Author Topic: Started Harvoni 3/12/15 (Read 162601 times)

Sailor · « **Reply #100 on:** April 20, 2015, 12:58:58 pm »

Day 38 - No problems.

Getting well · « **Reply #101 on:** April 20, 2015, 05:40:52 pm »

Day 34 for me and I am a little better than yesterday.

Seems like I read somewhere on this forum that some folks had increased side effects at 5 to 7 weeks. Perhaps that is what is going on. I've even had right, upper quadrant pain today and that is something I've never experienced with the HCV.

But, things are just about back on track today. I was able to eat today.

Sailor · « **Reply #102 on:** April 21, 2015, 12:55:42 pm »

Day 39 - Another good day.

Espo2 · « **Reply #103 on:** April 21, 2015, 10:22:22 pm »

Hey guys, think You responded when I started Mar 17.1b, 4.5mil vl. Sailor, you really coasted thru this med, good for you. Hope surgery goes well. But I too like Getting Well, have joint pain.becoming a big annoyance. At Week 4, undetectable. Blood is good, Doc doesn't give read out or see me, Strange? Itchy dry skin, allergy like. Gained 3 lbs. i I am a little emotional at times, and intermittent fatigue. Want to be happy with results but can't wait to finish this, seems like everything is amplified, old injuries woke up. This is week 6, hoping it gets better.

Getting well · « **Reply #104 on:** April 21, 2015, 10:47:23 pm »

Evening, Espo and Sailor.

I start week six tomorrow.

Still haven't heard about my blood draw on Thursday.

I am a lot better but still have some manageable sides.

I've been experiencing shortness of breath, too. Hope it subsides.

Think I read that some others had that, too.

We are almost there.

Getting well · « **Reply #105 on:** April 21, 2015, 10:51:52 pm »

By the way, Espo, I've been seeing a rheumatologist for years. After beginning treatment, the joint pain almost went completely away. It was very disappointing when it came back last week. There has been no pill nor potion that could bring me relief for a very long time. But, I am happy to report that the joint pain is much better this week.

Getting well · « **Reply #106 on:** April 22, 2015, 10:04:15 am »

Put on your dancin' shoes.

UNDETCTED!!!!!!!!!!!!

Sailor · « **Reply #107 on:** April 22, 2015, 12:37:58 pm »

Hey Getting well! Congratulations! I know you are happy today!

Day - 40 Still doing fine. We are getting closer to the end.

There is no question I am sleeping better than I have for years. I hope it doesn't stop when the treatment stops.

Getting well · « **Reply #108 on:** April 22, 2015, 03:14:18 pm »

Yep, I'm sleeping better, too.

I'm still having joint aches, but they seem to come later in the day. Still having shortness of breath.

I say all this so other people that may read here won't think they are crazy if the get some side effects.

This forum has been a wonderful resource for me and although I don't comment a lot I still read everything here and the posters have certainly been an encouragement to me.

Sailor · « **Reply #109 on:** April 23, 2015, 12:17:00 pm »

Day 41- Another possible side effect is that I seem to have more of an appetite. I notice it and my wife has remarked about it.

Another good day.

I'm getting close to the end of the 8 weeks. I need to check with my Dr. to see if I need any more blood tests before I finish. There is a possibility that I could have 4 more weeks. I think it is unlikely since I was undetected 1/2 way through.

It's hard to believe, that for me, it could be this easy.

Sailor · « **Reply #110 on:** April 24, 2015, 03:58:55 pm »

Day 42 - Another easy day.

I've been working at full tilt and my back pain is improving.

Getting well · « **Reply #111 on:** April 24, 2015, 04:44:50 pm »

Congtats, Sailor, I know you're going to make it.

I'm feeling good, better than I've felt in years. Still have the shortness of breath, very similar to when I was on lisinopril for high blood pressure, but I only have two and a half weeks to go on Harvoni.

My appetite increased, too, but I think it's because I actually feel like eating. Had Chinese today with my daughter. How nice to be able to go out again.

Sailor · « **Reply #112 on:** April 25, 2015, 03:05:28 pm »

Day 43 - A fine spring day with no discernable side effects.

Getting well, we're getting close to the end.

Then we have to wait for 6 months? to see check for relapse. The odds are good for success.

Getting well · « **Reply #113 on:** April 25, 2015, 03:09:35 pm »

Same for me. Still itching and short of breath but I really think this will all go away in a few weeks.

I have 17 pills to go and I feel like a new person.

Espo2 · « **Reply #114 on:** April 26, 2015, 09:45:50 am »

Getting well: I too am short of breath too sometimes, the joint pain is hard to accept. We are smaller than guys, wonder if the dose should be smaller for us. I did cut pill in half last nite, thinking toxic?was so unsteady yesterday and light headed. Pressure in chest. I took a lasix as I felt water retention, had cardiomyopathy last year from a cold, ended up w a pacemaker. Think hep c was killing my immune system. Shortness of breath was my first indication of my heart being overloaded. Get your heart n lungs checked, k? Fluid retention can tax heart and lungs. They don't advertise all complications, very new and making a crazy amount of money with this drug.I am a nurse, know that side effects can hurt us. Protect yourself☺️I'm itchy too

Getting well · « **Reply #115 on:** April 26, 2015, 10:49:18 am »

Espo, hang in there girl. This is a very short lasting treatment. I don't have all the previous heart problems you've had so I'll just deal with the shortness of breath as I have lately, which is to lie down or sit with my feet up and rest. I've only got 17 days.

I don't know if halving the pill is a good idea, seek your doctor's opinion first.

