Pulmonary Sarcoidosis: How are you dealing with it?

Posted by bboxer @bboxer, Dec 25, 2016

I’m very interested in creating a discussion group with other patients being treated for pulmonary sarcoidosis and how they’re dealing with it. I was diagnosed ~ 10 yrs ago and it is unfortunately gradually getting progressively worse spreading from my lungs to other parts of my body. I’m mainly interested in what others have received for a prognosis and most of all how they handle the, at times, somewhat debilitating pain (primarily rib cage) that goes along with it.

Hello, S. My case is not comparable to yours, however for what it is worth, I take prednisone (I’m sure you are aware) when it flares up. I also take probiotics, turmeric and bromelian. Not sure if they really help but supposedly aid with digestion and inflammation. I have been on them a year or so and can’t really say for sure that they help but I’m still very active and am not getting any worse. Good luck to you. Rod

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Hi, I was diagnosed about 20 years ago. Fortunately, mine has stayed in the lungs. I really struggled a lot dealing with different issues. The pain in my chest never seemed to let up. I came accross an article on castor oil packs. It charged my life. It took away all the pain and I was able to take deep breaths for the first time in a long time. I did it for three nights in a roll. I feel like it got rid of all the old stuff hanging on to scare tissue. I had lots of foot pain also and it helped with that. Good luck.

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@sarcoidosis

Hello and thank you for moving me to this group.
I have sarcoidosis of liver, spleen, skin, lung and bones…spine and hip.
I would love to know what medication has helped you.
Thank you

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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

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@estrada53

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

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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.

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@riverotter

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.

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Hello, @riverotter. It seems we are traveling a similar road. I am a grandma as well and love being with my grandchildren. They live farther away so I can't see them all the time. Prednisone made me gain sooooo much weight and of course if affects your appetite and, believe me, I indulged… too much. So I lost my weight when I went off the drug. Now I'm still on 5 mg and you can see the chubbiness in my face, but nothing like the earlier dosage. I also had trouble giving blood. I tried to use some weights prior to a blood draw and drink plenty of water, but a baby needle was always used for me. There was a wonderful phlebotomist who I would ask for and she knew exactly what to do. I was not shy in talking with those who drew my blood. Some folks get uppity if you tell them what to use. I would just be polite and tell them I had done this soooo many times. I figured it out. I never felt really depressed. I continued to work as a principal at my school in Chicago for four years and then had to retire. Moving to Arizona was great for me; I was volunteering at a local school and soon I was led to Mayo in Phoenix after I needed to be cardio-verted due to an atrial flutter (thyroid craziness). I was originally seen as a heart failure patient and with additional tests – the oxygen exchange test – it became clear that my heart was only providing only 30% of the needed oxygen to my muscle groups. The doctor immediately wrote me up as a potential transplant patient. The next month I needed IV meds in addition to the heart meds I was taking. I was placed on the list and three weeks later I was called for a transplant. That was my trial run, because the Mayo doctors decided that the heart was too sluggish for me. I had been prepped for surgery, woke up in ICU and had no new heart. While the heart had passed all the medical tests, it was deemed "too sluggish" by the surgeon. The doctors at Mayo know their patients very well and knew this heart would not be a perfect fit for me. A month later I received my new heart – a real Ferrari engine. This heart is amazing. I have always hated housecleaning, so you ask about day to day chores……I am now taking classes at the university, traveling to see family, etc. It's an ongoing relationship with my body. My pulmonary function tests had been as low as 62% and are now up to 88% so I know my heart is doing the right thing. My heart seems to be very young, but my husband reminds me that the rest of me is old! If I get tired, I rest. Sometimes I run myself ragged. I loved hiking too and with my bad hip, that might be too much for me. Sorry this is so long and I hope I have encouraged you in sone way. Take care of your body now as much as you can. I know it's difficult. Feel positive and feel joy. It makes a difference. And I'd be happy to answer any other questions or expound on these!!! 🙂

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@estrada53

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

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@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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@riverotter

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.

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@riverotter, I am just now seeing and reading your post. Thank you for reaching out in this discussion with your questions.
I see that @estrada53 has already responded with some expert knowledge from her own experience. I received my liver and kidney transplant at Mayo Rochester in 2009. I also love the outdoors and hiking. And I have a beautiful granddaughter to love and who blesses my life with her hugs.
How are you doing? Are you being considered for a transplant?

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@taurus13

New to this page. Have sarcoid. Any info. on caring for this. Female – cough – shortness of breath. Go to MAYO, but have not been seen for this.

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I have had sarcoidosis for over 20 years. The first 5 or so was very. I went to work and bed. And sometimes slept at my desk. I've been exercising for 5 years, try to eat healthy. I have good days and bad. I do go to Mayo and very happy I do. They take time for you and are very knowledgeable. My test are shown to me and explained. Thank goodness mine has never left my lungs. It is something that you have to learn to deal with. Good luck.

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New to this page. Have sarcoid. Any info. on caring for this. Female – cough – shortness of breath. Go to MAYO, but have not been seen for this.

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Hi @taurus13 and welcome to Connect. You may have noticed I moved your post to this existing discussion on Sarcoidosis so that you can read what others have said about living with this condition. Simply click VIEW AND REPLY in your email notification in order find your post.

I wanted to introduce you to @martindale, @sarcoidosis, @rod0852 and @riverotter as they have experience with Sarcoidosis and may be able to offer you support.

Back to you @taurus13, how long ago were you diagnosed? Can you share more about your symptoms?

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@riverotter

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.

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Don't give up. You'll have ups and downs. Take advantage of your ups, read all you can and try to promote healthy things little by little. I tend to want to give up when it flairs up. But you can't. Start slow and try to move ahead a little everyday. Take care.

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@taurus13

New to this page. Have sarcoid. Any info. on caring for this. Female – cough – shortness of breath. Go to MAYO, but have not been seen for this.

Jump to this post

I use to cough so much, my vocal cords were filled with sores. They wanted to scrape them. After reading about it, I wouldn't let them. I told them I'd teach myself not to cough. I carried water everywhere. I used castor oil packs on my chest. This cleared up the pain and congestion in my chest. I still cough some put not near as much. The shortness of breath is bad on some days. I try to slow down and will stop until I catch my breath. I deal with it because I don't like taking medication. I do take turmeric and it does help. When I stay on a anti inflammatory diet this helps the most. I have oxygen when I do cardio. I was on prednisone for the first 7 years. I hated it. I take a nasal spray for allergies. I am incharge of my health and I must do everything I can to promote it. I fail a lot, but keep on trying. Good luck.

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