I was diagnosed with non specific interstitial pneumonitis secondary to polymyositis last year. Big fancy words for polymyositis with lung disease. My first symptoms were swollen knees with lots of pain. Within a week the joint pain spread through every joint. I had been to hospital 3 times with 6 weeks and my GP as well as clinics. No one knew what was wrong and just kept prescribing meds. I went for a pulmonary function test and was admitted to the hospital right away, then transferred to a different hospital. I was in a month. They couldn't figure out what was wrong. Finally they figured it out and I was put on tons of meds including prednisone and cyclophosphomide (chemo). Needless to say I'm still struggling. Unable to work, I can excersise but only about ten minutes. I've had one flare in the year and have recently been told I'm in remission. I'm glad I'm in remission but it's certainly not what I thought. I thought I would feel a lot better. Remaining positive has been very important. I may have the disease, but the disease doesn't have me.
Yes I know exactly where you are coming from I have had this since 2005.GOD and the IVIG I take monthly is what keeps me walking . I am very depressed at this time I take cymbalta twice a day but I dont think its working. But alot of it could be me , I have family ( THE BEST MOTHER ) but I live alone 20 or so miles away. I wish you the best and may GOD BLESS YOU
Hi Testkit.I was told that with polymyositis and lung involvement that the poly is suppose to be 95% of the problem and the lungs 5%. Mine is the opposite, my lungs are 95% of my problem. I hope you have a good doctor. That makes all the difference in the world. I'm never going to be the way I was, but at least I am alive. Good luck with your biopsy, I hope it's not poly. It's not a nice disease to have and because it is a rare one, I think it's mostly trial and error.
Hi and I sure hope it's not Poly either, but I should know on the 16th. I hope that all that read this will consider a couple of things.
I found out that the Ibuprofen that I was taking from Costco, has a dye in it, that might be contributing to this. Of course I stopped taking it. It's the Thyroid medicine, Lexothyroine that also has the same thing in it. I stopped taking it during the period that the doctors were trying to figure out what was wrong with me. Needless to say I thought I better not, that maybe it would make my symptoms were. So after a few days I tried one pill and the next day my lungs felt heavier. I tried this three times. Because of what I found out, all three doctors kept me on my recommended 1/2 dose. Well here's the weird part. Last Monday I had to do blood work for the biopsy. I also did another test for my thyroid and Vitamin D levels. The test results revealed that I am clearly in normal range if not better than normal range. How or why I don't know. My Vitamin D levels are also up. I'm taking 7000 ml a day. However, since I just found out about the dye thing. I have to wait till Tuesday to have my primary send in the script for the one that doesn't have the dye. Sorry the name is Armour?, but I can't remember it now. I have changed my diet to be more alkaline and will also ask my primary about the test to see if I have the disease that causes us not to process Gluten products. Celiac Disease. We all need to work together, since I can't help that it's part of what we are doing to ourselves, or at least hope so.