I have been treated by a rheumatologist for years, so I certainly understand your pain. For intense joint pain, one thing I do is keep the house as cool as I can and then use an electric blanket to warm my joints or a hot soak in the tub. It seems simple but it will help the joint pain. I am hoping that when I get the HCV cured it will cure the rheumatoid, if it is the HCV causing it. My rheumatologist tells me it will be a few months after treatment before he will do blood tests to ascertain this.

I am not light headed or unsteady. You may need to contact your doctor with those symptoms since it could be a problem with your heart and pacemaker instead of the medication.

I come from the opinion that everything is toxic to the body and that you need the right amount vs what side effects you can accept.

Makena · « **Reply #116 on:** April 26, 2015, 02:20:03 pm »

Hello, Makena here- I am also on 8 weeks. Day 8 of TX., also noticing immediate elevated energy. never had itching issues, or so far. Grateful about the potassium info. I have been taking BP meds long time. I am sure I have had this for many years. Was diagnosed in 2006 when I was in a college math class, will never forget my feeling of hopelessness, and shock. I had a bout with flu like symptoms that were not going away, and knew this was very abnormal, also at BW regular type, I was told my liver enzymes were slightly raised but nothing to worry about??? Well I am blessed that my biopsy was stage 1 fibrosis. Now I am 6 mil copies of virus, ultrasound no leisons, all looks good. Working and raising daughter. So far no sever sides. I will be monitoring posts, work 5 days a week so hope to get any messages or questions. I took Nutrition in college so if anyone has questions please feel free. I did not pursue the position as I didn't have the energy to go 80 hour weeks of work. My girl has autism so that is a job as well. She is my greatest and best reason for SVR! Blessings and Positive energy for all of us. Makena

Sailor · « **Reply #117 on:** April 27, 2015, 12:40:17 am »

Day 44 - Another day with no discernable side effects.

Lynn K · « **Reply #118 on:** April 27, 2015, 12:49:51 am »

Harvoni is not to be cut nor taken in half dose. The pill has a coating to control the timed release and by cutting the pill you have exposed the inside of the pill.

Please do not experiment with your medication if you have questions ask your doctor.

The drugs at the current dosing were tested on different types of people. body size is not a factor with the medicine.

Getting well · « **Reply #119 on:** April 27, 2015, 06:09:00 pm »

Good luck to you Lynn. I see you are nearing the end of treatment and I wish you the very best.

Makena, years ago before I ever knew I had the virus I had an episode of flu like symptoms and ankle swelling. That spell did not happen at the time I could have possibly been infected but I was sick for a couple of weeks. I now think it was the HCV. I had camped out (primitive camping) with my horses and since I've always wondered if that had something to do with suddenly being symptomatic.

I have 15 more pills to take and still only minimal side effects.

Sailor · « **Reply #120 on:** April 27, 2015, 11:28:32 pm »

Day 45 - Another easy day.

I took my father to the Dr. today who is my Dr. as well. I asked him about the end of my treatment and he told me there was no necessity for another 4 weeks of Harvoni. I have 11 days to go. Then I received a call from the insurance company nurse and she asked me to get a blood test the day after I am done with Harvoni. So I will do that.

I started this blog to record my experience with Harvoni for the benefit of folks who are considering treatment. I've been careful to try and separate out anything that I have experienced prior to taking Harvoni. For instance I have always experienced several head aches a year, a migraine from time to time. I have not been sleeping well for several years. I suffer from heart burn sometimes. I don't believe the continuation of these maladies while taking Harvoni are valid side effects.

I have suffered very painful experience with my back which I know was the result of lifting something I shouldn't have lifted. That happened early in my Harvoni treatment. I couldn't sleep for about two/three weeks as I could not stay in one position for more than 20 minutes. I still experience pain especially while in bed. I don't attribute any of that to Harvoni.

Maybe I have an increased appetite and I am sleeping better. Perhaps my blood pressure was elevated because of Harvoni. It is back down and the Dr. attributes it to the pain from my back injury, who knows.

The insurance company nurse told me that none of the folks they provided Harvoni to, who have finished treatment have relapsed. I should have asked how many folks. She seemed very confident of a success. I discussed that it would not be wise to forgo another 4 weeks, having invested in about $60,000 in 8 weeks treatment unless the confidence rate of success was high.

It is amazing to me that it has required so little effort on my part to be able to have a high probability of a successful elimination of the Hep C disease in my body. I contemplated the earlier drugs. Had I not had reason to expect that a drug such as Harvoni would become available, I would have tried one of them. The prospect of that was daunting at best. This is a medical miracle.

I was afraid to take Harvoni and I hope my experience will help others have less fear.

To those who have been sharing their experiences on this page, I appreciate your input and find it comforting. I think that you are providing a valuable service to prospective candidates for treatment.

Good luck everyone. For those of us who are getting to the end of treatment, lets hope for long term success!

Sailor · « **Reply #121 on:** April 28, 2015, 01:09:01 pm »

Day 46- This was another day with no discernable side effects.

Getting well · « **Reply #122 on:** April 28, 2015, 04:07:13 pm »

I have 14 more pills.

I awoke at 5am with vim and vigor like I used to. I hope I feel like this forever.

Sailor · « **Reply #123 on:** April 28, 2015, 05:18:09 pm »

There is no question I am sleeping better. Last night I woke up 3 times and fell right back to sleep.

I am putting in long work days. Worked 6-1/2 days last week. I'm tired of the project and can't wait to finish. Harvoni is not slowing me down.

Espo2 · « **Reply #124 on:** April 28, 2015, 05:33:35 pm »

Lynne k, Ty, called Doc, had me skip dose for a day. B/p is up. I'm sure meds go thru trials but we all have different issues. Glad some come thru easily. End result matters, how ever we get there. Good luck Sailor

Getting well · « **Reply #125 on:** April 29, 2015, 06:58:01 pm »

I started week 7 today and have only 13 pills to go. Yay!

