Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: plute on June 10, 2015, 05:30:46 pm
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Hi, i have genotype 1 and have only done 4 weeks of treatment with interferon/ribavarin and simeprevir. I work mornings in a school. I am a single parent with 4 children ages 7, 8 ,10 and 12. My family are all dead and although I have friends they just think Im a bit more stressed than usual but treatment cant be that bad cos I seem to be ok. But, I am so tired, after my injection I dont sleep and I feel exhausted. I am finding my children such hard work and shout and cry a lot. My 12 yr old daughter is angry at me for feeling unwell and my 10 yr old is pushing me at every opportunity. Maybe Im imagining it's the treatment making me so unhappy, is it possible after just 4 weeks? My viral load will be checked next week but even if its undetected, I still have another 5 months treatment. what would happen if I give up next week if my viral load has gone. Please help,I feel like a total wimp and very lost and alone
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Hi Plute,
I am so sorry to read of your troubles. My heart goes out to you, because just having this horrible disease is bad enough. Support is so important, and your friends really wouldn't understand what you are going through.
I am wondering with the most recent wonderful medicines available to those of us who suffer from Hep C, why you are not on one of those? It sounds to me like you are having a horrible time, and raising children alone? so difficult
I am not an expert, but how did it come to be you are on Interferon? What prompted your doctor to select such treatment?
There are many kind, knowledgeable people on this site. I am sure they could advise better than I. But if it were me, I would really question why this was chosen as a way to treat the Hep C. I take my last Harvoni pill tomorrow. This is the preferred treatment for those of us with genotype 1.
you may want to include some of your information such as viral load, and fibrosis stage etc, and any other medical conditions.
You have come to the right place, hang in there. you will get great answers and advice here. Good Luck, your going to be ok.
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Hi Plute
Sorry to see it has been so hard on you I see you may be in the UK? I found National Institute for Health and Care Excellence (NICE) recommending simeprevir (Olysio, Janssen), in combination with peginterferon alfa and ribavirin, as an option for treating two forms of hepatitis – genotype 1 and genotype 4.
This is not what most of us now in the US are taking we are taking Harvoni one pill a day but unfortunately it has not been approved yet in the UK.
I did find this about Harvoni aproval status in the UK
http://www.hepctrust.org.uk/news/mar-2015/nice-recommends-ledipasvir-sofosbuvir-harvoni-treatment-option-some-adults-genotype-1
I know treating with Interferon and ribavirin can be very hard I cant imagine taking inferferon and riba as a single mom.
If treatment is too difficult for you I woul suggest discussing this with your doctor for their recommendations about when the new meds might become available.
If you have little to no liver damage at this point you could discuss with your doctor the consequences of discontinuing treatment and your chances of getting Harvoni when it does become available. Here many had had to fight to get Harvoni if they have little liver damage.
If you are undetected on your upcoming test for the virus and you stop treatment now it is very likely you will not clear the virus that is why the treatment is for that length of time. Undetected does not mean entirely gone.
Hugs too you I hope you can find help to complete this treatment or what your options are if you find it is just too much to bare.
Good luck
Lynn
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Hi Plute, so sorry to hear about what you are going through. Listen to Lynn K. I was lucky enough to be able to wait all these years for treatment - have had the virus for over 40 years. I refused to take any treatment with interferon and my slow progression with the disease gave me that luxury. I am now into 5th week of vpak and ribavirin with no bad side effects so far. Good luck to you and God bless.
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Hello, am new here so please forgive me if I make mistakes or am in the wrong forum.. I just started my treatment Tuesday 6/9/15 at 9pm. Other then knowing I have had Hep C for the past 10 yrs. Had one other treatment interferon, I am not to knowledgeable about the technical points of the virus (counts) but will begin to learn about them, am taking Ribavirin, Harvoni.
So far I have experienced a few symptom's , flu like, lost of energy, and muscle soreness. I am sleeping for about two hours a night, am awake for a few minutes then am able to sleep for two more hours. Sometimes find myself forgetting, trying to do more then one thing at a time, ending up doing nothing. (scary) at times. My family is supportive, wife, son and a brother.
Just want to become a member and share my experience , hope, and learn what other fellows are living life to become Hep C free.. thank you for being here.
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This is for Plute and JoeG.
Plute,
What ever you can do to stay on the treatment I would do. None of these are perfect. I went the telaprivir inter and rib deal for 6 months and relapsed. I got so mad and hurt I could not even think about treatment. I did talk to one guy and he said even though I had a bad experience and even felt bad when it finished, I gave my liver a break for 6 months. I relapsed after that That was about 2 1/2 years ago. Then came Harvoni, I took that and riba for 12 weeks, I had some of the same sides that I had before but not near as bad, I had the experience from before to fall back on.
Your liver is a one time deal, do what you can to save it when you can. Your treatment may not do anything but get worse but it may very well cure you, if you give it the time. I would have done it again if I could have back then, I just know what this virus has done to my body and I will do anything it takes to rid it of the evil I have put in it.
I can not help the side effects but more people get cured than not so try as you may, it could save your life and help your future with your children be even brighter.
Good luck and God Speed
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Thanks Junkyard!!
When you say relapsed, what dose that mean?
I understand when you say the treatment out weighs not taking it.
This is my 2nd day of treatment riba, harvoni, so far no real bad side effects.
Will be posting more.
Be blessed
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Hi brother I can answer your question also about relapse. I too relapsed last year after treating with Sovaldi an Olysio for 12 weeks.
After I was taking the medicine for 4 weeks I was tested for the virus and the result was not detected. My result was the same the day I took my last pills after treating for 12 weeks virus not detected.
When I was tested again for the hep c virus 12 weeks after I stopped taking the medicine I had a viral load of 2.4 million.
Because the test has its lower limit of sensitivity not detected is not the same as completely gone. So if even just a few virus cells are left the test can't see as soon as treatment stops they repopulate very quickly.
That is why we are not called cured of hepatitis c until at least 12 weeks after we finish taking the meds.
I hope that answers your question
Good luck on treatment
Lynn