Ok... I have Hepatitis C. I have known this for a while! I had a liver biopsy a few months ago?And that was one of the most painful things that I have ever gone through!!But that aside... My doctor wants me to start taking the drugs peg interferon alfa (pegassist), ribavirin, and victrelis... This was back in january when they told me this... I still haven't started taking the meds! The reason is because I have heard sooooooo many horror stories about the side effects with this treatment! I am very sensitive to drugs and if there are side effects,i usually have them and I have the bad ones!!Also... There is no promise that if I take these drugs and get through them that I will still not get sick from hepc and die anyway!!! What I am asking is for anyone and everyone who has been on this drug therapy for hepc or who has had a loved one on it to tell me their experience... Good or bad!!! Do not lie to me!!I need the absolute truth so that I can make my final decision about these meds! From what I have heard it is horrable!!! And I don't have time to be sick for the next year and a half! I feel better now than I ever have since I have been on the methadone program and off of drugs and I do not want to mess that up with this treatment! Especially if there is a big chance that it won't work anyway!!Your honesty is very appreciated!!Looking forward to your responses!!Thanks!!! Recoveredgirl!!~~~
Hi Recoveredgirl67, I am really sorry that your having to go through this and making the decision about should you take the drugs or not. I haven't taken any of these drugs or know anyone with Hep C, I really just wanted to say to you I read what you wrote. I will be thinking of you and really hope you get the truthful answers you are looking for. But just keep in mind everyone is different so even if you get some advice, just remember we are all different and will react differently to these medications you are thinking of taking. Take care Liz.
Hey recover girl. Ur gonna need ta relaxe a lil . I've been fighting this for years this new meds give over a 88% rate of total remission . And that's a wonderful thing . Sounds like u never even tried it yet . And yeah it's pretty rough at times . But u better cowgirl up and git- r- done. I'm doing the meds now for the 4 th time in over 14 years finally adding this victrelis so it will never come back again . you'll change ur mind when the hep has got u in so much pain in ur joints and muscles that u can't walk . So do the meds . I've seen 5 close friends die at 50 cuz of this and it ain't pretty ... So chill and do the meds . U can ruin ur life running dope and u work on getting off dope so go all the way and get right ..ive been there done all that 30 years ago .. I hope u change ur mind and tough it out. Or you'll wish u did .
Well Recoveredgirl, I am in the same situation. I have Hep C, and have
known about it for more than 10 years. I have seen many people go thru
the treatment and get soooo sick. So my decision, as a 55 yr. old female
is to go to my specialist once a year and he does blood work and checks my viral load, I'm functioning fine and I am letting nature take it's course...
I know there is a new med added to make remission at 75%, But, I am way
too scared. And I don't like my decision, but live fully, and pray. Good Luck!
Hi there, I am currently on the "triple threat treatment" and have been since August 15, 2012. There is nothing to worry about here. I was so excited to have a Dr that was aggressive enough to offer me this option. The old treatment doesn't have good long term results, this one does. Also, I am 50 years old and I didn't want to put it off and either die in 5 years or be going through it or no longer qualify for it in 10 years.
I, too am very sensitive to medications.
Yes, I have nausea that reminds me of morning sickness, that is controlled with Zofran.
Yes, I am exhausted and spend a lot of time resting (no small children).
Yes, I have lost most of my hair, but I will be alive for it to grow back, and to be honest I can do things I wasn't brave enough to do, like weird colors when I cut it short. I HAD FUN WITH IT.
I go once/twice a week for bloodwork and due to my body's reaction to the treatment (very low WBC to begin with) I have spent weeks isolated at home, but that is not the normal for patients.
I am already showing great improvement in my liver function bloodwork and may be able to end treatment a month early, we will see.
Knowing what I now know about these 3 meds, I wouldn't hesitate... the little bit of inconvenience they create is well worth the payoff of me being here to welcome grandchildren in the future and 20 extra years on this earth.
Good luck to you and don't worry, your Dr will follow every little thing going on with you right down to chapped lips!
No hesitation on my part, I am 60 and have a low drug tolerance. My situation may be different than yours. I am in week 46 of 48 of the triple w/Victrelis. I am on the 48 week schedule because I had a liver transplant 11 years ago and have had HepC for over three decades. I was not in the primary risk group, so a transfusion in 1979 after an accident was my only conclusion. I was diagnosed 13 years after getting the virus, with a nonA-nonB and given a prognosis that ranged from no symptoms, to potential liver failure and then death 6 years later. Two plus years on the transplant list, I received a liver transplant, as I was about to die. I still had HepC post transplant, but my doctor said the treatment may get better in the future and my liver lasted for 20 years with HepC, so it would be better to wait to do treatment. The HepC started to effect me a few years later, but I was more aware of what to expect.
