Harvoni Side effects

[BG42]

Hopefully...I went from someone that went to the gym 5 -6 days a week to having difficulty moving. Just a quick question...when does the initial effects were off? Or do they?

I've been struggling with this too. I'm trying to get ready for a half marathon, and I've been trying to find the energy to keep training. Here's what happened to me today.

I got up this morning (Early!) with the intention of running before work. I'm on my 10th day of Harvoni. Running is my preferred way to exercise.

I had the intention of running 3 miles this morning. When I woke up, I had the classic Harvoni Headache and was in a brain fog. (Waking up in the brain fog is the worst!) My body did not to get out of bed, let alone want to run, which is sort of normal for getting up that early.

It seemed like "The Dragon" was trying to hold me back. Against my instinct I forced myself out there, and the first mile was tough. I wanted to turn back, and I was already exhausted. But then it got better! My headache faded and I was able to finish my 3 miles. By mile 3, I was feeling normal. I was still a little slower in my pace, but I had new found energy and my headache and brain fog were gone.

I'm not saying it's for everyone, but if you're used to working out or exercising, I am starting to see that the exercise helps somehow. It got my blood flowing and perhaps allowed me to sweat some toxins out. I'm not a doctor and can't really back this up with science. That's just my experience today. It's now 12:35 pm here, and I feel normal. Drinking tons of water!

If you're one who exercises, try and move a little. Take it slow if you need to, but I think that'll help. Don't give the dragon that much power. You're beating the dragon with the wonder drug and also keeping your body healthy. Celebrate it! Just my .02

BG

[DLedin]

Hi folks,

This is my first post here though I've spent a couple of weeks lurking. I thought I'd weigh in on this thread as I have had a much different experience regarding side effects while being treated on Harvoni.

I learned I had hep C in 2007 during a routine blood test. I have no idea how long I've been infected. I'm in that percentage among the population of hep C patients who do not seem to experience any notable difficulties as a result of having hep C. In other words, if it weren't for the initial blood test, and subsequent test confirming that I have hep C, I wouldn't know I have it. I know that I'm very fortunate in this regard and I count my blessings. After learning that I was infected, the only real lifestyle changes I had to make was to avoid alcohol and to have blood drawn every 6 months in order to monitor my liver functions. For me, getting used to the blood draws was harder than avoiding alcohol as I'm known to pass out when getting stuck by a needle. (I'm much better with the blood draws these days.)

As to my hep C particulars:
A liver biopsy in 2008 resulted in a pathology report that confirmed I had chronic hepatitis, minimally active (grade 1) with partial fibrosis (stage 1).
I am genotype 1a.
The latest specs I can find regarding my HCV RNA quantification are from 2009. At that time it was measured at 6,500,000.
I have previously never attempted treatment.

So, for me, getting treatment was important, but not urgent. I simply wanted to get out from underneath the cloud of having hep C once and for all. At first I was concerned that I would not be approved for Harvoni treatment because I was in such relatively good shape. However my insurance company (Blue Shield of California, PPO) did approve the treatment with a very reasonable co-pay. Gilead also came through with their co-pay assistance program which brought my out of pocket expense down to next to nothing. I'm very grateful to both Blue Shield and Gilead for their help.

I completed my 12-week treatment of Harvoni on Feb 23rd. At the 6-week mark we took a viral load test and the result came back "not detected". So now I'm waiting for 12 weeks to pass since completing treatment to run another viral load. I'm keeping fingers crossed.

As to side effects while on treatment, they were practically nil. I did not experience any "brain fog", headaches, or nausea. In fact, I felt fine the entire time except toward the end, when I believe I did experience some fatigue. That cleared up within a few days of ending treatment.

About six weeks prior to starting treatment I began a workout regimen in order to lose some weight and get in better all around shape. I worked out rather rigorously, 6 days a week, and I continued this throughout my treatment. I did drink a ton of water, not relating it to my treatment but more to the fact that I was just thirsty a lot with all of the working out. I also typically drink water throughout my day anyway. That, along with the relatively decent state of my liver, may have contributed to my having virtually no side effects, I don't know.

So that's my story. I look forward to reading posts from folks once they get 12 weeks or more beyond their treatment to hear how they're doing. While I've been very fortunate, so far, in my hep C experience, I know others have suffered greatly and am hoping (praying) that everyone gets clear of this virus.

Best of luck to you all.
-Doug

[Katie]

Hi everyone and welcome new members!  Thanks for you information Doug!  I am right behind you at ending treatment at 12 weeks.  I also do not know how or when I became infected but was diagnosed over 9 years ago seeing a doctor for a sinus infection which I couldn't shake.  All of my blood work had been perfect up to that point but I was fatigued and caught every bug that came around.  Not only was my Vit D level bottomed out but my ALT/AST was above normal alerting my doctor.  I was also experiencing brain fog and insomnia which continued and escalated over the following 9 years, which eventually led to my retirement in 2013.  I rejected all previous treatment due to low cure rate and bad side effects so was excited about Harvoni.

My treatment was terrific 85% of the time with all Hep C side effect diminishing and actually disappearing (returning weeks 9 &10 and then gone again).  Being able to sleep was remarkable as I haven't had good rest for over a decade!

Stats:  GT 1a, VL fluctuated from 2.5 million to 16 million where it bounced around and the lowest being when I began treatment.  AST/ALT normal 90% of the time.

My 4 week test came back VL  59.  My end of treatment test came back less than 12 but stated detected.

I see my doctor tomorrow, but emailed Gilead and they called me today.  They explained the same to me as what they told Paul.  To summarize it to the best of my ability, the gentleman said the trial blood work sensitivity was, less than 25 IU/mL.  There isn't a test that goes down to Zero.  The sensitivity has improved since then where my test level is now less than 12 and it depends on who is doing your test.  The recommendation is to see if replication has occurred at 12 weeks post treatment.  At that time if it comes back below the test sensitivity, they consider the treatment a success, and having another test at 24 weeks is a good idea.

What I am getting from that, is that my treatment is not a failure or considered a relapse at this time and the lab is stating "detected" since they can not count down to zero.  Remember, the virus can only be seen with an electron microscope since it is so tiny.  I will ask my doctor about that today, as what would it take for Undetected on my results.

Since so many here are stating they have received Undetected on their blood work, it is confusing me.  Lynn has tried to explain this to me over the last few months but I still don't quite get it.  Sorry Lynn!

So that being said...the waiting game is on, but I feel confident and hopeful for all of us to rid ourselves of this alien parasitic monster and am going on with my life,  until May 20th thinking I am virus free unless I start feeling crappy and having the Hep C symptoms return.  I'll be keeping in touch so please keep posting and giving support to each other as it is a true blessing to have all of you here.

Katie

[mario555]

People getting UND after 4-6 weeks mean that they have Less than 25 copies so the test cannot find any viruses. It doesn't mean you have 0, only that there are so few copies that the test can't detect them.
Once the treatment is finished, the few little buggers left, if any, will start multiplying rapidly and 12 weeks later you'll be close to where you were before the treatment! Actually, most of the time after 4 weeks you'll already know if you are relapsing because you'll have more than 25 and they will get 'detected'.
Finally, being detected at the end of the treatment doesn't mean it didn't work but it usually doesn't look good because if you could not get rid of them during 8 weeks of treatment, chances are that the remaining ones will not die before the last sliver of medication continue to circulate in your blood stream.
This is why I feel we should try to get as many weeks of treatment as possible. A 24 weeks treatment will cure close to 100% of patients... I understand they can't have everyone on 24 weeks because the vast majority would be overmedicated but for the ones who relapse, it is devastating.
I would prefer to be tested 2 weeks before the end of treatment and if detected, have 4-8 weeks of additional treatment. Even if not covered by the insurance company, an out of pocket expense of 5-10-15 thousands might be the best investment available at that point in time (Gilead would probably help you a lot in a case like this).
I'm 1a F4  8 millions copies and was fortunate to get 24 weeks (I am 17 week into it). After 12 weeks I would have bet it wouldn't be enough (personal feelings and knowledge of my body). My 'cure' will probably happen in the extra weeks above 12. I was UND after 4 weeks by the way but I don't trust that because I was UND twice before on Inf-riba...

