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 think I have hit the denial stage.
Does anyone ever get off of MTX? and does your eyesight seem to change daily? Glasses on glasses not needed. (or is that just part of being in my 40's?) Do your gums and tongue sting if you forget your folic acid?
I have DM, Fibromyalgia, Reynauds and Chillblaine's phenomena. In the winter I take procardia for the last two.
I take MTX, folic acid, and Plaquenil for almost a year now. My rash and The swelling are mostly under control. The tendons in my hands are hardening and that is painful. Pain management doesn't seem to be part of the protocol. My Rheumy says that if we keep the swelling down the pain will go down...
I miss having a beer on Wednesday nights or a glass of wine with friends.
I miss the warm feeling of sunshine one my skin and gardening. I do use Wide brimmed hats, long sleeves, long pants and gloves. I have to be so careful with Sunscreen it burns my eyes when I sweat.
This is still a new ball game. the good news is that I have insurance again. Now I can get those cancer screenings that my Rheumy and Dermy want.
Thank you to all who reply.
Does anyone ever get off of MTX? and does your eyesight seem to change daily? Glasses on glasses not needed. (or is that just part of being in my 40's?) Do your gums and tongue sting if you forget your folic acid?
I have DM, Fibromyalgia, Reynauds and Chillblaine's phenomena. In the winter I take procardia for the last two.
I take MTX, folic acid, and Plaquenil for almost a year now. My rash and The swelling are mostly under control. The tendons in my hands are hardening and that is painful. Pain management doesn't seem to be part of the protocol. My Rheumy says that if we keep the swelling down the pain will go down...
I miss having a beer on Wednesday nights or a glass of wine with friends.
I miss the warm feeling of sunshine one my skin and gardening. I do use Wide brimmed hats, long sleeves, long pants and gloves. I have to be so careful with Sunscreen it burns my eyes when I sweat.
This is still a new ball game. the good news is that I have insurance again. Now I can get those cancer screenings that my Rheumy and Dermy want.
Thank you to all who reply.
Great that the insurance is back and you are getting the screening! Think positive and these are just so that you have baseline to work from and no cancers present!
I don't take MTX but do take azanthiaprine and hydroxychloroquine, so plaquenil and one other drug as well as prednisone which I am tapering off of. My understanding is that I will be on the other two drugs for the next year and a half, so three years in total and then we will see how my body reacts to not being on them.That'sthe answer I got when I asked the rheumy how long I will have to take them. Here's hoping the immune system will kick in and start doing its job!
I enjoy the sun from the shade and do miss sitting on the beach BUT the option is having full sun on the dirt of my grave so I'm sticking to the shade! Blunt but true. in the winter I am like the cat who likes to lay in the sunshine coming through the window!
I still have the occasional alcoholic beverage. I read up on all my meds and the occasional drink was ok. My blood work shows that my liver enzymes are fine and things are ok, so far it hasn't hurt.
Keeping you in my prayers that your investigations go well and the pain subsides!
Roxanna
Thank you for your reply. I thought I was crazy about the glasses. Today I can't read without them.
Last time I was to the doctor I got the distinct feeling that my Rheumy is not 100% on board with my Derma's diagnosis. He is a bit vague when I ask about pain control for at night so I can get that good night's sleep that he tells me is so important to staying healthy.
I am responding well to the meds and I was able to wean off the Prednisone in March One year on high dose Prednisone is enough of an emotional roller coaster for a lifetime. It took three tries. Every time I hit 20 mg flare... so if you get to a lower does and start to flare don't get discouraged.
Thank you again for your reply!
Sarah