My doctor was wrong about the symptoms the first time, which I was told were due to cirrhosis leading to the transplant. I believe the HepC has its own symptoms on the body and brain, that are not related to the liver. It was much easier to differentiate the symptoms. I was getting sicker and assumed it was cirrhosis, but it turned out to not be as bad as I assumed. I was weak 24/7 and my memory was toast. My doctor recommended I start Interferon/Ribavirin, but I had been following the the newest drugs and decided to wait a year, against his advice, to get new ones that were coming out in 2011. I knew the side effects, because I studied the trials, but couldn't get it until they had a post transplant protocol. I started in Jan 2012. The shots kicked my butt out of the gate for 24-36 hours, but two days later, I had more energy than I had for decade, then the shot would kick my butt and the cycle repeated. I could literally feel the virus leave and it all seemed manageable. Then when I added the Victrelis the good days, became tired days and the next thing I knew, the shots have almost no side effects, when the virus was gone, but I was super tired 24/7. Then my hemoglobin fell and my Ribavirin was cut back, bringing me back to over 10 after a few weeks. I have been on schedule for the HVC log drop and all the viral targets, so I have been virus free for the majority of 2012. I am very confident going forward and believe 2013 will be my healthiest year in decades, even if the virus returns, which I don't believe it will. I can't count the times I have heard and read "incurable", but they don't use that term with HepC anymore. The wonders of modern medicine have saved my butt multiple times and the timing has been unbelievably lucky in my situation. Good luck, whatever you choose.
Part of the 1st test group in North Texas.
It was referred by me endocrinologist after two unsuccessful rounds with peg interferon alfa, ribavirin for genotype 2B Hep-C. He was very honest with me and let me know that minorities do not have a great chance of recovery with the treatment but I did it anyway. The first round I was very fatigued and depressed through the whole treatment with a body temperature of 102 daily. It was like having the flu for a year nonstop. I didn’t think I could do it. I did not have a successful round two but I did have much less side effects.
When both treatments did not work for me in 2008 or 2009. He told me they had a better treatment for people with resistant Hep-C 2B, then in mid 2010 I was offered a trial of the trio combo doses of Peg Interferon Alfa , Ribavirin, & Victrelis.It was not made available to me until January 2011 I was the first person to take the treatment in my area. So they had no idea what the side effects would be. I was willing to do anything just not to feel the way I did all of the time (fatigued). So with 1 shot a week of the Peg Interferon Alfa, 12 Ribavirin pills & 18 Victrelis pills a day. Within the first 8 week I was almost Hep-C free (viral load started at 4.5 Million) it was recommended that I complete the full 6 months for best results. At 6 months I was fully cleared and Hep-C free. Then at 1 year then at 18 months still no Hep-C that was August 2012.
I had horrible side effects almost total hair loss (feel out in clumps every time I washed it in my hands I almost lost it), all day body aches, headaches, body bloating, fever, night sweats, insomnia, sever moods swings, serious dental damage & tooth loss due to the amount of meds in my system my mouth stayed dry and always tasted like the pills ( YUCK!) I had horrible halitosis too. It took almost 1 year to grow my hair back ( I had to shave it off to get it to grow back way to thin you could see my scalp) thank God I had an abnormal amount of hair to start with now I have regained about 80% of my hair I don’t think it will ever grow completely back.
I am back to my old self full of energy and life no more fatigue and I would do it all over again even if I lost all of my hair! No major after effects only a little liver tenderness now and again but that is to be expected the liver is the only organ with nerves they call it growing pains. The pain is from repairs my body is making to my liver I am good with that. Thank GOD for this treatment, it saved my life! By the way I am an African American Female and started the treatments at 38 years old. I am 43 and free to do whatever I want to do in my life with no fear. IT WAS SO WORTH IT!!!
I hope this helps someone dont give up it will work.
Happy To be Free
My GI Doc set me up so that I get my meds Fed Ex'd to me once a month, since two of the meds have to stay in the fridge, they send it in a Styrofoam cooler with at least four ice packs. I have always gotten the delivery on the same day that they send it out to me. Interferon and Victrelis have to stay refrigerated or they will go bad. Best of luck to you! I hope that you are going to do the treatment. I have six weeks left out of 24 weeks, and I have had four undetectable blood tests come back. I now have a better than ninety percent chance of being cured :) Best wishes!!!
