Hepatitis C, the treatment

[Nite Owl]

My son was diagnosed with Hep C six months ago. He is 21, shows no signs of the virus at all, the liver biopsy showed no damage just some inflammation. He has type 2b with a low viral load. After the blood work, the biopsy, getting the approval for the drugs from the insurance he is finally getting to start the treatment. The doctor said that there was about an 80% chance of a negative blood test when the treatment is completed. He is determined to not let it interfere with his life being normal but the side effects that I have read seem pretty difficult. He will be on pegylated interferon and ribaviron. Has anyone been through this treatment or been a caretaker of someone who has? What is it really like to go through this for 24 weeks? What can I best do to help him?

[mopinko]

1. my BIL is fighting this

i can't be a lot of help, as i don't talk to my sister all that often. however, he has been battling it for several years.
he took these drugs as part of a drug trial. the biggest problem he had was a personality change. (or perhaps it is more accurate to say- an inflammation of his worse tendencies. i think the guy is an a-hole.) just my uneducated suspicion, seeing him when he was on that, the dark circles under his eyes, and the exhausted look on his face, i would guess it was disrupting his sleep. to a lot of docs, when you say sleep, they hear something like- voodoo. he did take welbutrin for this, but it only helped a little.
iirc, on the first go round, he did get down to a zero viral load, but that did not last. he has had at least 4 rounds. last i heard, he was looking at another round, but my sister was a little sick of it all.
so far, tho, it has kept his liver from deteriorating. he has managed to work, and function. (although he works from home/on his own schedule.)

to help him, i will say- sleep. why on earth docs look at you like you are just rationalizing your pathetic life when you start talking about sleep, i do not know. but make sure that this issue is taken seriously. (i could write a book...) if he needs some ambien or something, make sure he gets it.

some people seem to carry this virus for a long time without a lot of ill effects. some don't. modern medicine offers a lot of promise. but at this point i think there is still a lot of trial and error.
add chicken soup and sleep to whatever the docs say is my not very educated opinion.

best of luck to the both of you. keep us posted.

[Nite Owl]

2. The doctor told us

to watch for depression and suicidal tendancies and call him immediately if he needed something but he said it usually happens if the person is depressed to begin with. It's sort of scarey to think that a med can do some biochemical trip on your mind. My son is in college full time and working about 20-30hrs a week so I'm thinking one will have to stop. He seems to think that he can control this by being determined not to let it happen. Maybe that's a good thing, maybe if he can't the fatigue and pain will make him feel more out of control. I picked up the drugs and he sees the doc on Monday and wants to start next Saturday. If you aren't in a trial or have good coverage this treatment is out of reach. I have the coverage and he is on the plan until he is 25 so I hope this works for him. Without the coverage the damned drugs cost $3000 a month! His doctors seem pretty good so he tells them he is having trouble sleeping I think they will give him something.

He probably got this from a blood transfusion he had as a baby, he had leukemia. At that time, in the 80's there weren't tests for this. He has blood work done at least once a year and this was the first time it showed up. We were sort of shocked that after all this time he could have this.

He had this four times? They didn't say anything about that being a possibility. I hope, even if your BIL is an a-hole that he is doing ok!

[mopinko]

3. man, get a kid through something like that, and get bit all this

time later! shit! talk about sucks. BIL had the same thing. many years after the transfusion it turned up pre-op to knee surgery.
sleep and docs is sort of a pet peeve of mine. i have had so many crazy things in my life and family due to sleep. and so many frustrations with docs who act like it is reading chicken entrails or something. i think it is very often the mechanism for depression, and often very treatable. but if you point to that, you are in denial. oy. just remember that one of the big indicators of bad sleep is not lack of sleep, but too much sleep. it can so quickly spiral into a really bad place.

take care, both of you. best of luck.

[Cobalt Violet]

5. A good doctor should help him manage his side effects.

Some people get a lot of side effect and take a lot of thing to manage them. Pain meds, anti-depressants, anti-anxiety, sleep meds. etc. Not that he will feel wonderful. He stand a good chance of clearing the virus so what ever it takes to get him to stick to treatment would be good. Even if that means reducing his work or college work load. It's hard to predict how it will effect him.

[Nite Owl]

11. That's what the doctor told

him too. Some people sail right through and others just cannot take the side effects. He's young and in good health, he has no symptoms of the disease at all so hopefully he won't be affected too much. I wish I could do this instead of him though, he's been through so much in his young life already though he doesn't remember much of the chemo. The doctor he is seeing seems good and supportive. His office staff is a PITA though. I've had several arguments with them already. We have been waiting for a month for 'approval' and I called the insurance a few days ago to find out what was holding things up and they were never notified and the treatment didn't need 'approval' at all. The drug did but it came down to sending a fax. Unbelievably the insurance company was the one that took care of everything with the office and fast tracked the Rx and called me to tell me it was waiting for me at the pharmacy. They did all they could to help. I was all ready to sound off to them and it was the office that was the problem and they were blaming the insurance company.

[Cobalt Violet]

6. It sounds like his symptoms weren't managed that well.

I think ambient would've been a better choice for sleep. It also sounds like he may have a stubborn genotype and he may have difficulty complying strickly with the treatment protocal since his side effects aren't being managed well.

[Cobalt Violet]

4. I have yet to go through the treatment.

I hope to soon. It sounds like he has one of the genotypes that is more successfully treated. 24 weeks is better that 48 that some genotypes have to take.

There are some HCV forums that you can visit to get more information than you will probably get here. There are some very kind people on these boards that love to be supportive and helpful.
Here are links from a few that I like.


My favorite and not a drug company sponsored site:
http://www.hcvsupport.org/forum/index.php


And this one is affiliated with a drug company yet still very helpful. Many of the same people in the above forum are in this one too.
http://www.hepatitisneighborhood.com/


I'm glad he got the approval for the drugs. I hope he doesn't have many side effects. Good luck.

[Nite Owl]

12. I bookmarked both of them

and will tell my son to visit and I will too. I hope you can get the treatment you need Cobalt Violet! My son got a folder from the drug company and one of the sheets said that if you do not have insurance or cannot afford the treatment to contact them. He has the folder up in his room, if you want the number let me know. Maybe they can help you.