I am still short of breath, headache-y and elevated blood pressure but, boy-o-boy do I feel better.

Had my children and their spouses over for Mom's home cooking and being able to do that hasn't been possible in several years. There really is life after HCV.

Best to all.

Sailor · « **Reply #126 on:** April 29, 2015, 08:24:15 pm »

Day 47 - Still feeling fine. I have 9 pills left. I am really interested to see if there are changes after the end of the Harvoni as I am for everyone else. Getting well, I'm really glad to hear you feel so much better. You must have really been feeling the effects of the Hep C. (Like I said earlier, I believe I have had Hep C for about 37 years, so I know no different.)

Espo 2, I'm glad you got things worked out with the Dr. The insurance company nurse was telling me they have a concern with folks who start taking the Harvoni erratically or stop after finding they are undetected. My concern is the opposite. I worry that if I don't get three months worth that I might be increasing the odds of relapsing. However, apparently, for folks with my stats, the protocol calls for 8 weeks. Time will tell. They told me if I relapse, I will have to wait for a new medicine. Don't get me wrong - from what I read we have 95%+ chance of full recovery. Those are pretty good odds!

kauri · « **Reply #127 on:** April 29, 2015, 08:46:44 pm »

Hey,

Sailor, you only have about 3 weeks! How good to know. I am half way through a 12 week course.

What a relief! Even though I had such a high viral count, I was UNDETECTED at 4 weeks...just found out! So I'm half way though the treatment. I'm doing fine, not even thinking about it anymore. Better remember to take the pill, though

My blood pressure is still a bit jumpy, but as long as I am careful to take it easy, I'm fine. In fact, I am doing better and better!

Best of luck to everyone, Yeehah!

Sailor · « **Reply #128 on:** April 30, 2015, 08:21:09 pm »

Day 48 - No side effects.

Kauri - This is great news! This drug seems to be the trick.

Yesterday I had to take my father to the emergency room and I talked the nurse into checking my blood pressure and it was 120/77 which is normal for me.

It difficult to remember to take the medicine. My worst was three hours late. My father takes about 9 medicines a day, but he is more organized with pill boxes. Don't let down your guard.

Getting well · « **Reply #129 on:** May 01, 2015, 01:54:30 pm »

11 more pills to take. I'm starting to go from feeling good to feeling great.

Good luck all!

catniss · « **Reply #130 on:** May 01, 2015, 03:57:26 pm »

CURED! Good luck to everyone! Stay positive. Harvoni is a miracle!

Lynn K · « **Reply #131 on:** May 01, 2015, 10:22:47 pm »

Awesome news!!!! Congrats Catniss another dragon down!

Sailor · « **Reply #132 on:** May 02, 2015, 01:45:01 am »

Day 49 - same old story- No Problems

catniss -- great news! I assume cured means un-detected 60 days after the end of your treatment? That's the real deal.

I've got 6 more pills in the bottle, then it's a waiting game.

Espo2 · « **Reply #133 on:** May 02, 2015, 10:07:29 am »

Hi everyone, I'm on week 7 Harvoni, undetected vl. I felt bloated and weight was up. B/p up.( I had cardiomyopathy 2 years ago from a cold. Ended up with pacemaker.) I took a lasix w potassium last night, dropped 6 lbs. Some of you w blusters, maybe loaded w water? Also become anxious, hip and pelvic pain was bad. Doc had me skip pill. I think for me, every day regimen is too much. Don't want to give up but also don't want more heart problems. Wonder if I need to skip when I see weight go up. Time to see my Internist, think there are a lot more side effects for some of us.

kauri · « **Reply #134 on:** May 02, 2015, 12:10:45 pm »

Hi Folks,

Looking back I think I probably cleared the virus in the first couple of weeks and after that had no more headaches. Now, I just pop my pill, and apart from taking it a little easy, don't think anymore about it.

Sailor, I don't know what I was smoking saying you had 3 weeks! Is it this coming Thursday? Wow! So since you started this thread, thank you for creating this support forum. It has helped me to have people to check in with.
All the best GETTING WELL, I hope you continue to find better and better things to bring you some comfort and relief. My favorites are weed, cannabis, bud, and marijuana. After that, a poor second come heating pads, ice packs, and various essential oils and ginger tea. I hope you find what works for you.
Wish all medicine delivered results like this!

Sailor · « **Reply #135 on:** May 03, 2015, 02:10:36 pm »

Day 50 - I'm assuming that the five pills I have left in the bottle are going to treat me the same as the others, meaning it is becoming anticlimactic.

For those who may be counting, the day report is for the pill I took the evening before yesterday. So I took one last night which I haven't reported on.

kauri, when I look back I agree that the virus likely clears quickly. Although I have never felt poorly, I have a sense that I was more affected by the medicine early on.

Espo2, I'm sorry you are having a rough time. I'm sure some find the Harvoni treatment more difficult than I. I am fortunate not to have other medical issues to contend with while taking Harvoni. I can tell you that my back problem was extremely difficult to contend with. I couldn't lie down or sit up in apposition for more than 20 minutes. I slept on my hands and knees for 2 hours! That was the only position where I didn't experience excruciating pain after being in it for more than 20 minutes. My back is about 80% better.

So my back problem superseded my Harvoini treatment experience.

I assume you are on a three month program. Hopefully soon you will see the light at the end of the tunnel.

