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Re:liver sarcoid

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Hi Pomy,

I’ve had extensive liver involvement. They

diagnosed mine (I actually have a color photo of it) when I had my gall bladder

taken out two years ago. The surgeon took the picture and gave it to me. It

had Sarc white nodules all over it and they said it obviously was full of them

also. It looks like a big pink blob with white polka dots! LOL

They’ve always been able to see if my sarc is back in the liver and other

organs by doing a special CT scan. You might ask about that. If you

don’t like steroids and you have what is considered to be a severe case

of sarc, some insurance will pay for the Remicade infusions. My United

Health Care paid, right away. I started doing methotrexate injections

along with Remicade infusions almost 2 years ago. I had Sarc in just

about every place it can possibly be. The Remicade seems to have put the

Sarc at bay. There is no sign of it anywhere right now. My

rheumatologist is starting to wean me off of it, because he wants to see if it

will return. I refused to do steroids as I’m very prone to diabetes

(had it during all pregnancies and family history of it) and also gained 50

pounds from I.V. solumedrol. Lucky for me, my insurance agreed I

was a rare case of Sarcoidosis that needed all the help I could get and paid

for the Remicade no questions asked. I hope you can find what is

happening and if it’s your liver or not.

Diane in Texas

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