starting hepc treatment

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kat57
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Date Joined Apr 2010
Total Posts : 23
   Posted 4/8/2010 2:24 PM (GMT -7)   
Hi, iam kat starting hepc treatments. Can someone tell me what to expect?

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 4/8/2010 4:17 PM (GMT -7)   

Welcome again, Kat.  Thank you for starting a new thread.  I know at least one member who did the combo treatment, so hopefully you will get some input soon.  I tried interferon when I was first diagnosed and my white count plummeted, so my doctor took me off (after first decreasing the dosage and frequency.)  I'm now waiting for the new treatment next year.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 4/8/2010 5:24 PM (GMT -7)   
I did the interferon/ribavirin therapy (pegasys,actually) for 48 weeks, about 5 years ago. I was stage 1. It worked and the virus was undetectable until 3 months later, when I had a cerebral hemorrhage. The trauma triggered the Hep C with a vengeance, and within a couple of weeks, I was stage 3, with cirrhosis. I got into a transplant program and received a liver 8 months ago. But, back to your question. You will develop a fever after the first injection and with me it was 102. The second week, it was 101 and the third and all of the following weeks it was 100, or just over. You'll feel like you have the flu, sort of achy and tired. I found the ribavirin to be more problematic. I had sores (not open) all over my chest and back and got thrush a couple of times. My red cells were low a couple of times and had to give myself shots to bring them up. All in all, I was tired a lot of the time and took afternoon naps often. I was able to work around 25 hours per week. I would give myself the shot Friday morning, which enabled me to work that day. By Friday evening I'd start to get the "flu." Saturday, Sunday and sometimes Monday I'd take it easy. Then it was back to work Tuesday, Wednesday, Thursday and back to Friday's shot. Some people aren't able to get through the program. I made up my mind, that I was going to get through this, or die trying. I believe mindset is what helped me do the entire regimen. From what I hear, the treatment is not as hard on one's body as it used to be. There are good people here that will help talk you through your journey. You have to try. Be well. **David**

kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/8/2010 5:38 PM (GMT -7)   
Connie,thanks for replying back to me. Iam sure someone will reply to me,Wish you the best of luck in 2011. MAY GOD BLESS YOU. Talk soon. KAT

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/8/2010 6:55 PM (GMT -7)   

Kat, I hope you see David's post above!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/8/2010 7:36 PM (GMT -7)   
David,thanks for the info. I will be talking with you more,and everyone else.Iam new to the computer but i will get better,iam already starting to feel better about this by talking with people in my shoes. I will put you in my prayers.good luck with new liver and may GOD BLESS YOU. KAT

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 4/9/2010 8:54 AM (GMT -7)   
Hello KAT, I just want to welcome you to HealingWell. I know that you are probably scared but you are doing the right thing. Getting educated on it so that you can make informed decisions about your treatment is priceless. So congratulations on making that first big step.

We have lots of wonderful members who are dealing with one form or another of liver disease. The sharing of information and the support that is given here is phenomenal.

Also congratulations on getting computer educated as well. Before long you'll be surfing the web like a pro.

Take care......thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/12/2010 9:23 AM (GMT -7)   
PINK GRANDMA, Thanks for welcoming to health well. Yes i get scared,but iam fixing to be a first granny, and that keeps me going strong. Ibelieve th daye good Lord is going to see to that. HE knows iam not finshed raising my son ,and now we have a baby boy on the way. around may 4. thanks again made my day. GOD BLESS YOU; KAT

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/12/2010 6:09 PM (GMT -7)   
Hi Kat,  or should I say Grandma Kat.  Grandkids keep us older folks young.   I have 2 more on the way myself......That will make 4 for me. tongue 
 
Hope you have a good evening.......thoughts and prayers....... 
 