[Cobalt Violet]

18. Thanks, I may need it.

I just mailed in my application for my state's new insurance program this week. I'm pretty sure I will qualify. But if I don't, I will need that number.


We will see how this new Massachusetts mandatory healthcare thing works out. I'll be the official DU test case for my income level anyway.

[neweurope]

7. My SO and I underwent that treatment, successfully.

We have been rid of the virus for 5 years now, getting tested every year. The SO took the Interferon and Ribavirin for one year, I for half a year (we were on different programs.
The SO worked all the time even though he did feel pretty low, depressive and tired. He also lost a lot of weight. So did I. I could not have worked at all. I felt terrible all the time. Totally tired, freezing,low in spirits, the whole thing.
We took no other medication than Ribavirin and Interferon. Here in Europe we don't take as much medication as Americans anyway :) But I truly think that the liver has enough struggle right now. So what if he's sleepless? So what if he's down (I'm not talking of suicidal, that would be different of course). So what if he looses his appetite? He'll get through it, he's a young man. And it is worth it. We were very, very lucky to get this treatment. All the side effects are long forgotten (unfortunately my weight loss, too ;) ), but we don't have to worry about Hep C anymore.

As to how you can support him: Help him when he wants help, leave him alone when he doesn't or when he feels irritated. If he feels to weak to work assure him that's ok. And be optimistic yourself!

There are relapses, true, but we were told that it's mostly the people who still drink alcohol while under the treatment who relapse. So you have every right to be hopeful! Best wishes!

-------------------------

Remember Fallujah

Bush to The Hague!

[Cobalt Violet]

8. Do you know what genotype you and he had?

I have never had mine tested yet so I can't tell you what I was. How long did it take for the side effects of treatment to wear off?

Thanks for posting that. Outcomes like this give me hope.

[neweurope]

9. I'll have to ask the SO about the genotype and virus

load when he gets home, I've forgotten all that. The side effects wore off just a couple of days after the last shot.

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Remember Fallujah

Bush to The Hague!

[neweurope]

16. We had 1 a with a high virus load.

1 a and 1 b supposedly are hardest to treat but we made it anyway :)

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Remember Fallujah

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[Cobalt Violet]

17. Wow.

That is the hardest for a SVR. Awesome that you two have cleared the virus. :wow: This is very encouraging. Thanks for getting back to me with that.

[neweurope]

19. That dragon shield...

reminds me of something... Does it have anything to do with a French regiment?


-------------------------

Remember Fallujah

Bush to The Hague!

[Cobalt Violet]

22. No, It's the HCV shield pin.

"The pin contains the red and yellow bands representatives of Hepatitis C, along with a vertical strip of green representative of Organ Donation. Centered is the symbol of the Dragon we've come to call the HCV virus itself, All is adorned upon a knightly shield which represents the courageous battle we face in dealing with Hepatitis C as a Hepatic Knight."


http://hcvsupport.org/hcvpins.htm

I ordered one. I like the idea of getting rid of the stigma.

[neweurope]

25. That's a nice idea.

I've never seen it before.


--------------------------

Remember Fallujah

Bush to The Hague!

[Nite Owl]

10. Thanks so much for sharing this

I want to set up a calendar for him, to see that there is an end to it. I try to tell him that this is a small part of his life to give up for better health later on and this is the best time to do this before he has a full time job he can't leave and a family to help support. He understands that but six months in the life of a 21yr old seems like forever to him right now. I've told him that if he wants to stop working not to worry about his bills but he has no intention of stopping work. I hope he doesn't have to because being out with people will maintain some contact with others and some feeling of normalcy for him. He doesn't drink much now, doesn't smoke(anything) and eats well but is thin (not my genes!)

If I may ask, how did you feel after the shot? The doctor said flu like symptoms, fever etc. and to take Tylenol, to do the shot at night and he would feel ok in the am. And on the bottle of ribaviron is says dizziness and may not be able to drive. If he has to give up driving he will drop out of the treatment. I told him that they have to put this stuff on labels and it doesn't mean that it will happen to him and if it does his body will adapt so it might be temporary.

[neweurope]

13. Right after the shot and some hours after it was awful.

So of course we took them at night, after dinner. The SO mostly could sleep, I went without often because, yes, it can be (mustn't be) like a severe flu. We took something like Tylenol, too, but not on a regular basis. I felt some dizziness, but both of us were able to drive all the time.

We also drunk Abrotanum tea (careful with this, take after presciption) and took milk thistle (Silybum marianum) pills, both of which are good for the liver (our livers didn't look all that good). If I had to go through it again I'd also do essential oils-therapy, with all the "good mood" oils like orange and grapefruit and rose, all anti depressants.
Sometimes a massage would have been heaven, but sometimes I couldn't stand to be touched.

Tell him his chances are much much bigger now and waiting for a greater virus load would be plain dumb. And maybe he will get dizzy some days and not be able to drive, so what? That doesn't mean he won't be able to drive the whole time, and if he broke his foot he couldn't drive, either. But as I said it musn't happen at all, we were able to drive the whole time. The doctors do have to prepare patients for what might happen because if you ran into those severe side effects unprepared it would be really bad, but that does not mean that all of it will happen to everybody. Like my SO didn't nearly have the problems I went through.

And once he starts his treatment make sure and tell him he's brave... every time. Men need that ;)
on edit;: the calendar is an excellent idea, I counted the shots, too :)
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Remember Fallujah

Bush to The Hague!

[Nite Owl]

14. Is this the tea?

http://www.ibiblio.org/pfaf/cgi-bin/arr_html?Artemisia+abrotanum

I'll stop at the green grocer and see if maybe they have a tincture, though that would contain alcolhol wouldn't it. It needs a prescription? Could be hard to get here in the states. I'll see what they have. He's been taking the milk thistle since he was diagnosed, one of the first things I found to help the liver. I think someone over on the Health board here said to take that in fact. He likes orange so I'll go get him some candles and one of those oil diffusers too.
What about St. John's Wort for any depression?

That line on the broken foot is perfect!

Do men ever need that! lol
If they ever had to have a baby civilization would end right there.