[DLedin]

I see my doctor tomorrow, but emailed Gilead and they called me today.  They explained the same to me as what they told Paul.  To summarize it to the best of my ability, the gentleman said the trial blood work sensitivity was, less than 25 IU/mL.  There isn't a test that goes down to Zero.  The sensitivity has improved since then where my test level is now less than 12 and it depends on who is doing your test.  The recommendation is to see if replication has occurred at 12 weeks post treatment.  At that time if it comes back below the test sensitivity, they consider the treatment a success, and having another test at 24 weeks is a good idea.

@Katie, I'm far from being an expert regarding the tests for viral load. When I got my mid-treatment test results, which were "not detected", I took a look at the paperwork regarding the test that was requested. I noted that my doctor had requested an HVC RNA Quantitation (PCR) test. I wanted to know more specifically what that test was about so I googled it and came up with this from a website called hcvadvocate.com:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/viralload.pdf

Don't know that it will answer your questions but it did explain some of the differences in various types of viral load tests.

-Doug

[Islandgirl]

Thanks for the link, Doug,  Katie and I are on the same 12 wk EOT track though my doc's test dates are different (last pill was 2/25).  I'm stressing a bit to during our "long wait" and can't help feeling somewhat anxious - just don't feel as good as I think I should by now.  Trying to be positive though, like my warrior role model, Katie

@Katie, I'm sending you lots of beautiful swirling colorful positive,  healing energy for tomorrow's doc visit - and always.  A big hug too.  I'm hoping your doc has some good news for  you tomorrow and a better explanation of what's going on and what can be expected. 

Thanks everyone, for your posts of sharing experiences and thoughts, and for your support.  Hugs,  ...Islandgirl

[Katie]

People getting UND after 4-6 weeks mean that they have Less than 25 copies so the test cannot find any viruses. It doesn't mean you have 0, only that there are so few copies that the test can't detect them.

That's how I see it too Mario, only my test didn't SAY UD; it said detected, so I am hoping it is just the verbage of the lab I deal with, and mine was actually < 12 IU/mL  (copies are different)  It sure would be nice if the labs were all consistent as I think that is where my confusion comes in.  I am very exact and need specifics.

Thanks Doug, and your site explains the copies VS IU/mL.  I pretty much understood the different types of tests from all the reading and research I have done.

Hang in there Island Girl!  We are in this together and we will make it.  Instead of cleaning and organizing today, like I should, I am shopping on line for my new bedroom.  So far new sheets, new bedspread, new skirt, and now new blinds.  Too bad we aren't closer (and Nicole too) as we could have a slumber party!  HA!  Hopefully my carpenter will show up Sunday so I can get on with the drudgery of cleaning and moving stuff.  Oh...and throwing & donating STUFF.  I have WAY too much!

Have a good evening everyone.

Katie

[MEG]

@Katie, good luck tomorrow and I hope your doctor is able to sort this out for you.

Shopping online to dress up your room....what fun!

Hi @Islandgirl. I was thinking about you today. It's great to "see" you...

Hugs everyone. Keep fighting the good fight.

[Alfredo]

I read in a previous post that Harvoni may create resistance. I was told by my Hepatologist and Gilead  that Harvoni does not create resistance and that if you fail treatment you may treat again. I was also told that if you treated before with  Sovaldi and failed you may treat with Harvoni since Sovaldi does not create resistance either. Like to know if anyone has any website address or literature  that mentions this. 

[Katie]

Hi Alfredo,  I talked to Gilead today and we discussed resistance.  They really haven't much information on that since Harvoni is so new.  Of course they also told me that they haven't any guidelines on treatment for those who have relapsed after the 12 week post treatment.  It could be not enough data is available at this time and it also could be more information is given to the doctors than the patients they speak with.

I emailed them questions regarding a bunch of unanswered issues that I have and some that have come up on this forum and they sent their web site info which I have already gone over.  So, I replied and said I would think after paying over $90,000 they would have some kind of back up plan for those who weren't successful.  That must have gotten their attention as I received a phone call this morning.  I hadn't even had my coffee so I wish they had called just a bit later!  HA!

Most of my questions are still unanswered because we are really the first group that are on the treatment, however he did say some of my questions were very good.  Maybe they will look into some of those better.

I did talk to him about diet and he said they have no restrictions on food.  He didn't say anything about fat, or fruit or sugar, but it just makes sense to eat as healthy as possible.  He just stated with the tests, it could be taken with or without food and without restrictions.

So do I know more than I did.  Not really!  HA!

katie

[Keanu2015]

Good morning everyone! Day 21!

         I actually noticed my liver during one roll over as I slept last night but generally speaking, it seems to have disappeared from the forefront of my mind lately. The pain is almost completely gone. I wake up tired some mornings but nothing like I did before Harvoni. The backs of my eyes are burning way less. I seem to be less tired for the most part also. I definitely need 8 hours sleep and if I don't get it I drag later in the day but thats much better than needing 12 just to exist before the meds!

I am thankful for the last couple of posts. Katie and Alfredo I'm glad you are doing some digging and sharing the info with us. The "viral load copies" seems a bit confusing to me but thank you Doug, Mario and everyone else who is sharing on that as well. Hope everyone is doing well today!

[TTSP]

@Doug Thanks for sharing this information! This is what I have been waiting for something from someone who has completed their course. If Gilead tried to prescribe everyone to 24 weeks automatically the insurance companies would never go for it. They want results first.

I have been reluctant to talk testing here, but I've must say I like your idea of getting extensive testing shortly before my 12 week course. not afterwards. Just my opinion and my doctor, who I have complete confidence in, he has spent a great deal of time answering all of my questions.
This is mine and my doctor's opinion,it seems pointless to do excessive testing early. I am basing this on thought on my wife's and other people I know who have gone through this with other treatments. My doctor also says this. Harvoni is not Interferon, so I'm not concerned about the problems associated with past treatments.

@meg You are correct there is no information from Gilead about food. Pharmaceutical companies would not be concerned about anything that did not interfere with the chemical properties of Harvoni. That being said, anything that gets ingested whether it be through mouth, nose, or skin will pass through the liver. The whole idea behind a lot of the info about food is to do what you can to slow down the process of cirrhosis. Like you said it makes sense to eat healthy. 

I have a question for anyone: Any suggestions on which antacid to use? I know that they should not be taken 4 hours before or 4 hours after Harvoni. I'm just wondering if any are safer or more effective. (This kind of question is where my doctor gets impatient with me) LOL In the past I used Tagamet. I would appreciate your thoughts on this. 

Best wishes to everyone! 

[TTSP]

Oops, not Tagamet, Zantac. 

[TTSP]

Nevermind on the Zantac, I forgot it lasts for 12 hours! That doesn't seem safe.

[MEG]

@TTSP

About antacids. I know that with the Prilosec, taking 20mg(not 40mg) when you're taking the Harvoni is Ok. ....It seems counterintuitive. But because it's long acting and taken once a day, that it's anti-acid activity is at its lowest at the 24 hour point after it was last taken. That's why they have you take it together.

About the Zantac? I'd ask your doctor since you trust him. Not sure how he would want to manage that.

Tums/Rolaids, minimum of 4 hours before or after Harvoni.

Again, these are instructions I've received(I don't take these meds) when they did the med review upon starting Harvoni.

Which is to say, that you can take them, if absolutely necessary, but they need to be spaced out and talk to your doctor about all this...

Have you tried things like ginger tea? It helps me with the occasional upset stomach.

[Bituman]

It seemed like "The Dragon" was trying to hold me back. Against my instinct I forced myself out there, and the first mile was tough. I wanted to turn back, and I was already exhausted. But then it got better! My headache faded and I was able to finish my 3 miles. By mile 3, I was feeling normal. I was still a little slower in my pace, but I had new found energy and my headache and brain fog were gone.

