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?

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

Welcome @jsjaast. Fatigue can be so debilitating. Fellow sarcoidosis members like @sharonp51 @ryman @yturner @martindale may have some experiences and advice to share with you.

While we wait for others to join this conversation, you may interested in these related discussions:
– Pulmonary Sarcoidosis: How are you dealing with it? https://connect.mayoclinic.org/discussion/sarcoidosis-2c9d88/
– Sarcoidosis https://connect.mayoclinic.org/discussion/sarcoidosis/

What lifestyle changes or adaptations help you cope with symptoms?

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@jsjaast Fatigue can really be a problem, i know, i suffer with it also. I included a link to a discussion on fatigue where you will see that you are not alone.
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Post a question in that discussion and i know you’ll hear back.
Careful planning of our time and naps as needed can really help. Sometimes a 15 minute lie down is all that’s needed. Ive really been struggling with the idea that this is forever, a chronic condition. Someday, maybe i’ll accept it, but….
Can you tell me more about the circumin and boswalia? I’m still trying to get off prednisone

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I was diagnosed with sarcoid in 1998 although I'm certain I had it for many years before. The involvement for me was my lungs. It did cause some permanent damage but I have learned to live with it and that's fine. I never took any drugs for it as my doctor (after some research and connecting with experts in other areas of the country and world) and I agreed that the long term outcome was the same whether prednisone was taken or not. Of course, this was some time ago so things may have changed since then.

My sarcoid has been in remission for me for many years as I understand is quite common. It has not gotten worse or better.

It's very important to continue to exercise and keep your body strong even though it may be difficult at times. I found that using an e-bike is one thing I really enjoy and I can kick in the power when my lungs are stressed. Eat healthy, and live your best life. Many things can define your life; make those things positive ones.

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@becsbuddy

@jsjaast Fatigue can really be a problem, i know, i suffer with it also. I included a link to a discussion on fatigue where you will see that you are not alone.
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Post a question in that discussion and i know you’ll hear back.
Careful planning of our time and naps as needed can really help. Sometimes a 15 minute lie down is all that’s needed. Ive really been struggling with the idea that this is forever, a chronic condition. Someday, maybe i’ll accept it, but….
Can you tell me more about the circumin and boswalia? I’m still trying to get off prednisone

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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.

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The brand is Terry Naturally and the product is Curamin Extra Strength.

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@colleenyoung

Welcome @jsjaast. Fatigue can be so debilitating. Fellow sarcoidosis members like @sharonp51 @ryman @yturner @martindale may have some experiences and advice to share with you.

While we wait for others to join this conversation, you may interested in these related discussions:
– Pulmonary Sarcoidosis: How are you dealing with it? https://connect.mayoclinic.org/discussion/sarcoidosis-2c9d88/
– Sarcoidosis https://connect.mayoclinic.org/discussion/sarcoidosis/

What lifestyle changes or adaptations help you cope with symptoms?

Jump to this post

Thank you!

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I’ve had pulmonary sarcoidosis, MS and 3 others on and off since the 70.s, plus a few regular diagnoses thrown in for excitement and at the risk of sounding simplistic, seems everything said in the last couple of days is on target with me, great to hear. .. thank you everyone. My input..just need to b ‘’anal’’ about everything, stay healthy, away from sick people, respiratory diseases, much like we’re all doing with covid, because lungs are vulnerable, get any preventative offered, like Prevnar 13, MY miracle drug …best thing I ever did.I haven’t had one episode of pneumonia in 6 years! use all energy conservation techniques and manage fatigue, but never b over tired, the more exercise the better, always self-pacing, never giving in, doing the best and most I can every day. Only excellent, supportive docs, only one ‘’oops’’event is ever allowed and do not be afraid to point out unacceptable behavior like a lab tech without gloves.