[neweurope]

15. Yes, that is the herb.

Artemisia abrotanum (syn. Artemisia abrotanifolium). No tincture (yes, alcohol!), just the dried leaves. At least in Germany you don't need a prescription. What I meant was don't take more than suggested: One teespoon for one cup (150 milliliter) water. Boiling water on the tea leaves, wait 5 min, pour through sieve, drink 2 cups/day for 3 months. It's pretty bitter but it helps. Very good for the immune system, activates killer cells. Pretty much everybody in my study group (the only way for me to get the medication) took it.

The orange oil only helps if it is natural, of course, artificial smell doesn't do anything; I'd avoid all kinds of chemicals as much as possible. An oil diffuser would be very good, also bath salt (little bottle, sea salt, some baking soda - good for the skin - add oil, shake, put lid on) if he feels like bathing.

St. Johns Wort is very good for depression, but don't take it without advice from a doctor (and careful, some doctors still think that herbs are pretty much all harmless). I don't know if it is good or bad for the liver, I'ask. The other thing is in order for it to work you have to take it continously for at least three weeks. I understand that you are very worried because you were told about suicidal tendencies but neither we nor the people in the German Hepatitis-Forum with whom we communicated experienced more than depression and most people didn't take anything for it. A lot of them didn't even feel depressed, just generally low.

Ha, I just re-found the link
http://www.hepatitis-c.de/useful.htm
The informations there about all kinds of herbs and other stuff are very useful, we learned much there. Also look at their other pages!
And don't forget to mix yourself some bath salts with orange, rose and geranium for yourself... :hug:

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Remember Fallujah

Bush to The Hague!

[Nite Owl]

20. Thanks for the link

I bookmarked it and printed out the info on the herbs.

I read some of the stories of other patients and their treatments seem very different from what he will be doing. His seems shorter and the shot only once a week. The drug company (Schering) has a 'Be in Charge' program. They assign a nurse who is available 24/7 to call with any questions or problems. She has been in contact with him several times and seems nice. It's a good idea but the distrust of anything 'big pharma'is still there, they seem to be wanting to do some good though.

Tomorrow I'll have some time to stop at the green grocer to see what they have or can get for the herbs and some oils. His birthday is in a couple of weeks and maybe a massage and mineral bath would be a good present! I live right near Saratoga Springs--the spa city so there are many places to go.
http://www.saratogaspastatepark.org/rooseveltbaths.html
http://spas.about.com/cs/usresortspasny/l/aa081003.htm

[neweurope]

21. Who WOULDN'T want a massage and a mineral bath?

As to the link and the stories of other patients: Don't forget that some of these stories are years old and that medication and treatment have changed some. Your son will get the best treatment available like my SO and I did. We also took the shots only once a week. It's great that he has a nurse he can contact anytime. That's even better than we hat we had because after the first three weeks when we had to drive to the hospital every day (because we were in a study program) we only saw the doctors once a week.

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Remember Fallujah

Bush to The Hague!

[Nite Owl]

23. Every day?

That must have been difficult when you are feeling tired from the meds. One bit of good news, we saw the doctor and he said that they have found that testing for the virus at 4 weeks is very predictive of the outcome. It was at 12 weeks and if there was no change then the program was discontinued but they found that the test at four weeks, while it doesn't mean that no response would indicate stopping the drug was a good indicator of the end result. Hopefully then it will be good and keep him going to the end. He also said that if there was no response to the treatment that in about two years that their are some things in the pipeline that seem very promising so there would be an alternative. I mentioned to the doctor about how he really doesn't want to do this treatment and he told him that it was his body and his decision but his doing it now when he has no symptoms and no damage to his liver, while he was young and healthy was the best thing to do in his opinion.

[neweurope]

24. The doctor is certainly right.

So when is your son starting with the medication?
I'll keep my fingers crossed for you that he does start and that the 4-week-test will be positive, I mean negative :)

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Remember Fallujah

Bush to The Hague!

[Nite Owl]

26. He starts on Saturday

evening. I'll keep you posted and I so appreciate your thoughts and all you help.

[Nite Owl]

27. He did the first shot last night

and he had no reaction. No aches, no temp, went to bed and slept for 8 hrs. He's going to work today. We did it all with the nurse and she said that he would feel like a mack truck hit him for the next 24hrs the first couple of times. Then nothing happened!

He read the package insert a couple of hours before he did it and got to the part about the hair loss and told me he wasn't going to do this at all. I tried to calm him down and tell him to at least go until the first blood test at 4 weeks and he said he would do a couple then he was stopping if his hair came out. We asked the nurse and she said it didn't happen to everyone and it was more like 'shedding' than real loss. The doctor told him this and I guess he didn't really hear it, so I'm so thrilled he got through at least the first shot without any problems but it was like a panic attack when he read that. Well he got through it. 23 to go.

[Cobalt Violet]

28. I'm so glad to hear that.

I hope his side effect stay minimal. Not everyone get every side effect. He has such a good chance of clearing this. It must be terribly hard on you trying to convince him to take it with all the potential side effects.

[Nite Owl]

30. I just wish it could be me

instead, I wish I could do it all for him. He's been through so damned much in his young life.

How are you, have you gotten any news yet? Are you feeling any effects of having the virus or do you just know it's there?

[Cobalt Violet]

32. I'm waiting to hear about insurance. It's been about 1 week.

It may take a few weeks. This disease usually progresses very slowly. I think I can wait it out a few more weeks. I don't drink so that helps. I read in one of your posts that your son has headaches and tiredness. I don't know if those are side effects in his case but those are two very common side affects of treatment. :shrug:

I definitely have symptoms of the virus. I have fatigue, joint pain, low-grade fevers, itching, and right upper quadrant pain. I also may have more I just don't know if they are from the virus or not. The upper quadrant pain is a steady reminder to me that treatment is a priority in my life right now. I am focused and working on making that happen.

[Nite Owl]

33. Have any of the tests

been done? The blood workups or the liver biopsy? Those were quite expensive, did you have the insurance at one time to do them? There is no way to afford this without any insurance. What has been done to our health care system is beyond criminal.

You are in my thoughts.

[Cobalt Violet]

35. I haven't had many tests.

I've never had a biopsy. I had insurance about 7 years ago when I was diagnosed. The doctor I had at the time didn't want me to have treatment because I was depressed. I was depressed because my father was dying of lung cancer at the time. I don't know what my genotype is either. At the time the doctor told me I had a low viral load. I don't want to pursue the old records. I want to start all over with a new doctor. I don't want the new doctor to find out I had any history of depression. I can't take any chances of being turned away for treatment again. A lot of doctors will put people undergoing treatment on anti-depressants anyway. I will ask for them if I need them.

