Sarcoidosis

[healme]

Does anyone know anything about this condition and if there is any connection between AF and sarcoidosis?

[10gingercats]

If you are in the the uk you may also want to ring the British Lung Foundation helpline.

[healme in reply to 10gingercats]

I had an ebus last week and awaiting diagnosis. The pain has been almost unbearable and morphine has kept me from suicidal thoughts. Sarcoidosis has been suggested or lymphoma. I must admit I'm very scared.

[10gingercats in reply to healme]

Maybe Sarcoidosis uk can help you re. cardiac problems and Sarcoidosis? In these serious cases of health problems you just have to keep probing .Any and every line of enquiry can /may provide you with useful and helful info.If anyone here has info. I

feel sure they will answer within a day or two.

[etheral]

Cardiac Sarcoidosis can exist without pulmonary involvement. Depending what area of the heart is affected, this can result in dysrhythmias including AFib and VTach. Treatment can involve steroids and implantable pacemaker-defibrillater. Contact a cardiologist, EP, and Immunologist. Hopefully your GP can direct you.

[Alan1947]

I had sarcoidosis in 1992. Swellings on face and nose and apparently scarring on lungs. Some scarring at the back of my left eye. It started to go in 1994 and gradually departed, no thanks to the hospital !

I was seen as a good training model for doctors as apparently most sufferers are black and I’m not !

About that time I started to get ectopics which eventually developed into AF. I didn’t connect the 2 conditions. I had an ablation and am awaiting another.

I’ve wondered since whether the two were connected but have never discussed it with cardiologist or EP so who knows ?

[healme in reply to Alan1947]

I have literally just had the Sarcoidosis diagnosis at 12.45 to be precise and like you it took them by surprise as I am neither black , Swedish or between the age of 30 to 50. Last year I had skin lesions which I blamed on the cocktail of drugs that I had been prescribed for my various heart conditions but if they had taken a biopsy then it probably would not have spread to my lungs and liver.

I wonder if my heart was also affected 3 years ago when this whole awful adventure began.

My treatment begins on Monday thankfully. I know I should be relieved that it isn't cancer but at the moment I am still realing from the thought of taking steroids for at least a year and I wonder how that will effect my AF.

Onwards and Upwards I suppose .

Pleased you survived it though. Wish me luck

[Alan1947 in reply to healme]

I do wish you all the luck going.

I was 45 when diagnosed.

My biggest problem was a swollen nose and red blotches on my cheeks. I sometimes felt fluey but the other internal things worried the medics more than they bothered me. The dermatologist at Kingston Hospital clearly had no real idea what do to with me other than referring me to ENT, Eye hospital, chest doctors etc for seemingly endless checks.

The only time I lost from work was to attend clinics and almost exactly 2 years after it appeared it began to fade away.

I’m left, apparently, with some lung scarring and a weak left eye. Whether the heart nonsense is connected I don’t know.

Anyway all the best for a quick cure.

[healme in reply to Alan1947]

Thanks 👍

[dcoughey]

I have several years of day-to-day records of symptoms, Blood Pressure and Heart Rate at rest from my Omron and Heart Rate from my Kardia, what treatments worked and didn't work, all the times I was in the ER.

Believe it or not, although no one had any idea what was causing my symptoms and could not explain why Nitro and Prednisone stopped the symptoms, why tweaking my Pacemaker could stop or start the symptoms instantly, or why only Nitro and Lyrica would stop the nerve pain and cramping from jumping all over my body, no one would bother to even look at the very detailed report. It was my sister-in-law who heard me coughing in the background while she was talking to my wife who asked what the symptoms were, went on Google and told me two days later to check out Cardiac Sarcoidosis.

I had a Pacemaker installed, because my heart was stopping, and two ablations. I have since discovered that is one of the treatments. The doctors are now providing me with Lyrica, Prednisone and Nitro that I have to control myself because, officially, still undiagnosed after all these years. They are providing it because these are working and they know I don't want to be on Prednisone or Lyrica any more than I can help. That is where the Nitro comes in. I am wearing four 0.4 MG patches totaling 0.16 mg/day and have Nitro spray to use if the cramping starts again.

An ACE test showed a reading of 137. A month later at Sunnybrook hospital it showed 138.

Both Sunnybrook and Southlake Hospital wanted to do an MRI but, even though my Pacemaker is MRI-compatible, they couldn't get anyone to do it. When they tried to get a PET Scan, they were told they needed to do the MRI first. Right now, my cardiologist, who is convinced I do have Cardiac Sarcoidosis, is trying to get a PET scan done. He said he really wants me to go to the Ottawa Heart Institute but he suspects they won't do anything until I get MRI and/or PET scan results. In the meantime, I am treating myself and doing well to the point that at 74 years old, I am now playing competitive racquetball again.

I understand that Nitro is now being given more credence during extensive research.

I just wish the doctors would look at my research with an open my and draw their own conclusions. It is a wealth of information.

[healme in reply to dcoughey]

It's interesting to hear that even though you live in the states and have to pay for your health care that your experts don't seem to be able to pinpoint a proper diagnosis.

I suppose I should be relieved that I know the cause but I am frustrated that all of the earlier symptoms from my heart condition which led to a stroke three years ago and my skin lesions that were diagnosed as eczema (even I knew that it wasn't eczema) they all lead to a Sarcoidosis diagnosis but they don't seem to treat the whole person. Now I am praying that they will start the steroids so that I can start to get better. Who knows perhaps I can challenge you to a game of racket ball once this is under control after all I'm only at the tender age of 65 it should be a doddle for me 😉

[dcoughey in reply to healme]

Actually, I live in Canada and am really thankful that I haven't had to pay for anything. The sad part is that, if they had diagnosed the problem years ago, it would have saved the healthcare system a fortune. We are not strong on diagnosing health issues.

While the Prednisone has proven to be absolutely mandatory, I have also proven that Nitro has significantly reduced the amount of Prednisone needed. In fact, as part of my experiments, there have been extended periods of times over the years, sometimes for months, that I didn't use any Prednisone at all.

If we ever get to meet, I would love to play racquetball with you. I play anything that moves at any level. If it doesn't move, I kick it until it does.

[healme in reply to dcoughey]

👍🤣 Sorry America /Canada My geography is worse than my sporting abilty

[dcoughey in reply to healme]

It is rather confusing when we often refer to the USA as America. Perhaps we should rename Canada as Canada of America?