Getting well · « **Reply #136 on:** May 04, 2015, 10:28:26 am »

8 more to go and I'm still feeling fine.

sr110435 · « **Reply #137 on:** May 04, 2015, 11:44:19 am »

Well all, i am on week 4 of harvoni and ribaviron i got my results from the 1 st test and it was great ast: 20 alt: 22 and it was like 66 and 70 when i started !!! yahha!! my blood pressure has also been elevated, before i started it stayed around 130/80 and when i went to dr. it was 172/105 i have been taken it at home and it has been about 150/99 - 155/103. everything is looking great as far as my blood test but i am on treatment for 24 weeks ( 6 months ) . i have failed treatment 3 times with interferon and ribo and the last time a new med was added but hep mutated and they stopped treatment. i pray that doesn't happen again. by the way i think i got the hep in Vietnam in 1972. it was found in 1995 after i went to give blood. my wife has been a real trooper without her help i don't know if this would be possible. the headaches and i seem to have a couple of good days then a bad day ( no energy )feel drug out . but compared to what i went through with the other treatments the is a piece of cake i.e. i think its because the ribo.

Keep plugging along and it will get better !!

Sailor · « **Reply #138 on:** May 04, 2015, 03:33:18 pm »

Day 51 - Happy to be alive. No side effects. 5 pills to go.

Getting well, I'm going to beat you to the finish line!

sr110435, did you get a viral load count when you got the blood test? I wish you the best of luck. It's got to be a lot tougher when you have tried before.

kauri · « **Reply #139 on:** May 04, 2015, 08:18:45 pm »

Hi sr110436

Let's hope this is the magic to send this mutating beast packing for you. Thank you for serving and sorry it cost you this. I like your attitude.

Getting well · « **Reply #140 on:** May 05, 2015, 03:16:17 pm »

I start a new toothbrush and new week tomorrow. My last week. As I take mine early mornings, I have 7 pills left in the bottle.

Good luck to all.

Sailor, I suppose you should scoot us on over to the post threads. Save me a seat.

I'm anxious to see what it feels like off treatment.

Sailor · « **Reply #141 on:** May 05, 2015, 04:32:29 pm »

Day 52 -3 pills in the bottle! The sun is shining and I feel great. No after effects and my back has improved significantly.

Getting well. I don't know much about blogs so I'm not sure what you mean about scooting over to the post threads.

I, too, am real interested to see if I notice anything after ending the medication. The insurance co. told me to get a load count test just at the end of treatment and then 3 and 6 months. Those are huge milestones. I'll continue to comment about how if feels after the medication ends and on my test results.

I hope this thread continues as my purpose when I began this was to provide real life experiences for prospective treatment candidates. I really didn't know what to expect before I took the medicine. I guess I'll make some comments about the overall experience after I see what its' like after finishing the medicine.

I change my razor every week or so and I should change my toothbrush now. I only changed it once so far.

Sailor · « **Reply #142 on:** May 06, 2015, 01:32:52 pm »

Day 53 - Another easy day.

Getting well · « **Reply #143 on:** May 06, 2015, 09:56:56 pm »

Sailor, please do continue to comment here, I follow it everyday and am interested to read how, if any, things change when you have completed treatment, as I am just days away from you.

What I referred to in the previous post is that there is another thread on this forum that someone requested that we post our after treatment statistics.

I saw my doctor last week and will go back in August for the twelve week blood draw and follow up. She said she would order other labs for the 8 week end of treatment if I wanted but I declined. This has been so expensive that I really didn't want it to cost more in expensive tests than necessary. Although my insurance has paid for everything so far, in the scope of things, everyone ends up paying more due to unnecessary expenses.

I've done so well I even felt guilty for the appointment last week thinking someone else could be using that time slot.

Sailor · « **Reply #144 on:** May 08, 2015, 02:59:36 am »

Day 54 - Another easy day.

Getting well. I just wrote a long reply and lost it. It went something like this:

When I go to see the Dr., he looks up on his computer what I should do next regarding blood tests. I wish I could access his web site. He says I should get a viral load count at 3 and 6 months after completion of treatment. The insurance company nurse called me the other day and told me I should get a load count right when I finish the medicine.

I am responsible for the fact that I have Hep C. I mentioned to my Dr. about the my concerns about the cost. He knows how I contacted Hep C. He snorted and replied, "I could blow through $60,000 in a week if you have serious liver problems".

I am finishing up a 8 week program at a cost of $60,000. I spoke to the Insurance company nurse about an additional 4 weeks and they don't want to do it. They must have a lot of confidence in their decision. It would not make sense to forgo another $30,000 of treatment, if they didn't believe 8 weeks was enough. If I relapse, they said I would have to wait for a new drug to be developed and start all over again. I wonder if they are really paying $30,000 per month as I have read that lower prices have been negotiated.

I am 1b with a low load and F2, which calls for 8 weeks.

The ethical question of society paying for my self inflicted disease is a tough one. However, people smoke, drink, do drugs, eat too much, injest too much sugar, run too much, get rescued on mountains, etc.

I have sailed around the world to many remote places. My conclusion is that the affluence of American life is absolutely astounding. We are like the thin film of oil floating atop the sea of humanity. I have a neighbor who has spent $20,000 on his dog's health care! Someday I may be rescued at sea. How do you know where you fit in ethically in such a society.

I work 6/7 days a week when I'm not sailing. I would like to think that the benefits to society because of my endeavors outweigh the detriments to society resulting from my existence. It's all subjective.

Getting back to the blood tests and their cost, I think I'll call the insurance company nurse and ask why I should get so many tests after finishing treatment. Perhaps, it I came back detected, they might put me back on for another month. Who knows.

Sailor · « **Reply #145 on:** May 08, 2015, 06:14:51 pm »

Day 55 - No side effects.

