Author Topic: New to Harvoni Tx (Read 11585 times)

OBEY___AMA · « **on:** February 15, 2016, 11:55:20 am »

I'm new to these forums and let me start by saying that I was diagnosed with hcv about a year ago. Around that time I started getting symptoms of the disease opposed to popular belief that symptoms don't pop up and that it is the "silent killer". I guess I was an unlucky one. I was diagnosed with genotype 4 which is very uncommon here in the US. I started tx with Harvoni about a month ago. No real sides aside from the occasional headache. I'm having some concerns as I read some of the other forums here about post tx recovery. Although my viral load was very low: 11,000 down to 8,000 prior to tx. My concern is the way I'm going to feel after treatment and like others is the tx working as I still have inflammation pain in my abdomen and right side below rib cage. Also I noticed brain fog in the beginning of tx as well which subsided now and my thought process seems to have cleared a little. Can anyone please comment that they've had a successful tx with Harvoni genotype 4 and that their pains in the liver are gone? Or is this something that will be present my whole life. I'm only 31.

Lynn K · « **Reply #1 on:** February 17, 2016, 03:22:29 am »

Do you know if you have any liver damage? Any idea how long you have had hep c? Those could play a part in your recovery from your hep c symptoms.

I had genotype 1a for 37 years and was diagnosed with liver cirrhosis in Jan 2008. I treated for the 5th time with Harvoni for 24 weeks and added ribavirin after I started so was taking Ribavirin for 15 of those 24 weeks. Never had liver pain myself or really symptoms of hep c except being tired a lot. The only major symptoms I have had are from liver cirrhosis.

I would think that genotype 4 vs any other genotype would have little to do with your question really. Treatment with Harvoni for genotype 4 was only recently approved so there probably is no one who has yet completed Harvoni with genotype 4 you are blazing the trail

Good luck on treatment and may you slay your dragon
Lynn

OBEY___AMA · « **Reply #2 on:** February 17, 2016, 10:53:49 am »

Thank you kindly for your reply. No known liver damage as I underwent a ultrasound of the liver. Doctor said biopsy wouldn't be necessary as ultrasound did not show any signs of damage. I was diagnosed around the time I started getting inflammation on my side about a year ago. I imagine I came in contact with the virus about 15-20 months ago. I'm feeling blessed to have the tx. Scared that I exhibited symptoms so early on and even my gastro doc didn't believe that I had symptoms at first felt like a muscle related injury at the time I was very big into lifting weights since then I've lost about 20 pounds. Starting to feel like myself again a month into treatment my hope is that the Harvoni rids the virus and symptoms obviously.

OBEY___AMA · « **Reply #3 on:** February 17, 2016, 10:54:30 am »

ALT & AST were 2x normal range

beto · « **Reply #4 on:** February 17, 2016, 11:50:27 am »

Hey OBEY,

No not always the silent killer and I believe it shows symptoms more often than not. I have know people to have a hell of a time with the disease, even in fairly early stages. Also, in our busy lives, we ignore a lot of potential physical symptoms. However, yes many seem to be mostly a-symptomatic. I had symptoms and flare ups for years as well as times when I felt pretty good. Like Lynn I had the disease for 40 years and I think I am cured, but gonna wait for the post 24 week mark to be sure.

As for the fears of issues EOT. I would say most folk seem to be just fine, however, there has never been a formal study...tx is too new. Bear in mind that it is more of a motivating factor to post if you are not doing well because one becomes concerned and wants to find out if anyone else is having similar issues. If all is hunky-dory I believe you are less likely to post. There is no way to know if these meds cause issues down the line. However, consider that you virtually annihilate a virus that you have been hosting for a long time, overnight. Many are suggesting that the immune system takes a while to balance itself (homeostasis).

You are very lucky to get the medication...sorry you have had to suffer...but, you are going to be OK. Your numbers are so low to begin with...well...piece of cake. Welcome to the forum. Good group here, not judgmental, very informed and extremely supportive. peace

OBEY___AMA · « **Reply #5 on:** February 29, 2016, 12:51:35 pm »

Thanks again for your replies. Means a lot! I guess we are all struggling to achieve the same thing. SVR12. I had some bad intestinal issues this weekend along with flare ups. My week 4 results came back AST & ALT in normal range and not detected for hcv which is great news just wish I felt as good as the paper looks.

BillT · « **Reply #6 on:** March 01, 2016, 12:38:12 pm »

Hi Obey and welcome to the forum,
The meds are obviously working so keep at it,and try not to worry about what happens down the line.Work with the here and now.I know that's easier said than done but try.Give it some time and see what happens.The fog lifted so everything else may get easier for you also.This isn't a overnight cure and it's blasting our immune systems into high gear.As I said try not to worry about the long run and just get through the tx.Good luck and keep us posted.

Stapremegod · « **Reply #7 on:** March 05, 2016, 12:24:36 pm »

Hi there I'm new to this forum I have no idea how to start a topic,I hope I'm doing this right,but can someone.help me out send me instructions on how to navigate this here forum,I was just approved for harvoni,I start Monday,are there any side affects?

jakas · « **Reply #8 on:** March 05, 2016, 12:45:07 pm »

Hi
Left on top is a TAB FORUM ( thats for all the topics here) click that
Below that is User your name and below that is unread posts that you havent read
So just click on these and get around

beto · « **Reply #9 on:** March 05, 2016, 01:45:26 pm »

As Jakas said, but

In the main forums page...Click on one of the general topic that suits your topic. When that new page comes up you will see a tab for "new topic". then you are off to the races...

