Author Topic: Harvoni Side effects (Read 2192367 times)

anniemybaby · « **Reply #700 on:** January 20, 2015, 05:51:15 pm »

Thank you and I'm taking it day by day it only took fighting with mg insurance company months before they agreed to it I've been reading people need to take ribavarin while taking harvoni why is that?

Katie · « **Reply #701 on:** January 20, 2015, 07:49:15 pm »

Lynn: Thinking good thoughts for you.
Amj: hope you have good news with your test results.

To Annie and Bob V
Welcome Annie. It is very scary at first but the more informed you become you'll learn you're going to be OK. I felt like I was a biohazard for years after I got my diagnoses but now that there is a cure I am very hopeful and looking forward to kicking this monster. In a few years, Hep C will be a thing of the past, and we are on the breaking edge! I find it exciting and am grateful this cure came about for me, and everyone in time to give us our lives back! With a low virus load, you will respond quickly and you have support here. You aren't alone!

Bob, Congratulations on your great results! My 4 week test came in at 59. Remember the first 4 weeks killed millions and now you have another 4 or 8 weeks to go to get rid of just a few. Even those without detection could very well have some under the test's ability to count them and none of us will know if we are clear of this virus until a good 12 weeks after we are finished. The tests during treatments only tell us if it is working, and yours is definitely working and so is mine. So please don't stress about it.

Viruses are strange, unearthly parasites and since they have had this marvelous breakthrough we will kick it once and for all. I feel very confident about this. I am very fortunate as I am healthy other than joint issues, but have no other medical problem and have no negative side effects other than small, slightly annoying things that come and go. Perhaps they aren't even related to the treatment! All in all, I am feeling better than I have in years and so just keep drinking your water, eat as good as possible and rest! I am finally able to sleep as I suffered with severe insomnia for many years. Now, I am sleeping like a log and actually waking up rested. That in itself is so wonderful, I don't have words to describe. Yes, sleep is a beautiful thing. Focus on the positive and try not to stress out over things, which sometime is easier said than done. Know you are not alone and we are here for you.

Katie

Haggis · « **Reply #702 on:** January 20, 2015, 08:51:38 pm »

Hey folks. Quick update. My labs at 3 weeks came back undetectable, so yay for me. I still get a couple headaches per week, generally in the middle of the night or early morning, which is weird. (I wake up in the middle of the night with a headache and sometimes carry it through the morning.) No biggie.

Pretty kick-ass, right?

badbradley · « **Reply #703 on:** January 20, 2015, 08:55:24 pm »

Right on Haggis!!

Bob V · « **Reply #704 on:** January 20, 2015, 09:51:47 pm »

Katie
Thanks for the post, I kinda needed that. Glad your better too.

Haggis
That's great news.

anniemybaby · « **Reply #705 on:** January 21, 2015, 05:47:45 am »

Katie thank you I find after I take my harvoni and go to bed I some I wake up feeling very strange like I slept for hours and it'll only be a half an hour I feel very very groggy n have a hard time functioning in the morning this is only day 3 for me

Katie · « **Reply #706 on:** January 21, 2015, 06:17:50 am »

Annie just give yourself some time and nap during the day if you can. I can't as I just am not a napper. $:-\$ Quite a few on Harvoni are sleeping better so I am hoping that will kick in for you. Do you think part of it is because you are so nervous about the treatment? Our subconscious can do things. When I think about it, others have had sleeping issues so maybe it just affects people differently too. Hang in there. The time flies by and you'll make it!

Katie
Be sure to drink at least 1/2 gallon of water a day to flush out toxins. That is important.

JoeK9999 · « **Reply #707 on:** January 21, 2015, 06:33:42 am »

Bob V - Listen to Katie. I also was detected at 4 weeks. I was in the first group to start Harvoni and freaked out because I was hearing of all the undetected at week 4.
It turns out that that has nothing to do with SRV12 /SRV24 cure rates.
Also as time goes on I am seeing more and more that are not undetected right away.
Also I mention this all the time, but here I go again. Lucinda, one of the moderator's and a longtime Hep C columnist who was in the trials was undetected at 4 weeks, then was detected at 6 weeks and she is cured. When I called Gilead after my 4 week test, they told me treatment is Not based a on treatment results and to finish the recommended beginning treatment plan with a test at 3 months post treatment.
That's all we can do and the stats say most will be cured. The overall trial results included failures of people that were lost to followup and some of the tables show how many they were. We have to base results on the people that were followed.
I am done with treatment and have 11 more weeks before I take my 12 week test.
And I will have anxiety until that time, but all any of us can do is pray for our SRV.

kate0b1 · « **Reply #708 on:** January 21, 2015, 06:45:37 am »

@joe, lol, i am still waiting for my 4 week labs and am already worrying about my june labs (12 week post). Im not so much worried about this lab (well mostly) but having relapsed last tx puts a different spin on it.

kate

JoeK9999 · « **Reply #709 on:** January 21, 2015, 06:57:45 am »

Kate,
I have put so many spins on mine from unknown Resistance-Associated Polymorphisms
that may be lurking in my body, if the food or water I am drinking or even anxity has reduced the potency. The longer we take this stuff, the more of a worry wart we turn into. Human nature. We all have the best odds ever to rid ourselves of this.
We all have to hang in there a little longer and keep the faith. That's all we can do.

mario555 · « **Reply #710 on:** January 21, 2015, 08:52:01 am »

Joek. Happy to hear you finished your treatment! The best, best, best wishes for SVR12! you see, me too I'm some kind of freak with polymorphisms, who must be affected by stuff I eat, wrong water I drink, things I do or shouldn't do. All of this will probably affect my cure, worsen my case, etc... As a worrywart I'm quite famous!
As someone here said "We've never won any kind of lottery so what makes us think we could be" the one freak of nature" who won't be cured!
I 'm so worried that I was borderline 12-24 week treatment and I was happy to help push for 24! We' ve had so many deceptions before that most of us can't really believe we'll be cured!. Then I read posts here and realize we'll probably all be cured in 2015. I'm at week 10 out of 24 and I need to read you guys results after 4 or 12 week post treatment results. Keep writing and good luck!

Bob V · « **Reply #711 on:** January 21, 2015, 10:57:09 am »

Joe K
Thanks for that, I've been running this though my brain since yesterday.

Congrats on finishing tx and best of luck with SVR.

Lukey · « **Reply #712 on:** January 21, 2015, 01:09:27 pm »

Bob V and Haggis - Congrats on the good results but IMHO, I think you should make a new post and tell us all about it. There are some or many of us that do not go into this thread every time it gets replied to.

Why hide your good results in this thread?

Bob V · « **Reply #713 on:** January 21, 2015, 04:07:16 pm »

Bob V and Haggis - Congrats on the good results but IMHO, I think you should make a new post and tell us all about it. There are some or many of us that do not go into this thread every time it gets replied to.

Why hide your good results in this thread?
-----------
Lukey
Where should we post them?

concerned father · « **Reply #714 on:** January 21, 2015, 04:56:44 pm »

20 years ago my wife and I adopted a gorgeous baby girl. Prior to the adoption, we were told that she had been infected with Hep C by her biological mother at birth. This virus didn't change our minds about adopting her as we both fell in love with her the second we saw her. Although I’m not a very spiritual person, I kept praying for a miracle treatment. Harvoni is here and I think that I received the miracle I was asking for. However, our daughter is reluctant to start the treatment for fear of the side effects. Although they are minor compared to the potential outcome, she is still reluctant to start the treatment. Do you have any advice?

Doluska · « **Reply #715 on:** January 21, 2015, 05:09:12 pm »

Show her Simptoms of cirrhosis and outcomes of HepC. Not just your opinion, but published statistics and medical facts. It is better to be scared, than untreated. Side effects are minimal! D

Lukey · « **Reply #716 on:** January 21, 2015, 05:39:25 pm »

I had Hep C for 32 years and had headache and constipation on Harvoni only for a few days but now those symptoms are gone. It's not bad at all and by now I may have kicked my HCV all the way to Jupiter.

Reassure her that there may be slight headache and flu like symptoms (that respond well to Tylenol) for a few days but the light at the end of the tunnel is not a train coming at her.

Please keep us updated on her progress and post it in new posts if possible so we won't miss it.

