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Pulmonary Sarcoidosis: How are you dealing with it?
Lung Health | Last Active: Dec 5 12:30pm | Replies (127)Comment receiving replies
Hi ...I was diagnosed with sarcoid in 2004 and had to have a heart transplant in 2017 due to sarcoid induced cardiomyopathy. After the removal of my heart, the docs could see the granuloma in my ventricles. The sarcoid started in my eye - with an iritis- and then went to my heart - I needed a pacemaker (we didn't put one and one together yet) - and then to my lungs. I started on prednisone and methotrexate - a powerful but effective combination for me - was taken off of the methotrexate as it interfered with one of my anti-arrhythmia drugs. I was on 45 mgs of prednisone a day for over a year and tapered off very slowly the second year. I then went on azathioprine to manage the sarcoid. I was off of all meds in 2016 when I went to Mayo for consultation for my heart. My EF ratio was 18 at the time. I went on IV meds, was placed on the list and received my heart shortly after that. My heart transplant doctor placed me back on prednisone - 5 mg - post transplant, which I still take. My transplant was two years. He is still concerned about recurring sarcoid. I too have asthma @rosemarya and I'm sure the prednisone helps with that. One item my pulmonologist always checks is my ACE level - blood test. Apparently, one third of all sarcoid patients have elevated levels when sarcoid is active. It soothes my soul when I see the level come back normal. Just a thought. I wish you well. @sarcoidosis
Replies to "Hi ...I was diagnosed with sarcoid in 2004 and had to have a heart transplant in..."
@estrada53, Thank you for your kindly wishing me well. I am sorry for the delay. I am doing well. I do not have sarcoidosis, and I was taking Prednisone since my liver/kidney transplant since my transplant in 2009. It is my understanding that the prednisone helps a kidney long term, and since I had a simultaneous (both at same time, same surgery) transplant, that I was eligible to taper off the prednisone. I still take my other immunosuppressants. My asthma has been diagnosed as being exercise induced. Pulmimologist and cardiologist were part of the diagnosis. The high allergy conditions, humidity and increased activity are the culprits of this. They think that the low dose prednisone had been masking it since my transplant. It is interesting that I have always had a struggle to catch my breath and keep up for as long as I can remember, but just assumed it was due to not being in shape to hike. Happy ending is that my pulmonologist has been able to prescribe and help me to control it and now I need only allergy meds, and inhaler as needed. The only problem that I once
experienced has been a case of throat thrush (painful) after a trip and hiking at higher elevations in Rockies.
I hope that you are also doing well. I don't know if I have ever had an ACE level test, so I guess I don't need it. How often does your pulmonologist check it?
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Hello, soooo, sorry to hear about your very unfortunate plight with Sarcoid. But Im so glad I decided to visit this page today. I also am having a horrible time with this Sarcoid, I was dx. back in 08, and I been living a nightmare ever since!! It all started in my Lungs, then it quickly spread to my other vital organs. When I dx. w/ Cardiac Sarcoid, I was floored. To make a long sad story short, I am have Cardiomyopathy, Systolic Heart Failure, my Heart is only working at 24%, and I was recently told I would need a Heart Transplant. I had to have a CRT-D implant, b/c my heart is either beating Way to slow or WAY too fast. I also have a LBBB, which is also a issue.
I now take 7 medications one of which is Prednisone, which as caused me to blow up like a balloon. I feel like a pin cushion b/c I'm always going to have blood work and I my veins collapse during withdrawal, which means I have like 4 pin holes. ( ouch). I'm now very depressed, b/c, I can't walk around much, I'm extremely tired, & I can't drive, work, or do much of anything!! So needless to say I feel like I'm just a big waste of human flesh. I used to be a very active woman, I live in the mountains, b/c I love hiking, camping, & the country living. How do you feel now after your transplant?? Were you on a Transplant list? Were you able to resume most of your day to day chores? I would appreciate any info you could give me. Im a new grandma, to a beautiful granddaughter, and I would love to be around to watch her grow up.