I took my last pill last night. I will report on that tomorrow. I guess the effects (if any)start wearing off this evening. It's is going to be amazing if the Hep C and the horror of having it are gone for good! I'll know in 6 months.

Getting well · « **Reply #146 on:** May 08, 2015, 06:44:31 pm »

Congratulations!!!! I was getting ready to post that I thought you would be done with the treatment when I saw you had posted. I have 4 pills left in the bottle, I'm right behind you and can't wait for you to let us know if you notice a difference.

Certainly I have received more from this world than I brought with me. I live in rural KY where there is a lot of poverty. There is only one GI in town (out of 2) who is treating HPV and at the present time is not accepting new patients. The hospital is not much more than a first aid station and dictates how many of what type patients the doctor can accept. Poor people cannot afford to make out of town trips for their health care so, I suppose, that would explain my wanting to not take unnecessary time or tests.

I feel absolutely no guilt for my treatment as I have always given back to society as best as I knew how. I just have much sympathy for those who have so little.

On another note, please let us know your progress.

Sailor · « **Reply #147 on:** May 09, 2015, 12:33:27 pm »

Day 56 - No problems. I'm finished!

I've been worrying about my liver for 30 years when I was denied a life insurance policy. It wasn't until about 10 years when my Dr. has a suspicion and ordered a Hep C test. Then the liver biopsy. Imagine that I can close this chapter. I'll know in 6 months.

For me the side effects of Harvoni we at most minimal.

kauri · « **Reply #148 on:** May 09, 2015, 04:03:38 pm »

Hi,

Sailor and Getting Well are finishing up their courses and I just got my third and last bottle for the 12 week course.
Discovered when I got the printed test results from the lab that my doctor had told me I was UNDETECTED, when in reality I was DETECTED under 15 per ml. I'm just getting to know this doctor, and I think he likes to play with his power a little. It felt good for him to tell me that I was undetected, even though I wasn't. I spose he thought it harmless, but it leaves a bit of an icky feeling and a little mistrust. I will let him know that I prefer precise detail, even when fudging is well-intended.

Sailor, I read that at least some, if not all, of the insurance had struck a deal with Gilead at 45% the asking price. They all made deals of some kind.
it pains me to hear you wonder if you really deserve proper health care. .
Your doctor is right, a penny saved now could be a foolish number of dollars down the line.
You are entitled to robust care, your role in your health problem is irrelevant.Are we going to punish you by refusing to help you get well? Imagine saying to someone, because you made that mistake, we don't want you to be able to get well, we want you to stay sick? If you think about it, we all want you to get well, it's in all of our best interests, even if we're being selfish.

I was interested to hear about your sailing. I come from a land of sailors...N.Z. Everyone in my middle school sailed little yachts. My most hair-raising time was sailing in Sydney Harbor, where the tip was: "If you capsize, jump into the sheets to avoid the sharks".

Sailor · « **Reply #149 on:** May 10, 2015, 03:30:01 am »

kauri - I'll say more about sailing some time.

I am going to ask for a copy of my report to see exactly what it says. I vaguely recall reading something about under 15, and I don't recall the details. I have been assuming that when I was told I was undetected, that I was at 0. I would be extremely upset if I felt a Dr. was intentionally giving me misleading information.

Here is some useful info below: In a nutshell a guess you just have to assume Harvoni works and that somehow the medical establishment knows it does. I don't think we as patients get the full picture very often..

When I saw a orthopedic specialist about back surgery, I left feeling that I had been given very good advice. A few days later I wished I could ask him 10 more questions. My back is getting better just as he predicted. I still think I received good advice.

Excerpts:

To everyone except physicians who treat hepatitis and fastidious researchers, the range of tests that someone with the Hepatitis C virus (HCV) endures can be dizzying. Unless you are lucky enough to have a hepatologist sit down and explain the differences and implications of each blood draw, it is easy to be misled by the barrage of lab test results. Especially important for individuals who are currently enrolled in or who have finished HCV antiviral therapy, understanding viral load tests can bring clarification to an otherwise confusing lab result.

Hepatitis C RNA tests are tools clinicians use to confirm a diagnosis and guide treatment. The challenge in discerning between the kinds of HCV tests likely lies in the similar sounding words to describe the tests: qualitative and quantitative. Even the most seasoned healthcare practitioners frequently flub these categories. Below you will find a brief description of the two HCV RNA (the genetic material for Hepatitis C) tests and a helpful mnemonic technique to differentiate between the two:
•Qualitative Test – This kind of test detects the presence or absence of HCV RNA. It is reported as either detected (positive) or not detected (negative). The qualitative test is useful to confirm an active HCV infection. The L in qualitative can be equated to a label – as in it is used to label someone as having or not having the virus.
•Quantitative Test – The quantitative test measures the actual number of copies of HCV RNA in the blood. Commonly referred to as the viral load, a quantitative test is typically used to monitor how a person is responding to HCV treatment. The N in quantitative can be equated to a number – as in it is used to report the number of HCV viral particles present.

More About Qualitative Testing

To report whether or not HCV is present in the blood, the qualitative HCV RNA tests use either a process called polymerase chain reaction (PCR) or a process called transcription-mediated amplification (TMA). If such a test is positive, or detected, then chronic Hepatitis C infection is confirmed. Although it does not compute a number, the qualitative test is more accurate than the quantitative test because it can detect very low levels of the virus.

More About Quantitative Testing

Quantitative tests that measure the actual level of Hepatitis C virus in the blood may use the processes of PCR, TMA or signal amplification (branched DNA). These viral load tests compute the number of HCV RNA particles present, and are expressed in either international units per liter (IU/L) or copies per milliliter (mL). The quantitative HCV RNA test is used to monitor individuals who undergo antiviral treatment – prior to beginning therapy, during therapy and upon its completion.

