New to treatment

[Hopeful123]

 I started harvoni in mid June. I've had hepc type 1a for about 12 years now and have never been treated for it before because soposedy It wasn't bad enough and there were other options coming out. I'm thrilled that that option is here and even more thrilled that I get to be a part of treatment. At 4 weeks after starting treatment I had undetectable levels. On 12 week treatment starting viral level in millions with 0-1f. I was shocked and ecstatic to hear undetected. Can't wait to hear end results, staying hopeful:). As far as side effects I have sun sensitivity which is t a big thing but definately have to be aware of it expecially in the summer. Tiredness which was the worst in week one as well as stomach issues( not too bad but it feels weird). The plus side effects were that I slept 100 percent better when it came to quality of sleep. Good luck to everyone out here fighting this.

[Bree]

Hi Hopeful123,

So happy you are coming up UD!  I started 12 weeks Harvoni on July 6 and get my 4 week blood work this week.  I have had some similar symptoms to yours, very moderate after first couple of weeks, and even then, not too bad.  Compared to previous treatment... well, there is no comparison.  Generally I have trouble sleeping, and I too, sleep better (with some kind of weird dreams here and there.)
Plus, I just feel happy!

So grateful for this treatment and for your UD too!
Bree

[Hopeful123]

Thanks for responding Bree
Hopefully ur 4 week goes well. This medicine is pretty great, the odds are in our favor:)

[KimInTheForest]

Welcome to the forums, Hopeful! Great to hear that you are UD at Week 4. I was too. Good luck to all of us on this miracle drug (or in my case, awaiting post-treatment results).

best,
kim

[Hopeful123]

Thanks Kim:)
Good luck with the post treatment results. I'm almost on to my next 28 days and hopefully we both remain at undetected:) I'm at the 8 week mark now. 4 more to go!! Yay!!!

[slats1056]

First time so please bear with Me! Found the website a couple of days ago. So any pointers would be appreciated. I'm a 59 year old male, had hep back in 1973. Poster child for ways to get infected, besides blood transfusion. Drugs & tattoos primarily. Ironically, most of which are Dragons!!!! 1998 blood test HEP C. Refused interferon treatment, Dr. thought I was crazy! Opted for herbals until new treatment was found. Fast forward to2015, Type 1B 1/2 million quantitive, biopsy inflamation grade 2 , ast mormal range alt elevated 72. insured BCBS TX, applied for Harvoni by Dr, 7-7-15. reviewed by Prime Therapeutics Clinical Dept. Approved 7-15-15. rec,d RX 7-16-15. 25 days into 1st rx.,go in Monday for first 4 weeks lab work & pick up 2nd RX. Hoping for health & SVR for all!  OOPS, fibrosis grade 3. Twenty five days into twelve week regimen.

[Hopeful123]

Hi tommy:)
Thanks for posting, I don't think it's crazy to refuse interferon at all. That stuff sounds scary with the side effects. My dr did the opposite though. Every time I went in I was hopeful that he would start me on treaent.. And every time I would get the same were waiting for something better because I'm at an f0-f1 and they say I have a low viral count but it seams like mine is higher than most of the people that post here. But it's below 6m. How long were you approved for? It seams like you started a month after me:). I think one of the best pieces of advice is just to stay hydrated, good nutrition, take it as prescribed etc. have you had any side effects so far from the meds?
Good luck on ur 4 week:) it's so exciting to see results

[Lynn K]

Hi Tommy and welcome

My story for getting infected with hep c is kinda similar except my tattoo is an Anuk Egyptian symbol for eternal life which also seems ironic.

Had my wild days in the Army while stationed in Germany 01/77 to 08/80

If you look at my treatment history in my signature below you will see that if I can make it odds are good that you can too

Good luck
Lynn

[slats1056]

Thanx Lynn, Still working on My typing. Also,getting used to navigating the forum.Cautiously optimistic, It doesn't help much that I am a glass half full kind of guy! But, positive thoughts make for positive results.

[slats1056]

Hopeful123, Seem to have deleted My reply to You. Hydration not a problem, working on the nutrition. Sides tinnitus, headaches (several severe) lower back,neck,hips,knuckles aching.thinning hair, brain fog, all manageable. Felt so bad & tired over the past forty years that this is a cake walk. Twelve weeks approval. Apprehensive but excited about the tests.