Joe

anniemybaby · « **Reply #717 on:** January 21, 2015, 06:43:55 pm »

I was wandering about something since my Dr only has me on the 8 wk harvoni at the end of my 8 wk mark if I'm still detectable will I have to start over or will she just keep me on it for 4 more weeks I guess I've been reading a lot of posts and I haven't seen anyone that had just an 8 wk course feeling nervous I hate this I want this out of my body NOW

Katie · « **Reply #718 on:** January 21, 2015, 06:59:01 pm »

Bob and Joe...It is human nature to over worry things. I know every time someone says they are undetected at 4 weeks, a little doubt creeps into my mind since I was still detected with 59. I just remind myself of the facts and how the virus works and how the treatment works and I feel immediately better.

Focus on the positive. So many little things are improving with me. Things the doctors or the trial runs don't address or maybe even know about. Just think how poorly our liver has been working for the last decade or two or more. It's primary function is to remove toxins and it hasn't been able to do that with the attacks of this virus.

Our bodies have been slowly poisoned and ill health has been the result and some of it creeping up to where we felt it was normal due to aging or whatever. My skin texture has improved, my tinnitus seems to almost be gone on occasion although it does still kick in. I am sleeping and DREAMING, my fatigue is gone, my brain is clear and working again, the arthritis in my wrists is hardly even noticeable where as a year ago I couldn't open anything, could not stand any twisting movement or flexing the wrist back. (This is a HUGE deal)

I know if I mention some of these things to my doctor, he will not attribute it to the treatment, but whether is is being better hydrated, or sleeping better or the actual Harvoni, the treatment is the cause for all of it and I am grateful; so very grateful.

That's my spiel for today! Ha!

Katie

Mugwump · « **Reply #719 on:** January 22, 2015, 02:04:23 am »

Quote from: Doluska on January 21, 2015, 05:09:12 pm

Show her Simptoms of cirrhosis and outcomes of HepC. Not just your opinion, but published statistics and medical facts. It is better to be scared, than untreated. Side effects are minimal! D

I see this from a different perspective and respectfully disagree as I believe the daughter might not just be scared but have a healthy skepticism towards ever being free from this disease.

Dear Father

Please consider telling her this;

My beautiful daughter Megan wept as I kissed her forehead and told her that there was a new treatment and it promised to at least give me a chance to live out the rest of my days free from HCV. It was one of those moments that only a parent and child can understand fully.

She was never stern with me when I refused going for another course of interferon and told her that I would not go on the transplant list or even consider putting another human at risk by accepting a partial transplant from a close match. I have had a full life so it is only fitting that the option of getting a transplant go only to those who have never had the chances at life that I have had.

I know my decision to not consider the transplant option when the disease finally put me down two years back upset her and my spouse greatly and I do understand fully why it did. It is extremely hard dealing with this disease.

Perhaps she is just waiting and knows that the past treatments were not that great. As one father to another it is best to help keep her mind open to the possibility that this treatment really is the cure we have all prayed for. She is still young and most likely not suffering greatly from the disease as heavily as some who were infected later in life. Her immune system must be good and most likely has kept the disease from causing cirrhosis.

If she is just waiting to see if there are relapses then that is ok, as someone who has HCV I can fully understand her reluctance.

Instead I would strongly encourage her to keep up on what happens in the next little while to those who have been treated with Harvoni and understand that if she waits too long and the disease progresses it can cause serious side effects other than just the premature death of healthy liver cells. Which is the same problem that happens to most individuals with chronic alcoholism.

Many people live long and happy lives having this disease but the disease does cause other afflictions as the years progress because it over stimulates the immune system over a long period of time and these secondary afflictions are hard to stop.

I am sure she knows this already but if she does not then these facts must be kept in mind.

HCV is know to cause autoimmune diseases over time, these are the secondary problems I am aware of there may be others;

Non specific Graves Disease (which is the immune system attacking the thyroid gland)
Autoimmune Arthritis
Autoimmune Liver Disease (which is the worst) and cannot currently be treated.
Along with this the very real increased risk of liver cancers because of the nature of the way the virus weakens the liver cell reproduction system.
In men especially the increased iron in the blood puts us at increased risk of heart attack and other problems.

For all these reasons clearing the virus from your body is a good idea and Harvoni does exactly that, nothing more and nothing less. The side effects are very minor and are well documented on this website and elsewhere and they are turning out to be absolutely minimal for the majority of healthy individuals with no liver damage yet. And the treatment is shorter in duration for those with essentially undamaged livers.

She has time on her side I am sure she will listen and respect what you tell her and know that you are a loving parent deeply concerned about her well being, as are for me are my daughter and spouse and others.

Best wishes from one Dad to another.

Eric

Katie · « **Reply #720 on:** January 22, 2015, 02:24:17 am »

Well said Eric!

Being totally informed is what is needed, and if I was in her shoes, I would probably want to see results of this treatment, but since she has had it from birth, it's been with her already 20 years and I may not push it but I would make sure she understands.

To the father: This is an excellent site which I have gone through. Lots of good information and a good place for her, and you to start.

Katie

I forgot to "paste" the the site. Sorry!

http://hepatitiscnewdrugresearch.com/hey-i-have-a-question-about-cirrhosis.html

mario555 · « **Reply #721 on:** January 22, 2015, 08:50:10 am »

My grain of salt for the father of the young woman suffering from Hep C. Assuming she has no real damage yet from the virus, I would wait before treatment. Over the next 2-3 years new, shorter treatments will become available. Also, we will know a lot more about the long term side effects of Harvoni.
Most of us have no choice and no waiting time left so whatever long term side effects we get, we don't care as much. We have no choice!
For the young woman, her reproductive years are just beginning and she has 60 good years ahead of her. Why risk it if not absolutely necessary?
Having a choice, I'd wait a couple of years after the medication is out to flush out all the unknown risks.
Jensen, Merk, Achilion, Abbott and Gilead are all literally racing to come out with better, faster treatments. Also the prices will come down tenfold because of the increased competition.
My last word on this... If there is no compelling reason to initiate treatment, wait a few years!

mario555 · « **Reply #722 on:** January 22, 2015, 08:52:49 am »

Ho! I forgot... Make sure the daughter has her Hep A and B vaccine!

elizabethfaraone · « **Reply #723 on:** January 22, 2015, 11:19:21 am »

Quote from: dragonslayer on January 14, 2015, 04:40:53 pm

According to what Mario says, sounds to me like the poor are more than taken care of, and its the un-poor the government are scapegoating!

You misunderstand what I meant by "scapegoating." A scapegoat is a person or group made to bear the blame for others

You are clearly blaming the poor. Therefore, you are scapegoating the poor.

elizabethfaraone · « **Reply #724 on:** January 22, 2015, 11:31:26 am »

Quote from: mario555 on January 05, 2015, 05:54:06 pm

Health care in Canada covers visits to doctors and hospitalization. It doesn't cover medication. We have an overly generous welfare system that will pay medication to welfare recipients and prisoners. If you're not on welfare, you must rely on your own money or private insurance. So, if you need a new liver, they'll do the transplant for free.
In my case, I had planned the medicine expense 2 years ago in case I would not be covered. I was lucky to have my insurer cover 100,000 out of a 160,000 bill. Gilead covered the rest. I have nothing but good things to say about Gilead.
No provinces offer any kind of financial aid. If you're employed and have no insurance or if you're insured with the wrong company, you're screwed.
The state of health care is dependent on governments that change every 4 years. I don't think they give a hoot as to what happens to me.
It is so hard to get financed for medication that we are but a handful of us to be treated with Harvoni. If you are poor, or a bandit, you'll get the medication for free. So, if you can't contribute financially to society, governments will keep you healthy! For the ones paying taxes.... Good luck!

I want to correct the misinformation being spread by Mario. I have compassion for Mario, but I also know that he has been misinformed. Here is proof that the working class and poor in Canada are being denied treatment with Harvoni: http://globalnews.ca/video/1779835/vancouver-resident-needs-hepatitis-c-treatment

Lukey · « **Reply #725 on:** January 22, 2015, 11:48:03 am »

To each his own but I wouldn't wait. I've waited over 20 years for something better than Interferon, and Harvoni is now here and I'm on it for 8 weeks, and my SFX have been minimal. Harvoni has a 95%+ efficacy rate for type 1a.

IMHO, the sooner the better, and no time is better than now. She will someday thank you for it. Get it out of the way ASAP. With that success rate, why wait?