Additional Viral Load Test Facts

The following seven facts about Hepatitis C viral load tests help deepen our understanding of the testing process.
1.If someone has a positive qualitative test but a quantitative test showing no detectable virus, then that person has a very low level of the virus in his or her blood.
2.If someone has a negative qualitative test following antiviral treatment, they are clear of the Hepatitis C virus.
3.In order to obtain a sustained viral response (considered a successful conclusion to HCV treatment), a qualitative test should be negative following the completion of treatment and then again six months later. Most physicians will use a qualitative test (as opposed to a quantitative test) to confirm a sustained viral response.
4.Viral load as measured by a quantitative test does not correlate with the severity of Hepatitis C.
5.The viral load measurement does not correlate with the severity of liver disease. Only a liver biopsy (or equivalent method) can determine the health of the liver.
6.Because HCV viral load will normally fluctuate, repeated viral load tests are only indicated for those on or considering antiviral treatment.
7.If a quantitative HCV RNA result is reported as <615 IU/L, then the test is unable to measure any of the virus. Thus, such a result should be followed by a qualitative test.

Upon reviewing the differences between quantitative and qualitative Hepatitis C tests, there will be a little less mystery in deciphering lab results. Although HCV RNA quantitative tests are mostly used to gauge how someone progresses with antiviral therapy, the qualitative test is the only way to know for sure if the Hepatitis C virus is still taking up residence in your body.

What Are the Different Ways of Measuring HCV Viral Load?

Dr. Pearlman: RNA is the genetic material all these tests measure. Most experts measure it by a technique called RNA polymerase chain reaction or PCR. There's also a technique called branched chain DNA, and a newer technique called transcription mediated amplification or TMA. These are just different ways of measuring HCV RNA. TMA probably gets down to detecting the fewest number of copies, but most labs use PCR.

HCV Viral Load Used to Be Measured in Number of Copies. Now They Use International Units. Why?

Dr. Pearlman: Different laboratories don't use the same standard for counting copies of HCV RNA. So we're now moving to an international standard.

Dr. Anania: You can still get a copy number. But using international units (IU) is a way to uniformly report data throughout the world. Many lab tests are reported in this way. It standardizes test results between different labs."

Sailor · « **Reply #150 on:** May 11, 2015, 02:18:55 am »

Day 57 - I don't notice any difference one day after finishing Harvoni. I don't notice any difference from before I started Harvoni. I wouldn't have known I had Hep C if my Dr. hadn't figured it out. Now I have the hope that I won't suffer any negative impact from Hep C in the future. It is possible my liver will repair itself.

Sailor · « **Reply #151 on:** May 12, 2015, 11:40:51 am »

Day 60 I don't notice any difference since I finished the Harvoni.

Getting well · « **Reply #152 on:** May 12, 2015, 01:58:50 pm »

I took my last pill this morning and am looking forward to not taking it in the morning.

The past week or two I have had a tiredness that I didn't have before but still not the bone aching fatigue I experienced before treatment.

I suppose the 12 week time clock starts tomorrow.

Sailor, did you have any physical symptoms of the virus before treatment?

If you don't have cirrhosis, I think your liver will regenerate new, healthy cells. How quickly would depend on several factors including medications, diet, weight, genetics and who knows what else, is my opinion.

Debula · « **Reply #153 on:** May 12, 2015, 02:17:39 pm »

Congratulations to Sailor and Getting Well for being at EOT!

Good luck to you all and hoping for everlasting SVR!

kauri · « **Reply #154 on:** May 13, 2015, 12:09:27 pm »

Hi Everyone,

Thanks Sailor for the support over my doctor's ego and for the in-depth explanation of measuring quantitative and qualitative viral loads.
It's true that there is an important difference between the load being too small to count, and it being gone altogether. A leading hepatitis specialist at Cedars Sinai told me that the Hep C virus can be absent in the blood and still be hanging out in the organs. There is no way of truly ruling out that possibility, other than looking for it in the blood for a sustained period of time, and then hoping that means its really gone.
And, on the subject of virus count, I had 20 million IUs per mL a couple of years ago and only 10 million before I started Harvoni, but had no treatment at all. So the quantity in my blood halved, during a time I had no treatment. Suggests that it fluctuates significantly (halved) independent of treatment.
Anyway, I just take the med and am optimistic.
Lots of luck to everyone.

sr110435 · « **Reply #155 on:** May 13, 2015, 09:56:54 pm »

WOW, just got my results from being on harvoni and rib for 2 weeks and my viral load when i started was 4 million and now it is less than 100 !!! wow praise the lord !!
keep plugging along and it will get better

Sailor · « **Reply #156 on:** May 14, 2015, 02:05:14 am »

I'm starting to lose track of when I took my last pill, I think last Thursday. I don't know if I ever felt any effects of having Hep C. I think I have had it for over 30 years, so I don't recall any difference. If I felt any effects, it wasn't progressive. I don't feel much different now other than a sense of relief. It is likely that the virus is gone. I never experience any significant side effects from the Harvoni. So at a minimum in my opinion the virus has been beaten down and my liver has been given a break.

I have been fortunate not to suffer any other significant lasting health issues. My back is greatly improved.

Getting well, I'm interested to hear if you notice any changes now that you have completed the treatment. I am lucky because I am 1b and F2 and had a relatively low viral load.

Thanks a lot Debula for your kind words.

sr110435, congratulations on you test. May you go to zero soon!

kauri, you are welcome. I am going to discuss the type of test with my Dr. when the 3 month one comes up. I hope that it is undetected and that it is safe to conclude that if it were in my organs that it would have appeared by then.