If you're one who exercises, try and move a little. Take it slow if you need to, but I think that'll help. Don't give the dragon that much power. You're beating the dragon with the wonder drug and also keeping your body healthy. Celebrate it! Just my .02

BG

Good advice BG.  I ran quite a few half maras too.  Although I didn't know it at the time, I did all that with an active HCV infection.  Always liked that distance because it wasn't as life consuming as a full mara, and quicker recovery.  It was my favorite distance when I was running.  Eventually I had to give up running due to an arthritic knee, so now I get my cardio fix from cycling.  Harvoni has not affected my training or ability whatsoever.  But because I'm almost 60, I do go through spells like you described when I feel a little tired and it's difficult to drag my butt out the door.   Usually I can associate those with too little sleep, eating too much junk, stress at work, etc. What I have learned is that if I can just get outside and moving, I'll feel better soon, just like your 3-miler experience.  Those spells seem short lived and I can usually push thru them. Check out Isaiah 40:31...

Good luck and good health with your training. 

Bob

[TTSP]

@Meg Thank you My doctor was pretty vague on the antacids. I'll try again.
 I think too much, it's easy to do when you have to juggle multiple illnesses. 

Best wishes to you!

[pumpkin50]

Hello everyone!  i am new to the forum even though I have been reading it for the past 2 weeks however I wanted to wait until I was approved and picked up my Harvoni before signing up and joining.. About me.. I am Genotype 1a with a VL of 298,000 and a stage 0-1 and I have had this virus for 36 year and I have never been treated before and I will be on the 8 week treatment plan
.  My baseline is constant fatigue and brain fog since I can remember however there are some good days..   and only can work 10-12 days a month due to the fatigue.  My boyfriend of 7 years also has Hep C which he believes he has had for at least 35 years. We are going to be treated together as we see the same doctor and  we have our meds sitting on the dresser and can't start until next week as he had a preplanned surgery for kidney stones so they want us to start after the procedure!!  I can't express how it feels to have a potential cure in my hands and have to wait until next week to start..,Ugh!!!! I will check in next week when we start and also I would like to say thank you for all the great tips I had gotten from reading your posts the last couple weeks!!

[MEG]

@TTSP

You're welcome..It sure is easy to overthink when you have multiple issues. If you feel comfortable, the nurse in me would like to know  more---so that I don't steer you in the wrong direction if you ask for advice again...

Hope you're day is going well.......

[visoianu]

I finished 12 weeks of Harvoni in December. I posted before all the sides efects I have had, but I did not realize at that time that the tooth infection I got 8 weeks into Harvoni was also a side effect. I read that 5% of subjects in the reserach group had this type of infection. 

[mario555]

Funny! I did get a toothache which resulted in a canal treatment which didn't bring relief! I started suspecting it was a side effect in the week following. Watch out people...

[hayliegirl]

Hello my name is Haylie.  I began taking Harvoni March 7th 2015.  I was really excited when I was told that Harvoni has hardly any side effects..   When I first took the pill, I didn't experience any side effects, I was more then willing to go for round 2.  Round 2 was mild side effects that I can live with for sure.  By day 3+ I'm thinking..... THIS IS TOUGH. I hear that the 3 month marker I will be experiencing no side effects.  I just want to hear from people who are actually taking the drug, not from people that have heard about the drug....!!!

[Karen1124]

Hi Haylie girl,
I have been on Harvoni since Feb 5th. I have not taken any other treatment before this, the only side effects I have had is cold hands and feet. What do you mean by tough? make sure that you drink lots of water and eat well. Keep the sugar low in sodium low and you should be good to go! I think I'm lucky that I didn't have a lot of side effects becaused some people do! But hang in there because in four weeks I was undetected it's unbelievable! Hope you feel better! Life is Good!!!!......Karen

[hayliegirl]

Hi Karen, and thank you for speaking to me.  I have a terrible pain in my right side, my insides feel like they are boiling.  I feel heat rushing through my body, yet my skin is cold.  I have the worst headache in the mornings. So bad its hard to open my eyes.  I am very thirsty and thanks to you, I will be drinking lots of water:)

[SIXFOOTFOUR]

hayliegirl

Im no expert only on my first week of tx, but have found as others have said drink plenty of water, tylenol or Ibprofen for headaches, Im better if I eat a little when I take it.

For me I take it in the early Pm and then sleep so by am IM almost 12hr post dose and I've experienced almost no bad effects. We are all different but stick to it. I also noticed that with each day the side effects are less for me.

Good Luck

[Katie]

Haylie..Are you running a fever?  If so and if it persists, I would call your doctor.  Hopefully you will get through this and everything will settle down and yes, water definitely helps.  Try to drink half a gallon a day.  I actually kept track of how much I was drinking until I adjusted as I was poor at that in the past.

Good luck to you!

Katie

[Karen1124]

Hi haylie girl,
Take you temp and I would call the doctor. Your doctor will tell you what you should take for the headaches! My pharmacy is CVS and the have a phone number for assistance with side effects. Let us know what they say and how you are doing! Guzzle that water! God bless you haylie girl...... Karen

[dragonslayer]

Hi Alfredo,  I talked to Gilead today and we discussed resistance.  They really haven't much information on that since Harvoni is so new.  Of course they also told me that they haven't any guidelines on treatment for those who have relapsed after the 12 week post treatment.  It could be not enough data is available at this time and it also could be more information is given to the doctors than the patients they speak with.

I emailed them questions regarding a bunch of unanswered issues that I have and some that have come up on this forum and they sent their web site info which I have already gone over.  So, I replied and said I would think after paying over $90,000 they would have some kind of back up plan for those who weren't successful.  That must have gotten their attention as I received a phone call this morning.  I hadn't even had my coffee so I wish they had called just a bit later!  HA!

Most of my questions are still unanswered because we are really the first group that are on the treatment, however he did say some of my questions were very good.  Maybe they will look into some of those better.

I did talk to him about diet and he said they have no restrictions on food.  He didn't say anything about fat, or fruit or sugar, but it just makes sense to eat as healthy as possible.  He just stated with the tests, it could be taken with or without food and without restrictions.

So do I know more than I did.  Not really!  HA!

katie

Regarding retreating, Ive posted elsewhere that Gilead will be doing clinical trials to determine what is the best treatment path for those who are partial responders or relapsers on Harvoni.  Id have a hard time believing that, until results from these trials are eventually published, Insurers would simply fork over another small fortune to cover retreatments without the requisite data showing the efficacy.   At this point, nobody knows what will be the best retreatment option for Harvoni failures.. Perhaps  Viekira Pak will be a more effective plan... Or Harvoni for 4 more weeks than initially given.. Maybe 8 more wks than initially given... Maybe riba needs to be added.. Or not..

Far too many questions remain to simply assume that retreatment with the same drug which failed the first time should be reapplied, and for what duration,  until there's some good actual data to back it up.

[Karen1124]

Haylie girl I am drinking half my body weight in water so if you weight 150 that 75 oz of water per day...Karen

[SunIsOut]

Day 18 today.

I have been having the cold feet and did not relate it as a side effect but with two pair of socks and my slippers I guess it is a side effect.  I still have the Tinnitus and was/am hoping this will subside sometime during or after treatment. I sleep a lot and my vision and clear headedness is not where I would like it but in the grand scheme of things I can cope.

Interesting posts this week with the test types, changing your toothbrush/ razors and other forum experiences. Let's keep it up!

My pharmacy called to see about side effects and I like that they are proactive this way.  It is a certain wait and see on the duration as my doctors wanted 24 weeks and insurance said twelve.  It is alarming that the viral load can build right back up in no time like that.  I will see if they will use that as part of their justification for 24 weeks after some testing occurs.

Have a good weekend folks.