[Hopeful123]

Tommy,
I've had the head ache it doesn't seam as bad as ur headaches but what works for me is drinking water. Ill feel the head ache come on and after I drink a glass or two it goes away. Stress management techniques could help too:) and getting enough sleep. I didn't get enough sleep and all the possible side effects came out full force. I had cramping everywhere and my whole body hurt. I took a nice warm bath, got rest. The next morning I was like 80 percent better and the day after that I felt completely better... I was shocked at how just a little self care could go along way. And since have made sure not to be stressed and skip sleep for a night cause ouch that felt like I was hit by a truck. Make sure you take some time for yourself expecially if you have an on the go job or alot of stress in ur life and hopefully some of this stuff helps:)

[slats1056]

Hopeful, I drink 3-4 qts. water through out the day. Sleep is definitley a problem.Never have slept more than 4-5 hours a nite unless extremely exhausted. STRESS? What is this stress You speak of? lol. Trying to do more reading to relax when possible. Full time job,home life with kids, grandkids & pets, plus spouse with her own problems doesn't make it easy. I try not to sweat the small stuff but sometimes it all catches up to Me. Have some cramping also, added gatorade to the fluids. Thinking about trying Pedialite for some electrolyte replacement.

[Hopeful123]

Tommy,
The electrolyte drink sounds good, I could really use one of those:) I drink about 2 times that amount of water, at first I was wondering if its way too much and it probably is expecially with the cramping that happens on occasion. A positive that I did notice from the medicine is that although I was in alot of pain that one day it healed sooooo much faster than it ever would have before I was undetected.

[seekir]

Posted by slats1056:

1998 blood test HEP C. Refused interferon treatment, Dr. thought I was crazy!

I took a similar route after learning what a poor record the pegasys had with genotype 1a. Caught quite a bit of flack from medical pros, and even more strident scoldings from interferon veterans, some of whom seemed extremely intolerant of the "wait and hope for better options" attitude some of us with moderate symptoms chose to take. I was surprised to find myself subjected to several vitriolic rants on a now defunct forum from a few members that viewed my decision to wait as some kind of hepper heresy. I suspect some of the professionals were influenced by potential profits which the legacy combination therapy could net for them.

I'm relieved to have been fortunate enough to have recently received assistance from Gilead. They're providing me with Harvoni in spite of my relatively mild liver condition. Might be that our choices will turn out well.

[seekir]

Forgot to mention, those duplicate avatars threw me for a loop momentarily: couldn't seem to square the conflicting information till I realized there were "twins."

[KimInTheForest]

congrats seekir on getting approved for Harvoni! sounds like you are on your way to being cured.

kim

[gnatcatcher]

Posted by slats1056:
...1998 blood test HEP C. Refused interferon treatment, Dr. thought I was crazy!
Posted by seekir:
I took a similar route after learning what a poor record the pegasys had with genotype 1a. Caught quite a bit of flack from medical pros....

Renegade #3 here. I had done my homework before I saw the Hep expert in 2003. His spiel about the current treatment duplicated what I had read, so I knew there was a contraindication in my case and I had low odds of being cured but high odds of being harmed. So I said, "My gut reaction is I shouldn't try this treatment." He paused, said he agreed, then said to see him once/year because there was better stuff coming. A year later he urged me to enroll in a study of a treatment that added a third drug to the one that could harm me and the other old drug -- he said the study would save me a lot of money. He was in a hurry, and I now believe he had forgotten about the contraindication. But I told my PCP I would continue researching new cures on my own and would go back only when there was something I felt relatively safe trying.

My PCP, bless him, reluctantly went along with the watch-and-wait and made sure I had periodic hepatic panels, ultrasounds, VLs, etc. But other doctors I had to deal with, especially the gastroenterologist who did my 2007 colonoscopy, tried to badger and bully me to go see the Hep doc pronto. That's when I started getting severe white-coat hypertension! (My home blood pressure readings remain good, and the home machine checks out well when compared with my PCP's BP monitor, but every time I'm in a medical setting, the numbers go sky high.)

Thanks to the side effects thread on this forum, by spring I was ready to ask the Hep doc about putting me on Harvoni. Lo and behold, the Hep expert said that I couldn't have taken any Interferon-based treatment but Harvoni would be safe for me despite my various other chronic conditions. (That's why I think in 2004 he simply forgot about the contraindication.) He's terribly overworked -- he had popped his head in several times to say he was running at least an hour late. At the end of my appointment, he commented that before Harvoni came on the scene, he had begun to doubt that he would see a good cure in his lifetime. I felt sorry for the guy, slogging away for all those years during which side effects were awful and cures were rare.

[seekir]

...sounds like you are on your way to being cured.

Thanks Kim. I think there's reason to be optimistic.