Joe

Bob V · « **Reply #726 on:** January 22, 2015, 12:01:51 pm »

Eric, Katie, Mario
Excellent posts. I was thinking of responding but you guys cover it well.

All add my own feelings on treatment. I was in the original Interferon tx back in the 90s x2. Due to the side effects and the feeing I was lied to by the drug co as to effectiveness I refused any of the new treatments until Harvoni. This includes my Dr wanting to put me on S&O in early fall, still didn't like what I was seeing. My new GI doc could not understand that I would/did not try the newer treatments over the years. I looked him straight in the eye and said "doc if you told me I would die in a couple of months if I did not take a drug that had ANY Interferon I would still not take it" I have brother and friends that feel the same way.

I guess I should add I wasn't feeling any effects in the 40+ years since my first diagnosis, other then treatment. I was willing to except all of what goes with this. I knew I might have liver failure, cancer, cirrhosis, etc.

I understand the posts on this is a great drug etc and for us that have been dealing with it and tried other treatments it is. But that doesn't mean everyone needs to get on Harvoni ASAP. The newer drug trials look promising. As for us on Harvoni we don't really know how effective it's going to be, yet and won't know long term side effects for years. I've been telling my friends it's time start looking at treatment but I feel they are looking at how things go with me first.

Just my .02

audreywald · « **Reply #727 on:** January 22, 2015, 12:56:59 pm »

Does anyone suffer from severe leg cramps before or during treatment with Harvoni? Mine are excruciating.

audreywald · « **Reply #728 on:** January 22, 2015, 01:06:56 pm »

Quote from: concerned father on January 21, 2015, 04:56:44 pm

20 years ago my wife and I adopted a gorgeous baby girl. Prior to the adoption, we were told that she had been infected with Hep C by her biological mother at birth. This virus didn't change our minds about adopting her as we both fell in love with her the second we saw her. Although I’m not a very spiritual person, I kept praying for a miracle treatment. Harvoni is here and I think that I received the miracle I was asking for. However, our daughter is reluctant to start the treatment for fear of the side effects. Although they are minor compared to the potential outcome, she is still reluctant to start the treatment. Do you have any advice?

Tell her they are not so bad. Anyone who has been on the peg/ribavirin will tell her that while at times unpleasant, it's a piece of cake compared to the old stuff. Plus, this is her best shot at getting and staying WELL and beating down this dragon once and for all.

Lukey · « **Reply #729 on:** January 22, 2015, 01:09:39 pm »

Quote from: audreywald on January 22, 2015, 12:56:59 pm

Does anyone suffer from severe leg cramps before or during treatment with Harvoni? Mine are excruciating.

I don't know but it doesn't seem as though Harvoni could cause that. Leg cramps are almost always associated with low Magnesium with many people, myself included. I take 400-600 mg of Magnesium citrate and chloride on Harvoni but I keep it 4 hours away from Harvoni. Perhaps you should also.

Joe

Subwayco · « **Reply #730 on:** January 22, 2015, 01:11:10 pm »

Hi Audrey,

I also have cramps that can get extremely painful. I used to take Potassium and Magnesium. I heard somewhere that you shouldn't take Magnesium while on Harvoni so I stopped. Believe me I totally know what you mean.

Take care,
Subwayco

Lukey · « **Reply #731 on:** January 22, 2015, 01:25:05 pm »

If you can show me a link that says where we should not take Magnesium on Harvoni, please do. When I called Gilead about it they did NOT tell me NOT to take Mg.

The bottle says not to take antacids within 4 hours of Harvoni, but the way I interpret it is, that doesn't mean you need to avoid all antacids during Harvoni Tx, it just means you need to keep it 4 hours from your Harvoni daily dose.
One antacid is Milk of Magnesia.

Rumors can be born, and people can avoid things that don't even need to be avoided.
Magnesium is a critical mineral that many people are WOEFULLY deficient in. I'd almost be willing to bet that some of you are experiencing Magnesium deficiency symptoms, but are so afraid of not getting an SVR that you're willing to pay attention to hearsay information at the expense of your own well being.

Amj1951 · « **Reply #732 on:** January 22, 2015, 01:40:45 pm »

I think I would call my doctor and talk to him/her about side effects before taking any supplements to be on the safe side.

Good luck,
Meredith

Picnic · « **Reply #733 on:** January 22, 2015, 02:27:24 pm »

Magnesium info:
MAGNESIUM1,2
• > 90% of magnesium test results typically fall into a clinically
acceptable “normal” range
• Poor correlation of serum magnesium levels with total body
magnesium stores
• Improved clinical outcomes rarely result from magnesium screening
• Symptoms of deficiency do not typically appear until < or = 1.0 mg/dL
• Levels > 9.0 mg/dL may be life-threatening
• Physiological appropriate range 1.0 – 3.9 mg/dL

1Ryan MF. Ann Clin Biochem 1991;28:19-26.
2Rosenbloom ST. J Am Med Inform Assoc. 2005;12(5):546-553

mario555 · « **Reply #734 on:** January 22, 2015, 04:22:23 pm »

To Elizabeth. I find you're overreacting a whole lot about my "opinion" about the poor! I was asked my opinion on the health care in Canada and I gave it. I am not spreading false statements, I gave it once! Spreading would require me to do it multiple times (I think). Also, these posts are called "side effects of Harvoni". I surely do not want to talk about social, economic or political subjects. I am more interested in knowing how you're doing on treatment. I don't think this is the right forum to discuss my views on the state of the welfare in Canada. I suggest we let this subject die here so we don't bother the rest of the group! So glad to hear you're doing well with the treatment. Good luck!

Subwayco · « **Reply #735 on:** January 22, 2015, 04:26:45 pm »

Mario,

Your a very wise man!

Subwayco

Lukey · « **Reply #736 on:** January 22, 2015, 04:31:37 pm »

Quote

Magnesium info:
MAGNESIUM1,2
• > 90% of magnesium test results typically fall into a clinically
acceptable “normal” range
• Poor correlation of serum magnesium levels with total body
magnesium stores
• Improved clinical outcomes rarely result from magnesium screening
• Symptoms of deficiency do not typically appear until < or = 1.0 mg/dL
• Levels > 9.0 mg/dL may be life-threatening
• Physiological appropriate range 1.0 – 3.9 mg/dL

1Ryan MF. Ann Clin Biochem 1991;28:19-26.
2Rosenbloom ST. J Am Med Inform Assoc. 2005;12(5):546-553

That sounds like Magnesium info from an allopathic website, but I've probably FORGOT more about Magnesium than they (or 95% of you) ever knew.
It all depends on who you choose to take your info from. I learned many years ago that allopaths have no clue about how many people are Mg deficient.

The USA RDA of Mg is not enough for most people, and most people don't even take oral Mg, or they take Calcium which negates it. I can show you the REAL authorities on Mg if you're willing to let go of your MD's hand for 5 minutes.

Joe

Lukey · « **Reply #737 on:** January 22, 2015, 04:33:45 pm »

Quote

Magnesium info:
MAGNESIUM1,2
• > 90% of magnesium test results typically fall into a clinically
acceptable “normal” range
• Poor correlation of serum magnesium levels with total body
magnesium stores
• Improved clinical outcomes rarely result from magnesium screening
• Symptoms of deficiency do not typically appear until < or = 1.0 mg/dL
• Levels > 9.0 mg/dL may be life-threatening
• Physiological appropriate range 1.0 – 3.9 mg/dL

Thank you but I don't think this is info I personally would want to take seriously. I've dealt with some of the foremost authorities on Magnesium in the world. I know from 1st hand experience too. Mg deficiency is much more prevalent than allopaths realize or would like you to believe. Our foods have much less Mg than they once did, so if you don't take Mg, how is anyone supposed to get enough Mg? They don't, and cramps are a sign of EXTREME Mg deficiency.

Mike · « **Reply #738 on:** January 22, 2015, 05:30:05 pm »

To the concerned father:

I would tell my daughter that the current treatments are nothing like the old days - there's really a night and day difference.

The treatments, especially Harvoni, are well tolerated. The vast majority taking the Harvoni have very mild, if any side effects. This wasn't the case a mere 1-1/2 years ago when everything was Interferon+ Ribavirin-based.

Keep in mind that there's a perceived social stigma associated with Hep-C (drug user, low-life, unclean, dirty) none of which are true. It could be quite possible, that your daughter is more concerned about the social stigma associated with an infection than the actual treatment. She might be worried that if she's on treatment, her friends will find out and her whole social structure will come crashing down.

