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2114131 tn?1399240871

How long should i go on when im free of the virus?

I have been on a treatment of interferon and ribavirin for half a year.
The virus does not show in my blood anymore.
I do however had a very hard time with the treatment and i feel
like im at the end of my strength.
This was of course the result i hoped and worked for
but now i got the advice from my doctor to go on
with the treatment for another half year.
This would better my chances that the virus will not come back.
According to my doctor the chances that the virus will come back when i stop the treatment now
are 40 % and when i go on for half a year it would be 5 %.
I would really like to know more about this subject.
For instance what would 3 months of extra treatment do for my chances...
Can i find statistics somewhere that back up the claim of
my doctor??
During my treatment i ended up 4 times in the hospital
with different complications.
Heart problems,skin problems,an inflamed jaw..etc...
Mentally im also at my end.The interferon has turned me in to
a grumpy ******* who sometimes cry's over nothing
and at an other moment feels nothing at all.
I have totally had it with the treatment and i need to have some extra info
to go on.
I feel like my body hardly can take any more of this.
What is wisdom in these circumstances???
Best Answer
1840891 tn?1431547793
Well I'm hoping some if the other members will jump in on this one with some encouragement of some kind for you. I'm no doctor, but from my own experiences I can't offer any encouragement with either continuing or discontinuing your current tx. I had HCV genotype 1a since 1984. I treated three times. The first was in early experiments with interferon, and it was used alone. I didn't respond at all and it was discontinued after three months. In 2004 I was diagnosed stage 4 (cirrhosis) and was desperate to treat again. In 2005 was put on interferon and ribavirin. I responded, but not as much as hoped for. I didn't achieve UND in the time required by protocol but I pleaded with my doctor to let me keep trying. I finally did achieve UND a bit later and I stayed on tx and stayed UND through 15 months of tx. I hoped I was cured, but the virus returned at high levels only 6 weeks later. My last tx was triple tx with Incivek starting in October 2011 and going 48 weeks, ending Sept 2012. This March, 2013, I was told I achieved SVR, so it finally paid off. Sadly however, this story doesn't bode well for you. I'll try to do a little research to see if I can find the statistical odds for you, and hope they are more encouraging than my anecdotal odds, but it may take me a little time. In the meantime I can say if it was me I'd probably continue tx in spite of low odds, but that's more my nature than actual logic speaking. I would definitely encourage you to talk to your doctor about antidepressants if you are to continue tx. They can definitely improve your quality of life if you find one that is right for you. Zoloft has worked well for me. I'll be back with more as soon as I can.
34 Responses
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2114131 tn?1399240871
Coming Monday my doctor will call me.
At least the chance to ask her some questions,
and hopefully get some answers.

A good weekend to you all!!  
Helpful - 0
Avatar universal
Yes Didi,this forum is wonderful ,it helps a lot .As people share their  experiences we can learn if we are on the right path.I know how it is to have little or no help at all from the medical insure  ...Hepatitis C should be on a priority list and they should treat for free this illness.Because a lot of hepatitis C is taken from medical fields .;surgery,dentist ,transfusion ,so on ,so on.I asked around for doctors and checked them out .I did have a DR who was so arrogant that I decided I cannot continue to this to myself.I left and searched for another Dr .I called all my friends and one suggested me to turn to a friendly ,good doc ,who is talking to me and discuss with me all my concerns.I am glad I did it,I feel now well when I go to this one.I am more confident .My regimen should be with 4 pills of riba ,,and I am 58 kg .I know for sure ,under 75 is 800 mg per day=4 riba ,,,so what is more than 75 kg should be at least 5 pills a day if not 6 .Maybe the doc put you on a small doses thinking about side effects ? Anyway take good care of yourself and go out and ask about docs and clinics and hospitals..Internal medicines,infectious medicines also have docs who treat hep C ..just go and do your research .Bye and good luck.
Helpful - 0
2114131 tn?1399240871
Thanks for the advice,Kadeeta,i will go after an other doctor.
Starting tomorrow morning.
It helps a lot to know there are people out there(like you)who go through
the same problems and agony.
Sometimes a few words can really lift me up and give me energy again!
(-:
.
Helpful - 0
Avatar universal
I followed this thread today .Listen.Go on internet and search with Google places with treatment for hepatitis C in your country .Usually ,many clinics are conducting trials..they are free ..you have to ask ,and ask and ask until you find a good MD /Maybe you can meet some other people  with Hep C and they now better MD -s . Make a list with your treatments with as many information as you can remember to show to new doctors ,We have to take care of ourselves .
Helpful - 0
2114131 tn?1399240871
http://www.drugs.com/comments/ribavirin/