It really is criminal what has happened to our healthcare. But hey, insurance companies are making record profits! :sarcasm: I've heard that 18000 die a year because of no healthcare.

[Nite Owl]

36. The biopsy wasn't difficult

it didn't hurt him much but he was a little sore for weeks after, but not bad. You have to stay in the recovery for what seems like forever though. They watch for internal bleeding. Once you hear, hopefully soon, it will likely be the first thing that they do after the blood work. Took about three days to get the results.

I wouldn't say anything about the other doctor either if it could be taken wrong. There was certainly a reason for the depression at the time. I'm sorry about your dad. Both my parents are gone and it's still hard to accept, they were just always there. I wish they could see their grandchildren all grown up.
The doctor didn't give him any anti depressants, I asked if he could have a Rx on hand but he said to call. I would rather have had them in case, things always happen on a weekend or the day that the office is closed.

[DeepBlueC]

37. he'll do well, I think

As I understand it 2b is more responsive to treatment than the most common type in North America (type 1a and 1b) and all cases are more likely to respond if treatment is initiated before it has scarred the liver significantly. Good luck. The treatment may be unpleasant but never think that it is worse than the disease. It isn't.

[Nite Owl]

38. He's done six shots and

has had virtually no side effects. He's tired but still working and going to his classes. The doctor was very pleased and surprised that he is doing so well and said if he didn't have the side effects by now he probally wouldn't at this point. I'm so glad he is doing this now and hopefully it can be put behind him. His type has an 80% chance so we are hoping this will stop it. We should find out later this week or next week how he is doing from the blood work done last week.

[DeepBlueC]

39. you're right

The debilitating side effects, what they call "flu-like symptoms" tend to manifest themselves immediately. For the rest they just monitor blood to see that everything stays within normal ranges. Not usually a problem, especially not in such a young man. Those odds are good and his should be even better as his disease has not yet done any irreversible damage to his liver.He should be good to himself while he is in treatment, lots of fluids, lots of sleep, good food - give his body its best chance to help heal itself.

[neweurope]

29. Congratulations!

If he didn't feel the side effects all that much with his first shot I believe he won't in the future, either. I feel very glad hearing this! And I know you must be glad :hug: I was thinking about you Saturday, I truly was.
As to the hair loss: I know of only one real bad case. My SO hardly lost any, I quite a bit but I was still not nearly bald-headed. As the nurse said it was more like shedding though it was noticeable. After the last shot it came right back (unfortunally it grows in different directions now).
I'll keep my fingers crossed for you!

----------------------------

Remember Fallujah

Bush to The Hague!

[Nite Owl]

31. He still feels fine

but for headaches and a little tired. Whether that is from the meds or not time will tell I guess.
When he read the losing hair part though it was an out and out panic attack, that was it, he wasn't doing this, so not feeling the symptoms will at the least get him to doing the next week. As far as the hair loss if it doesn't happen for a few months the weather will be warmer and he can shave his head, it's in anyway! Maybe his brother and his friends will do it too. That part really is easier for guys. All we have to do is convince him of that! He is hydrating, drinking a lot of water so he is listening to that much though he won't take the tea, not yet anyway.

[neweurope]

34. That would be great if his brother and friends would

shave their heads... 1) he wouldn't feel so alone with this and 2) it would be harder for him to quit the therapy, disappointing those who made a sacrifice for him.
You are right, for a woman it would be much harder... I always found bald headed men sexy! Unless they are shy about it and try to cover it with their last strands of hair, of course.

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<{b>Remember Fallujah

Bush to The Hague!

[Cobalt Violet]

40. I'm glad to hear that he is sticking with his treatment...

And finding it tolerable. I've heard the first few weeks are the worst so that's good he has that behind him. Has it effected his moods at all?

I went to the doctor finally yesterday. She had my blood drawn for all the tests and I am scheduled for a liver ultrasound April 9th. I need get that because I have the upper abdominal pain and they need to make sure it's not a gallbladder or pancreas issues. I have another appointment with her at the end of April at which time we will go over all the tests and she will send me on to a gastro doctor for care. I am in the uncompensated care pool in my state so it's like having insurance but I am very limited to where I can go. This isn't a problem because I really like my new doctor and I would probably be going to the same place even if I did have insurance. Later on I will be converted over to some other insurance plan that my state is offering through the new universal health program.

[Nite Owl]

41. That's such good news!

I'm so happy that you are seeing a doctor now. I hope that the pain is something other than the Hep C, if it is gall bladder won't that be better? It's a start and if you like the doctor that is a good thing.

He has had very little side effects, no fevers or aches, not even with the first couple of shots and his mood is good. He's more tired than usual but still working and going to classes. He's lost some weight too.

[Cobalt Violet]

42. I'm glad he can stick to it.

He's better off I he can lick this now.

Liver pain with HCV is really from the membrane surrounding the liver stretching due to inflammation. The liver has no nerve cells to feel pain itself. The presence of pain doesn't really indicate more advanced disease. Some people have very advanced disease and never have liver pain and other people have little liver damage and a low viral load and still have liver pain. The pain isn't a symptom of cirrhosis in other words. It's not a very extreme pain either; on the scale from 1 to 10 I would give it about a 1 or 2. I really think it is my liver because it isn't effected by what I eat or anything I do. I'll find out for sure soon though. I find that my aching joints hurt more than my liver. I'd give them about 2-3. Nothing extreme. The swelling of the liver goes down with treatment so the pain will lessen too. That's what others who have had the pain and treatment have said, so in a way I hope that it is just hep c pain. It's just a motivator to seek treatment.


I'm so happy your son is doing well with his treatment. It is very encouraging to hear he is not too sick to do the things he wants to do. I wish him well with the results of the tests that are coming up for him.

[Nite Owl]

43. The doctor called with the

results from the blood work he had last week for the viral load. It was much better than expected, after a month there is a significant drop. This bodes well for success of the treatment. We are so thrilled with this, not there yet but well on the way.

