Hepatitis C

[snowman]

I was wondering if anyone else has had personal experience with Hepatitis C & its treatment?

DH will be starting treatment very soon and I want to be as prepared as possible for the upcoming side effects, etc...

He was diagnosed about 2 years ago but put off treatment as we had our upcoming wedding and a lot of other life events that were not conducive to treatment at that time.

His physician says he is a great candidate for the treatment - he will be on both interferon & oral meds. His viral load is only in the low thousands, thankfully.

I have been tested twice and am negative, thank god. My doctor says I need to be tested yearly until he is in remission.

So, if anyone has any stories/advice/etc... on Hepatitis C, I would be so very appreciative. I know it is not going to be an easy road for the 3-6 months he will be in treatment but we need to be prepared.

[IrisHope]

Did you say your husband has had hep c for two years now without treatment?

[snowman]

Yes - well he was diagnosed two years ago, but possibly has had the virus for MANY years but it was never discovered (dormant).

[Asha]

i have a friend who contracted hepatitis while in africa. i don't know which strand she has, but she has been healthy now for years. she started receiving treatment immediately after she found out she had hepatitis. i didn't want to pry too much into her life, so i don't know details about treatments and her specific symptoms. i do hope that you are being careful bc hepatitis is much easier to "catch" than aids. i thought that some strands could be spread through saliva. i could be wrong, but i do know that there was a time when my friend thought that her friends would have to be tested based on what strand of hepatitis she had bc we had shared drinks and lipsticks.

[IrisHope]

Yes - well he was diagnosed two years ago, but possibly has had the virus for MANY years but it was never discovered (dormant).

Wow, that's a long time. Have you been tested?

[snowman]

As far as I have read, Hepatitis C can only be transmitted via blood. The other forms - Hep A and Hep B are more contagious.

[snowman]

Wow, that's a long time. Have you been tested?

As I mentioned in my first post, I have been tested twice and am NEGATIVE. Most recent test was in October.

[Asha]

here's is the cdc's website describing hepatitis c. they have a lot of information there.

http://www.cdc.gov/ncidod/diseases/hepatitis/c/plan/index.htm

[snowman]

Thanks Rebjc for the site reference. I have done some research and know many of the side effects of treatment.

So, DH will be getting his prescription filled in the next week; has to have an EKG; has to have an eye exam; has to meet with a social worker (as many of the side effects are mood related); has to have Hep A & B vaccinations... (He has already gone through multiple lab tests, a liver biopsy - which was negative thank god)

I guess it would ease my mind if I heard personal stories/advice... Maybe there is a Hep C online support group out there?

[SusieQ]

Thanks Rebjc for the site reference. I have done some research and know many of the side effects of treatment.

So, DH will be getting his prescription filled in the next week; has to have an EKG; has to have an eye exam; has to meet with a social worker (as many of the side effects are mood related); has to have Hep A & B vaccinations... (He has already gone through multiple lab tests, a liver biopsy - which was negative thank god)

I guess it would ease my mind if I heard personal stories/advice... Maybe there is a Hep C online support group out there?

A very close relative of mine was diagnosed in 2004 with Hep C (type 1), the most common of the Hep C's but most difficult to treat (I believe the success rate of tx with this type is only about 20-30%). At the time she found out it was estimated that she had contracted it over 27 years prior (in her teens). It was very difficult at the time b/c as results came back on viral load (very high) and liver biopsy (a lot of damage) things did not look good. A lot of the info that we all read up on was very discouraging. To make a long story short she went on the Peg-Interferon and Ribaviron combo and now 1 year after treatment ended she is officially "cured". This means her viral load is undetectable (even using the newest viral load detectors) and being that after so long off tx and the virus has not been detectable this is what they consider cured. According to the tx team she only has to return every few years for testing (I think 5). Research also shows that once the virus is eliminated that the liver can slowly become healthier, and regenerate healthy tissue.
Depression is one of the very common side effects of the medication; she was placed on zoloft as a precaution which worked well for her. Also energy level and feeling very tired was another side effect. She was able to let her job know and with a medical act that is in law she was able to take time off unpunished as needed, although she still was basically able to continue working throughout the time.
That's all I can think of right now. There are definitely a ton of message boards and info site where you can find really good info and support from. When she was diagnosed our family was so surprised that such a life threatening illness gets so little attention in terms of education and prevention programs. Anyways, hope this helps.

