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Old 01-12-2013, 07:11 AM   #1
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june0527 HB User
Go back on imuran or ? What else--advice needed.

I have chronic sarcoid (dx 1998). It was quiescent until about 2009; had a pulmonary flare treated successfully with prednisone; early 2010 another flare--this time referred to pulmonologist--did prednisone then added plaquenil which changed to imuran (dizziness with plaq) then tapered off pred. Everything was going well until July 2011 when I developed an enlarged neck node which was dxed as lymphoma by biopsy. Did 6 cycles of rchop chemo; after chemo my sarcoid flared badly; have been on and off prednisone and can't successfully taper off without recurrent symptoms. So now I'm faced with staying on 20 mg+ prednisone long term or trying imuran again. I'm afraid to take the imuran or any other immunosuppressant for that matter, but both my pulmonologist and oncologist feel I shouldn't stay on prednisone until all other options have been exhausted. Am I crazy to consider imuran again? Are there any other options out there others have tried?

 
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Old 09-16-2013, 09:41 PM   #2
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James Mark 1963 HB User
Re: Go back on imuran or ? What else--advice needed.

Why be afraid of getting back on imuran just because it suppresses your immunity? You would prefer prednisone? Prednisone suppresses your immunity too. Further, the prednisone will cause you to gain weight. It will deposit fat on your belly, face, and around your neck. The increase in the appetite is very hard to combat. Further, prednisone pulls calcium out of your bones. It has other cognitive and psychological side effects that affect people differently and differently at different dosages. I hate it. Everytime I have to get back on prednisone I fret it. I think the biologicals are the way to go. It appears to me that the biologicals are much easier on the body than prednisone. I've been taking the biologicals for over 15 years. I get back on the prednisone only when I have a serious flare up that I need to get under control.

 
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