Yes,i looked it up,my dose is very low.(see above)
It looks like after stopping the incivo,my doctor forgot that
a combo therapie asks for raising the dose of ribavirin.

But as usual...i just cant reach her.........

Thanks for all your support,guys and girls.And man and woman,of course.
(-:

Jeeee,i miss not worrying about all this....this misery.
Helpful - 0
3093770 tn?1389739126
AT 90 kg and without any other contraindications I think the correct dose is 1200 mg per day

Well I assume that even in Netherland you do have the right to formaly complain if the doctor is not doing their job. She might satrt to pay more attention then

It is your right to get proper care and is her duty  to provide it. Protocols for this tx are very clear. You do have the right to ask why she is not repsecting them and I hope she will have a very good explanation on why she is messing it up

Don't worry about the fact they speak between them, it is your right to do whatever you feel the best for you

Try to contact a patient advocate organization and maybe someone from their end will join you during your doctor visits. It is not acceptable to have a doctor avoiding talking to you and not explaining exactely what your treatment plan is and why

I hope you find some support there
Helpful - 0
1840891 tn?1431547793
You are getting great advice about your doctor. You really deserve better than what this doctor is giving you. I really understand your fears about changing, as I have had those same fears when I've had to change, and its really hard to put them aside, but that's what you must do. No one else is going to make your health as high a priority, especially if you don't do it yourself. Mike is also right about your ribavirin dose. I weigh quite a bit less than you do and I was on 1000 mg per day, 600 in the morning and 400 in the evening. Good luck with finding a new doctor! 
Helpful - 0
766573 tn?1365166466
I cannot navigate the web on this PC and read all that is written above the 'Post a comment box' but From what I have been able to piece together based on this post
http://www.medhelp.org/posts/Hepatitis-C/How-to-treat-a-rash-while-on-tripple-treatment/show/1852867#post_8570617

You started triple with Incivek on Monday November 26 and stopped the Incivek around November 30 because of the rash.
http://www.medhelp.org/posts/Hepatitis-C/How-to-treat-a-rash-while-on-tripple-treatment/show/1852867#post_8570617

In this post you said you became UND on Monday which was May 24
http://www.medhelp.org/posts/Hepatitis-C/How-long-should-i-go-on-when-im-free-of-the-virus/show/1953778#post_9152800

If ("if") these dates are close then give or take a day or two it means you have been on treatment for around 205 days (aprox 29 weeks) and have und for about three weeks now. Said another way you did not become und until 25 weeks rounded down or day 179.

Helpful - 0
Avatar universal
Yes, the meds can affect your mental state but that doesn't mean you're not right to be concerned with the care you've been receiving. It sure doesn't look right to me.

Good luck,
Mike
Helpful - 0
2114131 tn?1399240871
Thanks for your reaction,Mike.
I think the conclusion becomes inevitable.....i have got an uninterested and bad doctor.Which doesn't rhyme with the arrogance that seems to be her main character trademark.
But what bothers me most of all,is she does not seem to be interested in her profession.And in this case that is just dangerous to me.
Gonna find out how to do this...
I do not have a lot of money,i have got a basic insurance,and in Holland it is like it is everywhere.......If you got money you can choose what ever you want but if you dont you either roll with the punches or get smart.
I really need to stand up for my self.
point is,this treatment also changes you mentally.
Sometimes i find it hard to judge if im under influence of mood-swings due to the interferon use, or if im just right.
But which ever way i look at it......I NEED TO FIND AN OTHER DOCTOR!

thanks for listening!!
Helpful - 0
Avatar universal
If I am reading it right you're taking 800 mg ribavirin per day.
That might be a factor as to why you became undetectable so late in treatment. 800 mg ribavirin per day does seem a bit low to me.
Without knowing the specifics of your situation, in general a male weighing 90 kilograms should be taking not less than 1000 mg ribavirin per day and many doctors would recommend 1200 mg per day.