 
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/14/2010 5:12 PM (GMT -7)   
Hello Kat, this is the thread that I posted on to you.  Hope you are feeling okay today.   Just keep coming back here to HealingWell,  if you are feeling down or have any questions....or just need to talk...some of us have walked in your shoes .....the rest of us have helped put on the shoes (caregivers). 
If you want to talk Grandma stuff my email is in my profile.  Feel free to email me anytime.   Thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/14/2010 6:51 PM (GMT -7)   
HELLO Pink grandma, with connies help i finely made it to the right thread. Thanks for the thoughts and prayers, may GOD BLESS YOU. talk later KAT;

GSDgirl
Veteran Member


Date Joined Mar 2010
Total Posts : 1286
   Posted 4/14/2010 8:22 PM (GMT -7)   
Hi Kat, I am not usually in this forum but just happened to stop in. What geno type are you? Did you have a biopsy, if so what was the result? It would be in your best interest to get copies of ANY & ALL lab test results. I treated 2 years ago and still do not have any live virus which means that I am SVR or clear of the disease but I will always have antibodies kind of like if you had chicken pox as a kid-you always have antibodies but are not sick

Not sure who told David that something could "trigger" the hep c to come back unless one is actually reinfected. The game plan is to get tested at 6 months and then at a year, some doctors do test at 3 months. If you are clear at 6 months you more than likely are clear and done worrying. if the treatment did not work, at 3 months I have heard that the viral load goes off the charts.

There are a few more very good websites one being www.medhelp.org , go there and poke around till you find the hep c area. It is a pretty busy place but there is a ton of info, most of it very accurate and very helpful people. Take care. Oh BTW,
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR),  disc problems in neck, depression, anxiety & stress
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/15/2010 6:44 AM (GMT -7)   
GSD, I should have begun by noting that my doctors made the point from the beginning that you can't be cured of Hep C, by the treatment. The term is that if the treatment works, it's becomes undetectable. It is always there. No reinfection was needed. My bodies defenses were compromised by the hemorrhage and the virus came back stronger than before. I now have a transplanted liver and so far, no problems. I still have Hep C. After a transplant the virus often comes back stronger to attack a "fresh" liver, even harder than before. So far that hasn't happened to me. **David**

kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/15/2010 7:49 AM (GMT -7)   
GSDGIRL, Geno1A no i havent had a biospy,this has been going on since 8-14-09, i have bld.wk. again 6-10-10 baylor doc. 6-24-10, my liver doc here. bld.wk. 7-26-10 doc. 8-5-10. Then i hope i no were i stand. Its a BIG ? for me. THANKS KAT; keep in touch.

GSDgirl
Veteran Member


Date Joined Mar 2010
Total Posts : 1286
   Posted 4/15/2010 7:56 AM (GMT -7)   
David, we were not talking about transplant but I am really glad you are feeling good!  Our goal is to reach SVR which is no live virus found 6 months after treatment is completed, I used the most sensitive test that went as low as either 2 or 5.  At 3 months after treatment it is too early to tell if TX (treatment) worked.  Apparently yours didn't.  Also at 12 weeks into TX hopefully for any of us, the virus is UND (undetectable).  I wish you all well!!
 
Below is a really good article that I cut and pasted and here is the link   http://hepatitis.about.com/od/treatment/f/SVR.htm
 
****************************************************************
CDC
 
<script type=text/javascript>if(zs<1){gEI('spacer').className='hide';gEI('sidebar').className='hide';}</script>
Question: What Is a Sustained Virologic Response or "SVR"?
Answer:

SVR is the closest you'll get to "a cure" for hepatitis. Sustained virologic response, or SVR, is the goal of hepatitis C treatment. Conventional treatment (a combination of interferon and ribavirin) doesn't necessarily eliminate the hepatitis C virus from your liver. It can, however, suppress the virus to undetectable levels for an extended period of time. In clinical language, this is called a "sustained virologic response," or sustained response. It means that during the six months after you complete treatment, there is no detectable hepatitis C virus in your blood.

SVR is a good thing. Studies have shown that with a six-month SVR (which means no detectable virus in your blood for six months after finishing treatment), relapse occurred in only 1-2% of patients. So, for every 100 people who finished treatment and attained SVR, the virus will return in only 2 of them. However, for these people, the virus never really left. The medicine was able to eliminate most of the virus (so much that medical tests couldn't detect it), but after treatment ended, for whatever reason the virus was able to continue replicating itself.

Early SVR is beneficial. Since the liver has incredible regenerative ability, achieving SVR as quickly as possible is important. This is important because some liver damage can be reversed if the cause of the damage is removed. After SVR is reached and depending on the degree of damage from the virus, the risk of hepatocellular cancer is reduced and about 25% of people see an improvement in fibrosis.

