3 Easy Hep C Questions

[Mike999827]

Hello, I was diagnosed with Hep C in 1997 from either sharing needles approximately for the 6 month period before that or as the doctor thinks when snorting cocaine possibly 10 years earlier.  I guess he thinks being diagnosed with it so quickly after sharing needles shouldn't occur especially with the viral load I had, which since it was so long ago I think it was somewhere between 2 and 4 million (genotype 1).  What do you think?  Further, hopefully another easy question.  I had the Ribovarin/Interferon treatment done in 2004/2005 and it was successful. Lots and lots and lots of side effects but I made it through it.  Unfortunately my thyroid doesnt manufacture enough hormone because of the treatment and I will be on synthroid the rest of my life.  I have read also that the treatment can affect your lipid panel.  Not completely sure of that, but mine is definitely screwed up as to prior to the tx it was not.  What do you think?  One last question.  When I go to any Dr. I tell them that I have Hep C but it is in remission because my tests show no viral load.  Is that the right way to refer to it as?  Thank you for your time.

[Mike999827]

Thank you for your comment and if anybody else reads this reply, thank you for your interest in my particular situation.  Everything is cool about not being aware of my situation: being cured of Hep C.  Lots of Internists never mentioned SVR to me.  I did get referred to one gasteroentologist (that is totally spelled wrong) and he may have written SVR all over the report he prepared but he didn't share that with me nor did the Dr. who referred me to him.  I don't have any angst.  I have to admit I did visit a lot of web sites getting information about Hep C and I never once saw the term SVR.  I am not too stupid so this is just surprising to me that it went on for so long.  Oh yeah, I did the treatment at USC Medical Center as part of a program study and as I think back there were no followups.  If there were they had lost contact with me.  Anyway, oh just to let you guys know even though my name has Mike in it I am actually female.  You weren't expected to know that, but I wanted to let you know.  Thanks for all your input.

[Advocate1955]

Hi Mike999827,
There have been many changes in the last decade in terms of understanding Hep C, how it replicates, how it mutates, how it responds to various treatment medications, what factors contribute to a successful treatment, what factors contribute to a viral break through or a relapse, and which people are genetically more likely to have certain responses.  As others have said above, if your virus has been tested as UND, utilizing one of the newer and more sensitive PCR tests that have low number for the limit of detection (e.g. 12 or less) and you have remained UND for 6 months, then I believe that you are now considered to be SVR.  Years ago, when people were treated and tested, the lab tests were not as sensitive as they have been within the last couple of years, and an individual may have had a PCR come back UND when in reality they may have had a low level of Hep C virus that was below the level of that particular test's ability to detect it.  Learning about Hep C, diagnosis, treatment, options, SVR, how doctors determine what SVR is as our understanding of the virus and its treatment changes so rapidly, understanding the genome science behind the virus and likely treatments, is a constantly moving target.  We all know more than we did a year ago or five years ago.  But the knowledge available to us for learning changes every day.  Our purpose in being members of this forum is to share information and provide support to one another.  Any question related to Hep C that you have is great to ask here on this forum.  I don't think any of are likely to know all there is to know about Hep C, but I'm sure we will all do our best to answer questions with the information that we have at this moment and time given that the research and knowledge base is changing daily.  There are lots of great websites available too that have great information as well as post current research and results of studies.  Please let us know if you would like links to some of those websites, and ask us anything, we'll do our best to answer.
Advocate1955

[nonsensical]

Good, me either. :)

[pooh55811]

Exactly, it's about the OP. And none of us should not be judging or accusing the OP.

Games???  Hmm...I don't play games.  

[nonsensical]

Pooh, you are judging me and accusatory as well.  I see it one way and you read it another so we'll agree to disagree.  If Mike has any further questions I'll be glad to answer them to the best of my knowledge which is usually fairly accurate.  It's not about me, it's about the OP so let's not play this game anymore ok?