In the old days, Hep-C treatment was so bad and the side effects so intense, you couldn't hide the fact that you were on treatment for something- especially since the treatment took 48 weeks complete.

Now, the treatment is short, well tolerated, and you can complete it without anyone knowing the difference.

You might discuss this with your daughter.

You might also talk to your her about taking baby-steps (no pun) and ask if she would be willing to talk to a specialist about treatment. Maybe you could arrange the appointment for her and you and mom could come along for support. You could also help her develop a list of questions to ask.

Best wishes, Mike

concerned father · « **Reply #739 on:** January 22, 2015, 05:50:48 pm »

Hi everyone and thanks for your advice, please keep them coming. Mike, my daughter is very upfront with her friends with respect to her situation, the last thing she wants is to infect someone else. She is being followed by a specialist and we will get results of her latest blood test next month. The last test indicated that her viral load was very low and that her liver had not yet been affected. The doctor told her that if her new blood test is about the same, she will only need a treatment of 8 weeks. I am hopeful that she will take advantage of this opportunity as her treatment will be fully covered by our insurance. Mario, when we adopted our daughter, her doctor at the time made sure that she was immunized for Hep A and B. I hope I will be able to convince her to take the treatment. As previously mentioned, please keep your advice coming as I will be using some of your comments in my discussion with her.

Mike · « **Reply #740 on:** January 22, 2015, 07:03:25 pm »

Hi Concerned Father,

It sounds like your daughter has a supportive family, supportive friends, is educated about Hep-C, knows her current status as well as the current treatment options available. She probably understands that current treatments are short (8 weeks), well tolerated and very effective.

Given this information, I'm not sure there is much more you can say or do other than continue to be supportive.

Best wishes, Mike

Mugwump · « **Reply #741 on:** January 22, 2015, 07:40:19 pm »

Concerned Father
One minor side effect that seems to be the most common is mild head aches. The effect completely disappeared for me when I got in the habit of drinking more fluids with the pill instead of just sipping some water and eating regularly. However the head aches were so minor they were not even worth wasting an aspirin tablet on.

From what I have read here and elsewhere some people that are underweight seem to suffer more from the side effects than those who are either normal in weight or slightly over weight like myself.

However the individuals that keep busy and work and get good physical exercise and diet all seem to report almost no side effects whatsoever.

In conclusion, if your daughter does drink water as she works or exercises and eats a normal diet then the chances are there will be no noticeable side effects from taking Harvoni.

Because I was not in the habit of drinking water because other disabilities have kept me from being as physically active as I should be, Harvoni caused me to go dry mouthed and anxious and the fear of it not working like the last treatment caused me to doubt which fed off the side effect of being underhydrated.

As soon as I started hydrating myself to the needs of my system the problems and side effects completely disappeared. At 7 weeks of treatment I feel better than I have in 30 years, I now actually have normal saliva levels which I have not experience since I was in my 30s (I am now 62) which in turn is good for my dental health. My strength in my back muscles is returning to a good level so I can exercise and work again. So for those who have had serious liver damage this medication is a God send.

A person who has never gone through the advancement of the virus to full blown active HCV with a high viral load and the terrible debilitating effects of long term impaired liver function and secondary immune response afflictions cannot know how painful and difficult life with HCV becomes over time.

Harvoni taken as directed seems to buck the trend because it is targeted at stopping the replication of HCV in the body, therefore because your daughter is still fighting the disease with a young immune system treatment should be a breeze. With a healthy liver she will clear the virus in no time and stands an even better chance of not having the disease return than individuals who have aged and less active immune system that have allowed the disease to progress to cirrhosis.

The whole reason for interferon was to cause the body to create and excess of immune cells to kill the virus. Which was rather the same as swallowing the spider to catch the fly in some regards. Seeing that her system is doing the job correctly she should be able to clear the virus completely just by having the virus replication stopped by Harvoni.

It might be a good idea to look into the reports and stats of people who were treated successfully and cured with interferon an ribiviron to see how many of them relapsed. I suspect that Harvoni's final regarding relapse rates will turn out even better for those who take it that in the short course and do not have serious liver damage.

My best wishes to you both on working through this disease as a father and daughter.

Eric

anniemybaby · « **Reply #742 on:** January 22, 2015, 08:14:13 pm »

Can I take milk thistle while on harvoni

anniemybaby · « **Reply #743 on:** January 22, 2015, 08:17:58 pm »

I've been reading about special diets to promote liver health I've never really been a health food kinda person but if it'll help my liver I'll try anything my mouth started getting very sore and I'll b on harvoni a week now

Katie · « **Reply #744 on:** January 22, 2015, 08:29:14 pm »

I've been taking Milk Thistle for years but stopped during this treatment. I decided to give up all supplements other than my B's, D3 and C and I have been feeling so good I forget them lately. That is just my opinion, based on no guidelines.

Be sure you are drinking lots of water (minimum of 1/2 gallon per day). Others have stated it helped them with mouth issues. This amount of water is over and above juice, coffee or tea and don't drink soda during this treatment. Especially a cola product as it isn't good for a healthy liver. 7-up may not hurt.

You may want to gargle with warm salt water as that promotes healing with the membranes.

Sorry you are having issues Annie. Give it some time and I am sure it will get better for you.

Katie

Lukey · « **Reply #745 on:** January 22, 2015, 08:31:56 pm »

Quote from: anniemybaby@ymail.com on January 22, 2015, 08:14:13 pm

Can I take milk thistle while on harvoni

I've never been told not to but I don't take MT right now. I plan to go back on it after Tx.
I'm not an expert but I'd pass on most herbs during Tx.

Eat whatever you'd call a healthy diet. I'd make sure to get plenty of protein but not too much, plenty of fiber to ensure good digestion and elimination, and healthy fats. I'd avoid junk food, sweets and sugar and try to eat functional foods like proteins, vegetables, fruit and other plant foods.

Joe

Katie · « **Reply #746 on:** January 22, 2015, 08:39:20 pm »

Good advice Lukey. Fat and sugar are hard on the liver and I love them both! I have really had a sweet tooth lately which is something new to me and I have a battle with it at night.

elizabeth · « **Reply #747 on:** January 22, 2015, 09:02:12 pm »

i will be starting treatment soon what will be the best time morning or night to take Harvoni. my work is very strenuous at times and this has me really worried.but i am very very excited about going on my treatment just found out today i am 1A and my viral load is 2 million liver biopsy on Feb 2nd. tried all the old treatment back in 1996 could not handle them and the sure rate at the time was like 20% to cure 80% not to cure so just was not worth it.i am a sctive 52 year old but always so dingy and tired but i just keep puching threw i look so forward to not being tired and having such bad stomach issues. i have also read it raises the blood pressure and i have to take meds for that already . any info would be nice and Thank you

Lukey · « **Reply #748 on:** January 22, 2015, 09:15:27 pm »

Hi Katie,

I don't think you could get me to believe in 100 years that fats are bad for the liver.That's a myth that may have originated on Hep C websites. When I first saw that on a Hep C website many years ago, I dismissed it as mis-information.

I never believed in the "fat is bad for the liver" theory. I eats LOTS of fats, I have for many years.
Would you believe 5 or 6 GALLONS of coconut oil every year?

Coconut oil is for sure not hard on the liver. It has many anti viral properties and is like food for the thyroid. It also helps balance blood lipids.

Healthy fats are GOOD for the liver, not bad.
I use real butter, NEVER margarine. EVOO, avocados, whole free range non GMO eggs, whole fat cultured organic dairy, nuts, seeds, full fat cheese, poultry with the skin. I don't use low fat anything. Anything lowfat is crap in my book, and is a frationated food.

People that eat lowfat diets are flirting with disaster in my book.
Cholesterol is good for you and actually protects you from major diseases.

I probably ate more fats today than you've eaten in the last month, and I doubt I'd change that.

Joe

Lukey · « **Reply #749 on:** January 22, 2015, 09:18:20 pm »

I haven't eaten sugar in decades.
If I felt like I wanted sweets I'd eat dried fruits or even whole fruit like bananas, organic apples, etc. I used to freeze over ripe organic bananas and make an ice cream type thing with them. I'd blend them in a food processor with coconut milk and put cinnamon on it.

