When Your Own Body Turns Against You: A Sarcoidosis Story

Comments · 19

• RO

  @rosaliehaslett804 · 4 months ago

  I wish that all of my many doctors would brush up on sarcoidosis. So frustrating.

  1

• SO

  @solomon2424 · 2 months ago (edited)

  Wow!  My symptoms are very similar to hers.  I was diagnosed in 2017 after having many granulomas removed from my arm, knee, & foot.  I have never even heard of Sarcoidosis & the general surgeon who removed all my granulomas had never even heard of either, so that tells just goes to show how rare this disease is.  I believe I have the Lofgren's Syndrome form of Sarcoidosis based on the symptoms.  Despite what most doctors & people think this disease just just go away on its own...I believe people just get better at managing the symptoms.

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• RE

  @RebeccaKennedy-m5d · 10 months ago

  Methotrexate is a chemotherapy agent and immune system suppressant. It is not a steroid. Steroids are however generally the first line of treatment for sarcoidosis and then they switch to something like methotrexate

  3

• J_

  @j_h422 · 10 months ago

  I’ve had sarcoidosis for a few years and recently identified a lot of links to how the body handles vitamin A. Vitamin A and sarcoid seem closely related in the lungs — when the liver can’t clear excess vitamin A properly, its active form (retinoic acid) can build up and overstimulate immune cells in the lungs, triggering the same kind of inflammation and granulomas seen in sarcoidosis, especially when combined with sunlight or high vitamin D levels. <br><br>There also seem to be strong overlaps between vitamin A activity and sunlight-related flares, high vitamin D or calcium levels, skin granulomas, alcohol sensitivity, and fatty-liver patterns — it’s a rabbit hole once you look into it. <br> <br>It turns out vitamin A isn’t really a “vitamin” in the usual sense — its active form, retinoic acid, is a powerful signalling compound that’s actually used in medicine to deliberately cause controlled wounds (for skin resurfacing and cancer treatments). In research, excess retinoic acid is even used to induce inflammation and fibrosis in animal models because of how strongly it disrupts normal cell regulation. <br> <br>Many acne drugs are retinoic-acid derivatives (like isotretinoin), and while they can clear skin, they’re also known for harsh side effects such as liver strain, dryness, mood changes, and lingering immune or gut issues<br><br>I’m going to try reducing vitamin A intake — cutting things like liver, dairy, and fortified foods — and supporting detox and enzyme function with molybdenum, selenium, zinc, niacin flush, and non-methylated B12 (hydroxocobalamin) to see if it makes a difference. <br><br>Definitely not medical advice, but sharing in case it helps anyone else exploring this angle.

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• EV

  @EvilLighting2 · 5 months ago (edited)

  Thank you, for the information.<br><br>Bernie Mack had it prior to his death. My Mom&apos;s sister died from it too. I&apos;m old now and I plan to go where Bernie Mack went and was diagnosed just to see if I have it. I feel I have two current signs that might point towards it.<br><br>I&apos;m sorry for anyone that has it. I hope that will find a cure on day. I know Bernie Mack&apos;s widow is having a fundraiser very soon.

  1

• AN

  @anajordan3396 · 11 days ago (edited)

  I was told that I had Erythema Nodosum in 1987. That is very painful. It also made my legs look very not appealing. It was always on my l egs. &nbsp;I was 27. Nothing was ever done. No meds. Not even a cream was prescribed. This week, in 2026, I find out I may have this Sarcoidosis. All this while trying to find out if I h ave metastasis in my lungs. I was diagnosed with &nbsp;endometrial cancer. &nbsp;I searched the topic and found this video. Thanks.

• VA

  @VanessaCasey-m3i · 1 month ago (edited)

  I have it in my lungs, lymph nodes and in my spine and eyes. On methotrexate, steroids and morphine for pain. It’s nasty. I have had two lung biopsies and a lumbar puncture.

• LI

  @LindaDavis-f2i · 2 weeks ago

  I &nbsp;have &nbsp;sarcoidosis several &nbsp;part of my body &nbsp;and I have typed diabetes nerve damage in my feet burns irritation. The sarcoidosis is on my lungs my stomach pelvis liver. I take methotrexate.effusion I had two I have two more to go. I take steroid. I can&apos;t work in more &nbsp;I don&apos;t like this they.i can&apos;t get help of social security and disability I have back surgery. I prayer God answers Prayer.

  1

• PJ

  @pjs9346 · 7 months ago

  Diabetis can be a symptom of Sarcodisis.<br>My Doctors are ignorant of Sarcodisis

  1

• CL

  @clancycreations · 2 years ago

  As far as I understand, sarcoidosis IS an autoimmune disorder/disease. Just wanted to clarify for people going through this. I have Sjögren’s as well. 💜

  1

• SH

  @sheilathegreat11 · 1 year ago

  It is NOT an autoimmune disease.