SVR compares one treatment to another. For those in treatment, SVR is the goal. However, for physicians and scientists researching new hepatitis treatments, SVR is also used to evaluate new medicines and compare them with proven therapies. For example, depending on the genotype, treatment with interferon alone usually achieves SVR in 15% of the patients. When interferon is combined with ribavirin in the same genotype, SVR is increased to 70% in some people.


Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR),  disc problems in neck, depression, anxiety & stress
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 


GSDgirl
Veteran Member


Date Joined Mar 2010
Total Posts : 1286
   Posted 4/15/2010 8:34 AM (GMT -7)   
Kat, since you are genotype 1a you definately should be getting a biopsy.  If your doctor is not recommending one find another doctor!!  Make sure you get copies of ALL your test results, it is much easier to get them as you go rather than trying to get them all at once 2 or 3 years from now, honest, I didn't know any better and wish I had been given this advice.
 
Although geno 1a is harder to treat and the treatment is longer (48 weeks instead of 24) you can reach an undectable status.  If you get a liver biopsy and I hope you do, you might be able to wait for the new drugs or even get into a trial where everything will be paid for and you would be very closely monitered.  I do not know everything about this disease but I did treat for geno 2b and am still SVR 2 years after treatment.
 
David, the fact that you needed a new liver tells me that you had a lot of damage to your liver and probably stage 4 cirrhosis.  There is clinical data and research that states that the more damage the harder it is to clear the virus.  Notice that nowhere in any post do I say cure, I say clear or SVR and I did state that we will always carry the antibodies not necessarily the live virus.  I just had mine done again 2 years after treatment and am still clear.  All of my doctors have told me that the only way to "reactivate" the virus is to get reinfected, which is not going to happen if I can help it.
 
Kat, you can email me privately my email is available.  Oh and BTW there is NO other cure so please do not spend a fortune on herbal or whatever cures
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR),  disc problems in neck, depression, anxiety & stress
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/15/2010 10:22 AM (GMT -7)   
GSD, At 3 months into the interferon/ribaviron therapy my Hep C was undetectable, as it was at 6 months, 9 months, a year (48 weeks, the end of the treatment) and then 3 months afterward. A couple of weeks later, I had the cerebral hemorrhage, liver still OK, a little less than three weeks later, a seizure and hemorrhage that threw my Hep C into overdrive. I almost died of liver failure at that point. I came back from that, but my level was a high stage 3, with cirrhosis. I went almost 5 years, with a MELD score in the low to middle teens, until a week before the transplant. I was clear for almost a year and then a traumatic medical event knocked me down. Good luck with your staying clear. and, you're correct about not using a bunch of herbal cures. Your doctors know best. Be well. **David**

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/15/2010 10:38 AM (GMT -7)   
I would also like to note that genotypes 2a or 2b have a much higher success rate with treatment than 1a or 1b.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 4/15/2010 12:43:48 PM (GMT-6)


GSDgirl
Veteran Member


Date Joined Mar 2010
Total Posts : 1286
   Posted 4/15/2010 11:13 AM (GMT -7)   
David, I guess I misunderstood your timelines.

hep93, you are correct but 2a's & 2b's do fgail TX

good day all
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR),  disc problems in neck, depression, anxiety & stress
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 


ITGal
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/19/2010 8:06 PM (GMT -7)   
I am genotype 3 and plan to start the pegylated inferon/riboviron in May on the 24 week program. (I feel I am about to loose 6 months of my life to this treatment so trying to plan accordingly.) I am wondering if anyone has added or worked any additional non-traditional methods with their program. I've been reading some about Milk Thistle & taking extra Vitamin D. I personally would like to do all I can to enhance my program but want to make sure I add the correct combination of products and dosages. I told my dr I wanted to try to continue to to exercise and she said..."you are not going to feel like doing any of that" Gee, that's encouraging. I want to be realistic, but also don't want to be too negative either. I would be interested to hear if anyone has tried these or has other suggestions. I am already vegetarian and have been (attempting) to eliminate the processed foods even b\4 being diagnosed. So, got the healthy eating covered. Thanks!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/19/2010 8:20 PM (GMT -7)   

ITgal, welcome to the forum.  As a genotype 3, you should do well with treatment.  However, you need to discuss any additional (nontraditional) treatment with your hepatologist, as anything you take in combinaton with the treatment meds could be harmful (or of no help.)  From those who have been through treatment, I've learned that it feels like having the flu.  That's probably why your doctor said you wouldn't feel like exercising.  It's great that you are eating properly.  Some on treatment become depressed as a side effect, so your doctor may prescribe an antidepressant.