If I'm understanding you right and if you have no contraindicating issues this might further suggest that you might do better with another doctor.

Good luck,
Mike
Helpful - 0
2114131 tn?1399240871
You're right.Thanks.
Gonna look for other doc.
Helpful - 0
4670047 tn?1375730401
You need to take care of you. I understand the feeling you have about "the doctors all know each other ". Forget it!! If your not comfortable with your doctor, find a new one. I agree with the others a hepatologist is who you should be seeing at this point. I had to switch docs in the 7th week of my treatment. I had the same fear, they all talk to each other. Well they might, but they don't all treat there patients the same. Ask around. But don't go on suffering and wondering. It's has been said on here many times, "be proactive in your health" it's yours. You can always come on the forum and ask questions, but if your not happy with your doctor there isn't anyone on here that can fix it. I'm wishing you the bet of luck!!
Helpful - 0
2114131 tn?1399240871
As usual when i hoped to be able to talk to my doctor she was away again.
She is never at work,and also by phone it is impossible to reach her.
She leaves everything to her assistant who only says the obvious things.
My doctor,Dr.Kerbert-Dreteler from ''Medisch spectrum Twente in Enschede'',
never has got time to talk.The few times i saw her for  ten minutes at the most, she has some monologue and doesnt listen to any of my questions.
Im afraid to look for an other doctor cause most of them all know each other.
i dont want to become known as a patient that creates conflicts.
I wished i knew how to get an other doctor.
Helpful - 0
2114131 tn?1399240871
I weigh 90 kilograms.get 2 times 400 riba a day, and once a week 180 mg interferon.
Helpful - 0
Avatar universal
Hi, unfortunately I think the answers above are correct.  If you did not have a > two log drop by the end of 12 weeks, your doctor probably should have stopped treatment, because you were not responding well, and there probably was no point to continuing.  However, since you have now attained UND, I guess there is always that possibility that you will remain UND.  I am not an expert, but it seems as though your body does not respond as well to Interferon as some others do, making you a partial responder.  I agree with others who say that you should be seen by a hepatologist, who could better evaluate whether you should continue, since you are now UND, or discontinue since your current doctor did not follow the futility rules for treatment with Interferon and Ribavirin.  Perhaps a hepatologist would feel that it's reasonable to continue for another month and re-check your viral load to see if you are still UND before deciding.  Keep us posted.
Advocate1955
Helpful - 0
1986676 tn?1329862471
You do realize if you quit treatment you will not be able to do this treatment again. I agree you need a second opinion.  

Meanwhile, you will get plenty support from this forum.
No question you have will be ignored so fire away.

Wishing you the best.

Reva
Helpful - 0
1840891 tn?1431547793
Hi Bluebird! You really should post this as a new question (the orange button up top), and preferably on the Cirrhosis of the Liver Community here http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390, for good answers about cirrhosis.  Here's my answer anyway: Early cirrhosis (fully compensated) has no symptoms in particular, although I think fatigue is pretty common. When decompensation occurs one can get a wide range of symptoms. You should read up on it at a number of places on the web to get a balanced view. I'm pasting a list below that was compiled by the University of Maryland Medical Center. Your fatigue, itching and big belly (possibly ascites) may all be symptoms of your cirrhosis.

Cirrhosis - Complications

http://www.umm.edu/patiented/articles/what_symptoms_of_cirrhosis_000075_4.htm

Complications:

A damaged liver affects almost every bodily process, including the functions of the digestive, hormonal, and circulatory systems. Decompensated cirrhosis increases the risk of serious and potentially life-threatening complications. (Once decompensation occurs, mortality rates without liver transplantation can be as high as 85% within 5 years.) The most serious complications are those associated with portal hypertension (increased pressure in the portal vein that carries blood from the intestine to the liver). They include:

Ascites (fluid buildup in the abdomen) which can lead to (SBP) Spontaneous Bacterial Peritonitis is a form of peritonitis (inflammation of the membrane that lines the abdomen), which is associated with ascites. Other bacterial infections are also a common complication of cirrhosis.

