Heart Sarcoid

[Salmon]

I was healthy until mid-August of this year.  I had a near fainting spell and ended up in the emergency room.  I was told to see a heart doctor which I did.  I had a treadmill stress test and an angiogram.  There was a little blockage that showed on the angiogram but nothing significant.  I then had an MRI of my neck done to see if that was causing the problem.  The MRI was consistent with boney matestis.  They started looking for cancer.  Five days later I had 3rd degree heart block and needed a pacemaker.  For the next 3 mo they tried to determine what I had.  After many, many tests, bone scan, biopsies, ekogram, cardiolite, etc., it was determined I had Sarcoid in the heart and bone marrow.  I have started on 40mg of Prednisone a day. Since I have started the prednisone I have noticed that I can't walk across the room and my heart skips many beats and beats fast.  I called the doctor and they adjusted my pacemaker so I can walk a little better but I still am very slow and have a hard time going shopping.  My questions:    Do you know of any clinics that have treated heart sarcoid?  What is the best testing done to follow=up on how the medicine is doing in controlling the sarcoid?  Would it be the Thallium Cardiolite test?  Does Prednisone cause the heart to skip beats or beat fast?  It mostly happens within 2 hrs of taking the pills or when I am walking and moving around.  Any info on Heart Sarcoid would be appreciated.  Thanks

[mdf]

8/8/2007 - Can your update me on your condition.  I was recently diagnosed with Cardiac Sarcoidosis and am interested in long term treatment plans and prognosis.  

[debra21784]

I don't know in what area you live but all of my cardiac care and complications have been treated by the cardiology and cardiac surgical team at Hopkins in MD.They are the largest teaching and research facility in the world and people do come from overseas for treatment .There is a special international department specificly for theses visitors.It is worth a try.

[CCF-M.D.-CRC]

Dear Salmon,
Sarcoidosis is a chronic, multisystem disease of unknown cause that is characterized by accumulation of T lymphosytes and "granulomas" in various organs.  The lungs are commonly affected as are the skin, eye and lymph nodes.  Approximately 5% of patients have involvement of the heart.  Complete heart block is common and requires a pacemaker.  If there is infiltration of the heart wall heart failure may occur.  The treatment for sarcoid is steroids but other medications have also been tried.  The overall prognosis for sarcoid is good but if there is extensive involvement of the heart the mortality rate is increased.  I don't know of any place in particular that specializes in the treatment of sarcoid.  It is fairly rare so I would stick with a major university medical center.  It's not established which test is best for following cardiac sarcoid but echocardiography and MRI are commonly used. Prednisone should not be causing skipped heart beats but the sarcoid itself may be causing this.  I would ask your doctor about checking a Holter monitor test to evaluate this.