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@shani

I’ve had pulmonary sarcoidosis, MS and 3 others on and off since the 70.s, plus a few regular diagnoses thrown in for excitement and at the risk of sounding simplistic, seems everything said in the last couple of days is on target with me, great to hear. .. thank you everyone. My input..just need to b ‘’anal’’ about everything, stay healthy, away from sick people, respiratory diseases, much like we’re all doing with covid, because lungs are vulnerable, get any preventative offered, like Prevnar 13, MY miracle drug …best thing I ever did.I haven’t had one episode of pneumonia in 6 years! use all energy conservation techniques and manage fatigue, but never b over tired, the more exercise the better, always self-pacing, never giving in, doing the best and most I can every day. Only excellent, supportive docs, only one ‘’oops’’event is ever allowed and do not be afraid to point out unacceptable behavior like a lab tech without gloves.

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@shani Wow, Wow, I love your attitude!! I have a different autoimmune disease and fatigue seems to follow me everywhere. Ive been getting exercise but I think I need to get more. What do you do on days when you’re just too tired?

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@becsbuddy

@shani Wow, Wow, I love your attitude!! I have a different autoimmune disease and fatigue seems to follow me everywhere. Ive been getting exercise but I think I need to get more. What do you do on days when you’re just too tired?

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Short answer.I REALLY try to never be over-tired as it’s poison, but if that happens and it does, despite myself, I quilt, make papercuts, chat on skype, email or simply take a short nap. You think you need more exercise? exercise only means movement, not heavy gym workouts so if you are sitting or standing do something…rearrange your pantry as a 5 lb bag of sugar in your pantry or a a half gallon jug of milk weigh the same as a 5 or 8 lb free weight. WHY are you fatigued? Disease process? Answer honestly with a focused solution…bored? not enough sleep? Why? Overworked yesterday? Meds issue? take a SHORT nap followed by a walk with a friend, walk around a mall or offer a neighbor with a baby to push the stroller (having something to hold on to assists your walking, thus increasing your endurance), go to your garden and pull a few weeds /re-pot your plants, do some balance exercises while standing at your sink , clean your house😖, rearrange your closets, IOW …MOVE! Change your perspective, remember to rest before feeling exhausted and that rest doesn’t always mean sleep. If you are tired of standing, sit and if you are sitting, stand, but always to YOUR tolerance.

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@shani

Short answer.I REALLY try to never be over-tired as it’s poison, but if that happens and it does, despite myself, I quilt, make papercuts, chat on skype, email or simply take a short nap. You think you need more exercise? exercise only means movement, not heavy gym workouts so if you are sitting or standing do something…rearrange your pantry as a 5 lb bag of sugar in your pantry or a a half gallon jug of milk weigh the same as a 5 or 8 lb free weight. WHY are you fatigued? Disease process? Answer honestly with a focused solution…bored? not enough sleep? Why? Overworked yesterday? Meds issue? take a SHORT nap followed by a walk with a friend, walk around a mall or offer a neighbor with a baby to push the stroller (having something to hold on to assists your walking, thus increasing your endurance), go to your garden and pull a few weeds /re-pot your plants, do some balance exercises while standing at your sink , clean your house😖, rearrange your closets, IOW …MOVE! Change your perspective, remember to rest before feeling exhausted and that rest doesn’t always mean sleep. If you are tired of standing, sit and if you are sitting, stand, but always to YOUR tolerance.

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Love your advice. When my Mom was in assisted living, her services included personal laundry, but instead she chose to load her basket, attach a leash, pull it down to the laundry room behind her walker, do her own wash & dry, pull it back, then fold and put away, walking to closet or drawer with each piece. When I offered to help her reply was "this is my exercise for today." When I was recuperating from a debilitating infection, she told me "every thing you do is exercise, don't just sit there and get waited on!" Now that is my go-to advice for people.
And, I try to never sit for an hour – up and do – tidying, walk to the mail box, water plants… after pandemic isolation, I bet we had the cleanest closets and drawers in my town.
Sue

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

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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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