Joe

Lukey · « **Reply #750 on:** January 22, 2015, 09:21:24 pm »

Quote from: elizabeth on January 22, 2015, 09:02:12 pm

i will be starting treatment soon what will be the best time morning or night to take Harvoni. my work is very strenuous at times and this has me really worried.but i am very very excited about going on my treatment just found out today i am 1A and my viral load is 2 million liver biopsy on Feb 2nd. tried all the old treatment back in 1996 could not handle them and the sure rate at the time was like 20% to cure 80% not to cure so just was not worth it.i am a sctive 52 year old but always so dingy and tired but i just keep puching threw i look so forward to not being tired and having such bad stomach issues. i have also read it raises the blood pressure and i have to take meds for that already . any info would be nice and Thank you

Take the Harvoni any time of the day, just take it at the same time every day.
I take mine noon to 1 PM, so you get an even level of the med in your blood 24/7.
Let us know how it goes for you.

Joe

HHburme · « **Reply #751 on:** January 22, 2015, 09:22:06 pm »

anniemybaby · « **Reply #752 on:** January 22, 2015, 09:27:14 pm »

Katie thanks for all the advice it really helps me sleep st night knowing there's someone just like me out there I took you advice today n pushed for drinking lots if water ugh I'm not a real big water drinker unless its summer u didn't know sodas were bad for liver I don't really drink a lot a Pepsi once in awhile ice tea is my weakness I'm trying to live a healthier life which is better said than done as for my mouth issues I had to call Dr its really hurting me n it burns when I eat or drink anything

Katie · « **Reply #753 on:** January 22, 2015, 09:52:12 pm »

Elizabeth:
Hi Elizabeth and welcome to this forum. It is filled with information and you'll see that all of us are really doing well on this treatment. Some better than others and it seems to depend on what shape your liver in in, but not always.

I personally take my pill a couple hours before bed and it has worked well for me but others have good results with taking it in the mornings or during the day.

You sound right where I was before treatment and maybe better but then I am older than you.

I had horrible fatigue (where your joints feel mushy)
horrible insomnia and wasn't dreaming so feel I wasn't getting into REM
When I did sleep I woke up exhausted
horrible brain fog which was bad for my job. It was as if my brain and my mouth got separated sometimes. I kept my writing skills but my verbal skills decreased by at least half and I was always very articulate. Was difficult finding the right words sometimes. It forced me to retire almost 2 years ago and it was the right thing for me to do.

I developed a hiatal hernia (esophagus) and had bad acid reflux ( probably due to a long bad sinus infection where I would cough until I sometimes threw up.

All of these symptoms of Hep C, which I suffered with for years started to diminish with my first pill and I am almost going to starting my 3rd bottle on my 8th week now and am feeling better than I can really remember. I feel 10 years younger and now truly realize how this nasty other worldly nasty virus damaged me. The toxins building in your body because the liver isn't functioning properly is like slowly getting poisoned and it sneaks up on you to the point you think it is normal. Even the hernia seems better, for whatever reasons and I have had other small improvements probably from good rest and staying well hydrated but even those are related from this treatment.

I will emphasize that.Dink LOTS of water to flush out the toxins!

I am excited for you because you are going start feeling so much better. I found the side effects they mentioned for taking Harvoni, were actually what I was already experiencing before treatment. This isn't the case for everyone.

I refused the old treatment for the same reasons you did not follow through and am glad I waited. I am even happier and grateful that this breakthrough came in time for it to help all of us.

Good luck and know you are not alone!

Lukey:

I should have been more specific and stated BAD fats should be avoided and I use coconut oil, olive oil and real butter as well. I did mention that your advice was good, however and of course we definitely need healthy fat for many metabolic functions.

Katie

Lukey · « **Reply #754 on:** January 22, 2015, 10:02:21 pm »

Glad to hear we agree on that. If we had't, I wouldn't have pushed the issue. I'm not here to try to change anyone, I just speak of what I do and at times I probably say more than I should. I realize it's not a holistic website.

I think I'd rather go to jail than eat a meal without fats.

I may eat more fats than I should at times, like a pint of heavy whipping cream in 2 days a week or so ago. It sure was yummy, and fats don't make me gain weight.

Joe

Katie · « **Reply #755 on:** January 22, 2015, 10:08:39 pm »

Lukey...you are funny and you know jail would only feed you bad fats! Ha. You are also lucky you don't gain weight. I LOVE ice cream and have to limit it so have a bowl for me.

dragonslayer · « **Reply #756 on:** January 22, 2015, 10:12:58 pm »

Lukey, how are your cholesterol levels enjoying all those saturated fats?

Lukey · « **Reply #757 on:** January 22, 2015, 10:24:06 pm »

About 250 the last I knew, and I think that's good. I'd never take a statin drug.

Eating cholesterol does not raise blood cholesterol levels. Coconut oil balances blood lipids.
I hope to keep my cholesterol level in the 250 range.
I don't even want to hear what my MD has to say about my cholesterol as long as it's in the 200-300 range.

Joe

Lukey · « **Reply #758 on:** January 22, 2015, 10:25:38 pm »

I think fats are great. I don't gorge on them but I eat fats with every meal.

Taking IP6 can get rid of fatty liver but I'm not taking IP6 on Tx.

Joe

Lukey · « **Reply #759 on:** January 22, 2015, 10:28:22 pm »

I haven't had ice cream in decades b/c it has sugar in it. I made my own with frozen bananas and coconut milk, which was not only delicious, it was healthy.

I've quit eating fruit and have lowered my carb intake a lot. I was eating too much fruit, and it can be like sugar in ways and actually cause cravings. I have less cravings on low carb diet.

Joe

Mugwump · « **Reply #760 on:** January 22, 2015, 10:52:34 pm »

Quote from: elizabeth on January 22, 2015, 09:02:12 pm

i will be starting treatment soon what will be the best time morning or night to take Harvoni. my work is very strenuous at times and this has me really worried.but i am very very excited about going on my treatment just found out today i am 1A and my viral load is 2 million liver biopsy on Feb 2nd. tried all the old treatment back in 1996 could not handle them and the sure rate at the time was like 20% to cure 80% not to cure so just was not worth it.i am a sctive 52 year old but always so dingy and tired but i just keep puching threw i look so forward to not being tired and having such bad stomach issues. i have also read it raises the blood pressure and i have to take meds for that already . any info would be nice and Thank you

Make sure that you take the pill at the most convenient time for your routine, personally I log it so as to make certain there is no double of missed doses. It does not really matter when just make sure you keep your dietary need up. It is a good idea to drink a fairly good sized glass of water when you take the pill as this will help with ingestion and ease any problems with digestion.

What you will experience is a significant increase in bilirubin excreted by your liver as the dead virus particles and liver cells that have been killed by HCV start to be removed from your system naturally. For me this caused some limited biliousness and bloat gas which translated into a major case of wind and belching.

But remember in some cultures it is considered good manners and a compliment to the cook to belch or even break wind! Unfortunately this is not the case in our backward uptight society hold on you will begin to experience what is like to have a normal digestion system. AND I LOVE IT I can actually lay claim to being a genuine OLD FART and not just brag!

Get good rest and let the medication do its job, stay hydrated and active and you will be surprised how easy this treatment really is! The "foggy brain" headaches and biliousness will ease as your treatment progresses.

My mind is sharper, my guitar playing is almost on a performance level, my muscles, arthritis and all the other problems effected by having impaired liver functions are working better than they have in 30 years. It is amazing and until you experience the changes it will be hard to believe but IT IS REAL for those who have only minor damage from HCV but are effected in ways they do not realize because they are used to feeling sick all the time!

GO FOR AND BEAT THE BEAST WE ARE ALL CHEERING FOR YOU AND WISHING YOU GOOD HEALTH!!!!!
ERIC

Lynn K · « **Reply #761 on:** January 23, 2015, 02:42:00 am »

To all those considering various supplements while taking treatment I would proceed with caution and discuss your ideas with your doctor or pharmacist.

Personally I don't want to do anything to risk the success of my treatment and have stopped taking everything, no vitamins no prilosec (specifically on the list to avoid). They can't test for interactions with everything known to human kind to try taking and this is a very short time we are talking about here.

Please ask you doctor before adding a mineral or herbal supplement while on treatment.

