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.

317 Members

2,891 Posts

0 Online

joyforalifetime 03/26/2012

hi friends :)
the real reason i'm writing is to let you know that tomorrow i'm getting my feeding tube out!! i've had it for almost 5 months and haven't used it at all for a few weeks! i'm swallowing pills well, and eating normally. though this has been the hardest thing i've dealt with, i am SO thankful to have the opportunity to be more thankful for for something i could so easily take for granted. praising the Lord for His healing! :) i won't be sedated at all so i'm kinda nervous, but the excitement is outweighing all that haha

also a quick question for my DM friends. about 3 weeks ago i decreased from 40ml liquid prednisone to 15mg pills. my body seemed to adjust really well, i hardly noticed. now i don't know if my "rash" was typical DM, so i'll describe it a little. dry and cracking hands and feet, dry elbows and knees, red rash spots on legs (shin area). that's what it was before and everything totally cleared up when i was in the hospital and i saw no signs of it again until my recent decrease. it's very minimal, but there's a little dry skin on my hands like there used to be, and my feet too-with one crack on my left foot. i don't know if it was too big of a decrease or what, but i just don't want it to get worse and really don't want to up my meds again! has anyone experienced this? do you think it's just an adjustment period or will it keep getting worse?

thank you!!! :)

nanny1611 03/26/2012

Congratulations on getting your feeding tube removed! What a victory for you! Yes, the Lord is good. Please let us know how the procedure goes.

As for the rash, I have PM with overlapping DM and Lupus. I've only dealt with rash problems once (for about a year). But because my skin is so dry now, I keep it moisturized with coconut oil. I wish I could give you more info, but being primarily PM, I don't have much experience that way. I'm sure there are others who will comment and help you. Best wishes.

pluggingon 03/26/2012

Have dealt with dry skin and dry eyes for years. Can't say that it was better with or with our corticosteroids. Sometimes there's considerable itching associated with it. Lotions, creams, and prescription ointments like Betamethazone are what I use when and where needed.

So glad your feeding tube is coming out! Yes, we take a lot of things for granted--until they fail. But God is there with us during our trials. I'm so thankful to Him for your improvement!

trpt1 03/26/2012

WOW! You will feel like a new person without the feeding tube. I wish you well on your progress without the tube. I have the dry cracked skin on my hands and elbows. My hands are also red. I can tell you that for me, my skin gets more red and cracked as I taper down. I also notice my veins are big and parts of my hands show a purple color. I use two Mary Kay moisturizers on my hands that works well. One is called extra emollient night cream and the other is Time Wise moisturizer. Both moisturizers are actually for the face, but a good moisturizer can be used on any part of the body if it works well. I think Mary Kay makes terrific moisturizers that are affordable and work well. www.marykay.com
I know these moisturizers do a great job on my hands & face. Avoid buying any moisturizer that has the ingredient mineral oil because mineral oil is a drying agent that will make your skin more dry. I hope this helps.

deleted_user 03/26/2012

I am so happy for you! I hope your procedure goes smoothly.

I'm sorry I have nothing to offer about the dry skin and prednisone.

joyforalifetime 03/27/2012

thanks for the responses!!!
the tube has been out for a couple hours :) it went perfectly fine. hurt pretty bad getting it popped out..not something i ever want to experience again! but pain subsided very quickly and my dad took me out to lunch! sooo so happy!!

just left a message with my rheumy about the recurring skin issues. i'll keep you posted after he calls back. really praying i don't have to go back up at all, but definitely not a fan of these symptoms coming back!

thanks again :) celebration day!!

deleted_user 03/27/2012

I'm glad the procedure is behind you and you were able to enjoy lunch with your Dad. I truly hope you don't have to up the prednisone. That is a roller coaster I have been on for about a year now. I just can't seem to stay off of it.

deleted_user 03/27/2012

That is such great news about your feeding tube, congratulations. As far as the symptoms and decreasing prednisone go, that is how it went for me. Each time I decreased it seemed like everything was coming back, then it kind of balanced out again after a week or so. It made me especially nervous because I did NOT want to go back to what it was like before I got treatment. An I did not want to stay on prednisone either. I think the plaquenil is really what seems to be helping my DM rash mostly (I take that and methotrexate). I am off prednisone completely for almost a month now and I am holding my own. On Thursday I am getting my adrenals checked to see if my body is producing enough of it's on type of prednisone, and my endocrinologist thinks it will be low. I do still have inflammation but it goes up an down and is not as bad as it was in the beginning. I also like Sarna cream, Aquafor cream and coconut oil for my DM skin problems. Good luck to you
Maruska

joyforalifetime 03/28/2012

thank you!!
doc's office just called and he wants me to go from 15mg to 20mg, and to come in today for bloodwork to see what's going on.

not too discouraged. i wondered if it was too big of a leap when we went to 15, and my symptoms aren't bad now at all. maruska, i had similar decreasing experiences before but this time it didn't balance out after a week or so. and so begins the playing with meds to see what works best...sigh.

aquafor has helped me too, and i want to get some coconut oil..i've heard from several people that's for DM skin issues.

Join the Conversation