That sounds like my experience. Some days are better than others and I do have more better days then bad. I would definitely be honest with your doctor about how you are feeling. If they haven't heard of JO1 and aggressively helping you monitor your lungs, they are not the right doctor. You might want to see a Pulmonologist for your lungs but I would ask your doctor who is right to keep an eye on your lungs.

Good luck Tuesday! Let us know how it goes and what you learn.

I am JO-1 positive. The first 5 years after i was diagnosed iwas doing once a year a CT scan of my lunges, and a Lung function tests .
Now after 7 years i am doing once a year a Lung function tests.
Stay Well
Michael

Hi Imbecky. A good Rheumatologist will know that having Anti Jo means you have Myositis. In London the Rheumatologist works in a team which includes a Lung Specialist. I saw the lung specialist at diagnosis and for two years after that. I now have lung function tests every year. There is a full work up that goes with this diagnosis, a good doctor will know this. There are drugs that are not right for Anti Jo and a hood doctor will know this also. A Rheumatologist here treats PM/DM and a Neurologist treats IBM. It is so important fir you to get the right treatment quickly. Take all your information from here and ask all the questions, if the answers are not right please, please find the right doctor. We wish you all the very best and look forward to hearing how you get on. Autumm

Hi imbecky, If you have Jo-1, then it is a marker for myositis. Truthfully, ALL of us must watch our lungs with DM/PM not just the Jo-1 antibody. The lungs are as delicate as the eye and they filter oxygen and CO2 from the blood. Other filtering systems (that are equally effected) are liver and kidneys. DM/PM is a systemic disease which means it effects the entire body not just an individual organ.

In DM/PM, other autoantibodies appear as the disease progresses forward. The doctor can usually tell where you are in the disease process from your blood work. Your mission is to know how to read your blood work. The complete metabolic panel gives liver and kidney scores. If the liver/kidneys are doing well then that is a good sign.

During your visit to the doctor, you might ask about how to read your blood work. I like to sit at the computer and look up my scores. I also look up the meaning of things like "bilirubin" which is one of several liver scores.

The neurologist deals with DM/PM brain and muscle issues and is very important. The rheumatologist does the main handling of DM/PM related issues in the USA. A neurologist is not the one who handles the lungs. The neuro will know what effects lung problems have on the brain. Your doctor will probably refer you to a rheumatologist. My rheumy checked blood work and did some lung x-rays. I had a full body CT scan in my first year with DM which checked every organ.

I did have an enlarged right side of the heart at the beginning of my disease that was found on the simple x-rays. I saw a pulmonologist and a cardiologist. I have pulmonary hypertension, but my enlarged right side of the heart returned to normal size over several months. I am now in my fourth year with DM and no problems with heart/lung at this point. Do keep in mind that heart and lung go together and operate in-sync.

Do not be afraid of any test results at this point. The medications will kick-in and help scores look much better.

I hope this helps.