[Katie]

I posted this on the thread FINSIHED 12 WEEKS OF HARVONI, but thought some of you might be interested in this as well. Just me running some stuff through my head the way I do.  Hope it isn't confusing, if so just ignore. 
++++++++++++++++++++++++++
One thing I have noticed is the difference in sensitivity with different labs and the tests they use.  The trials were <25 IU/mL for LOQ (Level of Quantified) but I don't now what the LOD (Level of Detection) was.  I have just submitted that question to them.  It was posted on here for a test of <15 LOQ and the LOD was 11-14 so that makes me interested as a 0-10 would be an Undetected result.  My lab did not specify LOD and is something I need to ask about (LOQ = <12).  I tried to research it last night and couldn't find it however did see where they referenced the LOD but not actual number.

In my mind, it seems the trials LOD would be higher due to the sensitivity and using that method for the trials may have given me an undetected result.  It really doesn't matter as it is what it is I just like putting things in proper perspective so it makes sense to me.

Anywho...That's enough of that and I'll let it go.  It's just I like those type of details so I can process how they come up with these things.  I read a lot last night and how they figured out the range levels.  They actually took blood samples from those infected with Hep C and diluted their blood to see at what levels it would show up.  I found that interesting.  I know....I'm weird that way.

Congratulations to all who are moving forward and I wish you a healthy, productive loving life!  I will be right behind you!

Katie

[Wilson]

Good evening all, Wilson here! Took my last pill last night. I feel a sense of relief. Cleared a month ago.  My doctors said "see you in 120 days". I feel good about the whole thing. I thought I was to do twelve weeks, but my doc said no need.  The trails showed that healthy never treated, no fibrosis, cure of 97% with eight weeks. 96% with 12 weeks. My hemochromitosis (iron overload) is virtually cured as well. I am processing iron normally. That's awesome. No blood draws every 4 or 5 weeks.  Well, I thank all for the great reading and the comforting thoughts. I expect that I'll check back once in a while. I plan on not caring any more!  In  3 monthes I can be an organ donor again.  (Wow)!!!  When we are clear and we only have the HepC antibody. I'm good to go.

[mario555]

Wilson. Congrats for finishing your treatment. It must be a wonderful feeling to start forgetting every bad moment related to this awful disease. Happy to hear about the iron overload situation going away.

[coloradogirl]

Papa, before they started me on Harvoni I had to get a marijuana and alcohol test and be negative in order to start. And they will test periodically. I'm in Los Angeles on Kaiser. I'm sure different insurers have different standards, but as my doctor told me, they want to make sure they arent handing over $1200 pills to people that are intoxicated and might not adhere to proper regimen.

I have KP, and I did not have to get tested before starting treatment. It could have been your doc that decised to test you first.

My doc left it up to me, but said that he had read a report on marijuana and the negative affects of its use while on treatment. The only study I can find is from the University of Washington. I will probably post a new topic after further research because of conflicting reports. I am not taking any chances while on treatment, but since other patients feel the need to use, it is an important topic.

[hepcondor]

5 Weeks!!!  18 mil to 0  I can't believe it! Thank you Harvoni!!

On the other side I have major ringing in my ears, body aches all over, weakness, disoriented...I know it's worth it and I just need to hang in there but I sure would like a couple of days off of this stuff. But I'm not going to!

[SunIsOut]

I learn something everyday here!

Wilson, I did not have Hemochromatosis as it is a genetic thing but I did have elevated iron up to 1800 and had to have Phlebotomy to bring it down and still have to have it monitored.  I had no idea that it was related to this!  Before treatments I was up around 500 and my blood platelets were 49 as my spleen is enlarged and sucking up all the platelets.  I have my 4 week labs soon and will ask that they test all of this.

Hepcondor, Tinnitus has been intense for me prior to treatment and because this is a blood disease I am hoping that the vessels in my ears are being affected.  Real big on the hope and very little on data.

Okay day 19 is underway!

[nadewitt]

 My tinnitus has gotten worse while I am on Harvoni but since it started during my first treatment with interferon and ribaviron and has never gone away in the 4 year since, I am not holding out any hope for it to stop. Sometimes it feels like it is going to drive me crazy especially now that I have 2 levels at the same time instead of one. If anyone knows how to stop this, I would appreciate any advice.

[hepcondor]

Very sorry Nadewitt!!!  I didn't have it before treatment.
Mine gets so loud sometimes I have a hard time hearing other people.

And it is driving me crazy!!

[Katie]

Congratulations Wilson and Hepcondor!!!.  Hope you continue to be free and enjoy a wonderful, healthy life!  Take good care of yourself and continue to heal.

I have had tinnitus for the past 10 years and it started with a year long sinus infection and led to my HepC diagnosis.  The first few days of taking Harvoni, the static noise increased 10 fold.  It reminded me of an old TV when it went off network.  Horrible!  Then it stopped and I had perfect silence for 2 days.  It was amazing and beautiful to be free of that constant buzzing but unfortunately it came back to the pre-treatment level and has remained.    So is it related to Hep C?  May be however in my case I think I am stuck with it.  Then again, I am not totally clear of the virus so that is another thing to look for as more of us are off the medication.  It is really annoying and I truly miss the silence, especially when I am in the woods, or out on a boat.  I love the Sound of Silence.

Katie

[coloradogirl]

One thing I have noticed is the difference in sensitivity with different labs and the tests they use.  The trials were <25 IU/mL for LOQ (Level of Quantified) but I don't now what the LOD (Level of Detection) was.  I have just submitted that question to them.  It was posted on here for a test of <15 LOQ and the LOD was 11-14 so that makes me interested as a 0-10 would be an Undetected result.  My lab did not specify LOD and is something I need to ask about (LOQ = <12).  I tried to research it last night and couldn't find it however did see where they referenced the LOD but not actual number.

In my mind, it seems the trials LOD would be higher due to the sensitivity and using that method for the trials may have given me an undetected result.  It really doesn't matter as it is what it is I just like putting things in proper perspective so it makes sense to me.

My doctor ordered the Nucleic Acid Direct Probe. It is the HCV-RNA by RT-PCR, reflex to TMA. He said make sure the lab doesn't use the less sensitive bDNA assay. 

[mario555]

Tinnitus. I have had a low level that is on and off and is at a level of 1-2 once or twice a year. Since I have started Harvoni, it has gone to a level of 5-9 and as mentioned above, sounds like a TV when you are between chanel. After 8 weeks of treatment, it abated and sometimes stopped. Unfortunately, it started again after 12 weeks and all my side effects came back also. I am now into week 18 and the going is rather demanding.
I think it is related to my new case of high blood pressure which is also a side effect for me.!
So,for the ones on 12 weeks treatment, don't despair, it does come down. When the "buzz" gets too loud you should try to relax rapidly through respiration and by sitting down. I have found it usually follows my hyper-activity and stress.

[TTSP]

What mario said. 

[hepcondor]

I am with you there on the high blood pressure too. Mine has gone up a good 20%.
Surely this should be listed as a side effect when there a quite a few of us on here with this issue. My tinnitus was almost gone weeks 3 and 4 and came back with a vengeance this last week 5.
But I got my all clear this week.
Have you been cleared yet Mario? Why are you doing more than 12 weeks?

[mario555]

I was UND after 4 weeks. I am doing 24 weeks because of my borderline status which is F4, 8 millions copies and 2 failed attempts with Inf-riba but I never was able to go above 24 of treatment. My insurance didn't care about which prescription I take and I have a $50, 000 per year allocation  I used up all my 2014 and 2015 allocation. The remainder was partially paid by Gilead and the rest by me.
In Canada, the pills sell for $950 each.

[Wilson]

I read the comments about using pot. I disagree with your doctor. My Doc did both phase I and II trials. 2000 patients. I specifically talked and ask about pot. Medical marijuana. SHe clearly said there is no evidence that marihuana had any effect on treatment with Harvoni. She had no issues. I included it on my medication list and she approved  it As ok for  use.