Audry

I have cirrhosis and have had like you said excruciating leg and foot sometimes body cramps for the last several years. One thing I think for me could be contributing is the diuretic I am taking. I have noticed I seem to be having almost no cramps now 9 weeks on treatment. I have also heard being dehydrated can cause leg cramps so make sure you are drinking the recommended daily fluid intake eight 8-ounce glasses of fluid a day, because all fluids count toward the daily total.

http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/water/art-20044256

Amj1951 · « **Reply #762 on:** January 23, 2015, 06:54:58 am »

Hi all, I fully agree with Lynn. Only you with your doctor should decide if you need anything extra while on the Harvoni or at any other time.

Legs ramps can also be caused by low potassium as well as low magnesium and lack of water. I know everyone has different opinions about supplements, but I find if you eat the proper foods, you should not need them. I know that is a debate in itself, but eating nuts, fruits, veggies will give you what you need each day.

One thing I’ve learned over the years living with one kidney is what is good for my kidney may not be good for my liver and vise versa. High protein diets.. especially a lot of meat.. specifically red meat is not good for my kidney. A high fat diet is not good if you have belly fat which is a contributor to a fatty liver… though they say a low carb diet is good for the liver but at the same time that is not good for my kidney.

I think having labs done at least once a year, if not twice is a great thing then you know for certain what your body is lacking OR has too much of.

I’ve asked about Milk Thistle but been told it’s not good on the kidney.. at least on my kidney. I do know it has benefits though. Don’t laugh, but my basset hound had a problem with her liver that went on for a few months and her numbers were so high. The vet put her on two milk thistle a day and after about 6 months……. She was back to normal. For me that proves Milk thistle has benefits, but as Lynn said only your doctor can help with this decision.

I think while on Harvoni, we should not take anything that a doctor does not tell us to take because they don’t know yet everything that Harvoni interacts with and I personally would not want to take anything that might affect how it works because I want it to have a 100% chance in my body!

Anyway, that’s my two cents : )
Meredith

elizabeth · « **Reply #763 on:** January 23, 2015, 10:28:44 am »

Katie thank you so much for responding to my post. As i read these comments i become very excited about the treatment. I am just tired if being sick and tired lol. I know we all relate on that subject. I will continue to check back with this forum because i find it so Helpful

now to wait and see what biopsy says and if insurance will pay!

mario555 · « **Reply #764 on:** January 23, 2015, 11:17:27 am »

Hi Elizabeth,
If you can, try to get a "Fibroscan" rather than a biopsy. It's painless and takes 5 minutes...

Lukey · « **Reply #765 on:** January 23, 2015, 11:47:00 am »

Elizabeth :

Do you prefer only females to reply to your posts? I see that you thanked Katie but did not even acknowledge Eric and I for replying to your questions.

Joe

Lukey · « **Reply #766 on:** January 23, 2015, 11:59:30 am »

I have a belly that's a tad bigger than it should be but I'd bet $5 that's not because of me eating a high fat diet, it's because I eat more food than I need to feed my body. I also hoped lowering carbs in my diet would reduce my belly size but it did not.

I'm not going to deprive myself of healthy dietary fats for weeks on the slim hope of it reducing my belly size. I learned through trial & error many years ago that I can eat fats "until the cows come home" and not put on any weight from it. Many people can eat fats w/o gaining weight and I'd even go as far as to say that most people are this way. Coconut oil feeds the thyroid and helps people lose weight.

I don't often eat chicken skin, but I eat some once in a while in soups.
I feed most chicken skin to my cats who will gladly eat it.

Joe

Lynn K · « **Reply #767 on:** January 23, 2015, 12:19:07 pm »

I eat fast food Big Macs and egg mc muffins and TV dinners but yet my cholesterol is 120 go figure

Lukey · « **Reply #768 on:** January 23, 2015, 12:20:13 pm »

Amj1951 :

Now that my Harvoni SFX have all but gone away, I could cut back or even stop magnesium now but I'm going to wait until my 1st blood work results are back and go from there. If it looks like I'm going to clear HCV in 8 weeks, I'll keep taking the Mg, and if not, I might quit the Mg and cross my fingers.
I feel like I'm responding very well to Harvoni, but as I said earlier, we won't know for sure until we see the blood work.

My head feels a whole lot clearer now!!! I'll drink (filtered water) to that. Where'd that brain fog go that I had the other day?
Oh, I see. My liver may now be de-congested and functioning a lot better.

If I can clear HCV like many do on Harvoni, I'm going to be some kind of grateful to Gilead and modern pharma. So far, Harvoni seems like a wonderful med. I had been against all meds for decades, but Harvoni seems to do just what it was made to do and do it well and do it quickly (when you consider a virus that some people have had for 30+ years) and not make the patient sick in the process. I guess it's no surprise they've made meds like this. It's what they're worked on for years and is now a reality.

Joe

Lukey · « **Reply #769 on:** January 23, 2015, 12:28:27 pm »

Leg cramps can sometimes be relieved by taking K [potassium] but I'm kind of sure that Mg (magnesium) controls K, so if you take Mg vs K you're more apt to get control of the imbalance vs just relieving the cramps if you take K.

Joe

elizabeth · « **Reply #770 on:** January 23, 2015, 06:07:00 pm »

Elizabeth :

Do you prefer only females to reply to your posts? I see that you thanked Katie but did not thank or even acknowledge Eric and I for replying to your questions.

Joe
I am so sorry i am just learning this page just signed in yesterday trying to figure out how to follow a post i make , thought my email would notify me on all responce I am very sorry Joe and Eric i am still looking for them from you to now .

Lukey · « **Reply #771 on:** January 23, 2015, 06:13:40 pm »

No problem. I had no idea about that.
I'm such an internet veteran that I know most forums like my back yard.

elizabeth · « **Reply #772 on:** January 23, 2015, 06:21:36 pm »

thank you for the advice i am ready to slay this blood dragon and send it back to hell for sure. i am so happy i have found you all and please be patient while i learn to navigate this site my hopes are very high i will ask about the fibroscan indeed . i was also trying to figure how to do a profile picture etc and i need to ask what the intials SFX and so on mean. I have already realized from reading the post that most of my issues are from this HCV and that makes me feel better knowing it may all be over soon

Amj1951 · « **Reply #773 on:** January 23, 2015, 06:34:43 pm »

Welcome to the forum Elizabeth. Each time you come on it will get easier and you don't ever need to worry about thanking people each time they speak to you. I have found its very easy to fit in here and there is some great information to be found. It definitely makes the treatment a lot easer : )

Good luck with your treatment!
Meredith

Katie · « **Reply #774 on:** January 23, 2015, 06:41:18 pm »

Hey Elizabeth..the acronyms confused me at first too. Someone was mentioning the EOT tests and I was Googling all over trying to find them. EOT was End Of Treatment. HA! SF = Side Effects, TX = treatment VL = Viral Load, S/O = Sovaldi and Olysio (treatment came out 2013).

Another one you see often is SVR or SRV and not sure what it stands for except that it means you have cleared virus. There is sometimes 8 or 12 signifying weeks of treatment.

NOTE to participants on forum: Please correct me if I am wrong as I am certainly not the expert and it took me awhile to figure them out and please add to it as I know this isn't everything.

Katie

No thanks needed as Meredith stated. We all benefit from everything posted and it is a support group not meant to belittle in any way.

Lukey · « **Reply #775 on:** January 23, 2015, 06:58:15 pm »

SVR = sustained virological response (lasting benefit of Tx, not sure if it means cured though).

SRV = Stevie Ray Vaughn

SFX = side effects

Katie · « **Reply #776 on:** January 23, 2015, 07:00:23 pm »

Thank you Lukey. That has been driving me crazy! Stevie Ray Hahahaha I think someone transposed, huh!