[Cobalt Violet]

44. Excellent.

Apparently he is a responder which is great news. :toast:

[Cobalt Violet]

45. I found out that I am type 1a.

That's not what I was hoping for. It pretty much means 48 weeks of treatment and a lower chance of clearing than type 2. My viral load is low, it's very close to the very low range, so I'm glad about that. My ultrasound and all other tests were normal. None of that is any indication of how much liver damage I already have thought. Only the biopsy will give me that info. Now I'm just waiting to be contacted by the liver center.

How is your son doing these days?

[Nite Owl]

46. From the reading I have done

it seems that the body is going to do what it is going to do regardless of the type or viral load. It's all in how you react to the meds. At least you are on the way now. The chance is lower but still good! My son didn't have a problem with the biopsy expcept for feeling really sore for a while. He's doing well, almost at the halfway and the blood work shows no detectible viral load. He's real tired and itchy but otherwise he's doing well.

Keep us posted, you are in our thoughts.

[warren pease]

47. My experience with Peg/Ribaviron

I've apparently had Hep-C for more than 30 years. Elevated enzyme levels turned up in a routine blood panel for a yearly physical in 1996. Further tests revealed the Hep-C virus. I was, and mostly still am, asymptomatic, although I do get pretty tired sometimes for no good reason.

I was accepted for one of the Peg/Ribaviron clinical trials back around 2003. Prior to that I had a biopsy which showed bridging fibrosis and a touch of cirrhosis (I've never been a heavy drinker and stopped completely in '96 when I learned I had the disease.) I've got genotype 3, which is supposed to be the easiest to clear.

The treatment was a year in hell and might have cost me my marriage had my wife not been a very tough and compassionate woman. Still, I was a real prick much of the time. The sick thing is it's like volunteering to give yourself the flu once a week. As it's been explained to me, interferon is a naturally occurring army of anti-bodies that comes out to fight infections and viruses, like the flu. The flu doesn't produce the symptoms you feel -- headaches, joint pains, chest congestion, fever and the rest. That's the interferon fighting the virus. So when you increase the level of interferon already present, you can develop flu-like symptoms.

Which I did, in spades. Fevers, sweats, sore joints, brutal attitude. And, worst of all, I didn't clear the virus. I gave my liver a break for a year, but the viral load is now back into the 2 million range, the cirrhosis has progressed somewhat, although it's far short of dangerous at this point.

I heard about an herbalist/naturopath who cured a friend of my wife of Hep-C. I saw him for the first time a couple of weeks ago. Came home with four vials of nasty tasting stuff and six pill jars. I'm to see him again in another two weeks, so we'll see if there's any progress.

Anyway, to make a long story infinite, I would think that your son would be very likely to respond favorably to the Peg/R program. He's young, presumably in decent shape, he hasn't had it very long, his viral load is low and his attitude sounds good. Do you happen to know his liver enzyme and billirubin levels? That tells you much more about the intensity of the disease and how much damage it's done than viral load counts.

So good luck to you and him. Hope all goes well over the course of treatment and that he emerges virus-free.

Best,

wp

On edit: If he hasn't already started the program, I'd recommend doing the shot on Friday night. That gives him the weekend to endure the worst of the side-effects, which is important if he's working or going to school and needs a decent concentration level.

[Nite Owl]

48. Thanks so much for sharing

warren pease. My son finished the Pegasys/ Ribaviron about a month ago. Amazingly he had little symptoms, no flu like symptoms after the shot at all. He was tired and needed to sleep for a while in the afternoon or evening and he lost weight, about 14 lbs. The doctor had him drinking two Ensure a day. He said the meds made food taste differently and he just wasn't hungry. He's put on a couple of pounds and is a little less tired but even a month later he still gets tired easily which is not like him. He went for the blood work yesterday so we should know this week. The test at 4 weeks and 12 weeks were clear and the doctor is expecting this one to show no signs. We wait. They think he had this for 20 years, all his life really. He was diagnosed with leukemia when he was 15 mos old and needed many transfusions. This was in the mid 80's when they didn't test for Hep C.

I've heard that people do try the treatment more than once and each time is completely different so if you were to try it again it may not be as bad. I hope the herbalist's treatment works for you. Keep us informed in how you are doing, there are quite a few people here who have this and likely many more who do and don't know it.

[Nite Owl]

49. My son went for his last

test for the Hep C a week ago. Today the doctor called and the results were positive. The treatment didn't work for him. He was tested at one month and 12 weeks and the tests were negative so this is sort of a shock. We see the doctor on Monday to see what happens next. With the type he has and the results are 85% are cured I am sort of secretly hoping the test was wrong or something but I know it's just fantasy.

[Cobalt Violet]

50. I'm so sorry to hear that.

:hug: The test can be wrong. It does happen.
And if the test was right he still may never develop serious liver issues. He is still very young. He has time. Have the doctors recommended re-treatment at some point? I believe that each time is different. I hope that it was a false positive.


I'll be starting treatment on this coming Saturday night. I'm waited so long to do this yet I'm so not looking forward to the next 48 weeks.

[Nite Owl]

51. Good luck

Cobalt Violet. We'll be thinking about you and sending all the good karma we got! Let us know how the first shot goes.

The doctor said the test was right and he can try for an experimental treatment or do the treatment over for a year with a slightly different drug (pegysys instead of pegintron). He said that there was an 18% chance this would work this time. Not too good considering he had a 90% chance with the first treatment. We are waiting for an appointment with another specialist more connected with research and trials.

If you have any questions or any way that I can help you know where to find me!

:hug:

[Cobalt Violet]

52. The first shot went good.

I didn't have many side effects. I was just a bit achy and a very light dull headache. I still went out shopping and to a birthday party. I'm pretty fortunate about that. I'm going to go to work today. I hope I continue to tolerate it well but I know that I haven't really had the drop in red blood cells that we get from it yet.

Thank for letting us know what is going on with your son. It sounds like his liver is still in excellent working order and will keep him going for many, many years. He's got time and something will come along that will help he stay clear.

[Nite Owl]

53. Great, the first few shots

are supposedly the worse for the flu like symptoms so that should get better. As the red blood cell counts dropped my son felt more and more tired and he lost weight. Eat well and get all the rest you feel you need.

[peacebuzzard]

54. here is a kick for this thread.

