Anyone with diagnosis of sarcoidosis?/

Posted by bethie777 @bethie777, Oct 29 5:25pm

2yrs ago dx with psoriasis. Finally seen at Mayo-new treatment plan. Also developed dry, non-prod cough. Seen 11 mo later by pulm, bronch done. No + biopsies. Based on symptoms started on steroids(1yr ago). Cont w/occas cough, SOB,fatigue & wt up 30#. CT show sarcoidosis but not as significant as my clinical symptoms. Will have a lung test to determine if we should tx asthma more agressively or sarc. Anyone have a story like this? My body &brain want to return to previous self.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Five years ago I was diagnosed with Sarcoidopathy with sarcoid of the eye. Was put on prednisone. It hasn’t spread to my lungs.

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@bethie777 Good morning and welcome to Mayo Clinic Connect. It sounds like you’ve had a rough road! I put a link to one of many discussions on sarcoidosis.
https://connect.mayoclinic.org/discussion/sarcoidosis-treatment/
Do you get all your treatment at Mayo? If so, you’re very lucky. That said, in reality, no one with an autoimmune disorder is very lucky. I’m now in my 6th year dealing with everything that comes along. Some days i feel like I’ve got my old self back and I can do what I want, and then I overdo. If I didn’t have house chores, I’d be golden! But, you just have to keep fighting.
Here’s another discussion about fatigue and how you can manage it:
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
You can respond to anyone in any group. Just be sure to use the @ sign before their name
Will you stay in touch with me?

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@barscr2

Five years ago I was diagnosed with Sarcoidopathy with sarcoid of the eye. Was put on prednisone. It hasn’t spread to my lungs.

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Yes! Grateful for your knowledgeable words of wisdom. I appreciate the websites that you have given me and will read them soon. Stay in touch and know that I do appreciate you. Blessings, Beth.

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Omg I’m so sorry, that sounds like a lot of suffering. I too am a retired nurse. I’m thinking about you, going your hanging in there.

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My story with sarcoidosis is a little different but with some of the same frustrations. For several years, doctors tested me for asthma when I told them I couldn’t breathe under certain conditions. Finally, a lung doctor took x-rays and said I had sarcoid. A lung biopsy confirmed it (very painful and I wouldn’t do this part again because of the pain but as this was 25 years ago, procedures may have changed).

My doctor and I decided no to prednisone so I’ve never taken drugs to control it. My suggestion is to continue to do as much exercise as possible. It makes a huge difference. My joy is biking and I now use an e-bike as a regular bike was too tiring for breathing. Occasionally I will use an inhaler and this can help. When at high altitude, I use an over-the-counter product called “Boost” which is a hand sized canister of pure oxygen for inhalation as needed. Helpful when I need it (eg climbing a flight of stairs).

Stress, lack of sleep, incline and high altitudes are difficult. Find a doctor you trust, exercise as much as you can, and surround yourself with those things in life you can find joy in.

Best of luck on your journey. You can do this.

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@barscr2

Five years ago I was diagnosed with Sarcoidopathy with sarcoid of the eye. Was put on prednisone. It hasn’t spread to my lungs.

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Grateful for your support. Stay well my friend. 🙏

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@barscr2

Omg I’m so sorry, that sounds like a lot of suffering. I too am a retired nurse. I’m thinking about you, going your hanging in there.

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Thank you so much!

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Hello. I had sarcoidosis of liver and spleen in 2022. I have chronic fatigue, a dry non prod braying-type cough that I attributed to GERD or tissue disease. My abdominal area looks swollen; Honestly, it looks like I'm 23 months pregnant. I gained weight. I lost inches but not abdomen.

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@peacetoyou

Hello. I had sarcoidosis of liver and spleen in 2022. I have chronic fatigue, a dry non prod braying-type cough that I attributed to GERD or tissue disease. My abdominal area looks swollen; Honestly, it looks like I'm 23 months pregnant. I gained weight. I lost inches but not abdomen.

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I pardon…cough I attributed to GERD, CRPS, or CD/meige/ generalized dystonia. I don't know 😔

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@peacetoyou

Hello. I had sarcoidosis of liver and spleen in 2022. I have chronic fatigue, a dry non prod braying-type cough that I attributed to GERD or tissue disease. My abdominal area looks swollen; Honestly, it looks like I'm 23 months pregnant. I gained weight. I lost inches but not abdomen.

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@peacetoyou Does your doctor know about these changes? I would highly recommend that you call for an appointment.
Can you do that? And let me know what you learn.

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