OBEY___AMA · « **Reply #10 on:** March 05, 2016, 01:48:34 pm »

Thank you Biilt for your reply. This tx( Harvoni) is so crazy its driving me nuts. It really has become a day to day type of treatment. Couple of weeks ago it was the brain fog and inflammation in the liver. This week has been the week from hell as i am experiencing a whole host of new side effects/symptoms of the disease. Going on week 7. I am super scared as I mentioned earlier I have only been diagnosed for less than a year and the reason I found out is bc I got a comprehensive metabolic examination to check on my hormones bc of energy issues which had shown higher than normal AST and ALT. I had not before had many symptoms. It started out feeling like a pulled back muscle and eventually turned into constant ache or swelling in liver area. That was the extent of side effects of hep c that was felt.Now however this week I had terrible inflamed liver and pains and what felt like portal hypertension right under the liver which seemed to come at the same time as lymphatic issues which wasthe scariest of all was pressure in my neck and swelling around lymph nodes, itching, and shooting aches down my leg which felt like the veins were inflamed in my left leg. literally it felt like the virus was trying to escape i had feelings of sharp pains which manifested into white spots on my legs. super weird but i associated all of these symptoms to the bodies response of the DAA's ( harmony ).Feel like the tx is becoming more aggressive in its fight to eradicate the virus. Does anyone know for sure if the virus is eradicated and removed via urine, and bowel movements? or is it possible that the virus could come out of the skin. as i said I have white spots that manifested on my legs and it literally felt like the pains/ aches in my liver area were traveling through my body and out of my legs and that is the point in which i lifted my pant leg at work and saw white spots that looked as though they followed a linear path that a vein would travel down my leg. I couldn't see if a vein was present in that area but the white spots are one after the other kind of oblong circles in a straight'ish line. there are 3 lines of them. and this really freaked me out bc the aches stopped for the time being and those spots came out of no where as i definitely would have noticed in the shower as my legs are tan compared to these spots and at the time in which i noticed them they were painful. This happened yesterday, today they're not sore and have not felt the same type of effects since. Any thoughts of the route of eradication and removal through the body and any thoughts on why I am having more symptoms now of what seem to be HCV related and not harvoni related?

Forest dweller · « **Reply #11 on:** March 06, 2016, 10:16:50 am »

Hello people!
I am on day 6 Harvoni.
So far some weakness in left arm and leg, but that could be air pressure related...I get weird body symptoms with weather.
Feeling some energy boosts during the day. I've been reading this forum for months prior to tx'. I'm not sure I should be reading the relapse posts, because they're bringing me down!!!very scared to relapse.
Thanks for listening..

1b
Fibroscan 2-3
Contacted maybe 1990?
Load >6,000,000?

Philadelphia · « **Reply #12 on:** March 06, 2016, 03:34:12 pm »

Hi forestdweller. What is posted is rarely statistically accurate. Relapse posts used to scare me too, even though I knew I had a significantly greater chance of cure than relapse.

What got me through was knowing that there are so many more choices now, and treatment isn't limited to one type of drug. And a pig headed belief that I would be okay, based on no facts whatsoever.

Forest dweller · « **Reply #13 on:** March 06, 2016, 05:02:27 pm »

Thanks Philadelphia!!!

Nice of you to reply..

Lynn K · « **Reply #14 on:** March 06, 2016, 06:37:13 pm »

Hi Forest dweller and welcome to the forum

There is a thread where people are posting their 12 and 24 weeks SVR results for both Harvoni and Viekira Pak. While there sadly have been a few relapses the majority of us are being freed from a life time of infection with hep c.

We are all nervous and afraid we will be one of the unfortunate few who don't make SVR with these new treatments but statistically the odds depending on your situation (prior treatment, extent of liver damage) are 90% to 99% and very much in your favor.

Try not to stress too much with the long wait your chances of being cured are very good.

Now go slay your dragon!
Lynn

OBEY___AMA · « **Reply #15 on:** May 07, 2016, 03:37:35 pm »

Hey guys! Got my EOT results the virus was undetectable which is great. However, I still have flare ups and my abdomen seems to be hurting more than ever. Very very stressed as this has been one of hardest things to deal with in my life. Im praying that the stomach and liver swelling is due to annihilated the dragon. However I can't help thinking what if I am one of the unlucky 1-2%. The pains and swelling went away towards the end of tx. They are back and seem to get better when i drink water and the onset seems to come about an hour or two after eating. I suppose it is more of a digestive issue now than before tx it would generally not get better with water intake and would be unbearable. Im hoping someone could give me insight into these issue as my GI is not the best. Also, would like to hear from tx successes as to what they felt like after tx to see if this is normal?

Lynn K · « **Reply #16 on:** May 07, 2016, 06:31:55 pm »

Hi Oma

We all have that worry while waiting for SVR 12.

There were a few folks here who were positive they had relapsed because of various symptoms but ended up being SVR. I really think you are having some kind of gastrointestinal issue. Really, just stressing out can mess with your digestion.

I felt no different on treatment vs of treatment except for getting my HGB back up after I stopped taking Ribavirin.

I bet you anything you are fine as far as hep c goes and will make SVR12 and beyond

Good luck

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Author Topic: New to Harvoni Tx (Read 11585 times)