[TTSP]

I have had severe tinnitus, mouth sores, and tooth aches of and on for a couple of years. 3 Otolaringogists ? said I have Meniere's. Of course they have no idea what causes it so there is no cure. After reading up on it I found out a low sodium diet may help. I was also given Triamterene HTCZ. What that does is flush sodium out of the system and a result my blood pressure went down to normal. It has now creeped back up to borderline 140 over 88. The Oto's don't understand this and aren't interested in learning anything about Hep C. Like I have said before, I am speculating on this theory. I'm not a doctor. I just wanted to support you guys dealing with these symptoms. Hang in there. I haven't been able to hear much for quite some time. Even now it is bad when I wake up, it will subside a little for a few hours, and then start increasing again by 7 or 8 pm it gets to the point I just lay in the dark in quite until I finally fall asleep. Maybe someone, nurse, Gileaad, or your doctor may be willing to consider this? Hope this was helpful.

Peace.

[rmrdave2005]

well I been on harvoni 4wks violent headaches right off the bat.then my temper went through the roof I had a small one b 4 but this is unreal no patience what so ever feel sick,tired, super hungry when I get the urge had to start taking diabetic pills when I had not for 3 years I controlled it through diet and exercise

[mario555]

Rmrdave. Everything you described happened to many of us so try not to worry too much. You're getting rid of the disease! The side effects seem to quiet down as the weeks go by. Even the terrible hunger will die down. Use the opportunity to try to eat better and go for long walks. That way you won't pass your bad mood on your family (I'm talking from experience..) Good luck and come back to the forum if needed, we've all gone through this!

[Keanu2015]

Hi Everyone!

   Day 25 and doing well! Not much to report in the way of new or unusual side effects. For me it was always the most common ones headache and sleepiness. They were worse at the very beginning. Trying to maintain a good diet (Low A and Iron Included in everyday total) and regular intervals of exercise. Lots of water. Can't let the dead cells accumulate in my blood stream. I believe that causes me headaches now. I'e. I had a headache a couple of days ago. instead of taking drugs and lying down, I got on the treadmill for 30 mins anyway and it went away as my breathing got heavier and sweat poured out. It didn't come back for 2 days. It stays gone if I keep drinking water and exercising. I'm learning how to work with the Harvoni to keep my symptoms away. I'm sorry many of you are suffering from this tinnitus (it sounds horrible) and other bad side effects. However I must implore you to stay in the fight and don't give up! I have something strange going on myself for quite awhile but I think unrelated. I hear a low frequency vibration mostly at night. No one else seems to hear it. It sounds like a magneto from a monster windmill spinning in the earth from miles away. That's a weird description but I have no answers. Anyway.. to my friends in battle, I must return to my boys. I must bid you farewell for now. I hope you are all doing well today! ~ K

[Kathy C]

Tomorrow will be 4 weeks since I started Harvoni.
The last time I posted I had only been on Harvoni for 6 days.
Everyday I have headaches, mild.
Today I went to the walk-in because I have an sinus infection, now tonight I have a lot of congestion in my head, and a headache all day. The Dr told me that I had an upper respiratory infection but she thought it was viral so she gave me no medication at all, she said if I wasn't better in a couple of days for me to go see my Dr or come back there.
Tomorrow I have my first lab work, I am anxious to get the results.
This is my 3rd time around with a hep-c treatment, they said the third time is the charmer. Bless each and everyone of you doing a treatment and also for your Dr.

[Katie]

Hi Keanu,  Glad you are doing well!  Go Forward & Conquer!

As for your motor humming sound...I would pay attention to that and maybe have your blood pressure checked.  I recall hearing about that type of sound coming from the circulatory system and associated with blood pressure.  I may be way off base, but tinnitus is a completely different sound that that, from my experience.

You are doing fantastic and will beat this thing!

Hi Kathy, I am sorry your are experiencing headaches.  Sinus infections are horrible so try and nip it in the bud or it can be a real problem. Meg has been fighting one since October and a few years back I had one for a year, taking antibiotics on and off and it caused me ALL sorts of problems, health wise.  I finally found out I was very low with vitamin D (13) and once I supplemented it, I have been doing really well, rarely getting the flu or colds.  You might check your level, if you aren't sure about that.

Good luck with your blood work and hope it comes back with good results, showing you are a strong responder!


I have been feeling terrific and found new information on low viral loads at end of treatment where each and everyone of them cleared with the SVR 12, so I am still hopeful. (see the research thread posted by dragonslayer)) I feel too good to still be sick, but I have to wait another 3 weeks for my next blood work for verification. EOT VL = < 12 but still detected (2/27/15)

Take care everyone and have a great day,

Katie 

[nadewitt]

4 week lab results

Platelets   117 (normal 150-450)
AST-SGOT   51 (normal 0-32)
ALT-SGPT    67 (normal 10-35)
HCV viral load   NOT DETECTED!!!!!!

I am so happy I had to share!

[HHburme]

EOT Results !!

Hepatitis C RNA (PCR) IUs/ml
Result
Jul 01, 2014
30,000,000 IU/ml
Jan 12, 2015
<15 IU/mL
Mar 13, 2015
<15 IU/mL

Mar 13, 2015
Hepatitis C Interpretation
Not Detected

[HHburme]

Mar 13, 2015
Aspartate Amino Transf (AST/SGOT)
23 U/L

Mar 13, 2015
Alanine Aminotransferase (ALT/SGPT)
29 U/L

Yippee !!!!!

Fight the Good Fight !!

John

[HHburme]

Nadewit...Congratulations !!!!!!!     

[nadewitt]

And congratulations to you HHBURME! Great results! When do you go for your next labs to make sure it stays gone?

[HHburme]

12 weeks and if still UND then I'll be SVR12 .....basically cured.

Fight the Good Fight !!

John

[Karen1124]

Congrats to Nadwitt and HHburme congrats to both of you!! Got mine on march 5, whoooooo!! Feels wonderful!! Have a great Day!!
Life is Good!!  Karen

[SunIsOut]

4 week lab results

Platelets   117 (normal 150-450)
AST-SGOT   51 (normal 0-32)
ALT-SGPT    67 (normal 10-35)
HCV viral load   NOT DETECTED!!!!!!

I am so happy I had to share!

Hi my platelets were 49 at beginning of treatment.  What were yours?  Congratulations everyone and thanks for sharing the results.  I go for week 4 labs next Tuesday!

[Keanu2015]

Hi All!
 Day 26! I picked up my 2nd bottle today. I'm trying to get a 4 week VL test on Thursday (my 4 week mark). I put a message in with doc office today...waiting for a response. Should I be asking for an HCV RNA Quantitative or Qualitative? I read up on it a bit. Good arguments for both considering both the phase of treatment I'm in and also how dramatically my enzyme levels decreased at 2 weeks. Can I get a few chime ins on this topic? It almost seems like my Dr is granting me exactly the tests I want. He gave me precisely the labs I asked for at two weeks. Alt, Ast, D and platelets- Nothing more or less.. I didn't even see him. the secretary gave me a script for the lab. It's a bit discomforting but I'm watching you all here and handling my business.

    Congrats to all you undetected folks popping up here today! Glad to hear it!
Karen, John and Nadewit - Absolutely awesome!

Hi Katie! thx for the advice. I've been monitoring my blood pressure. It's been very good actually, although tonight I'm 128/81! High normal/low pre hypertension. Glad you suggested it. First time I was ever that high in my life!.. I'm going after my sodium and wheat. Iksnay on the hombre I guess.
About that sound I described... It actually comes and goes. Sometimes it's gone for months. I think there's "personal" industry around here perhaps that I"m unaware of. Maybe some fracking from a silo? Who knows. I'm very close to the Marcellus shale line but we are supposed to be in a prohibitive area. Lots of country and miles of uninhabited areas so who knows really. I have a feeling that if I went snooping around I may end up in a body bag! lol
Katie I feel that you are cured and any discomfort you're feeling may just be your liver rebuilding itself I'm praying for you.