One of the MD's I consulted recently insisted on blood work and the news for me is a Hep C diagnosis. I will find out more this week as far as type; viral count etc. I have done research and with this thread bookmarked a couple of forums I will check out.
Hope Nite Owl's son is better now. No one has posted here for several months; but apparently with this disease being a sleeper there are many on these threads with no clue they have it.

I had elevated liver enzymes diagnosed two yrs ago but the doc did not pursue it further at that time. In April 07 I had acute pain in the upper right quad (liver area) the blood work came back fine and the radiography was clear. There may have been some scarring as a result of Hep A in the 90s after a trip to Mexico. But in April 07 my doc at the time told me I checked out ok. I went back to my jet set life and work world to only have a huge physical breakdown the following month. The same doctor was dismissing most of my symptoms and wanted me to do a Functional Capacity Evaluation for work. I was so weak and in pain (primarily from the feet) that I just consulted other doctors for the muscular/and feet disorder and applied for sick leave, medical leave, disability both short and long term.

I felt I was improving w/the exception of fatigue and headaches from bruxism (stress) but this new doctor came up with this diagnosis.

It is still new to me so just thought I would throw this in this thread as I am sure others here might do a search as I did and stumble across this which has some useful information and insights to what some folks here are going through.

And yes, our health care system in this country sucks. I am fortunate I have been paying a huge percentage of my meager disability pay for the Cobra to the sum of 450 a month (both medical and dental). That does not include the copays. If I am a candidate for the treatment, at least I have the funding covered.

Good luck to all going through this.

[Nite Owl]

55. Keep us informed

as to what the doctor says. If you need any info feel free to pm me or post here.

At this point my son has no symptoms of Hep C but it is there. He was going to get some minor surgery done they did the pre op blood work, that's how they found it. It was a real shocker. His doctor wants him to wait for a new drug that is in testing. This drug would be used with the interferon and ribovirin but it will be about a year to see if it truly works and is approved. He couldn't be part of the testing because he had the treatment already. Problem is he's in college and will be done before this drug is ready. If he doesn't find a job with good health coverage this is going to very expensive.

Here's some more links:
http://www.hcvadvocate.org/index.asp

http://www.medicinenet.com/script/main/art.asp?articlekey=47226

http://www.hcvanonymous.com/links.html

http://www.hepatitis-central.com/?eml=hepcen12

Also, my son's new doctor said that Pegasys is the better drug. My son had Pegintron (Schering). He said that the molecules were bigger in the Pegasys and he felt that they worked better.

Best to you peacebuzzard.

[peacebuzzard]

56. thanks. and thanks for the links.

I have been doing as much research as I can find; as, it seems like almost a matter of weighing the options and making a personal choice once you know the numbers. I will find out the math this week.

[peacebuzzard]

63. Thank you Nite Owl.

I have been rather overwhelmed lately w/ the physicians and information processing on a subject I knew nothing about until recently.

How is your son? I am sorry about the virus return. And his type seemed to be an easier one to respond to treatment. Is he considering another phase? That is a let down for him, I am sure. He was taking it so very hard w/ the side-effects possibilities. How is his demeanor with this new information on the treatment? It seemed like he aced it physically the first time, so here is hoping he feels good.

Many blessings and well wishes for your son and you.

Hugs...:hug:

[Nite Owl]

69. I know the information

the news makes one feel that it has to be wrong, a mistake. Took us a while to accept the fact, it just seemed so improbable. June 6, 1986 he was diagnosed with leukemia and received his first transfusion. June 6, 2006 he had the blood work and was diagnosed with Hep C. They say it takes about 20yrs to show up and it was to the day!
He is feeling fine, no signs of anything really. His doctor wants him to wait until some of the newer drugs are approved. He would use the Pegasys and ribovirin with them and likely for a year. He is willing but he will be off my insurance by that time. He has to find a job with good insurance and hope he can work through it again or something has to happen with our healthcare mess in this country. I'm selling my house (bad time for that) and hoping to make enough profit to put into an account for him if he needs it.

Have you heard any news as to the genotype and treatment you will need?

Be well peacebuzzard.

[Cobalt Violet]

57. Sorry you have this virus.

I'm on the treatment now. I have until mid-August on the treatment. It's not fun that's for sure. I hope for you that you have one of the easier to treat geno-types. I'm glad you have insurance. It's so expensive to treat.

[peacebuzzard]

58. I am on a medical leave and have Cobra ...cost is over 450 a month,

I am still in diagnosis stage. But it is confirmed positive for antibodies.

And the expenses keep rising with the copays etc up to a cap of 2k a year. I am still lucky to have it though.

[Name removed]

59. Deleted message

Message removed by moderator. Click here to review the message board rules.

[blondie58]

60. a friend of mine at work had Hep C and took the inteferon

we compared notes, as we both take a similar drug. I take an inteferon (rebif) for ms. At first, they will leave you feeling likey you have the flu. Extreme achiness, headache, etc. Taking an advil before he takes it should help. Yeah, and the depression- do watch it. I think that the side affects subside a little bit as your body adjusts to it. He also has to be careful about drinking with it, as it can harm your liver. Good luck- but it does work. My friend at work is just fine now- you would never know what he went through.

[Cobalt Violet]

61. I lost my job because of the side effects of treatment Thursday.

I'm not surprise considering what kind of boss I had. Almost halfway through treatment now isn't a good time to be looking and stressing about work. I'm going to look into the legality of what she did to me.

[peacebuzzard]

62. I am so sorry about that.

This thread has stories of people working while on the treatment and that must be so challenging.

That is so bad what happened, Cobalt Violet. And you in the middle of the treatment.

How so untimely. I hope you have disability or sick leave something to get you through. Your chances of getting a med statement on your behalf should qualify you for a number of benefits if you have them. If nothing else, unemployment should kick in. I wish I could help you.

Hugs...:hug: :cry:

[Cobalt Violet]

64. Working was a big challenge for me.

I had a very physical job so that made it worse. I've also had a huge drop in red blood cells which left me out of breath just getting out of bed to go to the bathroom. I'm taking Procrit for that now.
I also worked directly with the public and putting on an energetic bubbly appearance was so hard for me when I felt completely the opposite.

Everyone is different in how they handle the treatment. The shots haven't really bothered me that much but the pills are giving many side effects.

Did you find out what genotype you have? I'm hoping it's 2 or 3 for the shorter treatment time.

