anyone know about sarcoidosis?

[daisymay]

My ophthalmologist suspects sarcoidosis. Anyone familiar with it?

[GgcJap]

Hi daisymay,

I got this off of Wikipedia as I was interested too. Although I don't have it, it sounds like a better option than Sj?gren's.

Sarcoidosis is a disease involving abnormal collections of inflammatory cells that form lumps known as granulomas.[1] The disease usually begins in the lungs, skin, or lymph nodes. Less commonly affected are the eyes, liver, heart, and brain. Any organ, however, can be affected. The signs and symptoms depend on the organ involved. Often there are no, or only mild, symptoms.[1] When it affects the lungs there may be wheezing, cough, shortness of breath, or chest pain.[2] Some may have Lofgren's syndrome in which there is fever, large lymph nodes, arthritis, and a rash known as erythema nodosum.[1]

The cause of sarcoidosis is unknown.[1] Some believe it may be due to an immune reaction to a trigger such as an infection or chemicals in those who are genetically predisposed.[3][4] Those with affected family members are at greater risk.[5] Diagnosis is partly based on signs and symptoms, which may be supported by biopsy. Findings that make it likely include large lymph nodes at the root of the lung on both sides, high blood calcium with a normal parathyroid hormone level, or elevated levels of angiotensin converting enzyme (ACE) in the blood. The diagnosis should only be made after excluding other possible causes of similar symptoms such as tuberculosis.[6]

Many people clear up without any treatment within a few years.[1][7] However some may have long term or severe disease.[7] Some symptoms may be improved with the use of anti-inflammatory drugs such as ibuprofen.[8] In cases where the condition causes significant health problems steroids such as prednisone are indicated. Alternatively, medications such as methotrexate, chloroquine, or azathioprine may occasionally be used in an effort to decrease the side effects of steroids.[9] The risk of death is between one and seven percent.[7] There is a less than five percent chance of the disease returning in someone who has had it previously.[1]

If you do have it and only it, feel reassured that you have a chance it may only last a few years.

GgcJap

[eye2dry]

hello.

My husbands aunt and uncle (they are twins) both have sarcoidosis.
They have had it for over 20 years.
His uncle has it mainly in the kidneys and uses prednisone daily to
keep it in check.

His aunt has had it affect her heart,,..with which she had some type of surgery to
treat that area of her heart. She also had it affect her one eye and they treated that area
with a steroid injection to the lesion on her eye.

Nothing real serious yet and hopefully never. They have just turned 80 years old.

Good luck.
shelly

[jazzlover]

I never knew it affected the eyes. Wow.

Some who have Lyme disease also have sarcoid .. so you may want to check that out in case it applies. If you are in  a high risk area for Lyme, be sure to get tested through Igenex Lab.

[Sharon]

What are your symptoms that he suspects it?
My rheumy wants me to rule it out as well and take the ACE blood test.

[Linda196]

I was DXd with Sarcoidosis in 1979, and at the time it was "good news" because my initial DX was Hodgen's Lymphoma, and with a toddler and a newborn, a nice self limiting "burn itself out" in 18 months inconvenience seemed great. Problem...it wasn't self limiting in my case, and eventually led to chronic inflammatory poly arthritis, granulomatoses kidney masses, very slow healing skin lesions (talking months), uveitis, stroke-like symptoms and a sed rate hovering around 180 for years, threatening circulation and organ perfusion.

At the time I chose to treat symptomatically, not wanting to get on the steroid merry-go-round at 28, even if it was "just for a few months". There's no way of knowing if that would have made a difference, and my Rheumy feels it wouldn't have, since I've gone on to collect several more immune mediated/autoimmune diagnoses, and he tends to call my overall condition "immune dysfunction" ( not deficiency, all counts are normal range or high and T-cells are very high) rather than list the individual DXs.

I've been lucky not to have infiltrates in lung or heart, although both are still  monitored. Since the DX of Sjogren's, when I finally climbed on the merry-go-round, my symptoms overall have reduced, and my sed rate is controlled below 60 for the first time in decades. I specifically asked if aggressive treatment of the Sarc would have prevented the following DXs, and his answer made sense  to me, " you've developed PMR while being treated aggressively, so no, treatment earlier wouldn't have stopped what appears to be a relentless attack".

I personally classify Sarc as three entities, the self limiting burnout, the chronic remit/relapse, and the enviable didn't-know-I-had-it-til-a-routine-chest-xray. Like Sjogrens,it can be very mild right through to devastating, and needs to be assessed and treated accordingly, and the patient needs to be aware of the potential for  neuro and cardiac involvement so those symptoms aren't dismissed.

[daisymay]

Sharon--
Based not on specific symptoms I'm having, but based on some findings from an eye exam coupled with having sjs. She's not convinced that's it, but looking in to the possibility.