Cardiac Sarcoidosis

Posted by craigz20 @craigz20, Jul 26, 2019

Hi All, I wanted to start a discussion on Cardiac Sarcoidosis to share information ! I have Cardiac Sarcoidosis in addition to Mitral Valve Prolapse with severe regurgitation ! I need surgery to fix the valve, however they want to start me on steroids for a "short period" to try and get the heart inflammation down prior to surgery to reduce risks during surgery. I am fairly asymptomatic, meaning my heart function is good (except for valve). Anyone else out there on the same journey to trade info ????

Hi @craigz20! I also had cardiac sarcoid. Had sarcoid in eye and lungs prior to it moving to my heart. So I was on steroids from the beginning – major doses to reduce the inflammation and granuloma.
Do you have sarcoid anywhere other than your heart? Where is the sarcoid in your heart? Mine first went to the SA node so I needed a pacemaker and quickly after that a defibrillator. Then the granuloma went to my ventricles. I did not have a valve issue. I did have a heart transplant 2 1/2 years ago. Had the sarcoid for many years before that.
I'm very interested in your diagnosis.

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Hi @estrada53! Thank you so much for your response ! I have felt incredibly isolated and feel that the information that I read is pretty dire, so I thank you for your kindness in responding 🙂 Your story sounds very intense, I am so sorry to hear about the sarcoid's progression in your heart leading to a transplant, wow. I'm not entirely sure where the sarcoidosis is in my heart. I was preliminarily diagnosed May 2019 via cat scan of my lungs, then pet scan indicated sarcoid in my heart. So far, aside from being light headed or out of breath from time to time, I appear fairly asymptomatic (maybe some fast heart beats from what the heart monitor shows but cardiologist said that it's not dangerous). I am currently not on any medication, however I was supposed to have valve repair surgery on August 6. They want to delay the surgery to try to reduce the inflammation prior to surgery to obtain a better outcome.

My questions are…do you know if it's possible for sarcoid to remain asymptomatic or does it keep going until it destroys your heart ? Presently my lung function test shows I'm at 75% capacity, so the sarcoid is doing some damage there….but I am very worried about my heart and to try and keep the disease from causing damage there. Do you know if the steroids will work ? So much more to ask, but damn it's daunting. I am remaining positive in my brain, going to continue exercise (modifying so my valve holds up until surgery)…but the steroids is gonna change my life I fear.

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@craigz20

Hi @estrada53! Thank you so much for your response ! I have felt incredibly isolated and feel that the information that I read is pretty dire, so I thank you for your kindness in responding 🙂 Your story sounds very intense, I am so sorry to hear about the sarcoid's progression in your heart leading to a transplant, wow. I'm not entirely sure where the sarcoidosis is in my heart. I was preliminarily diagnosed May 2019 via cat scan of my lungs, then pet scan indicated sarcoid in my heart. So far, aside from being light headed or out of breath from time to time, I appear fairly asymptomatic (maybe some fast heart beats from what the heart monitor shows but cardiologist said that it's not dangerous). I am currently not on any medication, however I was supposed to have valve repair surgery on August 6. They want to delay the surgery to try to reduce the inflammation prior to surgery to obtain a better outcome.

My questions are…do you know if it's possible for sarcoid to remain asymptomatic or does it keep going until it destroys your heart ? Presently my lung function test shows I'm at 75% capacity, so the sarcoid is doing some damage there….but I am very worried about my heart and to try and keep the disease from causing damage there. Do you know if the steroids will work ? So much more to ask, but damn it's daunting. I am remaining positive in my brain, going to continue exercise (modifying so my valve holds up until surgery)…but the steroids is gonna change my life I fear.

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Hi. Happy to reply. While it does seem like my story is intense, and there are other stories as well, I have been able to have a very joyful and full life and expect to for many years to come.
I asked about where they found the sarcoid in your heart because once it causes heart failure, there's really no going back. If it's in a valve or node, it could be a different outcome.
Just to add: My lungs were at 66% and now with my new heart I am up to 88%.
At the beginning I was pretty asymptomatic as well and with meds my EF ratio was between 40-45. I could have lived with that. When I went to Mayo they gave me an oxygen/carbon dioxide test and found that my major muscle groups were only getting 40% of the needed oxygen. So they knew I needed a new heart. I hope and pray you receive great medical care.
My best to you.

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@craigz20

Hi @estrada53! Thank you so much for your response ! I have felt incredibly isolated and feel that the information that I read is pretty dire, so I thank you for your kindness in responding 🙂 Your story sounds very intense, I am so sorry to hear about the sarcoid's progression in your heart leading to a transplant, wow. I'm not entirely sure where the sarcoidosis is in my heart. I was preliminarily diagnosed May 2019 via cat scan of my lungs, then pet scan indicated sarcoid in my heart. So far, aside from being light headed or out of breath from time to time, I appear fairly asymptomatic (maybe some fast heart beats from what the heart monitor shows but cardiologist said that it's not dangerous). I am currently not on any medication, however I was supposed to have valve repair surgery on August 6. They want to delay the surgery to try to reduce the inflammation prior to surgery to obtain a better outcome.