Hope everyone is well tonight.

[Katie]

Hey Keanu,  I'd go with Quantitative as it gives you the measurement of your VL.  the other one just says detected or undetected although I believe the Qualitative may be slightly more sensitive.  I prefer seeing the actual number if I am in fact detected.  Just my personal opinion.

I just received a call from Gilead in regards to a question I posed to them on the Level of Detection (LOD) for their trial tests of <25 IU/mL.  LOD for the trials was 9 IU/mL.  This means those undetected could have had a VL of 1-8.  I now need to see what the LOD is for the test my lab ran for comparison.  The gal I spoke with agreed with the results of the small test results that Dragonslayer posted (on Hep C Research News & Studies) where those showing low levels at the end of treatment can clear it post treatment.

She was also interested in my side effects from the treatment as she does report anything experienced by us and later after it is analyzed will be available in a report. So it would be good for everyone to report your side effects.  The more data they have the more complete their analysis will be.

I am feeling good, and sleeping like a baby 20 days post treatment, so I feel very hopeful I am clear and cured and I got my remodel done TODAY!  Now my work really begins cleaning & getting things organized, thrown out and donated.  It's going to take Spring Housecleaning to a who new level!   

Katie

[Keanu2015]

Hi Katie!

    I think I'm going with quantitative then! You nudged me over the edge! lol. My indecision was over the fact that since my enzymes dropped to normal so dramatically by 2 weeks, that perhaps the more sensitive test would show UD by now? Anyway, I'll have to agree with you. That gamble may be a bit presumptuous considering they do have me on 12 weeks of treatment for a reason. My VL was 3.900,000 pre-treatment. Not the worst by far but I do have cirrhosis, so Harvoni may still be digging some of those little bastards out of their murdered tissue nests.
Thanks for the results of your never ending quest to find answers! It seems to be a bit more clear than what I understood previously. Glad you completed your remodel but even more so that YOU are feeling Good! Great news! I'll be sure to give them my treatment assessment- thanks!
Good luck on Tuesday Sun is out! We're pretty close together. Have a great night everyone! ~K

[nadewitt]

My platelet level before treatment was 109.

 I read something interesting today about one of the trials. A large percent of the participants suffered nasal congestion. Since I have been on treatment my nasal congestion has been pretty bad but since I have lots of allergies (trees, weeds, grasses, dust, mold etc) I just thought it was my allergies. My doctor suggested I change my time to take Harvoni from the evening to the morning so I could add 20mg of Omeprozole when I take it to try to ease my GERD. Last night I took my pill 3 hours early, then took my Tuesday pill 12 hours later at 7 am. So for a little while I had extra Harvoni in me and my sinuses were running like a faucet! Maybe what I thought was just my allergies is actually a side effect. Anyone else experience this?

[Keanu2015]

Good morning Nadewitt, Everyone! Day 27,

               I did experience something related to respiratory back in the beginning of treatment. I had like a coating on my lungs which is the best way I can describe it. Sometimes it was minimally productive with a slight cough. It wasn't always there though. For periods it would seem to be gone and then the next day back again. Sometimes later in the same day I didn't notice it. When I did notice it I would wheeze when I breathed in deeply. It was only with me for the first few days or so (within a week). Very strange. I cannot say that I was ever sick. I have noticed recently thanks to Katie that my blood pressure has been running a bit higher than normal for me. Just keep watching your symptoms and keep track so you can get help and also report them! Thanks for your input Nadewitt. Hope you and everyone else is well today!

[Ruthie]

4 week lab results

Platelets   117 (normal 150-450)
AST-SGOT   51 (normal 0-32)
ALT-SGPT    67 (normal 10-35)
HCV viral load   NOT DETECTED!!!!!!

I am so happy I had to share!

Congrats !!!!!

A note on your platelets-I have to see a hematologist regularly for anemia problems. He considers 100-400 to be normal. When I first saw him, mine were 3.  I Had to undergo IV iron treatments. Once my platelets got to 109, he was happy. So don't worry just yet about your platelet count (I say that because I worry about everything). It could just be the way that lab has their normal.

Congratulations to everyone on their great news!!!!

[Kathy C]

This morning my Infectious Disease Dr call to give me my results on my lab work.
When I started my treatment with Harvoni 4 weeks ago my Viral Load was 1.8 million
 And now my viral load is ____   28_____!
 This is a good Day!!!!

[Keanu2015]

Hi Kathy C,
    That's great news! I also just had my VL test done (9am today) and so anxiously awaiting my results. I finished my first bottle of Harvoni 7am this morning. I'm praying for the best! I'll make sure I post when I receive it. Hope everyone is well today! ~K

[pumpkin50]

This is my 2nd post as I was waiting to start my Harvoni before reposting  'I'm Genotype 1A with a VL of 298,000, treatment naive and have had Hep c since I was 13 yrs old and I'm 49 now...so basically 36 years.  I am on a 8 week treatment plan and I just took my 3rd pill last night...First I would like to say that my baseline prior to treatment is brain fog, exhaustion, insomnia and headaches at least 4 days out of the 7 day week.  After a lot of thought I had decided that I will be taking my pill at 930 at night so that it could be working during my sleeping hours and not competing with my stressful daytime lifestyle (which I'm working on changing) so Monday night I took my first pill which was both exciting and scary.  I had a strange sensation of tinnitis about and hour later which lasted about 4 minutes (this hasn't been a problem for me) and then an hour later I felt as though I felt kinda 'high/strange' and sleepy so I decided to not take my nightly Benadryl or Melatonin ( which I take nightly for insomnia) and just go to sleep. I slept great all night and I awoke without a headache which uncommon for me ( maybey my morning headaches have been due to my routine of taking Benadryl or Melatonin each night).  Tuesday I felt fine with no obvious new feelings and then I took my 2nd pill tuesday night and it made me sleepy so I once again didn't take my benadryl  and again slept well and woke up without my usual headache and the same for last night which was my 3rd pill and today I feel fine...I am taking it easy during the day but making sure to get in some exercise and trying to eat well.. I have not had any bursts of energy like some have posted and my normal brain fog and getting tired easily after a few hours of activities is still present but other than that I can just say that so far I am actually sleeping better (which is a miracle) and I have not had a headache yet...I am thankful for that and just trying to take it one day at a time!!  And drinking lots of water !  Thank you all for great tips!!!   

[pumpkin50]

And to Kathy C.  28?!  OMG yes today is a beautiful day congratulations!!!!

[Katie]

Kathy C...you are a strong responder and on the road to a virus free life.  Congratulations!!!

Pumpkin...That is how it affected me too...hadn't slept well in over 10 years and am sleeping like a baby ever since I started Harvoni!  My HCV symptoms were much like yours as well and the brain fog lifted, energy increased and I felt better than I have in YEARS!  I will say, week 9 & 10 (I was on 12 weeks) I had a real slump for about 10 days with horrible fatigue and depression ( I have never been depressed) but one morning woke up feeling fine again.

One thing I want to mention is Melatonin isn't all that good for the liver and wouldn't take it during treatment, but hopefully you won't need to worry about it.

My EOT results were <12 but still detected, but I am still feeling good, still sleeping and there are new studies stating low viral loads at end of treatment does not mean you won't clear post treatment, so am very encouraged and will have another test in 3 weeks to make sure they are't replicating again.

GT 1a. VL 3 million at begin of treatment  59 at 8 weeks and <12 at EOT and feeling good!  ALT/AST 95% normal for the past 10 years with no cirrhosis.

Good luck to you and I hope your treatment is as easy and even more successful than mine!

Katie

[kauri]

Clever!! To offset costs by buying shares! Congratulations.

