RE: Re:liver sarcoid/ Diane in texas

[Guest guest]

Hi Diane,

Thanks for the letter.

I'll know in a few weeks what I have, I hope. My dr said it might be hepatitus c but he's not sure.

I don't know if they'll give me remicide here, It sounds scarry!

Pomy

To: Neurosarcoidosis From: dianeaja@...Date: Wed, 17 Sep 2008 07:32:27 -0500Subject: Re:liver sarcoid

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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