Cardiac Sarcoidosis

I'm not sure who will answer this....

by crustyg - 2021-09-01 07:57:34

..and I'm very aware that this is outside any possible stretch of my expertise and experience.

However, I think you may wait quite a while for others to answer (and if/when they do, I shall slink away).

I think that an enhanced cardiac MRI is probably the most important investigation (gadolinium, I think).  They would be looking for abnormal/reduced muscle movement during contraction, evidence of granulomas, wall thickening, dilatation.

Have a read of this: https://www.ajronline.org/doi/full/10.2214/ajr.184.1.01840249

I used to cycle, sometimes, with a doctor acquaintance who reads MRIs: this is specialised stuff.  Probably only one X-ray expert per teaching hospital would be the go-to person to evaluate a cardiac MRI to prove/eliminate cardiac sarcoid.  I *suspect* that early cardiac involvement would be very difficult to prove/disprove, and significant cardiac sarcoidosis without other systemic manifestations is really unusual, but not impossible.

Not what you want to read, I'm sure.

MRI and Pet Scan

by justjoe - 2021-09-01 09:52:15

I just had an MRI. The cardiologist and electro cardiologist that originally diagnosed me and installed the pacemaker never mentioned sarcoid, but wanted to do the MRI to see if they could figure out why I needed the pacemaker, so I assume that was one of the things they were looking for.

I also went to another cardiologist for a second opinion, who was very helpful in explaining what was happening and potential causes. He noted sarcoid as one possibilities, said the MRI I had scheduled was the first step in determining. The MRI came back and was negative and the original cardiologist is now chalking my sic sinus syndrome and to unknown causes.

But, the other cardiologist is having me do a pet scan--I've scheduled a PT/CT Heart Perfusion and Sarcoid. He said the pet scan is much more sensitive, although because of that more likely to provide a false positive. So start with MRI, and if nothing shows do the Pet. So that is the course we are on. 

He also noted that even with pacemaker there is a slight delay in the impulse from my upper chambers reaching my lower chambers, and said that even a very teeny amount of inflammation could cause that, so with the pet scan they are looking for signs of something minimal. I have no signs of scarring or anything unusual that has been found to date. He also mentioned amyloid as a possible cause, but I think for the most part has already ruled that out.

Hope this helps--this continues to be a learning process for me. I'll let you know if they find anything, and please let me know how your journey continues.

Investigations for Sarcoidosis

by Gemita - 2021-09-01 11:38:57

John, 

Without a strong indication that you needed investigations for Sarcoidosis at the time your Heart Block was found, I doubt that your medical team would have recommended/carried out any specific tests for it under our National Health Service in the UK.

I believe a PET Scan and/or biopsy would be the next step to take if an MRI proved unremarkable and there was a strong suspicion of the possibility of Sarcoidosis.  I met a patient in the arrhythmia clinic a few years ago suffering from Block + arrhythmias).  He was waiting like me for an EP Study.  They were also going to do an ablation for Atrial Fibrillation until they discovered (by MRI) the likelihood of Sarcoidosis as the cause for his electrical disturbances.  The ablation was immediately cancelled because they said it wouldn’t have helped him and he was given an early appointment to return for a PET Scan + biopsy before they were prepared to discuss a treatment plan.

Has your autoimmune disease been firmly ruled out John as a possible trigger/cause for your Heart Block?  I recall you were asking questions about this. You are certainly challenging the medical profession for answers but sometimes finding that elusive cause for an electrical condition requiring a pacemaker, is not always possible and “acceptance” of our condition can be very powerful in itself as a tool for “healing”.  I admire your persistence for answers though John and if anyone can succeed, it is you.  As always, I wish you well.

I have added another link (.pdf) for further reading.  A complex condition that can be difficult to detect:

https://pubs.rsna.org/doi/pdf/10.1148/rg.2018180053

Thanks all for you input

by quikjraw - 2021-09-01 15:28:49

The last few months have strangely nothing at all to do with my heart or pacemaker. I have been overwhelmed by a flare of my autoimmue disease. 

I have multiple joints stiff and swollen, dactylitis in my toe and still an ongoing lower abdominal pain every day.

My colonscopy has shown ulceration in my terminal ileum which could be early indication of Crohns disease but very mild I have yet to find out for sure!

Long story short, I am now on Methotrexate, it was my third dose today. (They said my back was not affected so biologics were not yet an option, which is fair enough)

I was looking for some information on Methotrexate for my autoimmune disease and then stumbled on a website that suggested that cardiac sarcoidosis is thought to be an autoimmune response and then I started wondering if this is common in this community.

I have done some more reading this evening and it would seem the most sensitive test for it is PET scan as JustJoe mentioned.

The treatment for Cardiac Sarcoidosis is Prednisolone, Methotrexate and biologics! All the same treatments as for my autoimmune disease.

I am asking the hospital if I this was definitely ruled out and if not will they consider having me checked. 

Thanks for the link Gemita I have started reading it already and it is clearly a difficuly disease to diagnose.

Cardiac Sarcoidosis

by BigWid - 2021-09-05 09:35:56

Hello Quikjraw, 

I was diagnosed with systemic sarcoidosis (heart, lungs, liver, spleen, lymphatic system and bones) in June of this year.  I did have a PET scan (which lit up like a Christmas tree), but was not started on the therapy's you describe until a lymphoma rule out was confirmed.  Because of my lung involvement, which I have zero symptoms from, my care team chose to perform a lung BAL and biopsy which confirmed the sarcoidosis.  My only indication of having sarcoidosis was going into VT.  I'm lucky to live near a care team that has many years of diagnosing and treating sarcoidosis.

Hope that helps, good luck with your attempts to get it ruled out.

cheers

PET Scan is the test to rule out Sarcoidosis

by PacedNRunning - 2021-09-21 02:43:58

PET scan is the best to rule it out.