undetectable - woohoo, have some questions though

[WorkedForMe]

Was 3a with viral load of 450,000 some, Liver function tests consistently normal or a point or two above. Did 6 months of interferon plus ribavarin. Undetectable at 3 months and at six months. Therapy interrupted for a week due to multiple episodes of superficial thromboplebitis. The concern at that point seemed to be a very low white blood cell count. On the day of what would have been my last injection I blew a pulmonary embolism and was hospitalized for eight days on heparin. But I am not asking about the PE so much as whether the interferon could have caused either the PE or the superficial thrombophlebitis. I was told that clotting side effects had not previously been reported?
Yet I know that there are effects on the blood count, sO I guess I am looking for comment here.

Last question, more widely pertinent probably.... I know this is an area where information is changing quickly, so I am wondering about the assurances I am getting from various people that you never really get rid of this it goes into remission. But if I do a web search I can still find sites saying you just have to live with it, which appears to no longer be true (?) so! what's the longterm prognosis for someone with the type of numbers you see above?

Also, on a more personal note, if the virus likes to lurk in this or that corner of the liver and my blood, it would seem, was rather sluggish, this does not sound good. Or am I worrying unnecessarily? I'd hate to have that stuff again.

[KathleenG]

"whether the interferon could have caused either the PE or the superficial thrombophlebitis. I was told that clotting side effects had not previously been reported"

I don't know about the interferon causing the clotting side effects, but I would ask about having an endoscopy done to see if you have varices if you have cirrhosis (because this could be a possible cause of the clotting).

[doll face]

congratulations- You worked for it (tx) and it worked for you ! All we can hope for now is that it stays away. We don't know for sure that it is gone and not hiding somewhere so don't stess on the what ifs at this point. Enjoy SVR for what we do know.

[WorkedForMe]

thank you very kindly everyone for your thoughts. The PE actually, well, I was lucky, I guess, the point is it was caught in time and I may have no permanent effects at all.

The SVR - yes, it was really sweet when I got the news, both times. I had been so tired for so long and I was pretty sure I was getting better and then at times I thought I was fooling myself.

It was like getting my life back, it really was.

It's probably a measure of how miserable I was that the interferon did not seem that bad. But I think I was pretty lucky there too. Genotype 3a only requires six months of therapy so I substantially competed treatment. I was tired, distracted and felt like I maybe had the flu. But I didn't throw up and barring a pretty good case of chills and fever the first dose, I was mostly ok.

So I am glad I did it, but it's easy for me to say. I had felt terrible for years without knowing why and then when I found out I said wow! and I can be cured?? Even a maybe was an improvement, because as I realized at the time I would at a minimum be less sick for a while.

But it would be cool if it was over for sure :) and I have won.

Dana

[Docsgold]

I don't have answers to your questions, just wanted to congratulate you on being SVR.  And hope your health is better after such a devestating illness (PE).

[mikesimon]

Congratulations.
I don't have a clue about the PE.
Some studies show a persistance of the virus after SVR.

"HCV RNA was detected in macrophages from 11 patients (65%) and in lymphocytes from 7 patients (41%). Viral sequences were also detected in 3 of 11 livers and in sera from 4 patients. Viral replicative forms were found in lymphocytes from 2 and in macrophages from 4 patients. In conclusion, our results suggest that in patients with SVR after therapy, small quantities of HCV RNA may persist in liver or macrophages and lymphocytes for up to 9 years. This continuous viral presence could result in persistence of humoral and cellular immunity for many years after therapy and could present a potential risk for infection reactivation." (HEPATOLOGY 2005;41:106-114.).
PMID: 15619235 [PubMed - as supplied by publisher]

Many studies show that there is no recurrence of active hepatitis c after achieving SVR and that overall health as well as hepatic health improves with clearance. SVR is the best we can hope for at this point so my advice would be to stop worrying. That doesn't mean that you shouldn't stay abreast of the developments in hep c and maintain an open mind - but for now RELAX. Good luck Mike

[cuteus]

I plan not to worry about compartmentalization of HCV or boogey man HCV. Some studies have shown no HCV in the liver of SVRs years later and some have shown its presence. Some studies show presence in extra hepatic tissues, but can't prove HCv reactivation from these sources. So, until there is a definite proof (all studies concurring) that these other sites with hcv RNA presence can trigger a relapse or that the few strands found in SOME svr individuals years later are triggering a comeback. I PLAN NOT TO WORRY and to live as if I am cured.