[slats1056]

  For the life of me, I can't figure out why some Dr.s think they are God & should be trusted & complied with when the patient has doubts or misgivings about what they think is best for You. Don't get me wrong , right now I have a gastro that is sharp as a tack,gives me as much info as he can, finds out what is needed if he doesn't know, & above all he listens to what i think & have to say!!!! My first dr. & gastro just basically told me I didn't know what I was talking about. Interferon was the way to go period! Here is the brochure, sign up & lets' get on with it. I am not highly educated, but I have a brain & know how to use it, as do all of You here at the forums. I knew more about the treatment by the time I went to the first gastro than he did!!!!!!!!!But I digress, this is a sore spot for Me. I am not a sheep, nor am I a wolf. I try to live & let live. Over My lifetime I have harmed many & been harmed in return. So therefore I try to help where I can & make some amends for my errors. I believe that is seen in alot of people here on the forums.  Any way, now that I got that off of My chest, tomorrow is #28 of first rx. Go in next Monday for My lab results. kind of apprehensive yet upbeat & excited. Good luck seekir, I hope Your journey is kind to You. gnatcatcher, I like the way You think. everybody take care of Yourselves because if You don't, no one else will. You must be strong for Yourself to be able to help others, yet have a shoulder to lean on when weak! Using Your head for more than a hat rack makes You a smarter & stronger person, INFORMATION IS KNOWLEDGE, SEEK & YE SHALL FIND! Good health everyone.

[Hopeful123]

For the most part I think I'm lucky when it came to drs that specialized in this area. They were/ are great but yes definately do your research for yourself too. It helps in many ways. The more you know about it the better informed your questions will be and the more informed and accurate answers you recieve.

[Lynn K]

Personally I am damn the torpedoes and full speed ahead charge the sniper nest kinda gal.

I took every treatment available. When Telaprevir came out I had cirrhosis by then and the doctors did not want me to treat because with my history and the cirrhosis my odds of cure were about 14% and a much greater chance the treatment could cause me to go into decompensation.

I went for a second opinion at UW liver in Seattle they said the same nope.

I treated once with interferon mono therapy and twice with interferon ribavirin once in a clinical trial setting.

I just wanted to do everything I could to rid myself of the foreign invader of Hep c

But I do understand my path is not for all I just have to do something and attack. Waiting is just not my style

[seekir]

I just have to do something and attack. Waiting is just not my style...

I think slats1056 and I recognized that interferon was not a useful mode of "attack" for us. This knowledge in my case arose from the experiences of interferon "pioneers" like you with GT 1a who had no luck with it Lynn. The fact that numerous actors were intolerant of our choices didn't alter the paths we chose, though I lost friends and considerable respect for those who felt that they had some unique comprehension of the "correct" response to HCV. "Waiting" is not all that I did. I made significant lifestyle changes including the obvious alcohol abstinence and learned all that I could about extending the health of my besieged liver. The fact that I survived 15 years of post-diagnosis living (preceded by who knows how many years of pre-diagnosis viral infection) and still tested as too healthy to merit Harvoni treatment (according to HMSA) is arguably a testament to the fact that I at least "did no harm." I suspect that slats1056 probably undertook similar steps. So, hat's off to you and gnatcatcher, Tommy. You both stood your ground.

As I've mentioned in other posts, if I'm fortunate, the path I chose will prove to have been a good one for me. My friend and classmate, also a GT 1a carrier did one and a half courses of the pegasys combination therapy. The second one was terminated by his Doctor because of a dangerously low wbc count. A little more than a year ago he died of liver cancer. According to his fiancée he suffered a very painful death. That same night PBS aired a segment about a new drug called Sovaldi.

[slats1056]

 No offense to anyone, but I have a good knowledge of My body & mind. As well as what it can & can't handle/tolerate.I was very pissed at the original doctors , but I kept my mouth shut and found new ones. At the time being a father of three and the primary breadwinner of the family it was not even an option. Much less the contraindications, side effects, and long term effects suffered by many. AGAIN, IT WAS MY CHOICE AT THE TIME, AND I STAND BY IT.  Everyone is different as well as having knowledge of their own self and circumstances. Choosing lifestyle changes,dietary changes,and herbals definitely did not hurt my liver over the years of waiting. I agree with Lynn about damn the torpedoes and full speed ahead. However being a sniper gives me the chance to pick and choose my target of most importance, and chances are You will never see me!!!!! Again no offense to anyone, but I feel My choice was the best for Me & My family at the time, not everyone else!                                                                                                                          By the way, day#28!!! First RX down and two to go. I really doesn't seem like four weeks since starting. 56 days left. This forum has been a great source of help & info. in the short time I joined. Five more days until My first lab results are in. Damn, that seems like it is longer than the four weeks so far!!!!!!

