I first had my first encounter with Sarcoidosis when Uveitis was diagnosed in my eyes in 1996. Treatment for that was with prednisilone drops until the thickening in the eye gel reduced.
In 1997, I developed Granuloma Annularae on my legs, arms and torso. Over a period of 7 years or so they gradually disappeared without any treatment.
In 2013 I was diagnosed with HYPERTENSIVE CARDIOMYOPATHY with preserved Systolic Function, with no regional dysfunction & ATRIAL FIBRILLATION both caused from uncontrolled High Blood Pressure.
I was having falls (put down to BP) but a small lump appeared above my breastbone on my chest. An Xray showed I had a couple of lesions on my lungs and my heart specialist referred me to a lung specialist in Brisbane, where I underwent a PET Scan. So the PET Scan showed all of my lymph glands from neck to groin were involved and I had needle biopsies done on those under my collarbone and in my neck.
The results showed I had Sarcoidosis and because the lung lesions were discovered first it was named Pulmonary Sarcoidosis. The PET Scan also showed I have a Meningioma in the right side of my brain.
The lung specialist started me on Prednisilone - 5 mg at first then up to 10, 20 then 25mg until the nodes decreased in size over the year. I remained on 5 mg daily for about 10 years, then weaned to 5 mg to 1mg daily then stopped.
I have had heart scans done and do not have Sarcoidosis in my heart. Follow up PET Scans show my lymph glands are ok and the Meningioma is stable.
Over the past two years I have developed circular raised patches on both my legs, (not like the Granuloma Annularae I had before), and many, many hard little nodules (looking like psoriasis) appeared on both arms/elbows and now my hands have one or two as well. These are incredibly itchy! I had biopsies done on both legs, forearm and thigh all returning as Granuloma. I now have the familiar Granuloma Annularae again on my waistline.
My lung specialist has had to retire due to family illness and I am looking for a new specialist in Brisbane , Queensland Australia. Any suggestions? Many thanks in advance,
