Anyone coinfected with Hepatitis C and HIV?

[RonG20YRSpoz]

Hi: Looking to chat with others who are coinfected as I am and have undergone combination treatment.  Supposedly over 50% of people with HIV have HCV so I am looking forward to some results, maybe not!  I hope you are lucky enough not to be. 
Anyway I am doing well with the viral loads of both but wanted to talk about treatment issues with coinfection.
Thanks
Ron

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[Matty the Damned]

Hey Ron,

Welcome. We do have a number of members who are coinfected like yourself. Matty the Damned has always managed dodge that bullet.

I'm sure you'll have a conga line of people lining up to chat soon.

Best regards,

MtD

[RonG20YRSpoz]

Thanks MTD, I was hoping to get some responses not that I was hoping there are lots of co infected people.  I appreciate your reply and I am glad you dodged that bullet, it was a good one to miss!

Thanks

[dixieman]

I have a friend in Atlanta that is hiv+ and also infected with HCV... last I heard he was having interferon treatments along with his anti-virals for hiv... he's doing well so far...

[dixieman]

I have a friend in Atlanta who is hiv+ and co-infected with HCV also... he was taking interferon treatments along with his anti virals for hiv and doing well so far...

[CaptCarl]

Ron,
   I am not infected with HepC, however, I am infected with HepB, and HIV. I don't know if this is close enough for you. It can be frustrating, because there is very little research being done with the HBV/HIV coinfection. Most all of it is of the HCV variety. I have been infected with both for 19 years now, and until the last year, everything was fine. I was diagnosed with Liver Cancer last Nov. and spent the next 7 months trying to get the Cancer Center here to do something. They finally did, and though it was painful, they got rid of the cancer (for now). The next stop on this particular train is at Transplant Station, in San Francisco. I will be going there in November, the week after Thanksgiving for my physical evaluation. After that, it's anybody's guess as to when this operation will actually take place. I'm sure that my insurance company has a hit out on me at this point. It's far cheaper than the surgery
   So far the treatment with the Hep has complimented the HIV regimen, and both sets of bloodwork are looking pretty good these days. Be careful if they want to put you on Interferon. I was on it twice, and it did nothing for me but make me sick as hell, and suicidal to boot. I don't think that I would ever take it again. To be fair though, I have had several friends who tolerated it very well, and it did wonders for them. Normally, I have the constitution of a lab rat when it comes to meds and treatments, but this was the exception to the rule. Good luck with this mess, and keep us posted as to how things are going.


Capt.Carl (who wants his old liver chrome-plated to use as a doorstop after they yank the fucker out)

[david25luvit]

I'm coinfected with HIV/HCV but have so far resisted the advice of my doctor to go on drug therapy for the HCV.
First of all I don't think a psychartrist will sign off on it for me and second I'm not sure I wanna take a drug that
can cause a pyschotic break or severe depression (talking about the Interferon).  However there are others here
who have....

Guess I'm a big sissie...........but then I've had SSI (Steven Johnson's Syndrome) and am twice to three times more likely
to get it again so I always resist a new drug....never knowing whether it will send me back to the hospital or to the morgue.
But that's me.................

[Ann]

Hi Ron,

I think I got the poll fixed.

I don't quite fall into any of your catagories. I did the hep C treatment in 2002/03 and I've been undetectable (hep C viral load) ever since. What would you like to know about my experience with the treatment?

Ann

[RonG20YRSpoz]

