the IVIG, the numbers were going down and he was feeling better. Now, his CK level has bottomed out and his adolase keeps rising, now at 20%, when it was down to 8% and he is feeling bad again. ANd this was right after a 4 day blast of IVIG. He did another MRI on Friday to see if the diease is active again, which by the way he feels, it is. SHould we try a different drug "cocktail" to get him to feel better? What else can we do?? He is unable to work because he has a phyiscal job outside and he is not a homebody. We were so close to getting him in remission and starting physical therapy!! Sucks! Thank you for letting me vent and God Bless all who have to fight their own body everyday, I pray everyday that you find comfort!!
I hope the second Biopsy is really needed. At 6 months most are still on more steroids.
A plant based diet can address the blood glucose in most cases. I was able to get my A1C level down to low by going vegan plant based. Dr. Joel Fuhrman has a great book the End of Diabetes. It has worked well for me and gave me some control in this disease with very little control.
Sending you patience and strength.
Have you found TMA at myositis.org??
Might consider going to the Myositis Confernce in Reno in September. Iwent when just diagnosed like you aobut 6 or 8 months in and learned so much. I rented a scooter and made it work. They do feed you lunch and dinner at the conference.
All the best to you both... Shawna DM and a nurse
ShawnaN thank you too~ I have started to introduce gluten free and other products into the house to ease them into it. Sometimes they can't even tell it is gluten free! I will work harder to help my family eat better! Yes, I have also signed up for the TMA website and our local MDA office. They have given us alot of advice! I wish I had the money and time to travel to an event! Since my hubby lost his job due to the illness, I am barley able to make the house payment let alone travel!! He is on disability but the money we get from them goes right to our Cobra insurance. I can't change the Cobra insurance right now either becasue they have approved and have authorizations for his IVIG. I can't take a chance on moving to a different ins company that may not approve his treatments! THey are very expensive! Plus I still have kids in elementary school that I have to taxi everywhere. Especially when my hubby does not have the energy to help. I AM SO STUCK... feels like quicksand! They are thinking of putting him on insulin to control the sugars for now, they said he is showig protein, keotones, and blood in his urine which is the first signs of diabetic damage to his kidneys. The sugars are back up too because they increased the seroids again. They were getting better on the lower dosage. He is been on his meds for almost 9 months and is been resitant to most therapys. THe IVIG is the only thing that really makes him feel better, the steriods only make everything else worse. I really hope this 2nd biopsy is worth it too, she wants to make sure its the disease causing the inflmation and not the steriods... there is a steriods induced myostits?? WHo knows, we just do as we are told! Sorry for the length of my note-- feels good to let it out though!
I used Lotsahelping hands to get help with driving the kids and meals when i was really weak. IT may be helpful to use a site like that to keep everyone informed on how your family is doing and what help you need. Even a neighbor to mow the lawn can help out so much...
Sending you strength and patience. Nothing with this disease moves very fast. i wish you all the best, and keep asking questions here and know we will give you support...
Shawna