[gnatcatcher]

Personally I am damn the torpedoes and full speed ahead charge the sniper nest kinda gal. . . . But I do understand my path is not for all I just have to do something and attack. Waiting is just not my style

Well put, Lynn (and Tommy and seekir). We each have a unique style of making medical decisions, which we must heed lest we regret our decisions. For anyone interested, there's a terrific book (c) 2011 called Your Medical Mind: How to Decide What is Right for You. It's by husband-and-wife doctors Jerome Groopman and Pamela Hartzband, who themselves have very different styles of making personal medical decisions. They cover loss aversion, number needed to treat, number needed to harm, framing, deciding while in hot vs. cold emotional states, and three spectra we each fall somewhere along: whether we prefer a naturalism orientation (helping the body heal itself) or a technology orientation (favoring cutting-edge medications and procedures); whether we want maximal or minimal treatment; and whether we are believers (there's a successful solution out there somewhere) or doubters (risk-averse and skeptical of all treatment options).

I deeply appreciate everyone's tolerance of our individual differences in style and the great support we offer each other.

[slats1056]

Bravo gnatcatcher, sometime the fingers do not follow the brain while trying to get the thought processed to the keyboard. Couldn't have said it better. Each person chooses their path by free will and should not be swayed unless it is truly life threatening. I found the forums through Lynn Porters blog, & have read many of Lynn k's postings. I have nothing but admiration for their intestinal fortitude in the face of daunting adversity. As well as perseverance in the face of failure. People like that made it so much easier to make an informed decision , though I did not chose the same path. Diverse thinking and free will is what differentiates us from all others, get informed-choose well- be brave when You can-cry when You need to!!!
After all we are but mere humans.

[Lynn K]

yes not trying to give anyone a hard time here for their personal choices and some of us had to put our heads down and run headlong into a wall to get the data that the old treatment were not that great.

I too was working full time no kids just my spouse but we needed both of our incomes so I signed up and trudged through treatment to no avail.

When I treated there was no data just the reported flu like symptoms and a reported 60% chance of cure obviously we know a lot more now

LK

[slats1056]

 Sorry if I came off a bit snarky yesterday, I apologize. It was pointed out to Me that I was a little on the bitchy side. Hope I didn't offend anyone or piss anybody off. That was not My intent. I need to temper My words before I say them sometimes. I hate to come off as THAT person. Again, that was My inner a-hole coming out! Anyway, in a much better mood today.                                                                                                                       Lynn K.  If not for pioneers like You and others that took the leap of faith when no one else did, I would not have been able to make an informed decision on my path to treatment. I have the utmost respect & admiration for what You guys have gone through. I can only imagine not having experienced it myself.
   Also, pointed out to me that a lot of early patients were women. Not all were big old strong tough guys like myself who did not take the treatment. LOL.
   Again , I personally am indebted to those of You that went through what I chose not to. Your sacrifices help me greatly.

[gnatcatcher]

Tommy, speaking for myself, I enjoy your vivid personality. What would an orchestra be like with plenty of violins but no tuba? Plus, I assumed your extra, uh, enthusiasm yesterday was at least partly due to the fact that you are waiting for test results. Best of luck on Monday!

[slats1056]

gnatcatcher, Thanx! Moods have been all over the place lately. Wanted to make sure that being a relative newbie that I am relatively in line & not stepping on anyones toes. I have been told in the past that I am outspoken to a fault & have no filter for My thoughts as they come out of My mouth. So when the switch is flipped I am kind of like a bull elephant & God help anything in My path! Someone has to be the designated MF'r. I seem to open up & step right up more than my share. Please, In the future , don't take it personal when I vent, usually fine within a half hour or so.
 Nervous about tests Monday, but got in a rare good nights sleep last nite. Hope everyone out in hep land is feeling at least half as good as I do Today. Rare day, I'm going to enjoy it while it last. Everybody have a good day.

