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.

@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.

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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.

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So sorry you have it so tough. Good luck.

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@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.

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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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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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Sarcoidosis. Lung Nodules
Would love to chat with anyone that had/has this condition

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@sharonp51

Sarcoidosis. Lung Nodules
Would love to chat with anyone that had/has this condition

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Hi @sharonp51, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about pulmonary sarcoidosis. I did this so you can meet other members like @suscros68 @martindale @sarcoidosis @estrada53 @bboxer @chesneydell1965 @riverotter @ryman @irene5 and more.

Here are additional discussions you may be interested in:
– Sarcoidosis https://connect.mayoclinic.org/discussion/sarcoidosis/
– Small lung nodules: How often should they be scanned / monitored? https://connect.mayoclinic.org/discussion/lungs/
– Lung nodules & scared! https://connect.mayoclinic.org/discussion/lung-nodules-scared/

Sharon, can you tell us a bit more about you? When were you diagnosed with sarcoidosis? What treatment have you had? What is your biggest challenge or concern at this time?

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@colleenyoung

Hi @sharonp51, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about pulmonary sarcoidosis. I did this so you can meet other members like @suscros68 @martindale @sarcoidosis @estrada53 @bboxer @chesneydell1965 @riverotter @ryman @irene5 and more.

Here are additional discussions you may be interested in:
– Sarcoidosis https://connect.mayoclinic.org/discussion/sarcoidosis/
– Small lung nodules: How often should they be scanned / monitored? https://connect.mayoclinic.org/discussion/lungs/
– Lung nodules & scared! https://connect.mayoclinic.org/discussion/lung-nodules-scared/

Sharon, can you tell us a bit more about you? When were you diagnosed with sarcoidosis? What treatment have you had? What is your biggest challenge or concern at this time?

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Hello ! I was diagnosed 2017. I had a lung nodule and was sent for a PET scan. The only thing that “lit up “ as the nodule It was then suggested to remove/biopsy the nodule. I had an upper lung Lobectomy, apparently the nodule was located in an area that couldn’t be reached. This nodule was biopsies and found to be an inflammatory granuloma, send for culture, took 6 weeks and grew nothing. (I should mention I have multiple inflammatory conditions). I have no lung symptoms other than shortness of breath from Childhood Asthma
I had a repeat scan after 9 months and it was clean, then 6 months later with new tiny lesionsI then 1 yr later, i have another nodule, 15x17mm same lung, only lower spot this time. I was put on a round of prednisone and “asked” if I wanted a bronchoscopy or repeat CT scan in 3 months. I am not a Dr, so I am contemplating finding a new one or deciding what to do.

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@rtown789

Hi, diagnosed with sarcoidosis 2 years ago. I'm doing ok..for the most part. However, I'm losing weight. Is there anyone experiencing this problem?

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I have not been able to gain weight, and have no appetite
Diagnosed 2017

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