Lynn K · « **Reply #777 on:** January 23, 2015, 07:00:39 pm »

Here is a list of abbreviations and acronyms some are a bit dated this list was compiled in the Interferon days

Hepatitis C Acronyms/Abbreviations
Hepatitis C Acronyms and some Definitions:

HCV - Hep C : Hepatitis C virus
Boceprevir: Victrelis
Teleprevir: Incevik
Inf: Interferon

GS-7977 Experimental drug by Gilead Sciences Inc. Phase 3 trials underway in conjunction with Rbv. Now is called Sofosbuvir or Sovaldi

Riba/Rbv: Ribavirin
Bx: Biopsy : Invasive liver sample removed and analized to determine liver condition
Fibroscan: Non invasive Ultrasound Technique for determining liver condition
Fibrosure/Fibrotest: Combination of blood test scores used for determining liver condition
Dx: Diagnosis
GT: Genotype
IR: Insulin Resistant
IL28B: A gene polymorphism which helps in Tx prediction - CC , CT , TT
Sx: Side effects
Tx : Treatment

SOT: Start of Treatment
EOT: End of Treatment
RVR: Rapid viral response - Undetected virus at 4 wks. Tx
cEVR: Complete Early Viral Response: PCR Und at Week 12 (P/R Tx)
EVR: Early Virological Response: >2 Log Drop at Wk. 12
eRVR - Extended Rapid Viral Response - Und virus @ Wk.4 - Wk. 12
Und : Undetected virus
SVR: Sustained Viral Response: Und after 6 months EOT
P/R Tx: Pegelated Interferon / Ribaviron Treatment (old term - SOC: standard of care)
VL: Viral Load - amount of virons per IU (International Unit)
IU: International Unit (1 IU = 2.5 VL Copies apx )
HVL: High Viral Load (≥800,000 IU)
LVL: Low viral load (<800,000 IU)

PCR: Polymerase Chain Reaction
RT-PCR quantitative: using Reverse Transcription-Polymerase Chain Reaction- to count how many virus are in blood 
RT-PCR qualitative: a "positive" or "negative" using Reverse
Transcription-Polymerase Chain Reaction to see if there are at least 50 IU/mlviruses detected in bloodRNA: RiboNucleic Acid
Rx: Prescription
TMA: Transcription Mediated Amplification
All oral Tx: Interferon-free treatment (Phase 2 Clinical Trials)

More Acronyms:

AFP: Alpha-FetoProtein
ALP: Alkaline Phosphatase (Alk Phos)
ALT/SGPT: Alanine Aminotransferase - liver function blood test
AST/SGOT: Aspartate Aminotransferase - liver function blood test
CBC: Complete Blood Count
DAA: Direct Acting Anti-viral
ELISA: Enzyme-Linked ImmunoSorbent Assay
EPO: Erythropoietin Epoetin alfa (Epogen/Procrit), Darbepoetin alfa (Aranesp)
ESA:: Erythropoiesis Stimulating Agent
ESLD: End-Stage Liver Disease
GGT:: Gamma Glutamyl Transpeptidase
HCC: HepatoCellular Carcinoma (Liver Cancer)
HDL: High Density Lipoproteins (Good Cholesterol)
HGB: Hemoglobin
IFN: Interferon (Alpha 2a/2b)
IU: International Unit 1 IU (2.5 VL Copies apx)
LDL: Low Density Lipoproteins (Bad Cholesterol)
LFT: Liver Function Test
LLN: Lower Limit of Normal
NAFLD: Non Alcoholic Fatty Liver Disease (Steatosis)
NASH: Non Alcoholic SteatoHepatitis
Neup: Neupogen
PEG: PolyEthylene Glycol
PegIFN: Pegylated Interferon Alpha (2a/2b)
PI : Protease Inhibitor
RBC: Red Blood Cell Count
RIBA: Recombinant ImmunoBlot Assay
TMA: Transcription Mediated Amplification
TSH: Thyroid stimulating hormone or Thyrotropin
ULN: Upper Limit of Normal
VLDL: Very Low Density Lipoproteins
WBC: White Blood Cell Count

Katie · « **Reply #778 on:** January 23, 2015, 07:07:50 pm »

Perfect Lynn. I just knew you'd come through and I am going to copy this into a document for reference. Acronyms are great but to the newbies they can also be intimidating.

Thanks again and how are you doing on your changed treatment? Hope all is well.

Katie

anniemybaby · « **Reply #779 on:** January 23, 2015, 07:14:33 pm »

Today is day five of harvoni I feel like a new person I can't explain it I just feel better Dr prescribed me n oral rinse for my mouth issues but overall I feel great

anniemybaby · « **Reply #780 on:** January 23, 2015, 07:18:40 pm »

Lynn thanks for all the abbreviations I was lost didn't understand most if them

Katie · « **Reply #781 on:** January 23, 2015, 07:43:31 pm »

Great news Annie! Did the doctor say what caused the mouth sensitivity or burning? Just curious.

Lynn is a wealth of information and that list is great. Very helpful!

Enjoy the new you. I hope your improved health continues and just think....you are only on day 5. How encouraging is that? We are on a really powerful and wonderful treatment and finally we can feel we will win this battle.

Katie

sunrise · « **Reply #782 on:** January 23, 2015, 07:47:04 pm »

Katie you're so sweet.
SVR=Sustained Virilogical Response. Means that you have responded to DAAs= direct acting antivirals. Thus not showing detection of virus in blood...

Katie · « **Reply #783 on:** January 23, 2015, 08:01:37 pm »

How are you doing Sunrise? Sending positive thoughts for your current bloodwork.

Sweet? Ha That isn't the normal adjective used for me but I'll take it.

I am so jazzed as I got a knee brace today for my bad leg and so far it is working great. It is a high tech one, very light weight and strong and the joint moves so smoothly. Think I may have to invest in some long denim skirts. It works under my jeans but a little snug. I had a bulky neoprene brace; made me sweat and then my ankle would swell and it never stayed in place so I was always tugging on it. Needless to say, it went in a closet. So I have a bionic knee, am walking almost normal and I love it so far. with my brace and Harvoni I am really looking forward to a great spring and summer full of gardening and maybe even fishing! Life is good!

Katie

anniemybaby · « **Reply #784 on:** January 23, 2015, 08:23:15 pm »

Thanks Katie and no he didn't say wat was causing the mouth pain but I didn't go to my GI Dr went to my MD I will b calling my GI Dr Monday just so I keep everyone on the same track

BattleTheBeast · « **Reply #785 on:** January 23, 2015, 08:30:41 pm »

Rinsing your mouth with food grade organic coconut oil for 10-20 minutes doesn't amazing things for you. Gets rid of bacteria hiding in your mouth, whitens your teeth, freshens your breath, helps heal the gums (my gums are more sensitive on treatment). They call it oil pulling but it's just swishing

Kind of weird at first until the coconut oil melts, you can start with a teaspoon. It really does help, they have apparently been doing it forever in India

Glad you are feeling so well!

Mel

sunrise · « **Reply #786 on:** January 23, 2015, 08:32:49 pm »

Thanks for asking Katie
Good that you have a better support brace for your knee. It will help so much for mobility.
As for me, its been a tough day. Left work early. Just anxious, and worried about results. I keep having this pain on my right side and doctor keeps telling me its not my liver. It sure feels like my liver area. Also as I was leaving his office he says hows " no one " he is treating with S/ O has relapsed. That makes me worry as what is he gonna do if I relapse? Tell me I'm the only one? Almost feel like its setting me up for a hard time if I do relapse. I pray I don't. Sorry for whining. Just afraid. Thanks for being so supportive. ... Sunrise

BattleTheBeast · « **Reply #787 on:** January 23, 2015, 08:37:01 pm »

Sending you a cyber hug Sunrise! I am going to be a big mess while I am waiting for results as well but we have to remember that no matter what we will beat this beast and we have the best chance ever to do so. You are going to win and we are going to cheer for you and laugh and cry tears of happiness with you when it happens.

xoxoxox

Mel

sunrise · « **Reply #788 on:** January 23, 2015, 08:48:08 pm »

Thanks Mel!
Sending big hugs your way! Where have you been? Its been alittle quiet without you around! I know you've been in and out of forums, but we haven't chatted. How are you feeling? Skin finally calm down? Enjoy your evening. I'm already in bed.... Blessings Sunrise

Katie · « **Reply #789 on:** January 23, 2015, 09:12:51 pm »

Oh Sunrise. I'm sending you a big (((((HUG))))) right now. I can't imagine going through what you and so many others have and coming to the end of your treatment and the waiting just has to be a nightmare. All of you have been such an inspiration for me and you are in my thoughts every day.

One thing I am confident about is that this research is not over and they will improve and have other treatments available. This breakthrough in 2013 is what spurred on to Harvoni and I have no doubt other improved treatments are right around the corner.

Keep the faith and know we share all of your concern and fears and hopes in one form or another. Those little anxieties and worries creep in and we just have to concentrate on the facts and how this virus has met it's maker and is DYING or is DEAD.