I am going on my second week of treatment with interferon, ribovirin and teleprivr and I will tell you honestly that I just want to die. I cry as I type this to you because I feel so horrible. Everything hurts including my scalp and skin. It feels like the worst flu you've ever had times 1000. I don't know how I can make it through this! I feel like this treatment is going to kill me much sooner than the hepc would have. The third drug apparently is the worst one which will be stopped after 14 wks. Triple therapy was a must for me since I am genotype 1a. I am going to try to make it through. There is no doubt about it, it will make you feel horribly sick. Get all of the facts and information that you can before you make your decision. And yes the biopsy was horrific for me too. I hope this helps. Good luck to you
Hi there I know how u feel? I moved out to BC away from my ex. I wanted to change my life and be happy. Well I did and found my true love, got married and is living a great life. But then all of a sudden I was feeling tired all the time, felt nauseous, cranky, moody and didn't feel good all the time. So I made a appt. with my doctor and got some test done well I was waiting patiently to hear my results. I came out of the doctors balling my face off thinking that my world was going to end because they had diagnosed me with hepatitis C the first stage. I was crying, mad at the world and thinking this was the end of the world. My fiancé at the time was very supportive and understood and said don't worry I still love you and we can get this taken care of. Well to make a long story short, I met with a doctor in Salmon Arm that had this program to get rid of the virus called the pegassist program where I would take peg interferon and ribavirin.
Now I was kind of nervous taking this medication because I hate taking medication that I'm not sure how my body will take it. The doctor explained the whole program and when and how I was suppose to take the medication. I said what's the worst that could happen, right. So I ended up doing the program which was for 6 months. So it was one shot in the stomach once a week and 4 pills once daily which would be two in the morning and two pills at night. I was very hesitant about doing this. But all I was thinking was positive thoughts. I had follow ups with my regular doctor. At times I kind of was feeling tired and nauseous but it was the medication. Also at times my platelets were very low but the doctor was keeping a eye on them and it was the medication. I did end up finishing the whole program and had the final blood test results and the results came up negative which is really good. It was a long process with the medication and there was times where I didn't want to take it. But your to take the medication at the same time everyday so that your body gets used to it. I never once missed my medication. But I would definitely recommend that you do follow thru with this medication because you never know your body may fight off the infection. I was kind of nervous but I went thru 6 months of taking this medication, follow ups with dr. appts. it was a long process but I managed to go thru with this program and was happy to finish it from start to finish. I did end up managing to fight off the infection and no longer has hepatitis c virus. :) I am extremely happy to know this program and medication helped me fight this. The medication didn't really make me feel sick, just tired and weak at times but I just wanted to out every effort and strength in me to fight this and I did. :) I would look into maybe speaking to a hepatitis C clinic and see if u can go thru this program, it definitely helped me and it was a long process and long haul of this 6 month program of treatment but I had the courage and strength to go thru with it. I am very happy with the outcome of this whole program and my file is now closed because I did fight the disease. :) I hope this is very helpful for you and hope that the program works for you like it did for me. :) if you have any more questions pls don't hesitate to reply back to me. The program truly helped me a lot and I feel great now and can go on with my life.
After doing soo much research I found a study in San Antonio, which is where I live. I don't have insurance and these drugs are about 100,000 for full treatment. The studies are out there, you just have to look, or maybe even move to a city that offers the treatment, Which was what I had to do. Good luck to you! Hope this helped
Hi. I urge you to take this medicine. I did and i have depression an was worried. I was tired,queezy,some headaches, ache, but who isn't when taking meds. I also saw my syc dr. That helped. It did wonders for me. Also, I found free meds through a pharmicuitcal company &didn't cost a thing . Roche Foundation and Genentech. Please let me know how it goes.
well I might be able to help a little I was on all three of the drugs I ended up having to take them for 10 months I did have side effects but not as bad as some people and I'm real sensitive to drugs is well, at first I was really dizzy could hardly sit up without getting really light headed and I did get feeling really blah um I lost a lot of weight which was good I can't remember the week spit like 27 weeks or whatever it was I am have the choice to stay on the treatment a couple more months to make sure that it was gone um and this was like a year and a half ago 2 years ago maybe.. I feel healthier than I have felt in 20 years I would go through it again to clear that virus out of my body my liver enzymes or whatever are perfect just like I never had the disease.
I just want to let you know good luck and it's a personal choice I started working about 4 months into the treatment which was real struggle but there was nothing better than to hear that I'm free of the virus.when you thinking help see you only think of your liver damage it damages so many other things in your body you could also get lymphoma from it and a few other things so its its to me it's worth it is we're 6 to 10 months..
Dear Recovered Girl:
I hope you have waited to be treated. There are two safe and effective treatments now with only mild side effects, if any. One has been FDA approved and available to the public (Sovaldi/Olysio). The other has just been submitted to the FDA for approval (Sovaldi/Ledipasvir).
Try the combination of Sovaldi/Olysio. Before taking this combination, your doctor has to test for a genetic mutation of the 1a virus that does not respond well to Olysio. If you have that genetic mutation, wait until October, when the combination of Sovaldi/Ledipasvir should be available.
I would stay away from Interferon and Ribavirin, although the drug companies will continue to push it in order to make money off of it.
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