[nonsensical]

It's very hard for me understand that a gastroenterologist or hepatologist if that is indeed the specialist who treated Mike would not know the meaning of sustained virological response.  I can understand if a GP or even an Internist was not informed but for someone to prescribe those types of medications and monitor the person for 48 weeks and then not tell them post 6 months or a year post that they are cured just eludes me.

I have been quite supportive and extremely helpful to Mike and my comment about educating himself early on was to state that he could  have avoided 8 years of angst if he had read, even a little, about hepc and treatment outcome.  

It's water under the bridge now and best for Mike to just enjoy his SVR.  I doubt the answer he seeks is out there anyway.

[pooh55811]

"And those of us that do acquire the knowledge to make informed decisions empower ourselves."
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I absolutely agree.

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"I do believe if you had done a little more research on hep c years ago you would have known the protocol 8 years ago dictated that anyone without a detectable viral load after 1 year was considered cured or SVR."
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On the other hand, while true, that last statement, sounds judgmental, accusatory.  What is the point of telling someone that had he done more research 8 years ago, then he would have known that anyone without a detectable VL after a year was considered cured or SVR. Well, for whatever reason, he did not know. Now he does. Mike came onto this forum for information. We should be able to give correct/accurate information without being judgmental or accusatory and without placing blame on the person asking the question.

This is exactly why many people stop posting questions. Instead they send their questions via private message to people who they feel will not be judgmental or accusatory.

[jules2551]

"Also, many doctors are not well educated enough and don't know the meaning of a sustained virological response (SVR) and because they are not well informed they may actually believe the virus can return.  As stupid as that sounds, it does happen."
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As you stated above "many doctors are not well educated".  I think that would prove difficult for the patient to understand the terminology if the Dr. does not understand it.  And yes I agree "those of us that do acquire the knowledge to make informed decsions empower ourselves". 100%.  But I think that is why Mike is here on this forum to ask questions and get a better understanding so he can make informed decisions regarding his health.  

Possibly being more supportive would be more helpful.  

[willbb]

  I agree that is always best to be our own advocates and keep up to date with whatever is at our disposal when it comes to our own health

Will

[nonsensical]

And those of us that do acquire the knowledge to make informed decsions empower ourselves.  

[pooh55811]

Everyone's circumstances are different. Not everyone has access to information at their fingertips. Not everyone knows which questions to ask. What is in the past, is in the past. So you did not previously know this information. Neither did many others. However, what is important is that you are asking the questions now and you are educating yourself and learning the correct information.  

Best of luck going forward free of Hep C.

[nonsensical]

Perhaps using the terminology "remission" and not SVR with your doctors was not definitive enough and they questioned whether you were actually cured. Doctors are prone to testing if in doubt.  Also, many doctors are not well educated enough and don't know the meaning of a sustained virological response (SVR) and because they are not well informed they may actually believe the virus can return.  As stupid as that sounds, it does happen.  Whatever the circumstances you have no need to concern yourself.  You are cured!

Mike, I do believe if you had done a little more research on hepc years ago you would have known the protocol 8 years ago dictated that anyone without a detectable viral load after 1 year was considered cured or SVR.  Now, anyone who is UND six months after completing treatment is considered SVR.

[Mike999827]

Hi, thanks for your input.  I thought I would talk with you since you were the last one to comment that used the term svr which I now know to mean sustained virological response.  I can't believe that it took me 8 years to be told, no less from a hep c community member, that because the tx worked it is called svr.  I was using the term remission and in my mind, as with cancer, it could always come back.  Throughout those 8 years doctors have done the test to check the viral load to make sure the virus remains gone, hence reinforcing my idea that it is in remission and could come back.  What I was also told by the community member (and you are probably saying why isn't she talking with that person) is svr means I am cured, which to me means that the virus is not going to come back EVER.  That confuses me in that why are the doctors doing this test (there have been 3 so far) if I am cured?  You would think that of everybody concerned they, 1st would have mentioned the term, svr, to me and, 2nd would have told me that we don't have to do these tests because once the treatment has shown that it succeeded, the virus has left my body.  Anyway, can you help me with my confusion?  Thanks!