I base some optimism on the report to me by the AETNA nurse that they have yet to see a relapse. I don't know how much history they have as Harvoni is pretty new

All please remember that I started this blog to inform prospective candidates for treatment of my experience with side effects and post your experiences so they better know what to expect.

mtbkr1030 · « **Reply #157 on:** May 15, 2015, 11:13:32 pm »

I'm on day 2 and the only side effects so far was some diahrea today and my legs, heels are a little achy. That could be from my 4.5 mile run I did earlier. So far, so good.

I'll keep you posted. Good luck to everyone.

Tom

Sailor · « **Reply #158 on:** May 17, 2015, 02:23:47 am »

Its' been about a week since I finished the Harvoni. I feel about the same and about the same as I did before I started treatment.

mtbkr1030 - good luck. I hope it goes well for you. Please keep us up to date on your experience. Were you apprehensive before you started your treatment because of possible side effects?

Thanks,

Sailor

How is everyone else doing?

KimInTheForest · « **Reply #159 on:** May 17, 2015, 02:37:11 am »

I'm on Day 12 of 84 days (12 weeks) of Harvoni+Ribavirin (a clinical trial for geno 3 people). So far sides are very minor or short-lived, and life is basically normal. I get a nice energy boost from the Harvoni which lasts 4-5 hours.

Good luck to everyone!
kim

mtbkr1030 · « **Reply #160 on:** May 17, 2015, 06:31:58 pm »

Day 4 no real side affects.

Getting well · « **Reply #161 on:** May 18, 2015, 04:51:34 pm »

It's been almost a week since my last Harvoni and the itching has finally subsided.

Other than that, no big revelations. Still have some ear ringing, shortness of breath, and tiredness.

I think I'm feeling a little better every day.

mtbkr1030 · « **Reply #162 on:** May 18, 2015, 05:15:18 pm »

Day 5, a little tired but that's about it.

Sailor · « **Reply #163 on:** May 26, 2015, 02:20:25 am »

It has been about 2 weeks since I finished treatment. I don't notice any differences from when I was taking Harvoni. Mentally I've moved on and don't think about it as much. As I approach the three month test, I'm sure I will become more focused on it. Right now it is just nice to not have to worry about taking the pill each day.

I hope things are going well for all. I'm curious Getting well how you are doing and I assume mtbrk1030 that you aren't experiencing anything different. How about everyone else?

Getting well · « **Reply #164 on:** May 26, 2015, 08:32:19 pm »

Today marks two weeks since end of treatment for me.

I still have some shortness of breath and tinnitus but it seems to be getting a little better all the time. My blood pressure is about where it usually is.

I have more energy, but still have to pace myself.

I am much better than I was before I began treatment.

I still have some RA symptoms/aching joints but those days are fewer and farther between.

When I have my 12 week end of treatment blood test I think I will also have my Rheumatoid Factor checked to see if those numbers are lower.

Keeping my fingers crossed.

For anyone following this, the first month was great on Harvoni, the second month was some, mostly minor, side effects and now two weeks later they seem to be mostly gone.

Thanks for letting us know how you are doing, Sailor.

Wishing all the best to us all.

Sailor · « **Reply #165 on:** May 26, 2015, 11:02:39 pm »

I still have tinnitus, too.

Sailor · « **Reply #166 on:** June 09, 2015, 10:42:08 pm »

I think is fair to say that I am sleeping better. As a matter of fact I woke up this morning and decided to comment here about it. Then when my wife came downstairs, she said she thought I was sleeping better. Quite a coincidence.

Getting well · « **Reply #167 on:** June 10, 2015, 08:49:51 pm »

It is now 4 weeks since end of treatment. I am still on the mend. My blood pressure is now back to what it was, the tinnitus is still there but not as frequent. If I overdo it I get really tired the next day but I am still better than before I got treatment.

Sailor · « **Reply #168 on:** June 11, 2015, 02:43:39 am »

Good to hear you see improvement, Getting Well.

I've been living with Hep C for so long it was hard to think it could be any different. There is no question I'm sleeping better and that helps a lot. I'm working extremely hard, 7 days a week 12 hours a day. Sometimes I get irritable, but I don't think that has anything to do with Hep C or the (hopefully) lack of it. If my improved sleep continues after the project is over in about 2 months, then I can attribute it to the cure.

My diet is horrible, but somehow I manage not to be at the right weight. When the project is over, the exercise and hopefully improved diet begins.

Two months until the 1st test since completing the Harvoni treatment.

Good luck to you, Getting Well.

Sailor · « **Reply #169 on:** July 27, 2015, 12:27:36 am »

I'm going to try and schedule a viral load test for August 8th, just before I go on a 2 week trip. That will be close to 120 days since I took the last pill. In general I continue to sleep better. Lately, I haven't given much thought to the status of my HEP C infection as I've been waiting for the time to elapse for the 90 day test. Hopefully, it is gone.

I'm going to ask my Dr. to get me the best test possible. I think it is a good idea to prompt the Dr.

Sailor · « **Reply #170 on:** September 10, 2015, 02:42:26 am »

My 1st blood test since finishing treatment is this Friday.

KimInTheForest · « **Reply #171 on:** September 10, 2015, 11:37:29 am »

Quote from: Sailor on September 10, 2015, 02:42:26 am

My 1st blood test since finishing treatment is this Friday.

Good luck, Sailor! I am sure all will go well on your results.

kim

Sailor · « **Reply #172 on:** September 11, 2015, 02:54:19 am »

Thanks Kim In The Forest. I see your results were just fine. Congratulations. I should get the results next week.