David:
Don't feel that you are in the minority in not wanting treatment.  I have been on treatment 4 times, 48 weeks each time, and each time the virus was suppressed and in two cases has gone into remission, once for 2 months, another for 4 months.... but it returned.  It is a tough one to beat, especially Type 1 which is the prevalent strain in the United States.  But the liver biopsies I had done; on diagnosis 10 years ago, and the one I had done 6 months ago, showed no progression in liver damage (fibrosis).  Each time you go on therapy you suppress the virus and allow healthy tissue to regenerate.  Because of this regeneration I have kept from progressing to cirrhosis and regained a lot of healthy liver tissue.  It is tough but I was determined to do it and had great support.  Also the antidepressant I was on was mild and I didn't notice any side effects (from that), because you can easily get depressed as you are pretty much flu-like 2 days out of 7.  Body aches, nausea, diarrhea, fatigue but they also treat all of those with pain medication, anti nausea and anti diarrheal drugs, and anti depressants if you need them.  It sounds overwhelming but it bought me 10 years of life is how I look at it.  If you have a history of depression, which I did prior to starting, you need a great support system more than anything.  Companionship and definitely someone to encourage you to eat and do things...move around... as you don't want to eat or get off the bed.  Also you can get bone marrow suppression but they have medications which brings your red and white blood cells back up.  After saying all of this I still feel it is worth it.  I am now on an experimental treatment where I take half the dose of just the Interferon and none of the Ribavirin (the 2 drugs that constitute combination therapy) which is the standard treatment now.  At half the dose once a week my viral load is way down and my liver enzymes are normal.  I still have side effects but not to the degree that I used to get them and the meds to control them work.  For me a big part of the battle is mind over matter, if I allow myself to lay in bed and do nothing I get body aches and depressed.  I set it up so now my friends and family come by and bring casseroles for me so I can microwave food and also I am on protein supplement drinks.  If I read, watch DVDs and spend time on the internet I get distracted from my feeling shitty basically.  But you definitely have to be prepared and have that support system set up in advance because you don't have the energy to expend on too much. 
The important thing also is to know that there is a new protease inhibitor in Phase II trials, Vertex, that is twice as effective as the Ribavirin, preliminary studies show  around 80-90% remission rates compared to around 30-40% sustained remission now.  A lot to go through to find out a couple of months later it came back, but think of it as giving your liver a vacation while you are on it.  So if you have a viral load that is not totally out of control and more importantly have a liver biopsy that does not show cirrhosis or a lot of fibrosis then you have time to wait for this new treatment which the drug company says in 2 years hopefully.  Fortunately Hep. C virus is a very slow moving virus, it takes 10-20 years from diagnosis to do serious damage.  Just definitely avoid alcohol at all costs.  The HIV meds are enough for the liver to handle as it is the organ that metabolizes the drugs. 
(I learned so much about this because of all of the medical seminars I have attended and I am also a nurse and my doctors talk to me very frankly about information they bring back from the liver conferences around the country.)
So after such a long winded writing, the bottom line is find out how much fibrosis you have in your liver and the gold standard to get that information is to have a liver biopsy not an ultrasound.  Liver biopsies are really so simple, I can say after having 3, they sedate you with Versed which is an amnesic drug and you don't even know what is going on and it is over.  No pain, in and out of short stay surgery in a few hours and you can even ask your doctor for something for anxiety prior to the test, take it on the drive to the hospital (yes, have a designated driver) and you will do fine.  I only wish more people would not talk about how horrible the whole process is.  For me having dental work done is worse than having a biopsy.  And if you do start the medication feeling flu like symptoms for those few days, well I will not tell you that is a trip to the beach but I did it for 4 years and still went back on as a chronic treatment along with my AIDS meds and I live a normal life, driving and going out with friends to do social things.  I have some good days and some days where I allow myself the luxury of staying in bed.  You are as strong as you want to be, that sounds like I am saying you are weak if you can't do it.....I am not.  I just see people who develop cirrhosis and are sick and suffering from Hep. C when you can avoid that by having a support system and a good medical team.  It takes planning but that is what your doctor and his/her staff is for, to plan this support for you. 
Don't get down on yourself if you can't do it, but think about it.  I swore I would never do it again each time but found myself turning around and gaining the strength to give it another go.  Whatever you decide the best of luck to you.  If you feel that you can't do it consider starting yourself on some herbal support for your liver. Some people swear by it. A lot of people take Milk Thistle and there are other liver support formulas that are used but I only know specifically about Milk Thistle as I used to take it in between my time spent on Interferon.   Some people swear by that, again I think it is what you believe and try not to project negative thoughts.  It boils down, as everything in life does, to living one day at a time.  I understand your hesitation also having had SSI as that is a very serious syndrome and you must think of that whenever you start a new medication.  Good luck and feel free to contact me if I didn't overwhelm you already. 
Ron

[david25luvit]

Not at all Ron....you didn't overwhelm me.  A big long winded for my short attention span these days but I got thru it.
Thanks for the info.....I found it very interesting and very informative.  Good luck to you!

[SFtraveler]

Just joined the forum.  I am co-infected.  I've had HIV since 1985 but didn't know I had Hepatitis C until Feb. 16, 2006 after my health suddenly collapsed.   
I ended up losing 40 pounds, all my energy and muscle mass and was hospitalized three times, twice for hepatic encephalopathy.
Somehow, I survived (through the power of prayer, I believe).  HIV is under control, but my CD4 count has been too low to start on Pegasys to remove the Hepatitis C from my system.  My HIV doctor tried every trick in the book to boost my CD4 count, including Isentress.  He finally prescribed Fuzeon and after three months without success, my CD4 count suddenly jumped to 193.  I am awaiting the results of my latest blood tests to see if my CD4 stays up or rises above 200.  If so, my hepatologist will start me on Pegasys.
Both doctors are amazed that my severely damaged liver (stage 4) has lasted this long and they are anxious to start me on Pegasys before the "bald tire" blows out.
It's been a long journey but I have a partner who truly supports me and a network of more than 75 people (priests, nuns, family and friends) praying for me.  I am convinced that I will make it! 

[Peter Staley]

Welcome, SFtraveler.  Glad you found us!

As you get to know our forums, check out our lessons too, including the one on Hep C coinfection:

http://www.aidsmeds.com/articles/HCV_9984.shtml

Peter Staley
Founder
AIDSmeds.com

[SFtraveler]

Hey, Ron!

Just checking in to see how you are doing.  Have you found the information and support you were seeking?

[red_Dragon888]

I have been exposed and the Atripla takes care of it.

[Ann]

I have been exposed and the Atripla takes care of it.

Red, you must have hep B, not hep C.

Hep C can't be treated by any hiv meds - they have no effect on it. However, there are two hiv drugs that CAN treat hep B - Lamivudine (Epivir) and Emtricitabine (Emtriva). Emtriva is one of the component drugs in Atripla.

Ann

[maddalfred]

  I was given both diagnoses on the same day this past May. Both the HIV dox I have seen since then did not want me to treat the HEP C 1a until I had a consistent Tcell count of above 500 and an undetectable viral load. I take Atripla on top of anti depressants and a million other pills and I suspect they are hesitant to start me on Interferon (the suggested treatment option) because of my severe depression.

I have considered faking it to them because I am worried about the out of control HEP C virus that I am certain replicates exponentially by the day. I was chronically and clinically severely depressed for years prior to this recent rash of crap. I should have never told them that.

I am sorry if you said what you were using to treat your co-infection but if you have, maybe you could repeat it here as my short term memory went into the crapper these past months. I have been taking 40 mg or Citalopram (increase from 20mg two weeks ago) for the depression and am beginning to wonder if maybe I am one of those stupid people that have the exact opposite reaction to anti depressant meds entirely. Sorry, didn't mean to go off topic.

I am glad you posted this question as it gave Peter the opportunity to post a link to the co-infection page I was unaware of. I use yahoo messenger and would be happy to chat with you off the boards about this issue if you wished to.

BTW, I am glad you found these boards or if you have just been lurking, welcome.

Rex