The pain you are experiencing could very well be your gallbladder, as it is all connected. Or maybe it is your liver readjusting to working again and still healing and repairing itself. It has been under attack for a long time and the repair will take time as well.

Sleep well Sunrise and hope you feel better tomorrow

Katie

sunrise · « **Reply #790 on:** January 23, 2015, 09:28:43 pm »

What a great spirit you have!
You are right. I must remember this isn't the end. Just the beginning. I hope everyone and their tx. are all doing well. Just alittle battle weary. Have a goodnight all .... Blessings .. Sunrise

Mugwump · « **Reply #791 on:** January 24, 2015, 01:18:47 am »

Quote from: sunrise on January 23, 2015, 08:32:49 pm

Thanks for asking Katie
Good that you have a better support brace for your knee. It will help so much for mobility.
As for me, its been a tough day. Left work early. Just anxious, and worried about results. I keep having this pain on my right side and doctor keeps telling me its not my liver. It sure feels like my liver area. Also as I was leaving his office he says hows " no one " he is treating with S/ O has relapsed. That makes me worry as what is he gonna do if I relapse? Tell me I'm the only one? Almost feel like its setting me up for a hard time if I do relapse. I pray I don't. Sorry for whining. Just afraid. Thanks for being so supportive. ... Sunrise

Sunrise, for years many live with slight pain from the bile duct. I know I have as any pressure from the upper large intestine or a bloated digestive system with gas has caused pain. It is very hard to quantify as it comes and goes. My infectious disease specialist said that it is common for those who have had mild cirrhosis to experience bile duct and gall bladder pain. So I live with this problem.
Taking Harvoni has definitely highlighted the pain but it is absolutely nothing in comparison to the pain I experienced that finally led me to go for interferon-rib treatments 11 years ago. At that time I had driven 16 hours straight to come home for 4 weeks before retuning to the north of Canada to work as essentially a cook who took care of a small crew with emergency first aid training and experience in reading logging plans so I was essential a second foreman and took care of many details other than safety and the camp operations when the boss was away. So the job was a very good one that I could not afford to drop.

The pain at that time became so bad that I had to give up work and the blood work indicated that HCV was doing the dirty work and starting to cause cirrhosis. So I had to make a choice between being treated or possibly going down for the count if a secondary viral infection caused my immune system to go for six.

What I am saying is because the Harvoni is causing the liver to discharge the cells that have been killed by HCV more rapidly than we are accustomed to then those of us with even slight liver damage will experience a greater level of bilirubin production. This excess of waste from the liver which is cycled through the digestive system and kidneys can and does exacerbate a sensitized bile duct and gall blader system (if you have one).

I almost went into emerge a week and a half ago because of biliousness and gall bladder pain, but the great news is that it is finally starting to ease off.

Remember taking an antacid is contraindicated on Harvoni so please consult your specialists if the pain gets any worse and like me report this as a side effect to the toll free contact line for Harvoni, the number is printed on the big sheet that comes with the meds.

KIck the crap out of this disease Sunshine and everyone here. The chance at a future without HCV demands that we get mean with the little gremlins and squash them into hell were they belong. Don't ignore pain but put it in perspective and find out why, chances are it is caused by the death of cells that had gremlins and their millions of zombie children eating away at your liver!

Hugs and regards
Eric

Katie · « **Reply #792 on:** January 24, 2015, 01:29:38 am »

Eric, that last paragraph was VERY visual.HAhahaha

"the death of cells that had gremlins and their millions of zombie children eating away at your live"

Good info for sunrise and all of us. I've had an intermittent dull ache once in awhile that was unusual and your comment makes sense. Thanks

Katie

sunrise · « **Reply #793 on:** January 24, 2015, 01:57:11 am »

Hi Eric
That is good advice. I wish I had done the harvoni tx. I had already staetes my sovaldi olysio tx. 2weeks before harvoni hit the market. The wierd thing is I had this pain start in May, which is what led me to find out I had HCV. I was diagnosed in June 2014. My doctor ran alot of tests including an ultra sound, and much bloodwork. Who knows what it is , but makes sense it could be from my gall bladder. Although my bilnever got higher than .4 during tx. Thank you for your support and compassion. It sure goes a long way...Blessings ..Sunrise

kate0b1 · « **Reply #794 on:** January 24, 2015, 08:22:44 am »

@sunrise, you know I'm the queen of lab waiting anxiety right? so i know what I'm talking about lol, more people than not are cured with those meds so I'm feeling you got this ! and I'm pretty sure Mel has just refilled her purple ink so we don't want her to have wasted getting it filled.
@Mel, talk to me about the coconut rinse, this sounds very intrigueing

kate

BattleTheBeast · « **Reply #795 on:** January 24, 2015, 10:22:23 am »

Hi Kate,

Google "Oil Pulling" and you can read all about it and it's benefits. Here's the Western take on it http://www.webmd.com/oral-health/features/oil-pulling

Basically there is nothing bad about trying it and you can purchase an Organic Food grade Coconut oil without breaking the bank. If you don't like using it for swishing (oil pulling) you can use it for cooking, as a skin or hair moisturizer and a few other things. It really is a great "oil" to have around the house.

I think it's so funny because I had all these crazy thoughts in my head about what Oil Pulling was and had freaked myself out about it. I normally only swish with about 1-1/2 teaspoons because that's what fits comfortably in mouth. It's a little weird at first until the oil melts but once it does it's just like swishing with anything.

Do not spit it out in the sink or toilet because it hardens back into an solid and will clog your pipes up.

Let me know if you try it, love hearing how it works for others!

Sunrise,

I had started S/O the same day Harvoni was approved, I was only switched because of allergic reactions to the Olysio. I know how you feel about it, when Harvoni was approved I kept wondering if I should have just waited and taken that instead but I was ok with the S/O because I knew if for some reason I didn't clear with the S/O I could try the Harvoni next. It turned out that 9 weeks in I was switched over.

I don't know how this is all going to play out for me, being on both may be good or bad, who knows? What I do know is that my really sick liver has had a true break from this nasty virus for a while and that it feels good not to feel so bad. I am just trying to take it day by day and cherish these good days I get to have now. If I don't beat it this time, I get to try another new medication and will beat it next time.

I think all of us on treatment already are all going to be SVR or on the way to SVR in 2015. I think 2014 was the year of the miracle Hep C cures and that that Beast is on it's way to Infinity and Beyond in 2015!

Mel

anniemybaby · « **Reply #796 on:** January 24, 2015, 03:09:08 pm »

Thanks Mel I'll hafta try that coconut oil I heard a lot of good things about it in nursing if I wasn't for my mouth I feel outstanding I hope I didn't just jinx myself hahaha but honestly I've been on harvoni 6 days n I already feel better than I have in yrs

BattleTheBeast · « **Reply #797 on:** January 24, 2015, 03:39:01 pm »

I am so glad you are feeling better! It really took me a while to feel better because I was so sick when I started the TX.

Now that I am many weeks into it I am really feeling human again, what an amazing chance we are all being given....

Mel

anniemybaby · « **Reply #798 on:** January 24, 2015, 05:51:25 pm »

I agree Mel we all got a second chance I'm not real sure of all my numbers everything happened so quickly I was diagnosed with hep c may 2014 type 1a had a liver biopsy in July showed fibrosis don't know the exact numbers n I'm not sure wat my viral load is I'm not sure Dr ever told me everyone here is so educated I feel so lost that I don't know anything bout this disease inside my body why don't I know everything bout my stages n my viral load why didn't my Dr educate me

Katie · « **Reply #799 on:** January 24, 2015, 06:07:06 pm »

Hi Annie, Remember many of us were diagnosed years, if not decades ago so we've had time to research and then we also had tests every year with the opportunity to ask the doctor questions.

If I were you, I would either call, or stop by your doctor's office and ask for copies of all of your tests for the last couple years, or when you first became their patient. They are your records and you are entitled to them.

Anytime you have a test, just ask for a copy and begin your medical file. This comes in handy down the road if you need dates and treatments for your history. Example: I had a Workman's Comp Claim and they wanted my history for the past 10 years. I tried to just estimate the time of different procedures (I've had lots of joint issues) and even the years blended all together and my medical file really helped out. With a case like that you need to be accurate.

You will learn to be proactive with your health and that's important. You are doing good so don't beat yourself up. We all started where you are!

Katie

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