Some of you may have read my previous threads asking about Tysabri and the rebound effect and what I'm dealing with.
Today I have had yet another monkey wrench thrown at me. Last year on December 17, a biopsy of my liver was done when I underwent a RNY gastric bypass.
My surgeon told me that the biopsy showed fatty liver which would resolve as I lost weight. I had no reason to question his answer because doctors don't lie, right?
Fast forward to this October when I found out that the biopsy showed that I had nonalcoholic steatohepatitis with cirrhosis. I had been on Tysabri since October 2008 and had had my last Tysabri treatment on September 6 of this year because I tested JCV+.
The liver transplant evaluation person just called me about my referral. She told me that because I was JCV+ I couldn't have the transplant.
I'm a little flabbergasted at the moment. I haven't seen anything about this in any of my research on liver transplantation and I'll be asking about this when I travel to Mayo Clinic in Jan.
Has anyone else heard about this? I know liver damage is a side effect of Tysabri and my LFTs have been all over the place for a while now but not too seriously elevated. If I had known about the cirrhosis in December I would have immediately stopped Tysabri then.
It just seems odd to me that if a medication can cause liver damage and if you become JCV+ while on that medication that you no longer have the option of receiving a liver transplant.
Thoughts anyone?
It seems like if this was an issue patients should be monitored more closely and we'd be made aware of this potentially life altering issue.
Flummoxed as usual,
J
Today I have had yet another monkey wrench thrown at me. Last year on December 17, a biopsy of my liver was done when I underwent a RNY gastric bypass.
My surgeon told me that the biopsy showed fatty liver which would resolve as I lost weight. I had no reason to question his answer because doctors don't lie, right?
Fast forward to this October when I found out that the biopsy showed that I had nonalcoholic steatohepatitis with cirrhosis. I had been on Tysabri since October 2008 and had had my last Tysabri treatment on September 6 of this year because I tested JCV+.
The liver transplant evaluation person just called me about my referral. She told me that because I was JCV+ I couldn't have the transplant.
I'm a little flabbergasted at the moment. I haven't seen anything about this in any of my research on liver transplantation and I'll be asking about this when I travel to Mayo Clinic in Jan.
Has anyone else heard about this? I know liver damage is a side effect of Tysabri and my LFTs have been all over the place for a while now but not too seriously elevated. If I had known about the cirrhosis in December I would have immediately stopped Tysabri then.
It just seems odd to me that if a medication can cause liver damage and if you become JCV+ while on that medication that you no longer have the option of receiving a liver transplant.
Thoughts anyone?
It seems like if this was an issue patients should be monitored more closely and we'd be made aware of this potentially life altering issue.
Flummoxed as usual,
J
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