[Nite Owl]

66. My son found that too

that the pills were worse. He was so fatigued. He was working part time and was a full time college student, he made it through but as he said he had no life other than that and sleeping. He lost a lot of weight, had little appetite and had to drink some supplements.

[Cobalt Violet]

67. It does snowball a bit.

The more weight you lose the stronger the sides get. The stronger the sides get the more weight you lose. It took a while to catch up with me but it has. I use to love coffee and hot spicy food. I can't go anywhere near either now. My hair has gotten much blonder and thinner.

How long after the treatment did it take him to start feeling like himself again?

[Nite Owl]

68. Took him about a month

but he only took them for 6 months.

[Nite Owl]

65. I'm so sorry to hear that

I hope there is some legal recourse. Losing a job is stressful at any time but to do that now is just cruel.

[HeeBGBz]

70. My Hepatitis C blood test came back positive

I got the phone call today. Gotta go have more tests on Monday. Have felt pretty crappy for years, but have had trouble finding out why.

I have no insurance, so I'm not too optimistic about my options. My only possibility is that I may become eligible for VA health care. I haven't applied yet. I got turned down once, but I think the requirements have changed since then.

I work in a restaurant, so whether or not they are gonna get freaky about it, I don't know.

My Hepatitis B test has not come back yet. Can you have both varieties at the same time, I wonder? If so, I'm probably screwed.

[peacebuzzard]

71. Hi there!

I have been researching volumes on this elusive disease; and you are not alone. The majority of the probable infected population has not been diagnosed as it is a difficult diagnosis determined only by the specific blood tests. Your enzyme levels must have been off enough that you so happened to have a conscientious enough doc to investigate further into the liver problems. Personally, I have been through 4 physicians with the same crappy complaints before one zeroed in on a blood test and requested additional diagnostic tests. And, I have had insurance and access to docs; but those docs are another subjetct.

As far as people getting freaky where you work, personally, I would keep a handle on it and not spill the specifics. There is primarily misconceptions out there on the disease, and to the uninformed, it would lead, at the minimum, to lots of explanations from your part and you have so much to deal with at the present.

I know you must be overwhelmed as I was, 3 weeks ago. There is lots of information out there, there is a difficult treatment option available which has a medium percentage of success, depending on the individual's health, virus type, and other co-factors. Treatment is also available through state's insurance plans, which you would have to apply for based on medical need.

I did the qualitative/quantitative test to find out the type and viral load but do not have the results yet.

It is possible to have both B and C which complicates the diagnosis. I had negative for the B so I am in the series of anti-B vaccinations which has a schedule of 0, 1 and 6 months.

I am sorry you are facing this, but at least you now know and can start taking care of yourself. There are some insights in this thread as to how some people went through treatment.

Take care of yourself. :hug: I will be checking this thread often, let us know how things develop for you. Remember, take it easy on yourself. Eat healthy, do some exercise, and most important, come back and let us know how it is going.

[HeeBGBz]

73. I requested the tests

I had talked to my ex about 2 years ago and he told me he had Hep C and that I should get tested. I just now had the opportunity to ask for the blood tests. Up until now, I had felt like a hypochondriac because I was always complaining of this or that and they never found any reason for it. Funny how after I looked up info on the subject that of the symptoms listed, I had been having most of them for years.

I guess the test I have tomorrow is the Riba? I don't know. The woman talked so fast and then handed me over to the receptionist that I didn't get to ask many questions.

Thanks for the reply.

[peacebuzzard]

75. I had to look up the RIBA question.

I knew that was the result I had on hand, just had to confirm.

Apparently when they run the typical blood test the liver enzyme profile shows up as AST and ALT levels (also formerly referred to as SGOT and SGPT) Somewhere in there is another one for the GGT (?----again, I am a novice and just learning) but the GGT (? ) I THINK relates to carcinogenic.

However, it is the elevations of AST and ALT that should prompt further analysis. That further test is the RIBA which tests the antibody positive for A, B, and C hep. The RIBA is the test they probably ran already on you that gave the positive antibody result.

I am still waiting for my doc to come back to town to go over my test results. The nurse told me a couple of days ago it was in, but I set up a time for Monday. I am in no hurry to hear the numbers. I am still trying to digest all this info.

The treatment available today and the diagnostics do not seem to have overwhelming success. Sigh.

Keep us posted.

[Nite Owl]

72. So sorry to hear this

I hope the VA comes through for you. There are so many people who have Hep C and are completely unaware. It seems to take so long to show up and all who were exposed back in the 80's are now just starting to show up positive. My son had no symptoms. It was by chance that he was diagnosed, he was going for other surgery and the pre admittance tests showed elevated liver enzymes.

As far as your job find out if this has to be reported. I don't think it is a reportable type disease. And yes, you can get A or/and B with C. My son had to get the immunizations. He also had to get tested for HIV because they can come together. Thankfully that was negative for him.

Just remember you aren't alone in this, we are all here for you.

[HeeBGBz]

74. I probably got this in the 70's

It's been working on me for years. I got my HIV test back and it was negative. I'm happy about that, but this seems just as bad.

I dread going back to the health department. After I filled out the paperwork for the blood test, the woman who was testing me started asking about the scars on my arm and whether I had did that to myself. I told her that I had an abusive relationship, yada, yada, yada, and the other ones were cat scratches. Then she started telling me how the Lord loved me, do I work on Sunday, etc, and she hoped I have "better friends" now. My patience for that stuff will wear mighty thin. I can only imagine how I'll be treated now they know I'm positive. I will not stand being chastised for something that happened 30 years ago.

Thanks for responding. I really don't know what I'm gonna do. The reality is sinking in and I find it really depressing.

[peacebuzzard]

76. I think I will ask my sister to go to the Health Dept., after reading your post

I have already mentioned to her about the Health Dept. since she has no health insurance. My sister is the most die hard bohemian I know, and lives on the fruit of her odd jobs.

From what I am reading, you cannot rule out a source of infection from sharing personal items such as razors, toothbrushes, manicure items. The hep c is a very resistant virus and can survive on surfaces for hours. It is unlike the HIV which rapidly dies in a matter of minutes.

Take care, try to find relaxation and no stress. The stress factor brings on so much damage.

