SARCOIDOSIS

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.

@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?

@suscros68

I was diagnosed with cardiac sarcoidosis in 2016 after Prednisone it is inactive. I think it's flaring up again. Does anyone has this condition, what symptoms do you experience

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@suscros68 HI there. Has anyone responded to you? I kept this message meaning to respond to you, but somehow the days (and months) slipped by. Just wondering if there is a thread of discussion about this.

@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.

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.

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?

@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.

@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 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.

@chesneydell1965

Riverotter
I just read your post, I’m so sorry how this nasty disease has ravaged you.
My husband has both sarcoidosis once DX like you said it spread to his feet and neurosarcoidosis
You spoke of stages of sarcoidosis. Could you explain. Or send a link we have not heard of this yet.
The heart doctor has cleared him said no heart issues. Lung doctor says minor changes nothing to worry about. But he still has this chest pain the keeps him in pain in bed. Any ideas as to what this could be ?
Tammi

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I put castor oil packs on my chest and feet. It relieved me from my pain.

Ai have multisystem sarcoidosis… Must have had it for years. In my spine and bones. In my spleen and liver. I live in Australia.
I will be on an anti inflammatory diet for the rest of my life. Prednisone helps but try to get off it if you can after it has reduced your inflammation…it is not sustainable gives you diabetes,cataracts. Ni meds after low dose prednisone. Pain , yes. I take Tumeric caps. Paracetomol. Yep it does hurt when it gets my joints going. Waxes and wanes. Exercise with regular routine. Martindale, I was first diagnosed by skin and lymph biopsy three years ago. Also in my lungs at that time. PET scan showed the spread and extent of this disease. Please keep in touch.

So sorry you have it so tough. Good luck.

I was diagnosed with cardiac sarcoidosis in 2016 after Prednisone it is inactive. I think it's flaring up again. Does anyone has this condition, what symptoms do you experience

Hi @suscros68,

I moved your message about cardiac sarcoidosis to this discussion as I thought it might be easier to connect with others who have a similar diagnosis. For instance, I noticed that @riverotter has also recently written about cardiac sarcoidosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I hope you find this information from Mayo Clinic helpful as well:
– Cardiac sarcoidosis: A heart under attack https://www.mayoclinic.org/diseases-conditions/sarcoidosis/multimedia/cardiac-sarcoidosis-heart-under-attack-infographic/ifg-20405629

@suscros68, what symptoms have you experienced? Do you know what could be probable causes?

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