[pumpkin50]

Thank you Katie for sharing your story with me!!  I had been learning so much about Harvoni and the side effects and planning how I was going to take it and changee my life style to be a little less stressful so that if possible I could 'help' the Harvoni do its job that I haven't reviewed much on what all can possibly occur at the EOT but it seems to me that <12 isn't much as compared to the beginning and possibly the Harvoni although you have completed your 12 weeks may have rendered the remaining ones useless!  Good luck on your next blood test it must be difficult to wait!   I am concerned myself about only taking the drug for 8 weeks, I understand the rationale that my VL is low however after having this for 36 years I figure they have taken up home for a very long time and are imbedded in every cell of my body (so to speak) however I will remain positive!1  I should also mention that I have an unual situation in that my boyfriend also has Hep C (we didn't contract from eachother. both confessed on our 3rd date that we had it) and he started his Harvoni yesterday. He is 1A and VL 2,500,000 and has been treated twice before (interferon /Ribaviron) and he is on a 12 week treatment plan.  He also has not yet had any side effects...tomorrow will be day 3 for him     

[atomic dog]

5.5 weeks in on Harvoni 12 week treatment. Yesterday I experienced severe dizziness, just barely to drive home and get in the bed. Straight to bed for 3 hours. Could be a gallbladder flare up (wasn't able to get it removed because Hep C can cause terminal bleeding). Took today off from work, listening to the stereo. Anyone experience dizziness?

[atomic dog]

Thank you Katie for sharing your story with me!!  I had been learning so much about Harvoni and the side effects and planning how I was going to take it and changee my life style to be a little less stressful so that if possible I could 'help' the Harvoni do its job that I haven't reviewed much on what all can possibly occur at the EOT but it seems to me that <12 isn't much as compared to the beginning and possibly the Harvoni although you have completed your 12 weeks may have rendered the remaining ones useless!  Good luck on your next blood test it must be difficult to wait!   I am concerned myself about only taking the drug for 8 weeks, I understand the rationale that my VL is low however after having this for 36 years I figure they have taken up home for a very long time and are imbedded in every cell of my body (so to speak) however I will remain positive!1  I should also mention that I have an unual situation in that my boyfriend also has Hep C (we didn't contract from eachother. both confessed on our 3rd date that we had it) and he started his Harvoni yesterday. He is 1A and VL 2,500,000 and has been treated twice before (interferon /Ribaviron) and he is on a 12 week treatment plan.  He also has not yet had any side effects...tomorrow will be day 3 for him     

Wow, a Harvoni love story. I like it. Best wishes to you both.

[hayliegirl]

Katie, thank you so much for the advice!! Turned out to be phenmonia!! I was more then relieved when I got the news!! Mostly, because I knew I wouldn't be feeling those side effects for long:) I thought it was Harvoni.... Looks like a great recovery from here.

[mario555]

Atomic.... Don't worry too much about the dizziness, it should go away in the next 2-3 weeks! If it is like what I experienced, it comes super fast and is enough for you to fall...
I am on week 19 out of 24 and have experienced most of the side effects described in this forum.
After 7-8 weeks you should get over most of your side effects (but they come back with a vengeance after week 12...) the good news is that the pills won't kill you (I am the proof) and you should be able to get rid of that awful virus. That is the good news! The bad news is that you must bid your time and go through the side effects no matter what they are because there are no other ways to get rid of the virus for years to come. I have used valiums at times to help me cope with the treatment. It is an old medication but the effect stays with you for 2-3 days which is the time I needed to get a hold of my anxiety.
Good luck!

[hayliegirl]

Great advice Mario. How about insomnia?? Does that go away?? I can sleep but I am every 1hr and 15 mins.. It's annoying, but I can live with it!!

[mario555]

Atomic. Yes I have had insomnia but generally, the quality of your sleep should improve.
If I may suggest... Go back to the beginning of November 2014 and you'll be able to read the posts from the 1st batch of patients. During our 1st few months we wrote extensively about our side effects. As you go up in time, you'll read about how we coped. It should make for a good read (if you have absolutely nothing else to do...).
The good news is that my wife finds that my overall health has improved tremendously, better skin color, muscle tone, level of activity, etc. It is definitely "doing something good". But.... I have a generally shitty mood and I am really impatient, a real pain in the.... Don't despair, you'll get through!

[hayliegirl]

Aside from not sleeping, going on 13 days of Harvoni, feel almost no side effects!! My daughter and husband are right beside me. God bless them. It's nice to reach out to others feeling; possibly the same things... Go to get levels checked in April.. Wish it was sooner. I was going to start taking Harvoni on the evening. I read that works best for someone...?

[pumpkin50]

Tonight will be day 7 for me I take it each night between 930 and 10:00 pm and I have been sleeping very well ( my baseline is insomnia and I haven't had to take a Benadryl or Melatonin since I started)....No other side effects as of yet!  My boyfriend takes his Harvoni every morning and it does not make him sleepy like me, He is on day 5 and he says he has had a nightmare every night since starting which is not common for him...But no other side effects!  One day at a time...  Good luck to you all!!  And thanks Atomic,  hopefully a Hep C love story with a happy ending!!

[kauri]

Tomorrow is day 7 for me and I'm looking forward to finding out what's happening. Side effects have been same as for others...drowsy, falling asleep, sleeping extra deep and well, hints of a headache for a few days, then a real headache one morning.
My son son was sure it was dehydration and stood over me while I begrudgingly drank water..lo and be-hold! he's right again.
I know in traditional healing, it's thought that when you're killing off a bug, you need extra water to flush it out. That would explain it.
I have complicated health, so was worried I wouldn't be able to handle Harvoni, but so far so good. If I symptoms do get worse, I'll imagine the viruses dying off to distract me.
Thanks everyone for the warm community. Oops there's goes another 10,000 viruses

[elizabethfaraone]

It's been over a month since I finished Harvoni and I'm still very tired and whenever I am active, I end up nauseaous and with a headache.  Continue to gain weight.

[hayliegirl]

Hi Elizabeth, may I ask you how long you were on Harvoni?

[elizabethfaraone]

Hi Elizabeth, may I ask you how long you were on Harvoni?

12 weeks

[Katie]

Hey Elizabeth, I am sorry to hear that!  I am right behind you as I finished Feb 25th and every day feel a bit better, of course my treatment was really easy on me too.

 Have you thought about going in for a general check up to make sure nothing else is going on?  One gal wasn't feeling good and it turned out she had pneumonia.  She assumed it was side effects from Harvoni!

Hepatitis C can affect many things since the liver removes toxins and is important in all aspects of health.  It may be you are just adjusting to such a drastic change and hopefully it will work itself out, but that doesn't  mean it is fun to go through.

You hang in there and take good care of yourself!  Spring is here and that will help all of us.  A time for rejuvenating and becoming stronger!!   

Katie

[elizabethfaraone]

Hey Elizabeth, I am sorry to hear that!  I am right behind you as I finished Feb 25th and every day feel a bit better, of course my treatment was really easy on me too.

 Have you thought about going in for a general check up to make sure nothing else is going on?  One gal wasn't feeling good and it turned out she had pneumonia.  She assumed it was side effects from Harvoni!

Hepatitis C can affect many things since the liver removes toxins and is important in all aspects of health.  It may be you are just adjusting to such a drastic change and hopefully it will work itself out, but that doesn't  mean it is fun to go through.

You hang in there and take good care of yourself!  Spring is here and that will help all of us.  A time for rejuvenating and becoming stronger!!   

Katie

She had pneumonia without a fever and without congestion?

[Katie]

I don't know about congestion...she said her insides felt on fire so I encouraged her to go to a doctor if she had a fever.

Walking pneumonia can be very sneaky.  I had a friend who actually died from it even though he was going to a doctor for trouble breathing and they were concentrating on his heart and never did a lung xray.  He even saw a heart specialist.  It was horrible. 

I wasn't implying you have pneumonia, just that something else may be going on and sometimes it is good to have everything checked out.  We all went through a strong treatment right during the bug season.

Hope you feel better soon!

Katie 

[Keanu2015]

Hi Everyone!