My questions are…do you know if it's possible for sarcoid to remain asymptomatic or does it keep going until it destroys your heart ? Presently my lung function test shows I'm at 75% capacity, so the sarcoid is doing some damage there….but I am very worried about my heart and to try and keep the disease from causing damage there. Do you know if the steroids will work ? So much more to ask, but damn it's daunting. I am remaining positive in my brain, going to continue exercise (modifying so my valve holds up until surgery)…but the steroids is gonna change my life I fear.

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Hi again @craigz20. As for steroids. I was on 45-60 mg of prednisone at the beginning then weaned off of the steroids. I was also on methotrexate and later azathioprine. I was off of everything right prior to the transplant. The sarcoid had calmed down but the damage had already been done to my heart. As the granuloma developed on my ventricles, the heart had to increase in size to be able to squeeze the blood through the arteries. I had cardiomyopathy and my heart was 3 times it's normal size. I tell you this because as crazy as it seems, I am doing great now.
Let me ask…why are you afraid of the steroids given what's going on? Do you know of an alternative anti-inflammatory?

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@estrada53 Thanks for your responses !!!!

I just feel that steroids come in to play when doctors really have no answers, they just hope they will work while they are destructive to other parts of your body. I am trying to rid my office and house of all dust and mold (I am highly allergic to both) as well as to remove all wheat and gluten from my diet as I am also highly allergic to wheat ! I see a Dr. of Chinese Medicine / herbalist, acupuncturist and see a nutritionist and maintain a completely anti inflammatory diet. I am from California you know !!!!!

Just trying anything naturally that could also provide a benefit (even CBD oil) aside from nuking my body with Steroids. Also, from what I read….they really don't know if the steroids work for everyone so you gotta put up with negative side effects just to see whether or not they will work. Anyway…I might not have any choice and will likely try anything at this point (including all of the pharmaceuticals) to ensure that the disease does not progress or cause more damage. I'm going for an MRI of my heart on Monday to see if there is any scarring…PET shows that sarc is alive and well on my heart, just not sure exactly where.

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@craigz20

@estrada53 Thanks for your responses !!!!

I just feel that steroids come in to play when doctors really have no answers, they just hope they will work while they are destructive to other parts of your body. I am trying to rid my office and house of all dust and mold (I am highly allergic to both) as well as to remove all wheat and gluten from my diet as I am also highly allergic to wheat ! I see a Dr. of Chinese Medicine / herbalist, acupuncturist and see a nutritionist and maintain a completely anti inflammatory diet. I am from California you know !!!!!

Just trying anything naturally that could also provide a benefit (even CBD oil) aside from nuking my body with Steroids. Also, from what I read….they really don't know if the steroids work for everyone so you gotta put up with negative side effects just to see whether or not they will work. Anyway…I might not have any choice and will likely try anything at this point (including all of the pharmaceuticals) to ensure that the disease does not progress or cause more damage. I'm going for an MRI of my heart on Monday to see if there is any scarring…PET shows that sarc is alive and well on my heart, just not sure exactly where.

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I understand your underlying reasons for avoiding steroids. I felt the same, but was unable to identify any effective alternatives when I needed them. Too far along. Please keep us all in the loop regarding your MRI – which I had also to diagnose the sarcoid – and your best steps.
You are definitely not alone here.

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@craigz20 Hello, Craig, and welcome to MayoClinicConnect. We’re not medical professionals or experts, but we all have experiences that we share to help each other. If you’ve not yet had them, you can expect an echocardiogram to look at the function of your heart and several other cardiac tests so the doctors can follow your heart’s health as you get treatment. You will also want to start a notebook with your health history, as best you know it, because everyone will ask. Include family history, especially if someone had/has heart disease; ALL medicines you take, including over-the-counter and Chinese meds. Some of these may interact with the meds you will get for treatment. Speaking of treatment, prednisone or intravenous steroids are the best way to jump-start treatment. Last year I was diagnosed with lesions on my brain and the intravenous steroids brought my brain back. There was nothing else. I have a rare autoimmune disease and the doctors are still researching treatment. The steroids kept me alive! Are you seeing doctors at a major medical center? You might feel more confident with a second opinion on treatment. One of the other mentors may know what Mayo Clinic says about sarcoidosis. I’ll let our expert, @johnbishop , see what he can find. Best of luck and keep in touch, please!

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Hi @craigz20 — I would like to add my welcome to Connect along with @estrada53 and @becsbuddy. I'm hoping some other members who may share your symptoms will join the discussion and share their experience. I did find that Mayo Clinic has a Cardiac Sarcoidosis Clinic so that might be something to check into. It's good that you are being your own advocate. From what I've read the jury is still out on using corticosteroids as a treatment and since I have PMR that's in remission I can relate to taking steroids and not liking the side effects.