[Jazz]

I don't have any personal experience, but my best wishes for easy-as-possible treatment are with you and your DH.

I googled and found these message boards (with chat rooms): Janis and Friencs (http://janis7hepc.com/our_chat_room_and_message_boards.htm) and Hep C Palace (http://heppalace.net/). Also, I found this page: Peter's Hep C Links (http://www.gmavt.net/~folder1/hcv.htm), which has a "forums" section (under support, in the left column), and a list of blogs.

[numberlady]

My mom was diagnosed with Hep C about 2 years ago also. She decided to forgo treatment for now because she has no effects from the virus, no liver damage, and very low (for someone with Hep C) viral load. She is holding out hope that there will be more moderate treatments within the next several years. In the meantime she has stopped drinking to help her liver.

She had absolutely no idea how she might have contracted the disease. The only "activities" that are suspect were in her 20's, almost 30 years ago.

snowman Good Luck to your DH. I would be interested in how the treatment affects him for if/when my mom opt to do it.

[snowman]

SusieQ
Thank you so much for your story. It definately gives me hope that this will be treatable. His viral load is low and the type he has (I believe it is the "b" type) I guess responds really well to the treatment. So glad to hear your friend is well now.

Jazz Thank you for your well wishes... I will definately be checking out those web sites.

numberlady
Your mom sounds just like DH in how this was a very unexpected diagnosis. DH has also stopped drinking (about 4 years ago) but I know that the urge to drink is worse with the interferon & riboviran treatment as well as depression which runs in his family. Guess I am more worried about the psychological side effects of the treatment than the physical ones. He is pretty tough when it comes to physical ailments. Currently, he suffers no ill effects from the hepatitis that is why we have waited 2 years for treatment as well. But, just to be safe, we decided it was best to "get it over with now" than for him to have damaging effects on his liver later if he goes untreated. Best wishes to your mom!

I will keep updating with his treatment process. His next appt is Jan. 12 for EKG and social worker appt as well as learning about how to administer the injections.

Thanks everyone!

[ejs]

Does your DH know how he got HepC?

You should contact the American Liver Foundation office closest to you. They usually have support groups. (www.liverfoundation.org)

[Sare79]

My dad has Hep C, as well as a few other things he contracted through a tainted blood supply. He has had this for about 8-10 years. I find with his medications, they cause uproarious mood swings. I don't see my dad all that often, but I know that the medications cause him to be perfectly happy one hour and then I will get a phone call a few hours later with him in tears. He has never had any previous issues with depression, either. His viral loads have been extremely low and then they get nice and high again, so it's been a bit of a roller coaster ride.

I wish your DH all the best with his treatment.

[snowman]

Does your DH know how he got HepC?



No - we have no idea... although he has a lot longer past than I... probably something he did in his past in the 70's or 80's. Either way, it was a shock to us both. Just glad I am negative and will keep getting myself checked until he is "free" of the virus. I used to be a blood donor until I found this out, so it kind of bumms me out that I can't give blood anymore.

[shimmerstar]

My mom contracted it through a blood transfusion when my brother was born 22 years ago. Scary stuff. She didn't find out until the mid 90's, and has not had treatment. She is very, very healthy through diet and exercise, and had low viral count, etc. She struggles all the time with the decision to treat or not. She has been told that the success rate is not very high, so she must have the tough type. Every time she is tired, or has a small pain she attributes it to her liver failing- she is quite worried about it.

My cousin has it also, and had the treatments. We are not that close, so the only thing I know is that it really wiped him out. My understanding is that interfuron is like chemo- is that right?

I wish you and your husband good luck with the treatments! Keep us posted- I'm interested in hearing how it works out.

