Dear Mary, you are certainly going through a health crisis. There are many here who offer help and support to you. I have only just been diagnosed too and feel like I am on a rollercoaster - up 1 day and down the next . I hope you have a good doctor or other medical support as well.
Many people seem to have autoimmune conditions as well as myositis - i have hasimotos thyroid, possible SS, degenerative changes in bone, lesions in brain, fibromyalgia, restless legs and intolerance to wheat and dairy. All of these tell me my body is falling apart and attacking itself in many ways.
Polymyosiis is not a death sentence but I know what you mean (somedays). I am just trying to learn more about it and also trying to cope with the pain. Good Luck

Yup, you sound like you have autoimmune overload syndrome!! Unfortunately, all too common in our community.
Agree w/freelee, not a death sentence but extremely aggrivating! Expecially since most of the time you're too weak to throw something (ha,ha)...I hope you at least smiled.

Have you had any breathing tests?? I've had PM for 25 years and it always started with "pneumonia"..now I have interstitial lung disease (autoimmune lung scaring). They can easily treat it if you catch it early but there is no going back.

Will keep you in my prayers....

thank you for your replies, it is really so helpful. Can I ask Zzz1 what is autoimmune overload syndrome? I does sound logical that that explains me. I have crossovers of every disease. I noticed also yours always started with pneumonia. Was it a typical pneumonia, or different? I know the doctor said the pneumonia is gone now, but I am still having shortness of breath, and notice it still hurts to take a deep breath on both sides. Why does it cause scarring in the lungs? Does it typically affect any other organs? I am having alot of problems with my skin, specifically on my hands and feet and severe cracking. could this be related? What is the typical treatment for this? I am on 3000mg cellcept and 10 pred, 400 plaguenil, others for pain and depression too, but these are the disease modifying ones I am on. I am also on iron infusions, I have developed severe anemia , and severe fatigue , I find I have such a hard time staying awake if I slow down.
thanks ,
thank you so much,
Many Hugs Mary

Dear Mary,

I'm going through a bad spell myself and can't seem to come up with anything good to say, so I will just say this - You are not alone and I'm glad you found this group! I'm so sorry you are going through this - but make sure you find yourself a good doctor first and foremost. I hope you feel better soon.

Jennie

Mary... autoimmune overload syndrome (or AOS) as I like to call it is a name that I MADE UP (just so we're clear) to describe the way I feel sometimes. I've got 4 autoimmune disease and at least 5-7 other things wrong w/me, some caused by autoimmune diseases...so when I get frustrated I say I'm have an AOS moment. It's only real in the sense that we all fee overwhelmed...maybe I sould look into getting that on the CDC web-site. Ha-Ha.

1st off, if you are having trouble with your skin..you may have DM (not PM) IF it's a rash (really DM is just PM with skin rashes).
If it's cracking only, it's probably Mechanic's hands (and could be related to your Sjorgen's Syndrome--VERY common).

Yeah, mine started with a "regular pneumonia". Pneumonia itself can cause lung scaring but in my case it was probably the PM (just didn't realize it at the time, it was afterall the late 1980's). Just as your immune system attacks muscles, it can attack lungs; this is fairly common in PM/DM especially if you are Anti-Jo1 positive (which I am). I have permenant rales in my lungs, it's a very specific raspy sound often called velcro rales. I have Non-specific interstitial pneumonitis (or fibrotic lung disease). Immune system attacks the outer lining of the lung, causing inflamation and scaring on the outer wall of the lung. Inhalers don't work 'cuz it's not the lung that is causing the disease it's the immune system. You need prednisone and I'm also on Cellcept.

You can also get shortness of breath (SOB) from respiratory weakness. I've had that for years too. My back and sides have always bothered me..had to learn to sleep on my back because I couldn't breathe any other way.

So...you should probably make SURE that it's not lung scaring..it's a simple breathing test that a pulmonologist can perform in like 30min. Don't rely solely on the Anti-Jo1 genetic marker 'cuz it's not positive in everyone w/ILD but if it is you know what to look out for.

Sorry this is so long and probably confusion. I'm trying to paraphrase my understanding.