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.
In April I had a CT results showed "Mosaic perfusion pattern, small vessel disease, bibasilar subsegmental atelectasis scaring". Rheumatologist had me go for pulmonary breathing test yesterday. He called me up last night saying the pulmonologist said the tests were inconclusive and abnormal. There was an appointment available today due to a cancellation so I went in.
Pulmonologist was really good I like him. He inform me some very important things. Such as Metamucil is made with a plant that is from one of the highliest allergic plants there is, with my major allergies I should not be on that! Vicks on or in the nose can cause a specific pneumonia when you get older. Sigular after prolonged use can cause polyps in the nose.
He says yesterday's breathing test is inconclusive because I was not breathing out hard enough. I had to take my mouth off of the mouthpiece and Catch My Breath because I was breathing so hard!!!
He also does not agree with the reading from the radiologist on the CT which I quoted above. He sees the dark spots which he does not think is mosaic. he thinks it's that air is staying in because I'm not breathing right simply thinks I need to remind myself to breathe.
He is having another pulmonary breathing test done, artery blood gas, 6 minute oxygen walk and echocardiogram plus doing a sleep study. I think he is going to test for a lot of things hopefully if there is something he will find it!!
I am just hesitant about how much he may know should I say not know about myositis. After all of our discussion which was over an hour one of my last questions is if he thought my breathing issues and test results could be from the myositis affecting the muscles around my lungs. He actually said the myositis doesn't affect the muscles around the lungs. He did stress his concern for the medications that can mess up the lungs. I do a lot of reading and that is not what I am comprehending from my reading.
So at this point I am a bit confused and just wondering what other myositis patients have lung problems and what kind?
Pulmonologist was really good I like him. He inform me some very important things. Such as Metamucil is made with a plant that is from one of the highliest allergic plants there is, with my major allergies I should not be on that! Vicks on or in the nose can cause a specific pneumonia when you get older. Sigular after prolonged use can cause polyps in the nose.
He says yesterday's breathing test is inconclusive because I was not breathing out hard enough. I had to take my mouth off of the mouthpiece and Catch My Breath because I was breathing so hard!!!
He also does not agree with the reading from the radiologist on the CT which I quoted above. He sees the dark spots which he does not think is mosaic. he thinks it's that air is staying in because I'm not breathing right simply thinks I need to remind myself to breathe.
He is having another pulmonary breathing test done, artery blood gas, 6 minute oxygen walk and echocardiogram plus doing a sleep study. I think he is going to test for a lot of things hopefully if there is something he will find it!!
I am just hesitant about how much he may know should I say not know about myositis. After all of our discussion which was over an hour one of my last questions is if he thought my breathing issues and test results could be from the myositis affecting the muscles around my lungs. He actually said the myositis doesn't affect the muscles around the lungs. He did stress his concern for the medications that can mess up the lungs. I do a lot of reading and that is not what I am comprehending from my reading.
So at this point I am a bit confused and just wondering what other myositis patients have lung problems and what kind?
It is not uncommon at the beginning of DM/PM to have some type of lung stuff appearing. I had an enlarged heart & lungs (pulmonary hypertension) at the beginning of my DM. My heart went back down to normal size after six months. I also saw a cardiologist. My cardiologist decided that I did not need an expensive lung medication. I totally have my cardiologist make the calls when it comes to my heart/lung issues. I am glad that you are also seeing a cardiologist in addition to the lung doctor.
The big thing we must watch with DM/PM is infections of any kind. I think once you are on the medications for a while, then the lung stuff should subside. Inflammation in the body can contribute to getting an infection too. Lung issues in DM/PM are part of systemic autoimmune disease issues. You will notice Lupus, Scleroderma, RA, and other autoimmune diseases must watch out for lung infections (ILD) too.
DM/PM is a connective tissue disease that is systemic in the body.
I have read a lot on MTX. It appears that MTX is used for some advanced interstitial lung treatment but as an adjunct therapy in addition to other medications. I have read negative things about each DMARD and there are pros & cons on each medication. I think that all of us must watch the long-term use of ANY DMARD. Do read up on each DMARD. We must all watch out for any infections, watch blood work, and consider carefully our medications with our doctors. You will notice our DMARDs have a wide range of use. I look forward to when there are more affordable and better medications available.
I hope this helps. Best Wishes.
Now I still do have all these test to do in July. I pray everything is good like they are saying and I'm just being overly nervous. But why would my breathing just not be right. I'm almost 50 yrs old if I don't breath right it sure seems I would've had major issues long ago.
Lay down on your back with a book on your stomach. Inhale 8 seconds and watch the book rise on your stomach. (If you are breathing correctly, you fill with air & the book rises up. The diaphragm lowers to let air fill the lungs.) Each second should be slow on the eight counts to fill up with air slowly & steady.
Hold your air for eight slow seconds. Exhale slowly for eight seconds letting out all the air. Hold for eight seconds without any air.
Repeat the exercise now with an inhale of 7 seconds, hold 7 seconds, exhale 7 seconds, hold 7. Then go to inhale of 6 seconds, hold 6 seconds, exhale 6 seconds, hold 6 seconds, then continue to 5, 4, 3, 2, 1.
You will notice that correct breathing has the stomach rise since the diaphragm is lowering, allowing the lungs to fill.
Do NOT allow yourself to get too dizzy. Just practice on making the book rise, holding, exhale, & hold. You will feel more energy. I love to use this exercise when I am tired too. I am a professional trumpet player and breathing exercises help my air to get flowing to play & hit those high notes too. I will set my metronome on a slow beat of 60 with a lot of time between each beat to slowly fill with air.
I hope this helps. Best Wishes.