Oops, we weren't supposed to give you interferon!

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/15/2007 7:51 PM (GMT -7)   
I've developed autoimmune problems in addition to my liver problems and my rheumie went through all my old records and it turned out that I was never completely tested for hepatitis C, only surface antigen and inconclusive RIBA and completely non-inflamed normal biopsy with a note on it that said "wouldn't make call". 
 
Meanwhile they are telling me I will have permanent liver damage in a year if I don't take interferon alpha (this was in 1993).  They also knew I had a high ANA and hashimotos hypothyroid, both they told me was due to hep c.  I have vitiligo and hyperpigmentation and that was supposed to be from hep c too.  Everything was going to be wonderful once I took interferon.  NOT.  I had the worst side effects anyone has seen. 
 
When they did give me a PCR test during and after treatment for years and years it is always negative and half my family reacts positive to surface antigen but negative to PCR and all have severe fatty liver disease.  Apparently, the onset of my fatty liver disease was very severe, and possibly I was struck with some type of unknown autoimmune disease, they are still trying to figure me out and the interferon made me so much worse and they cant tell what messed me up more. 
 
Talk about a screw up!  So I went through interferon tx, lost my reproductive organs, suffered greatly and have had several surgeries afterward, for nothing.  Unreal.  My fatty liver is so much worse now and I'm afraid like most members of my family it will progress no matter what I do, these next five years will be the tell all. 
 
One nice thing is that there is recent news that Plaquenil, an antimalarial that is processed by the kidneys and mild, seems to inhibit tumor necrosis factor, a chemical that causes cancer, so that this relatively mild drug may actually prevent cancer.  This is exciting news and I hope that word gets around and research in this direction continues.  I haven't posted here for a while, I hope everyone is doing as well as can be.  Best wishes and thoughts and prayers.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/16/2007 3:35 PM (GMT -7)   
Marji, I have never known of hep C causing vitiligo or hyperpigmentation. Maybe it's time to see a different hepatologist?

Connie

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/16/2007 5:05 PM (GMT -7)   
Thanks, Connie for your kind reply. I switched long ago, I had the worst gi guy in the world, he was awful, but the only one I could get on my insurance at the time. I'm just now, 13 years later, finding out that I was misdiagnosed and that they didn't do all the testing they were supposed to do.

Unfortunately, interferon isn't real great for AI disease and fatty liver, made it much worse, and my family is hit very hard by it anyway. Also, you are right about the vitiligo and hyperpigmentation, that should have been the first clue I had autoimmune disease, my dermatologist says. I was diagnosed with polyendocrine deficiency at the time, but they said it was from the hepc and gave me interferon anyway, which made me a real nut case. Thanks again for your reply. I even had to have a medically necessary abortion while on interferon because I accidentally got pregnant (to my non-infected husbands horror that the protection broke). Its horrible to think it could have been avoided, possibly. They said I couldn't have survived the delivery or later pregnancy and that the interferon hurt the baby and it would die anyway.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/18/2007 1:47 PM (GMT -7)   
Marji, I'm glad you have a good GI doc now. That's sad about the pregnancy, but it probably would not be a healthy baby...and you weren't well, either.

Best of luck to you in the future.

Connie
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