[orphanedhawk]

Hep C is passed from blood to blood. The virus is incredibly small and can be present in a drop of blood much to small for the human eye to see. It can live for up to 4 days outside the body. This is why there is a danger of sharing toothbrushes or razors.

People have gotten hep C from transfusions, tattoos,  medical procedures, from manicures, dental procedures and many in the military from airjet gun inoculations particularly before the 1989 when the virus was first identified.

[cthopeforall]

Every time you share a needle you are at risk of hcv. From the first time to the last time. People in the medical field have been infeted with just one prick. I find the odds going up with each year of continued IV drug use interesting because as alot of us know it is a gamble every time we share IV needles, it just takes that one time and our lives are changed for ever. But as others have stated above it does not matter how or when we contracted it we all want to rid our bodies of this horrible virus. Best to all those who are still fighting, those treating, others waiting to treat. I pray for svr to all. Thoughts and prayers to all. CT.

[Mike999827]

Thank you so much for directing me to webmd which I really count on for truthful info.  Yep, sharing those needles will get you every time.  I am so sorry for taking so long to reply.  I am getting use to medhelp.

[Mike999827]

Hi Gal, All I can say to you is that you remind me of me except I think you have a bunch more years on me.  I really appreciate your reply and all the different scenarios.  I shared needles, lotsa lotsa lotsa needles for a 6-9 month period.  I got Hep C because of that.  Fortunately it was diagnosed early.  The Doc found the antibody in my blood.  I wonder what test he did to do that.  Anyway, thinking out loud.  Yes, glad I did the tx and in SVR instead of remission (got the answer to that question from somebody else.  I am sorry for  taking so long to get back to you.  I am getting use to medhelp.

[Mike999827]

Hi...thanks for answering my question.  I now have a definitive answer where before I knew what I was saying was not right, so, thanks again.

[Mike999827]

Hey willbb...sorry it took me so long to reply...trying to understand medhelp...and that is not going as quickly as I would like.  Yeah...the method in which the Hep C began is just a curiosity of mine but as I went through my comments, the last one said that certainly the virus can be diagnosed as quickly as sharing needles in the previous 6 month period.  Makes sense.  I don't know what it takes for a virus to get going in your blood; at least the Hep C virus I don't...well, as a matter of fact, being the non-doctor that I am, I don't how any virus in my body starts.  Ok, got that out of my system.  Hey, willbb, that offering of your's that begins with "A higher plasma..." is really intense.  I am honored that you would think I could understand something like that.  The next one, albeit lengthy is a little more tolerable.  Thank you for answering my question and sorry again for my slow response.

[nygirl7]

FYI I was on Synthroid for almost seven years. Hypothyroid. Last month I got very ill and wasn't really taking my pills but I didn't feel any different. So I decided on an "(ill advised accd to my doctor) experiment and stopped taking them.

Just got my TSH level back...........after a month being off them.......it's exactly the same as it was when I was on them.  Will it hold? I dont know but I intend to get frequent tests and see.  I can't see how after that long my thyroid could come back to life but if it did - one less copay and pill a month would be fine with me.

Not suggesting this course of action for anyone but perhaps maybe there is some hope for us.  Time will tell.

best of luck Deb

[pooh55811]

Congratulations on being cured from Hepatitis C .

Will is correct, it does not matter how you contracted Hep C. Plus he is correct on the other information he posted.

I would, however, like to add clarity to the information posted by one of the other posters.

"Risk of infection due to IV drug use still remains high. Fifty percent to 80% of new IV drug users become infected within 6 to 12 months of starting to use IV drugs."

http://www.webmd.com/hepatitis/risk-hepatitis-c

Each additional year of use, adds to the risk of contracting Hep C.

