1. < Autoimmune Diseases

Sarcoidosis Treatment: Tips for an effective path to better health

Posted by jsjaast @jsjaast, Nov 12, 2021

I’m curious to hear from other sarcoidosis sufferers… I’ve was diagnosed in 2018 with liver, spleen, lymph and lung involvement, probably having had onset in 2015 and have been taking cellcept and prednisone. Scan in 2020 was clear for all organs, but fatigue and pain remained elevated. Managed to get off prednisone with the help of curcumin and boswalia for pain, but continue to deal with fatigue. Remission of symptoms for any period of time has been very hard to achieve. I know some folks get remission for long periods. I’m wondering if I should accept this as chronic or try to find an effective path to better health? What have others experienced?

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shani | @shani | Feb 16, 2022

Wish I could meet your Mom! MY kind of lady!

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rj4group | @rj4group | Jun 5, 2022

I just spent the last two months at Mayo Jacksonville. I have had pulmonary Sarcoidosis for many years.Mayo used advanced imaging and discovered I also have Cardio Sarcoid and Stomach Sarcoidosis confirmed by pathology last week .My main symptom has been pre-syncopy for the last two years but, now it has become intolerable being able to walk a short distance and feeling like I'm about to pass-out. I do not take steroids and my team at Mayo is working on a non steroid treatment to calm down the inflammation.

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1 reply
ess77 - Elizabeth | @ess77 | Jun 5, 2022

@rj4group and all...I'm so very sorry you have these diagnoses and Sarcoid is creating havoc. Bless you.

I was diagnosed with Sarcoid in 1986, at the NEW Mayo Jax. Pulmonary. It causes me troubles through the years, but using prednisone and others, I've been able to keep it at bay a bit. I now have vasculitis, and brachiectasis and multiple stuff, but no such sarcoid as you.

Mayo Jax is so help wonderful. Keep reaching out on Connect to chat with others who can give you support, ideas and help. This forum has helped me immensely!

Be blessed....elizabeth

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1 reply
rj4group | @rj4group | Jun 5, 2022
In reply to @ess77 "@rj4group and all...I'm so very sorry you have these diagnoses and Sarcoid is creating havoc. Bless..." + (show)
@ess77

@rj4group and all...I'm so very sorry you have these diagnoses and Sarcoid is creating havoc. Bless you.

I was diagnosed with Sarcoid in 1986, at the NEW Mayo Jax. Pulmonary. It causes me troubles through the years, but using prednisone and others, I've been able to keep it at bay a bit. I now have vasculitis, and brachiectasis and multiple stuff, but no such sarcoid as you.

Mayo Jax is so help wonderful. Keep reaching out on Connect to chat with others who can give you support, ideas and help. This forum has helped me immensely!

Be blessed....elizabeth

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Because of a lung biopsy last year "aspergillus " I cannot mix steroids with anti-fungal drugs to treat Sarcoidosis until the fungus has been resolved. My lung diagnosis was active Sarcoidosis on both lungs and a fungal ball that was removed on my left upper lobe by surgery.

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ess77 - Elizabeth | @ess77 | Jun 5, 2022

@rj4group and all..
I had a fungus ball in sphenoid sinus removed surgically last year. Fun...doc put me on 5 days of prednisone isone last week after brachectasis diagnosis. Waiting for sputum test for more more meds. Having tests this week then go forward. Using nebulizer with med and saline...helps loosen mucus. Learning how. Breathing better. Ate you doing anything to help with breathing?

I've never known anyone with Sarcoid, do t think. Maybe one person on connect. And, not on Sarcoid sight often, so glad I 'ran' into you!

We're rare, you know. Always known I was special, but didn't know I'm rare. Hmmmm...

Be blessed and rest with joy. Rest is a wonderful friend. I fought it for years, but now embrace it.
Elizabeth

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1 reply
dsisko | @dsisko | Jun 6, 2022

I was diagnosed with sarcoidosis in my lungs over 25 years ago. It was a problem for me in that I could not breathe when climbing steps or with exertion. This is still a problem as the sarcoid damaged my lungs but I don’t believe the sarcoid has progressed. The important thing to me is to not let this overshadow everything in my life. Adapt and let your life be defined by other things in it. Life can be full and rewarding.

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jeanne5009 | @jeanne5009 | Jun 16, 2022

I just had lingular segmentectomy of the left lung. Pet scan showed something and because I am a 6 year end stage liver cirrhosis patient we decided it had to be done. Great news! No cancer! I did have anthracote cells in 5 lymph nodes...docs said it could be Sarcoidosis. I have been reading about it and the prednisone treatment. A previous Pulmonologist put me on high doses for what was thought to be asthma. It made me have to give myself insulin shots because my sugar got so high. Nightmare!. Switched docs after that and got on the right track I think.
Anyone with info on Sarcoidosis please let me know how it is going.. Don't know if it will knock me out of the liver transplant program..could be in my liver too...

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jeanne5009 | @jeanne5009 | Jun 16, 2022
In reply to @ess77 "@rj4group and all.. I had a fungus ball in sphenoid sinus removed surgically last year. Fun...doc..." + (show)
@ess77

@rj4group and all..
I had a fungus ball in sphenoid sinus removed surgically last year. Fun...doc put me on 5 days of prednisone isone last week after brachectasis diagnosis. Waiting for sputum test for more more meds. Having tests this week then go forward. Using nebulizer with med and saline...helps loosen mucus. Learning how. Breathing better. Ate you doing anything to help with breathing?

I've never known anyone with Sarcoid, do t think. Maybe one person on connect. And, not on Sarcoid sight often, so glad I 'ran' into you!

We're rare, you know. Always known I was special, but didn't know I'm rare. Hmmmm...

Be blessed and rest with joy. Rest is a wonderful friend. I fought it for years, but now embrace it.
Elizabeth

Jump to this post

You are blessed!

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blossomgirl | @blossomgirl | May 18, 2023
In reply to @jsjaast "Thank you, Becky! I was on varying levels of prednisone for 3+ years. I tapered off..." + (show)
@jsjaast

Thank you, Becky!
I was on varying levels of prednisone for 3+ years. I tapered off but found myself reaching for NSAIDs regularly. At the suggestion of a friend in the medical profession who was concerned about digestive side effects, I started using a product that combines curcumin and boswellia.

It was not instant, but over the course of a week or so, the level of pain dropped from disruptive and exhausting to very manageable. I still tire out easily with exercise, but sleep better and can concentrate better. I’m happy to share the brand and specific product , though I am not trying to sell anything in particular.

Jump to this post

Can you please tell me the brand and product? Thanks for sharing your story.

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blossomgirl | @blossomgirl | May 18, 2023
In reply to @rj4group "I just spent the last two months at Mayo Jacksonville. I have had pulmonary Sarcoidosis for..." + (show)
@rj4group

I just spent the last two months at Mayo Jacksonville. I have had pulmonary Sarcoidosis for many years.Mayo used advanced imaging and discovered I also have Cardio Sarcoid and Stomach Sarcoidosis confirmed by pathology last week .My main symptom has been pre-syncopy for the last two years but, now it has become intolerable being able to walk a short distance and feeling like I'm about to pass-out. I do not take steroids and my team at Mayo is working on a non steroid treatment to calm down the inflammation.

Jump to this post

Is the mayo clinic you went to in Jacksonville Florida?

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