Mayo Clinic launches Cardiac Sarcoidosis Clinic
https://www.mayoclinic.org/medical-professionals/cardiovascular-diseases/news/mayo-clinic-launches-cardiac-sarcoidosis-clinic/mac-20436865

NCBI – Cardiac sarcoidosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860791/

UpToDate – Management and prognosis of cardiac sarcoidosis
https://www.uptodate.com/contents/management-and-prognosis-of-cardiac-sarcoidosis

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Sorry, must interrupt. Cannot sleep with the pain.What does pain full throbbing in both carotid arteries mean? Been going on now for weeks and getting much, much more painful as time goes bye. I do have vascular problems. (Insufficiency). Thinking of calling 811. ?????? [each

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@peach414144

Sorry, must interrupt. Cannot sleep with the pain.What does pain full throbbing in both carotid arteries mean? Been going on now for weeks and getting much, much more painful as time goes bye. I do have vascular problems. (Insufficiency). Thinking of calling 811. ?????? [each

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@peach414144 Just saw your post peach. I would go to the E.R. right now for this . Let us know

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@johnbishop

Hi @craigz20 — I would like to add my welcome to Connect along with @estrada53 and @becsbuddy. I'm hoping some other members who may share your symptoms will join the discussion and share their experience. I did find that Mayo Clinic has a Cardiac Sarcoidosis Clinic so that might be something to check into. It's good that you are being your own advocate. From what I've read the jury is still out on using corticosteroids as a treatment and since I have PMR that's in remission I can relate to taking steroids and not liking the side effects.

Mayo Clinic launches Cardiac Sarcoidosis Clinic
https://www.mayoclinic.org/medical-professionals/cardiovascular-diseases/news/mayo-clinic-launches-cardiac-sarcoidosis-clinic/mac-20436865

NCBI – Cardiac sarcoidosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860791/

UpToDate – Management and prognosis of cardiac sarcoidosis
https://www.uptodate.com/contents/management-and-prognosis-of-cardiac-sarcoidosis

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Thank you for this information.

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@craigz20

@estrada53 Thanks for your responses !!!!

I just feel that steroids come in to play when doctors really have no answers, they just hope they will work while they are destructive to other parts of your body. I am trying to rid my office and house of all dust and mold (I am highly allergic to both) as well as to remove all wheat and gluten from my diet as I am also highly allergic to wheat ! I see a Dr. of Chinese Medicine / herbalist, acupuncturist and see a nutritionist and maintain a completely anti inflammatory diet. I am from California you know !!!!!

Just trying anything naturally that could also provide a benefit (even CBD oil) aside from nuking my body with Steroids. Also, from what I read….they really don't know if the steroids work for everyone so you gotta put up with negative side effects just to see whether or not they will work. Anyway…I might not have any choice and will likely try anything at this point (including all of the pharmaceuticals) to ensure that the disease does not progress or cause more damage. I'm going for an MRI of my heart on Monday to see if there is any scarring…PET shows that sarc is alive and well on my heart, just not sure exactly where.

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@craigz20 Did you get any results from your MRI on Monday?

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@becsbuddy

@craigz20 Did you get any results from your MRI on Monday?

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You are so sweet to follow up 🙂 No results yet, usually takes a couple days for them to review them here in the megalopolis of Los Angeles. My medical team has gone radio silence, I guess they are all just waiting to see the MRI. I am bracing for impact, all news I've received lately has been negative so just hoping for a positive bright spot here !!!

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@becsbuddy

@craigz20 Hello, Craig, and welcome to MayoClinicConnect. We’re not medical professionals or experts, but we all have experiences that we share to help each other. If you’ve not yet had them, you can expect an echocardiogram to look at the function of your heart and several other cardiac tests so the doctors can follow your heart’s health as you get treatment. You will also want to start a notebook with your health history, as best you know it, because everyone will ask. Include family history, especially if someone had/has heart disease; ALL medicines you take, including over-the-counter and Chinese meds. Some of these may interact with the meds you will get for treatment. Speaking of treatment, prednisone or intravenous steroids are the best way to jump-start treatment. Last year I was diagnosed with lesions on my brain and the intravenous steroids brought my brain back. There was nothing else. I have a rare autoimmune disease and the doctors are still researching treatment. The steroids kept me alive! Are you seeing doctors at a major medical center? You might feel more confident with a second opinion on treatment. One of the other mentors may know what Mayo Clinic says about sarcoidosis. I’ll let our expert, @johnbishop , see what he can find. Best of luck and keep in touch, please!

Jump to this post

@becsbuddy Thanks so much for the welcome email and resources ! I am pondering having a consult with someone at The Mayo Clinic, especially if I don't feel as if the folks at UCLA have the right answers. Right now my current insurance coverage won't cover that, however will be looking into more flexible insurance policy next open enrollment…otherwise would cause financial ruin to make a change at this time. However I do want to stay connected with those that are seeking treatment at The Mayo Clinic and hopefully share information and support. Thanks so much for your kindness !

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@lioness

@peach414144 Just saw your post peach. I would go to the E.R. right now for this . Let us know

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DearLionness, it went away during the night. I am waiting for my doctors next appointment to address this issue. (There are so many) Thank you for being such a very caring person. I do appreciate it. Peach

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