  By the way, I really enjoy the interactions that I have on the forums. Very refreshing to talk with people who are open & opinionated as well as tolerant of people like Myself

[gnatcatcher]

Tommy,
I've had the head ache it doesn't seam as bad as ur headaches but what works for me is drinking water. Ill feel the head ache come on and after I drink a glass or two it goes away. Stress management techniques could help too:) and getting enough sleep. I didn't get enough sleep and all the possible side effects came out full force. I had cramping everywhere and my whole body hurt. I took a nice warm bath, got rest. The next morning I was like 80 percent better and the day after that I felt completely better... I was shocked at how just a little self care could go along way. And since have made sure not to be stressed and skip sleep for a night cause ouch that felt like I was hit by a truck. Make sure you take some time for yourself expecially if you have an on the go job or alot of stress in ur life and hopefully some of this stuff helps:)
. . . I drink about 2 times that amount of water, at first I was wondering if its way too much and it probably is expecially with the cramping that happens on occasion. A positive that I did notice from the medicine is that although I was in alot of pain that one day it healed sooooo much faster than it ever would have before I was undetected.

Hopeful, how have things been going for you these past few days? Have you been able to find an amount of water that keeps both the headaches and the cramps away? I think I've found the "sweet spot" that's right for my particular body, but it's amazing how one cup less or one cup more leads to side effects, so I hope you've found your ideal quantity and are able to get enough rest, too.

[longtrip]

Keep your chin up, I did Harvoni for 12 weeks, it's been over three months now since I finished and my blood work came back UD. It's gone finally after three tries. I lived through the old treatments and the hell that came with them. Harvoni was a piece of cake. Really didn't even feel as if I was taking anything.  I now have more energy then anytime in the last ten years, but the one thing I noticed was I can't sleep for more then two hours at a time. Hope you all have the same luck I had with this drug. Felt it was a good time to hear from someone over three months finished with the treatment who had the results we are all hoping for. Good luck

[KimInTheForest]

Congrats on being cured, longtrip!

Are you saying that 3 months after treatment you are still experiencing significant insomnia? And was this a result of treatment, or was it something you always had? I ask because I am just 16 days post-tx (harvoni+ribavirin) but am having severe problems with insomnia now - much more so than I had while on treatment or before treatment. I think I am going to have to start taking benadryl to sleep. I am not getting hardly any sleep, and I don't think that is helping my healing or recovery. It feels like a chemical alteration has occurred in my body/brain that will not let my mind get sleepy when I lie in a dark room, no matter how sleep-deprived I am. It is not insomnia due to stress or worry. I have heard other people here mention post-treatment insomnia after finishing harvoni. What are you doing to sleep?

best,
kim

[gnatcatcher]

longtrip, congrats on the SVR12! You join Lynn K. and some others in the Hep C Marathon Hall of Fame. I hope you'll add your great results to the thread called "After tx (POST) 4wk or 12 wk SVR results (Harvoni only) - CHECK IN HERE PLEASE!"

[longtrip]

It's great knowing the Hep-C is GONE. I started treatment 01/05/15 and did 12 weeks, this after three years of all the other terrible treatments that never worked. As far as not sleeping, yes it's the one difference besides the increased energy that I noticed and after being off Harvoni for over 4 months it doesn't seem to be getting better. I to lay in a dark room wide awake even after a long hard day at work and end up turning the TV back on because it boring looking at the ceiling until 4 am. I don't understand why but if that's the price I had to pay to get rid of Hep-C I take it. I 55 by the way and never had this problem before.

[slats1056]

gnatcatcher & hopeful  I upped My h2o intake to 4-5 qts. & added some Gatorade as well . Hate the sugars & stuff in Gatorade. Since adding Gatorade & some pedialyte the cramps have subsided. Also, headache severity have diminished. However can't get to far from bathroom for very long. Peeing like crazy.
  Anyone want to chime in on so much water intake & electrolyte levels (i.e.cramps)?
Need to do some research on electrolyte levels in the body.
 Hopeful  I hope You are feeling well. For the first time in weeks I'm having an exceptionally good day. wish everyone the same.

[seekir]

Posted by longtrip:

...wide awake even after a long hard day at work

LT, I'm wondering what sort of work? Does it involve much movement/physical exertion? It's a nightmare to be exhausted and restless.

I'm also wondering if some of you guys who don't have signatures with basic information about yourselves would consider having a look at posts from those who've shared histories and personal information in theirs. It's helpful for readers who can then better understand member's status. We might collaborate and share advice or make inquiries more effectively if we can easily refer to essentials below your posts. I know some of you ladies prefer secrecy about your ages. Not to pry, but maybe you might suspend that practice here in the interests of health and science?

[slats1056]

longtrip excellent news, Happy for You.
seekir planning on signature update Monday when 4 week lab results come in, if it will ever get here.just started week 5 of 12 of Harvoni.
  Had an excellent day today. Hope I get another nites sleep like last nite. Busy all day at work, didn't seem to crash until around quitting time. Boy, I haven't felt this good for as long as I can remember!