I was diagnosed in 1995 went thru treatment for 2 months, in remission for till 2005 and on prednisone eversince. I 'm on methotrexate and alternating 5-10 mg prednisone each day now am extremely anemic..just when you think it's getting better!!!
I was diagnosed in 1995 went thru treatment for 2 months, in remission for till 2005 and on prednisone eversince. I 'm on methotrexate and alternating 5-10 mg prednisone each day now am extremely anemic..just when you think it's getting better!!!
I hope that you get your anemia problem fixed...you've been quite blessed though to have had 10 years of no problems. Do you get your lungs checked regularly? No one told me to do that until now. I had my lungs checked in 2005 but never went back since all sarc. symptoms left me that same year. Now my heart's right atrium is enlarged and it is probably because my lungs have been working overtime with the sarc. Just thought i'd tell ya...also, just read this about prednisone:
https://www.inspire.com/groups/stop-sarcoidosis/discussion/prednisone-and-p numonia/?msg_activity=reply_posted&page=last&cmnt_id=139096
Best of luck to you!
I know the anemia probably has you wiped out but hopefully easily fixed. I hope you feel better soon!
I had an echo on my heart done 2 yrs. ago and when I asked the doc if sarc put an extra strain on the heart, he said no. I guess this implies that your ability to exert physically limits you prior to straining your heart. Thats my guess.
Thanks, Yeah I get pft's done on a reg basis last one was a real drag my oxygen lev was at 84 when I reached the office and heart rate was 126 for my 4'11 frame pft's were about 70% but by the end of the week I was back to 94 oxygen lev and feelin great! Some days are better than others!!!
Hi dog, I'd ask another doctor for his/her opinion. My cardiologist and also the woman who did my echocardiogram both told me that the lungs have a direct effect on the heart. Here is a quote from the Sarcoidosis and the Heart brochure that's available here:
http://www.stopsarcoidosis.org/ecommerce/products2/cardiacbrochure.htm
"Pulmonary hypertension, which is also known as pulmonary arterial hypertension (or PAH), is continuous high blood vessel pressure of the lungs. Pulmonary arterial hypertension can be a serious complication of fibrosis, or scarring, in the lungs due to sarcoidosis. When scar tissue forms due to sacrcoidoisis, the smal arteries in the lungs narrow and may eventually become blocked. As a result, the heart must work harder to pump blood through them. Over time, the overworked heart muscle becomes weak and loses its ability to pump enough blood to the lungs. Symptoms of pulmonary arterial hypertension include difficulty breathing, fatigue, dizziness, fainting spells, swelling in the ankles or legs, bluish lips and skin, chest pain and palpitations......
Those of us with the sarc need to have our lungs AND heart checked on a regular basis.....i never had issues with my heart, and there is no heart disease in my family. But since I was diagnosed with sarc in 2005, my heart's right atrium has become enlarged...and the right atrium is the side of the heart that pumps to the lungs...there's a huge correlation there especially since i had CT scans in 2005 that showed swollen nodules all throughout my lungs...
Dont ignore your heart. Get the echos of the heart done yearly....and always get different opinions from doctors. My family doctor really showed his ignorance of sarc when he told me that once you go in remission from Sarcoidosis, it never comes back....yes, he really said that. Great doctor but clueless about our disease. We've got to always search for those who know about the sarc!!!!
All the best to you, dog.....(sounds like I'm saying "dawg". wassup, dawg! haha!)
Thanks Hydrangea- just referred to the Merck manual website which refers to cor pulmonale as well. Sounds like something to consider!
Add to the discussion