[HeeBGBz]

77. I've got most of my blood tests done through the health dept

I don't know how much more they will do. I'm waiting now for the results from the viral load thing and the genotype test. It'll probably be about two weeks for that. Tomorrow I'm going to check out another local program that may help me some with any meds. If nothing else, they will give me more info. I still haven't talked to any doctor since I've been informed I have this. Kind of flying blind at the moment.

Had a bad night last night. Woke up in mid dream with the worst nausea I've ever felt and it seemed to be connected to a pain in my left side. It was awful. I sat up in bed wondering if something really serious was going on and eventually it subsided and I went back to bed. Kind of scary.

[Nite Owl]

78. Give the drug companies

a call to ask for assistance with the meds.
My son had this number in a folder from Schering: 1 800 521 7157
They have a Committment to Care program where they assess needs based on income.
Website: http://www.beincharge.com/bic/application

The similar drug Pegasys is made by Roche: http://www.pegasys.com/
http://www.rocheusa.com/products/pegasys
They might have a program too, it's worth a call to ask.

Before any treatment you will probably need a liver biopsy. My son said it wasn't fun but not that bad. You have to stay on your side in the recovery for a few hours and he said that was the worst part for him anyway. He was uncomfortable and sore for a while but still carried on as normal. I think they did an ultrasound before this which is painless.

Also look into studies being done. Since you have not received any other treatments yet you might be eligible. They cover everything, drugs, doctors, etc. Are there any teaching hospitals near you? They might be a good source.

[HeeBGBz]

79. Thanks for all the info

There is a nursing school hospital near me (I think). I will read through the links you sent. There is a nurse I need to talk to soon, who runs some sort of program for Hep C. She might have some info on my options as well.

[peacebuzzard]

80. I know you are doing some research

but here is a supportive site which people share their side-effects, symptoms, anxiety and information:

http://dailystrength.org/news/Hepatitis_C

The link takes you to the homepage and you have to navigate some to register and get to the member's discussion boards. I have registered there and have learned quite a bit about the effects and impact and prognosis of the treatment. Yes, It is not an easy card to handle. It is also frightening and a very personal challenge. It has certainly changed me this past month and have caused me to put a different perspective on my life.

This board/site is not as smooth as DU....DU is the most organized site I have ever been to for that matter and I tend to compare all sites to this one. But, once you begin to learn how to find your links and maneuver, there is plenty of stuff going on that I find helpful especially because it is a virtual "tribe" community of like souls.

My disability company just denied my claim to further my challenge. I have been on a medical leave for quite sometime now with the extra "symptoms" not knowing that deep inside was this explosive virus. Now, I am faced with the unpleasant and stressful challenge of the appeal process and budget problems.

My acute symptom happened early January (last month) when I had a horrible span of several days of flu like symptoms. That seems to be the door opener for the diagnosis for many people. I also had a burning abdomen pain, and that full, uncomfortble feeling has persisted now for quite sometime. I do think it is from this GI viral disorder. Not a good answer. I am sorry you are going through this. And it is a frightening experience.

[HeeBGBz]

82. I signed up for that forum

Thanks for the link. I haven't posted much anywhere so far. My ability to write my feelings down has gotten worse. I think I'm pretty depressed at the moment. I have no interest in anything any more. I have to do all my stuff in the morning because by noon I am usually drained.

I found this forum too. It seems to have a lot of information.

http://www.medhelp.org/forums/hepatitis/wwwboard.html

My worst symptoms are the full abdomen right under my ribs. If I eat anything, I feel like I have gorged myself. It really makes me irritable. I have a lot of joint pain, too.

I hope you're feeling better.

[Cobalt Violet]

81. Sorry.

I have a feeling this disease is much more common that we know. Your HCV+ status should have nothing to do with your work since it is only spread through blood to blood contact. HAV is the one that can be spread by food. That being said there is plenty of ignorance among people about this disease and I'd be careful who you trust.

The fact that you have symptoms and liver pain doesn't mean that your liver more diseased than someone who doesn't have symptoms. The opposite is true too. This disease is kind of weird like that. Some people have high viral loads and lots of symptoms but not a lot of liver disease. Others have fibrosis and yet they don't have symptoms.

I hope you get the VA thing. The drug companies do have programs to help those who can't pay.

[HeeBGBz]

83. I told my boss and she has been helpful

I haven't told my co-workers. My patience is strained. Especially when they are young and start complaining about a cold or they are tired because they stayed up too late. I'm thinking "you little whiners, do you know how long I've been working with this illness, feeling like crap and saying nothing???" I don't tell them anything, but I really want to smack em.

I just wish my boss would cut out the 10 hour days for me, though. I told her they were hard on me, but she still schedules me 10 hours two days a week.

I have about one more week before I get my vr and genotype results back.

[Liberty Belle]

84. Get Sam-E! I sent some to my friend, end-stage Hep C, and it was a miracle.

Sam-E (short for a very long name) is available at any health food store. It's a true miracle.

My friend, who had been passing out, having memory lapses, in the hospital repeatedly, was a new person on Sam-E. her doctor was skeptical at first, but so amazed by her miraculous recovery from death's door that he now prescribes Sam-E for all of his patients with hepatitis or liver damage of any kind.

I learned about it while interviewing a supplier for a nutrition medication. This little-known cure should really be widely publicized. It's been clinically proven as the only substance on earth to actually reverse liver damage in cirrhosis patients and apparently, in hepatitis-C patients as well.

[Cobalt Violet]

85. Why is the death rate from hepC going up then?

Where is the research?

[blondie58]

86. on the positive side, I know of many people who've been through it-

and it worked! On the negative side, the interferon is similar to an interferon that I take for my multiple sclerosis- it may be even a higher dose of it- and what has been said about depression and achiness is true. I used to feel like I had the flu every day after taking my shot- complete with muscle aches and headaches. It progressively got better over the years, but it is tough at first. I wish him the best of luck- and please tell him that it will get better.

[Cobalt Violet]

87. I finally finsished up the treatment.

I finished a few weeks ago. I'm starting to feel a bit better. It's been a long 48 weeks. I 'm not sure if it worked. I won't know for awhile. I've got a lot of things I have to do that I just haven't had the energy to do.

[Nite Owl]

88. I so hope it worked for you.

Keep us posted.

[Cobalt Violet]

89. So far so good.

The 4 week test was clear. The big one is the 6 month one though.