So you very well could have been infected within the 6 months period prior to diagnosis.

But it does not matter in the long run. What is important is that you were diagnosed and treated, and are now free of Hep C.

[willbb]

you inject I.V. drugs, for a year, then you have a 50% chance of having contracted Hep C.   Now, for every year that you continue to use I.V. drugs , there is an increase of 10% chance, that you will be infected. So, if we do the math, we find that by the 9th year of using I.V. drugs, there is a walloping 90% chance of having it.
   Many people might argue, "but I always used a brand new needle".  Okay, but if you were socializing with other I.V. drug users, then it is also possible to have been infected by sharing something such as the spoon, that your friend had used (within the past 4 days, or longer,if the spoon was wet) , a used cotton-ball, or a glass of water, that somebody else had drew water up into a used syringe with.
    Or what about this scenario;  Somebody didn't have a spoon handy, so they added water to their meth/coke baggy, and drew up, with a syringe that they had used before. They may have had some drugs still left int the bag, and put it on a mirror, and dried it out, and then re-bagged it, for re-sale.  This bag of redried powder, put into a baggie, would still be infectious, for four days or more, because a small zip-lock bag is occluded from air. The next person to inject this bag of drugs, could there-fore be infected.
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I find that excerpt interesting....

To the OP:   Again  .....:How and when you contracted HCV  is really not relavant.

What IS important is that you treated and from what you say successfully so...congrats on that !

best...
Will

[BoceprevirGal]

  Hi there. I can understand why you are curious, concerning the first part of your question, about when you caught Hep C. I think we all go thru that.
      I live in California, and grew up here in the 70's and 80's, and yes,
I went to tons of parties, as a teen, and in my  twenties, where the coke straw scenario was extremely common place, and know many people who did partake in that ritual.  
   This is just my own personal little "Katy's World Statistic:, but of all the people I know, from that era, none of the snorters have Hep C (maybe they do, and havent been tested) and the people I know who used needles, well, we all seem to have Hep C. But then again, perhaps we were tested, because we admitted to our Docotrs that we shared needles. Maybe the coke snorters werent tested, because they left out the fact that they used drugs, when they filled out forms, for the Doctor.
   Me, personally, I snorted stuff out of straws, for 12 yrs, and never had elevated enzymes. I shot up twice, and my enzymes were elevated, and I found out I had Hep C.
   This is how the statistic goes:
If you inject I.V. drugs, for a year, then you have a 50% chance of having contracted Hep C.   Now, for every year that you continue to use I.V. drugs , there is an increase of 10% chance, that you will be infected. So, if we do the math, we find that by the 9th year of using I.V. drugs, there is a walloping 90% chance of having it.
  Many people might argue, "but I always used a brand new needle".  Okay, but if you were socializing with other I.V. drug users, then it is also possible to have been infected by sharing something such as the spoon, that your friend had used (within the past 4 days, or longer,if the spoon was wet) , a used cotton-ball, or a glass of water, that somebody else had drew water up into a used syringe with.
   Or what about this scenario;  Somebody didn't have a spoon handy, so they added water to their meth/coke baggy, and drew up, with a syringe that they had used before. They may have had some drugs still left int the bag, and put it on a mirror, and dried it out, and then re-bagged it, for re-sale.  This bag of redried powder, put into a baggie, would still be infectious, for four days or more, because a small zip-lock bag is occluded from air. The next person to inject this bag of drugs, could there-fore be infected.
    My aim is to educate people about how to avoid catching Hep C, so I apologize to anyone on the Forum, who finds this topic upsetting.

[nonsensical]

Using the word remission after successfully treating HCV is an antiquated term.  I've seen many people and even physicians refer to the virus as in remission simply because the viral load is low or there is minimal liver damage.  The exact terminology is SVR or sustained virological response and SVR under any terms means cured.