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Pulmonary Sarcoidosis: How are you dealing with it?
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.
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Hi @kindltmdar1 Thank you for sharing your journey and I am sorry you are feeling such pain and frustration. I am a post heart transplant patient - almost two years now. Had the transplant at Mayo Phoenix. I have had sarcoidosis since the birth of my second child, very mild, and then in 2004, after the death of my father, it flared and affected my eye, my right lung and my heart. So I understand your dilemma.
What meds are you on for the sarcoidosis and wh manages it?
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2 ReactionsThank you for sharing. I was just recently diagnosed with sarcoidoisis and have been told nothing about my disease or the prognosis. I ask questions and can't seem to get a straight answer. One doctor just told me to continue living life as I was, that nothing can be done. I was treated with steroids at initial diagnosis for 2 months which did take the swelling down, but I wonder now what? Is there any precautionary measures I can take? Is there anything that can slow or stop the progression of this disease? Any info would be of great help. Any resources I can get would be of great help! Thanks for reading!
Hi @jessicap42, I have no medical background or training but the fact that you are here on Connect asking questions and trying to learn more about your health condition is a big first step. The more we can learn, the better questions we can ask our doctors and hopefully they can help us with a better treatment plan. Mayo Clinic has some information on sarcoidoisis that may provide a little more information for you.
Sarcoidosis - Diagnosis & Treatment
-- https://www.mayoclinic.org/diseases-conditions/sarcoidosis/diagnosis-treatment/drc-20350363
Here's another site you might find helpful.
Prognosis for Sarcoidosis - Foundation for Sarcoidosis Research
-- https://www.stopsarcoidosis.org/what-is-sarcoidosis/prognosis/
Hope this helps!
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2 Reactions@jessicap42 here,s another website http://www.WebMD.com/sarcodosis. Nhlbi.nih.gov/sacodosis
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2 ReactionsHi I wanted to introduce myself. I am a 45 yr old female that has dealt with various autoimmune diseases since I was 15. My current battle is with stage 4 liver cirrhosis and after biopsies on my lungs and liver it was due to sarcoidosis. I have a liver that is full of granulomas. My autoimmune journey started at 15 with Psoriasis, then at 21 after my first child I developed the Psoriatic arthritis to go with it. Then I was diagnosed with Fybro at about 30. The sarcoid started about a year and a half ago when they diagnosed my cirrhosis and that it was not alcohol related. I don't drink. So now I am looking at a transplant list. I have ever specialists imaginable but they all seem not to know how to help me. Starting this month, my feet began to swell and ache. And I mean BAD. at first I thought it was my PA and I was having a flare but after a week and a half of intense pain and ER visits I am exhausted. I just saw my PCP and he is referring me on to more specialists. None of them want to touch me. I also am dealing with acute kidney failure no one seems to understand and on my last MRI they found a mass on my pancreas. Is anyone dealing with this level of extreme autoimmune disease? I am 40% covered with psoriasis and can't walk, on pain meds (which I have never taken regularly even with my history but now have no choice but to take opiates) and don't know where to turn. Is there someone out there that just deals with autoimmune disease? I really don't think in my experience that anyone is looking at someone like me and that all this is related somehow. I have been saying that my whole life. HELP. Thanks for reading.
Hi @kindltmdar1 and @jessicap42,
I wanted to let you know that I moved your post to this existing sarcoidosis discussion so that you can connect with other members who have this condition. Simply click VIEW & REPLY in the email and you can read through past posts.
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1 ReactionThank you, I just love this site. I never realized how many people are affected by Sarciodosis, it's more prevalent than the Drs. really know and your site helps people to connect with others who have this crazy illness.
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1 ReactionHi, I’m Rod. I was diagnosed with S last year. I have posted earlier. My case is not even close to yours but I’m here to talk. I feel very bad for you. One of my kids has auto immune problems as well. This has gone on his whole life but he is young and Drs. can’t pinpoint anything that puts it all together. I have problems believing it’s not environmental or diet somehow???? Don’t know but I hope we can keep sharing our stories and maybe come up with something. Rod
I was diagnosed with sarcoidosis 20 yrs ago about, but suffered for years before. I am lucky that it has not spread to anywhere else. For the pain in my chest I did castor oil packs for 3 nights in a roll. About two years ago. It really helped. I felt like I was having a heart attack all the time. I think it was dried old mucus sticking to scar tissue. I exercise a lot and try to eat healthy. I have a long way to go.
I am so sorry. Don't give up. Keep researching everything you can and try anything