Anyone have Cardiac Sarcoidosis?

[dcoughey]

I have a pacemaker, two ablations and 5 or six cardioversions under my belt. I also have a lot of undiagnosed symptoms that, according to my research, are explained by Cardiac Sarcoidosis that I am able to control myself with Prednisone, Nitroglycerin and Lyrica.

[Loobyloo34]

My husband had sarcoidosis of the lungs and heart. He never really suffered any symptoms apart from In the winter where he would get a chronic cough and wheezing bronchitis that he couldn’t seem to shift till the weather warmed up. They can treat with chemotherapy and steroids but because my husband was already on these for cancer (he lost his battle this sept 😢) they just took biopsies to confirm the Sarcoidosis at the top of the lungs. They reckoned he was undiagnosed for years with it.

[OLdCroc]

Well it is good that you can control the issues that crop up with meds yourself. Sarc is a condition that few understand or know about. I was diagnosed with Sarc at about 30 (lungs) and it has just about run its course now i am North of 65. My sister has it and one of her sons also has it. My sister had some issues with her heart and has been and still is on cortisone regularly. I had a heart scan some years ago and there was a large s-shaped scar on the side nearest a lung and the doc felt this was probably caused by the sarc over the years. Who knows? Then AF, cardio versions and an ablation and have now had a left atrial appendage clip fitted.

Going back to the sarc it used to flare up and cause breathlessness and random pains all over my body. Once you get a handle on the disease you realise that almost anything that crops up is caused by it. I always found i was trying to educate doctors rather than the other way round. I understand that it now classed as a disease that is a disability if that makes sense.

Take heart that it can burn itself out although my sister is in her 70s but still suffers. Three is aSarc society which you could google if you want to know any more.

Cheers and best of luck.

[3Squirrels]

Hi, I have just been told I have Cardiac Sarcoidosis. I have had an ICD fitted to deal with the heart rhythm problems which were the main symptom I was having. I am waiting for an appointment to see specialists at the Brompton hospital but really know very little about the condition yet or what the treatment plan might be. Are your doctors investigating possible diagnosis of cardiac sarcoidosis for you?

[dcoughey]

I believe I have had it for many years; but it wasn't diagnosed. The doctors had no explanation for the symptoms or the fact that Prednisone and Nitro resolved those symptoms. My Cardiologist is now convinced that it is Cardiac Sarcoidosis and believes the Pacemaker and Ablations have acted to minimize the damage. Although I knew that Prednisone worked, I refused to take it as I didn't want to mask the symptoms so that the doctors could find the root cause of my issues. When they gave up and I learned that Cardiac Sarcoidosis was the possible root cause, I started experimenting with the Prednisone, Nitro and Lyrica until I arrived at a solution that is working. I discovered that two Nitro patches pretty well keeps things under control although I do have to take a spray of Nitro every once in awhile to control the cough; especially, after I take the patches off at night.

Other than two blood tests a month apart that showed "Angiotensin Converting Enzyme HI 137" both times, I have been unable to verify the condition. They won't do an MRI as I have a pacemaker even though it is MRI compatible. They won't do a PET scan until I have an MRI first. I thank God for the Nitro, Prednisone and Lyrica and the doctors that prescribe it although they have no idea what they are treating. They just know that they work.

I have to emphasize that I rarely have to take Lyrica as the Nitro seems to be almost as effective. The same goes for the Prednisone. I only take 1 50 MG dose every month or two and the times are getting longer in between.

I would be interested in hearing if anyone else has tried Nitro to see if it will have as great a result as it has with me. It has no side-effects at all compared to Prednisone and Lyrica.