Other bacterial infections are also a common complication of cirrhosis.

Variceal hemorrhage (bleeding in the upper stomach and esophagus from ruptured blood vessels)

Hepatic encephalopathy (damage to the brain). Impaired brain function occurs when the liver cannot detoxify harmful substances, and can lead to coma and death.

Helpful - 0
5536514 tn?1373500002
Are there any specific symtons of 4th stage cirrosis, because although I have serious cirriosis I have no idea what I am suppose to feel like.  Right now I am so tired I can fall asleep at the drop of a hat.  I have vertigo. and wieght gain and big stomach.   there is itching.  But other than that I dont have any other sickly feelings.  I know I should be asking these questions of my new doctor, but it will be awhile before I can see him.  I am curious what you think.
Helpful - 0
Avatar universal
I just realized there has been no mention of your ribavirin and interferon doses and your weight.
Back in the days of SOC that would have been one of the first things members would have wanted to know but there's been no mention of doses - unless I missed it.

Helpful - 0
1815939 tn?1377991799
You have been given some very good advice in the above posts. I really do not have much to add.

As far as knowing your previous treatment response, it is helpful to know the previous treatment response. Being a null responder the last time you treated, means you are not really very responsive to Interferon/Riba. This, in itself, is a predictor of poor results if one treats with the very same drugs the next time. In addition, the fact that you did not clear until week 21 this time is a predictor of poor response. Plus, you have a more advanced stage of fibrosis, which makes it more difficult to treat and also the results are not as positive (SVR rates are lower).

I agree with the above posters who advised you to find a new doctor for a second opinion. If it was me, I wold find a Hepatologist who is affiliated with a large medical center, someone who is very experienced and competent in treating Hepatitis C.

Wishing you the very best.
Helpful - 0
1840891 tn?1431547793
You are welcome! I just want to add that can-do-man is also right, maintenance therapy has not been useful, so long-term use of these meds is not a reasonable option. You and your doctor have to evaluate the risks these meds are causing and compare them to the rather slim (but still real) possibility of achieving SVR, and your current doctor might be not quite up to this. You definitely need better control of the depression and your other side effects sound pretty severe if you have already been hospitalized four times in the first 24 weeks of tx. The idea I proposed about staying UND for a while as giving your liver a break from the assault of the virus is not something I've seen any statistical proof for, but it is more of a common-sense and anecdotal belief that is quite common. I feel strongly that my own long, and ultimately unsuccessful tx with SOC was a contributing factor to my cirrhotic liver staying compensated long enough 9 years so far) for me to be able to do the triple tx that cured me, but of course, I have no proof. Either way, you would probably benefit most by finding a more highly trained doctor. You should be treated by a hepatologist, and preferably one associated with a large liver clinic or a liver transplant center. Good luck!
Helpful - 0
Avatar universal
Well the first time you treated your doctor was correct in stopping treatment. If one does not have at least a 2 log drop by week 12 then treatment should be stopped, why he is doing the same thing over again I don't understand but you should get a second opinion. I am pro treatment but not to the point of risking ones health. If it is not working staying on these drugs just to be on them is not a good ideal as you could be doing more harm then good, they tried doing maintenance therapy hoping that it would do the liver some good but things did not work out the way they hoped.... I know this is not what you want to hear and I am sorry.

You wanted studies that backed what your doctor said but they are not out there...... Again staying on these meds just to be on them is very risky. Good luck
Helpful - 0
2114131 tn?1399240871
Thank you so much for this!!!
Although its not the outcome i hoped for
knowledge does set me free in a way.
I will try and continue the treatment and hope for
sofosbuvir to get approved in Holland soon.
Point is i get so depressed from time to time
and physically i can also use a break
from the constant intake of poison.(interferon and riba.)
However i am totally baffled now why my doctor
gives me total other odds and averages about
my treatment.
Ill try and gather as much info as possible so
i can ask the right questions on Friday the 7 of June
when i have my next appointment with her.

Again.....you are of great help.Thanks!!!!!!!!!!!!!!  (-:
Helpful - 0
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