[ejs]

No - we have no idea... although he has a lot longer past than I... probably something he did in his past in the 70's or 80's. Either way, it was a shock to us both. Just glad I am negative and will keep getting myself checked until he is "free" of the virus. I used to be a blood donor until I found this out, so it kind of bumms me out that I can't give blood anymore.

From what I know, your DH will never be free of the virus.

[snowman]

From what I know, your DH will never be free of the virus.

I used the word "free" to mean that it will be in remission. I realize he will always have the potential for a recurrence just like one would with cancer. Sorry for the confusion :o

Thanks Shimmerstar for your story & words of encouragement. I am really nervous about the treatment side effects. I don't think DH realizes how significant of a treatment this will be. Hopefully, all of his blood counts will be good after 3 months of the treatment. I need to be very strong for him during this time, so I am trying to stay positive. Not to mention, gear myself up for doing ALL of the housework, etc... as he will not have the energy. I tend to get crabby if he is not participating in the chores. Time to be the "model" wife and start cooking & cleaning more often!

[snowman]

Well, DH had an appointment with his virology clinic last week. Prior to the appt, he had an EKG which went fine - no problems detected.

But, unfortunately, the doctors do not want to start treatment for him until he can get two days off per week IN A ROW! We already bought his treatment medicine - the interferon injections & ribaviran. I kind of knew that he would get sick & run down with the medicine and questioned him about his schedule that same week. But, he pretty much told me that "he would deal with it once he found out how the meds made him feel". Well, the doctor doesn't think he should start yet. DH is currently working 12 days in a row (sometimes double shifts mixed in too). He is the head of his department and they have had a few open positions for months. So, that leaves him to have to pull the extra shifts. Needless to say, he doesn't get every weekend off. At best right now, he is getting every other weekend off and that is it.

So, we are very bummed about this postponment in treatment. He wanted to get it over with finally.

The next step is for him to get his boss to get a good ad in the paper for help. He needs staff bad! Once he can get staff to cover the shifts, he will call the clinic to get started with treatment.

Oh, plus, they want him to have an eye exam first. So, that is scheduled for the end of the month.

[snowman]

Just a quick update-
DH started his "treatment" yesterday afternoon. He was taught how to inject the interferon into his belly (fat) and has to do that once per week on Friday afternoons. Along with that, he has to take 2 pills twice a day (Ribaviron) with food. I guess the latter is what has the most side effects.

So far, he hasn't experienced any side effects yet. Although it has been less than 24 hours. He has to go back next week for lab tests and will be monitored at least monthly for labs.

He is supposed to drink 90 oz of H2O per day to flush out the toxins from the meds. Yikes - that is a lot of water and DH is a coffee drinker which is highly discouraged. He was able to cut back to 4 cups of coffee this morning, which is a lot better than his usual 10 cup pot! :eek:

Will keep you posted on his progress and I may need to come here to vent every once in a while if I get stressed from all of this.... :)

[Asha]

thanks for updating us. that's good news that he has started his treatment. i hope all goes well.

[snowman]

Hi... Sorry I haven't updated in a while.

DH is now going into his 8th week of treatment. He is doing remarkedly well so far.

Has had a few physical side effects like nausea, thirst, tiredness, but nothing too drastic. He has had a few psychological side effects as well. Namely, irritability - being on "edge" a lot, some depression but nothing too severe.

Good news this week:
His doctor called and said that the 6 week blood tests came back and the virus is gone right now. :D That is a good sign! They will test him again at the end of treatment (he only has 4 more weeks) and if he is still negative for Hep C, then he will be done with treatments and will be in remission! Yeah! I'm so glad he did this now rather than waited until his liver was affected as it would have been more difficult to treat and the side effects would have hit him harder.

[Jazz]

Glad to hear your DH is doing well! I hope you're hanging in there as well - one month to go! :)

[maxandmolly]

My step-father has Hep C. Apparently, a huge % of the guys who went overseas to VietNam came back with Hep C, due to the "air shots" (as s-dad calls them) that they were given for malaria. So, he's had it for the better part of 30+ years now. He's had a couple nasty, nasty flare ups the last couple years, with sky high viral loads, jaundice, mood swings, he passed out yesterday and was taken to the hospital by ambulance. According to his VA doctor, it's time to decide on treatment. They claim a 40% success rate-I guess success being defined as remission-but have told him the 6-9 month treatment will leave him essentially unable to work or do much of anything other than lie on the couch. Time on his hands is a dangerous thing for an alcoholic and addict like my s-dad, so he & my mom are extremely torn about treatment. Anyone else with a more long-term patient on their hands?

