My journey with Sarcoidosis

[Veebeegeebee]

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,

[Luvlyhubby]

So sorry to read about your horrendous Sarcoidosis journey. It really is a weird disease. I was diagnosed with 'Tattoo Sarcoidosis ' in my r/eyebrow 2018 after having them tattooed & topups over a few yrs. I did so much research about having them tattooed & finally went to a lovely lady,who I had so much trust in as she helps oncology patients. I don't blame her, obviously I was just very unlucky. I've been advised not to have 'fillers' nor anymore tattoos (never had them b4 or since!) I do have Botox ,which I've done for many yrs (now 71). Really hope you don't have to go through anymore nightmares with this disease

[nascar4433]

Oddly, I was also diagnosed with Pulmonary Sarcoidosis in 1996! A first cousin was diagnosed with it 2 years later, and she also has Cardiac Sarcoidosis. At the time, they said there was no familial link, however now literature says it is likely part of familial autoimmune connections. I was on 80mg Prednisone for a year, and periodically take it for short times with flare-ups. Have CHF & Stage 3b CKD, both likely due to the Sarcoid. Recently diagnosed with Lymphocytic Esophagitis via biopsy through EGD w/Dilation. Scant literature that the LE is caused by Sarcoidosis, although it is considered likely due to an autoimmune disease. Even 28 years after diagnosis, there's still more unknown than known about it. Thankfully my opthalmologist always checks for any damage, and my cardiologist & nephrologist are familiar with it. Although not confirmed, I believe my kidney disease is from the Sarcoid. Recently had a Chest CT that showed a 10mm nodule in my right lung, which I'm hoping is Sarcoid related and not something worse. Being referred to a pulmonologist. Haven't seen one in many years since symptoms were controlled by PCP. Good luck to you. Hope "someone" starts doing more research into causation & links to other health issues.