    Day 31 of 84 coming to a close. Nothing new to report good or bad. I do have some lower back pain/aching but I think that is unrelated. I do have an ADR in there but my knee has also been shredded in the past and anything that causes unusual (unexpected for me) joint pain usually goes there first or at least simultaneously.

    Omg Katie I'm so sorry to hear about your friend! It's a darn shame they couldn't catch that sooner. They have meds for such things! ugh
Elizabeth, my gut tells me that if we can clear this disease that's been with us for so long, that we necessarily MAY NOT be tiptoeing through the tulips immediately after treatment. I agree with Katie. Give the hope of truly feeling well some time to unfold. Just keep track of the VL and make sure it's gone! Hope everyone is having a good night of healing! 

[Katie]

Thanks Keanu, It wasn't as if it happened overnight either.  It went on for a couple months of complaints and doctor appointments, but he just didn't question the doctors.  He literally dropped dead in a parking lot after he took his wife to the opera!  She insisted on an autopsy and they found he had a very healthy heart and cause of death was walking pneumonia.

So lesson learned.  Be pro active, keep all of your health records and ask questions.  If you feel the doctor isn't listening to you, get a second opinion or third!

All of us have seen doctors on and off for years so I am sure you all can relate.

On a happier note, we have another beautiful spring day here and my daffodils are about to open.  Lots of things popping up and budding out.  I LOVE spring and am grateful to be here enjoying it!

Katie

[Ruthie]

Katie, I'm so sorry about your friend

A dear friend of mine has an immune problem called Iga deficiency. She never gets a fever. She finally got her current doctor trained that when she says she has pneumonia, she has pneumonia.

Elizabeth, I hope you get some energy soon!

[Lynn K]

Went to my local walk in clinic today I have the cold/cough going around for a week today.

Because of my chronic severe medical condition cirrhosis plus anemia from the riba just to make sure I don't develop pneumonia and also because I have a slight rattle on extream exhale I now have antibiotics plus an inhaler along with codine cough syrup to go along with the Harvoni riba stew swimming in my blood.

Eighteen weeks down and six to go on Tuesday last bottle arrives on Wednesday and my birthday is Thursday hope I feel better soon

May we all be 1000% feeling better after beating hep c!

[Katie]

Feel better Lynn!  Sorry you got the crud, just to top everything else off.  Congratulations on hitting the 3/4 mark!  It's downhill for you now and you'll be finished soon.  What a relief for you and I just know you are going to beat it this time around.  I am looking forward to do the Happy Dance with you!

Rest and let those antibiotics do their job so you feel good on your Birthday.  Hope it is a special one and you are surrounded by love and lots of sunshine!

Katie

[EleanorB]

Just started on Harvoni - am day 11 of 8 week treatment.

The nausea was bad for the first 4 days, but has subsided and a lot of the Hep C symptoms I had like upper right quadrant pain are already getting better.

Would like to know if anyone else experienced the feeling of a "fizzy" liver in the first days and whether anyone else has had a red, itchy rash on lower arms and legs.

Good luck everybody!

[Keanu2015]

Hi Everyone! Day 32of 84,

    Hi Eleanor! I had the same sort of symptoms but without the rash. I'm almost sure that rash was caused by the virus die-off looking for places to exit your body though. When I exercise and sweat I get flushed and itchy in some parts of my lower back. I always imagine it's because the body is forcing dead virus out any way possible. Drink a ton of water and when you're sick of it drink more!... Everyday! I had bad terrible upper right quadrant pain as well which by now is all but gone. I still notice that area if I eat too much sodium or sugar for the day ( I use the fitness pal app so I can see those numbers), but it's not painful anymore thank God! Harvoni is amazing. I'm still waiting for my 4 week VL to come to me. It was mailed from the lab Friday. Sounds very difficult what you're going through Lynn. Prayers for fast healing. Hope you have a happy birthday! Hope everyone is feeling well today!

[elizabethfaraone]

I don't know about congestion...she said her insides felt on fire so I encouraged her to go to a doctor if she had a fever.

Walking pneumonia can be very sneaky.  I had a friend who actually died from it even though he was going to a doctor for trouble breathing and they were concentrating on his heart and never did a lung xray.  He even saw a heart specialist.  It was horrible. 

I wasn't implying you have pneumonia, just that something else may be going on and sometimes it is good to have everything checked out.  We all went through a strong treatment right during the bug season.

Hope you feel better soon!

Katie

Thanks for the information.  I was just curious.  I think I want to have an x-ray of my lungs just to make sure everything is OK after treatment.  Especially since I have a history of Spontaneous Pneumothorax.  I didn't realize you can have pneumonia and have minor symptoms.

[Islandgirl]

Yes, Elizabeth, I never dreamed I had pneumonia and had gone to the doc for something else but also had a cough. 

They were glad I came in because they discovered I had "walking pneumonia" in one lung!  A pretty heavy duty antibiotic shot and a filled prescription took care of.  We were all surprised that I had it, but as Katie said, you can die from it so it's nothing to mess around with.  I felt lousy, didn't have a fever, and never even thought about pneumonia as a possibility...

Whatever is going on, I hope you get an answer, get rid of it, and are back on a healthier track soon!  Sending you healing thoughts and energy.  ...Islandgirl

[elizabethfaraone]

Yes, Elizabeth, I never dreamed I had pneumonia and had gone to the doc for something else but also had a cough. 

They were glad I came in because they discovered I had "walking pneumonia" in one lung!  A pretty heavy duty antibiotic shot and a filled prescription took care of.  We were all surprised that I had it, but as Katie said, you can die from it so it's nothing to mess around with.  I felt lousy, didn't have a fever, and never even thought about pneumonia as a possibility...

Whatever is going on, I hope you get an answer, get rid of it, and are back on a healthier track soon!  Sending you healing thoughts and energy.  ...Islandgirl

Thank you for the information.

[Long_Haul]

@Elizabeth, sorry to hear you are not feeling well. As others have said, definitely have it checked out. I hope you get some answers and feel better soon.

@Lynn, I can really sympathize with you on the respiratory issues. I have been really fatigued and haven't posted much lately because of it. The Ribavirin has given me fits the last 4 weeks. Lots of dry cough during the day and waking with a bit of congestion. That along with being generally wiped has had me down and out. After 3 earlier rounds of it , I know this is normal progression for me with Ribavirin. It will be a moot point after Thursday as it will be my last day on meds. Met with my GI a week ago and he believes I will be done for good this time and can expect from my labs and such that I will make SVR12.
I am looking forward to my EOT results and then have to wait until July for my 12 week labs. Good luck with clearing the rattle and I hope you are breathing a little better.

@Katie, good news about spring up there in Alaska. We still have a foot and a half of crusty snow on the ground and it was around zero here last night.  Can you please send along some of that warm Alaska weather to us here in Vermont. Good luck on your next PCR results.


Best wishes to all,

AL

[Keanu2015]

Hello everyone!

   Day 34.... I got my result back from my day 28 labs- HCV RNA =UNDETECTED!!. Funny thing is that I requested my own blood tests for AST, ALT,D and platelets at 2 weeks and HCV RNA Quantitative (VL) at 4 weeks. So I'm waiting a few days for my copy of the 4 weeks result which didn't come and so I decide to call them this am. They fax me a copy and there's a note on the bottom. It says 'call DR for appt. HCV RNA 0 - Finish course RX'. To me that seems a bit scary. So I'll guess they want me to do EOT at 8 weeks? I have cirrhosis and am on a 12 week course. To get that financially covered was like pulling teeth and I'm not sure if that's the right thing to do. Does anyone have thoughts on this? Should I be happy and just go with it? Thanks in advance for your input.

[EleanorB]

@ Keanu - I would assume that their record keeping is not great and that the response you received was an automated one. If you are on a 12 week course and got approval for it, you should stay on it and finish it by all means. Stopping at 8 weeks does lead to a higher relapse rate for those with higher viral loads, so unless you get strict instructions from a real MD to stop, I would say you should stay on treatment. As one who knows, software is bad all around and you always have to fight to be your own advocate.