[snowman]

So sorry to hear about you s-dad, maxandmolly. I can relate about the final decision to start treatment. Although, we were very lucky that DH was really healthy when he found out about his hep C. We waited 2 years to start treatment and he still didn't have any negative effects from the hep C.

I'm sure that when one experiences more hec C symptoms and their viral load is higher, than the treatment takes longer to work. As well as it probably leave the patient with worse medication side effects. We were prepared for the fact that DH would possibly suffer from side effects, but were surprised that they have been minimal so far.

You never know how the person will do until they just start doing it. It was very scary thinking about this at first, but now, we are so glad he did it. Just knowing that he may be virus free for a long time is worth it.

If I were your family, I would just make sure s-dad gets a lot of advice from doctors about the pros & cons of going through this treatment at this point in his disease. So true about the alcohol & drug issue with "time on your hands". Maybe he wouldn't have to take the time off. I guess it would depend on how his treatment made him feel. My DH works on his feet all day (he's a chef manager), and he has only taken 8 hours sick time so far.

One thing to remember, the psychological side effects of the meds may not be very conducive to an alcoholic/drug addict. It makes the urge & desire for substance abuse worse.

gotta go..

[maxandmolly]

Thanks for the reply, snowman. I am getting the impression that the treatment your DH is going through, and what the VA does, may be different. The VA version sounds a lot more invasive, maybe because the guys they are treating have all had the disease for 30-35 years? Also, he isn't particularly healthy to start with. Aside from the flare ups, he's had some ugly episodes the last couple years of eating a month's worth of mother's pills (heavy duty percocets and xanax), fallen off a ladder...basically, the man is a mess! We've told him more than once he should not be allowed in public, and never, ever, around heavy equipment or ladders. He can't quite grasp the fact that he isn't 25 anymore. :rolleyes: So I think the treatment is likely to knock him on his ass.
Now if I'm understanding you correctly, the treatment meds themselves bring on mood swings? Mom hadn't mentioned that to me, probably because I'd jump to the same conclusion you did, that it would be a ready-made recipe for disaster and he'll get into whatever pill or drug he can. Which would probably screw up his treatment.

[snowman]

Now if I'm understanding you correctly, the treatment meds themselves bring on mood swings? Mom hadn't mentioned that to me, probably because I'd jump to the same conclusion you did, that it would be a ready-made recipe for disaster and he'll get into whatever pill or drug he can. Which would probably screw up his treatment.

If your s-dad is going on the interferon & ribaviran treatments, than there are LOTS of psychological side effects. The nurse practioner even gave DH a "hotline" phone number to call if he is experiencing suicidal ideations! :eek: So far, DH has had mood swings that are tolerable (for me).... and some depression symptoms. I think working is good for DH right now because if he were home by himself doing nothing, I think the depression would be worse.

And, most likely, if your s-dad has hep C symptoms and the disease is more advanced, than YES, the treatment is probably a lot longer and more difficult to get through.

DH is now on the last 4 weeks of his treatment. We are hoping that this will be it and he will have another negative result next month!

[snowman]

Update...

DH took the last interferon injection today... or so we thought was the last. This has been 3 months of treatment and going really well without any big complications.

DH has tested negative for Hep C TWICE so far. When the doctor called the other day to tell him that he was negative, DH said "so then I am done with the treatments, right?". Well, it seems the doctors have some sort of "new" research that suggests that the dosage of the interferon and ribaviron needs to be stronger if the treatment is only for 3 months! So, they have decided they want DH to continue the treatments for another 3 months despite him testing negative twice. :confused:

:( DH is very dissappointed at this new information. We don't really agree with what the doctor is telling us, but we don't know enough about it either.