Good luck with your treatment!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/19/2010 8:28 PM (GMT -7)   
I did the entire 48 weeks. There were plenty of times I felt crummy, but the trick is to make your mind up to get through the treatment. My attitude was that I was going to die trying. Your doctor said you won't feel like exercising. That may be true, but it doesn't mean you can't. I'm a tile/stone setter. I carry heavy bags of cement (50-90 pounds) and grout, not to mention boxes of tile or stone products. I also mixed mortar and carried it to the job. While on the cocktail, I worked fewer hours and was more tired, sometimes necessitating afternoon naps. But, it can be done. I realize some people aren't able to physically get through the treatment. Nothing can be done about that. A positive mental will take you further, than if you were to listen to your negative doctor. One trick I found, was to give myself the shot on Friday morning. By that evening I'd start to get a mild fever (100-101) and feel flu like symptoms. Saturday and Sunday, I took it easy, watching TV or reading and getting rested. By Monday I'd feel better and go to work mid morning. Tuesday through Friday I worked and Friday night I was sick once more. It wasn't as bad as it could have been. Now, it's an old memory brought back when someone like you posts here. I had a few bad times, low red cells, thrush, hair falling out and other minor issues. I'm glad I did it. Stay strong, it's a brief journey (more so for you: 24 weeks vs. 48). You'll be fine. **David**

ITGal
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/19/2010 8:35 PM (GMT -7)   
Thank you David and Hep93 for the encouraging and positive posts. My friend and I have found a slight bit of twisted humor in calling it "My "hepC diet" Maybe I will finally be able loose that extra 10 lbs I can't get rid of! I don't want to cry so, sometimes it's easier to find some humor with myself where I can. (I hope that does not offend anyone)

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/19/2010 8:46 PM (GMT -7)   
ItGal, That's the right attitude! My favorite saying (well one of them) is I'd rather laugh than cry. Many of the people I've encountered in a Hep C group I'm in and on the web have a sick sense of humor about our condition. I've never been depressed for more than 15 minutes. That's no fun. I really believe a positive attitude will enable you to get through. I lost very little weight when I went through the treatment, maybe 5 pounds. I had a little help from a herbal treatment. **David**

Turns
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/21/2010 1:28 PM (GMT -7)   
kat57 said...
Hi, iam kat starting hepc treatments. Can someone tell me what to expect?


Hi Kat,
I did the Hep C treatment in 2004-05. I have a lot of information if you want me to share with you. I hope you will do one thing, your life depends on it. Never stop drinking water. Sit in the tub 3x's a day. The treatment drugs are very toxic. They can shut down your kidneys. This is what happened to Natalie Cole. She went off TX to have a kidney transplant.

I have the hardest geno type and I would never do the TX again. It leaves a lot of damage to manage that is caused by the toxic chemicals. It is chemo therapy and we are the only people doing chemo therapy for an entire year or six months if we are lucky. I had a year of interferon.

It is everyone's personal decision to treat or not treat and I mainly did it because everyone wanted me to but it did not work. I am no more ill today than I was before TX but yes having Hep C for almost 40 years can cause a lot of life problems to deal with. I have end stage liver disease and had that in 2003 when they did the biopsy. I have to rest a lot and I can't work anymore but I am alive and sometimes I truly enjoy life but most days are quite difficult for me as I live managing this illness.

I hope you have a lot of friends and family to look after you and love you through all of this.

Good luck, please remember the water, at least one gallon a day. I never was without water bottles all around me all of the time at home or wherever I went and I believe that saved me some serious complications. For this I am thankful as I have plenty of complications anyway from TX.
Turns
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