What is even more frustrating is that the "doctor" at the clinic has NOT even seen DH since the initial diagnosis over a year ago. When DH goes in for his visits, he always sees the nurse practioner.

So, the plan now is that DH will continue to medication and at his next followup appointment, he is going to demand to see his DOCTOR (not the NP) to get this "new research" information.

I hate to be a devils advocate, but one side of me wonders if the clinic is just stringing DH along so they can get more insurance money out of him. Why on earth would he need to continue the treatments if he tested negative twice already? They charge over $100 for followup visits and he goes every month.

Anyways, so much for good news that this is all done & over with...
Will keep you posted.

[blessed02]

I wanted to draw your attention to some recent drug therapies that have had promising early tests:

Drug cuts hepatitis C virus up to 97pct


Sun May 21, 12:37 PM ET

Viropharma Inc on Sunday said its experimental drug, being developed with Wyeth Inc., cut levels of the hepatitis C virus by up to 97 percent in a small 14-day clinical trial.

The drug was given for 14 days by itself to patients infected with the virus who had not been previously treated with other medicines. The drug is designed to block an enzyme called polymerase that the virus, which can cause fatal liver damage, needs to replicate itself.

Patients in the Phase I trial twice daily received 50 milligram, 100 milligram, 250 milligram, 500 milligram, 1000 milligram, or 1500 milligram oral doses of the medicine, called HCV-796, or received placebos.

"Peak antiviral response was achieved at doses of 500 twice daily and higher," Viropharma said in a release, and the medicine was well tolerated. Mean virus levels were cut by 1.4 log to 1.5 log -- or 96 to 97 percent -- in patient groups receiving the three highest doses of the drug.

The amount of viral reduction, however, is less than the greater than 99 percent reduction that has been shown in previous clinical trials of another experimental drug being developed by Vertex Pharmaceuticals Inc..

[snowman]

Just a quick update....

DH has been on the ribaviron & interferon treatment now for almost 6 months. He has one more injection (next Friday) and two weeks worth of pills to go. Needless to say, we are pretty excited for this to be all over.

The doctor has tested his blood every month for the duration of the treatment. Every test so far (knock on wood) has shown the Hep C undetectable. So, after this last bit of treatment, DH will just have to go for a 6 month check and then every year after that. The doctor thinks there is a very high probability that the Hep C will be undetectable for the rest of his life.

The nurse & doctor have been shocked at how mild DH's side effects from the meds have been. DH only occassionally complains of headaches. After the first three months, he seemed to start tolerating the side effects better. He hasn't had flu like symptoms since the first month or two. He has had no weight loss (actually has gained some) nor has he lost much hair (another side effect). He hasn't even developed a rash or skin sores, which is also a typical side effect. We worried about the skin issue because he has very sensitive skin and gets rashes easily.

I think the biggest toll this treatment has taken is on his emotional health. He is usually a very good natured/funny person to be around. Not that he isn't that way at all anymore, but he definately gets irritated at little things a lot more than usual. He doesn't joke around as much or seem as "happy". As far as major depression symptoms, he hasn't really expressed that he has felt that bad. I'm in hopes that his typical funny self will come back after the medicine is out of his system.

I'm thankful I was able to post this experience here. Just want to let anyone know that if you or someone you know has Hep C and needs treatment, it is not the end of the world. If it is treated in its early stages, most likely the easier one can get through the treatment without a lot of problems.

[snowman]

Finally, DH's Hep C treatment is officially over! :)
We are so glad that he has completed this treatment and everything is looking really good! He has a 95% chance that the virus will never be detected again.
Now that the treatment is over, he has to go for blood work every 6 to 8 weeks to check for any virus for the next 6 months. Then, after that, we think he will have to be checked every 6 months to a year.
He's very lucky that he got through the treatment without any major side effects. It was a long 6 months, but he is glad that he did it.
:)

[keska]

Congratulations! I hope all the tests stay clear in the future.

[Jazz]

Congratulations! You must be so happy. I hope you have your funny DH back soon. :)

[Liz]

Congratulations! That's wonderful he is finished with the treatment. Good luck in the future.