Sailor · « **Reply #173 on:** September 18, 2015, 02:54:53 am »

Got my test results today after stopping Harvoni about 14 weeks ago - nothing detected. One more test to go and that should be the end of it.

Bree · « **Reply #174 on:** September 18, 2015, 03:03:17 am »

Good on ya Sailor!

Sailor · « **Reply #175 on:** January 21, 2016, 01:06:08 am »

I just got my 6 month blood draw today. I'll hear in a few days if I am still clear. I should have gotten it sooner, but I just got around to it.

Bree · « **Reply #176 on:** January 21, 2016, 03:32:22 am »

I'm sure it's all good!

Let us know...

Sailor · « **Reply #177 on:** June 16, 2016, 02:40:44 am »

I went sailing and didn't return until May so I got my results from the blood test in December just recently. It was earie wondering for 4 months about the results. Well they came back negative. I may be tempted to get another test in a year or so. I don't feel much different than before I started the treatment. The hep c has been with me for such a long time, it is hard to believe it is gone. I'll write my "kind of" final thought one of these days.

All I can say now is there was a lot of build up to the treatment and it really was a non event. I doubt I would have been aware of the medicine if I had been given it without my knowledge.

Bree · « **Reply #178 on:** June 16, 2016, 03:23:01 am »

Congrats Sailor! I would have gone crazy wondering about the test results... although we all have to wait anyway so what difference does it make, I suppose.

Living without HCV is a big event for me, even though it seems like it never existed now, except for the memories... more like nightmares of knowing I had it but I just went on anyway. I'm happy it's gone and it feels like it was supposed to be gone. I knew it's time was up. I even told the virus it had to go now.

I agree, the whole hassle about getting the meds was the biggest part. ... that and the hope of a living free of this stupid virus. I was a lucky one on every level... finally getting the meds and sailing through the treatment for the most part. I feel like I'm just living, the way it's supposed to be, without the extra baggage. Again, congrats!

Sailor · « **Reply #179 on:** November 11, 2016, 03:01:06 pm »

Thank you, Bree, for your comments and congratulations on your results. I received the results from another blood test about 30 days ago and all is good! I don't think it's coming back.

I'm a believer in Harvoni and I had an easy time with it.

Sailor · « **Reply #180 on:** September 03, 2017, 01:02:44 pm »

It has been a couple years since Harvoni treatment. I haven't had any problems and rarely think about HEP C anymore.

RoMo · « **Reply #181 on:** September 03, 2017, 04:01:42 pm »

Hi Sailor,
I'm happy to hear that. I was reading your tread on summer 2016 after I was found with hep.C. I manage to find in Mongolia (I'm from Romania) the Harvoni generic LEDVIR a lot cheaper.
After four weeks of treatment the virus was undetectable, till now it is also undetectable.
On October I will be six months after the treatment, I hope that will remain undetectable.
I'm also a sailor (offshore big vessels) and I was taking the treatment during the sailing without side effects.
Sorry for my English, I hope
Thank you for your helpful tread.

KimInTheForest · « **Reply #182 on:** September 09, 2017, 10:54:26 pm »

Quote from: RoMo on September 03, 2017, 04:01:42 pm

Hi Sailor,
I'm happy to hear that. I was reading your tread on summer 2016 after I was found with hep.C. I manage to find in Mongolia (I'm from Romania) the Harvoni generic LEDVIR a lot cheaper.
After four weeks of treatment the virus was undetectable, till now it is also undetectable.
On October I will be six months after the treatment, I hope that will remain undetectable.
I'm also a sailor (offshore big vessels) and I was taking the treatment during the sailing without side effects.
Sorry for my English, I hope
Thank you for your helpful tread.

Congratulations RoMo on your success with Harvoni and clearing the Hep C from your body!

kim

Sailor · « **Reply #183 on:** May 17, 2020, 02:07:20 am »

It's 5 years later and I have only thought about hep c a few times. All evidence is that I have been free of hep c for 5 years.

KimInTheForest · « **Reply #184 on:** May 17, 2020, 01:18:29 pm »

Quote from: Sailor on May 17, 2020, 02:07:20 am

It's 5 years later and I have only thought about hep c a few times. All evidence is that I have been free of hep c for 5 years.

That's awesome Sailor! Me too as far as I know. We both treated with Harvoni in 2015. Yay!

kim

Lynn K · « **Reply #185 on:** May 18, 2020, 02:42:10 am »

Hey congrats to you Sailor and Kim. I’m also hep c free since four weeks after starting treatment in Nov 2014. Had a couple of viral load tests long after finishing treatment. One was spring 2018 and still no viral load so I guess I’m also hep c free. Still have liver cirrhosis though but at least it seems to be stable.

Best to all

I fightis thetitis · « **Reply #186 on:** May 24, 2020, 04:49:32 am »

Awesome everybody!
Congrats!

I just past my 212th week EOT, thats 4 years+. and hep free,
Occasional left flank pain and prob still F4 but hanging in.
Ultra S next week.

Stay safe everyone.

Best always,

Greg

KimInTheForest · « **Reply #187 on:** October 22, 2020, 12:06:13 am »

Quote from: Lynn K on May 18, 2020, 02:42:10 am

Hey congrats to you Sailor and Kim. I’m also hep c free since four weeks after starting treatment in Nov 2014. Had a couple of viral load tests long after finishing treatment. One was spring 2018 and still no viral load so I guess I’m also hep c free. Still have liver cirrhosis though but at least it seems to be stable.

Best to all

That is awesome Lynn! You have gone through so much treatment-wise. So great that you are finally free of Hep C. I am seeing this message months late for some reason. oh well! Thanks for all you do in answering patient questions here all these many years!

kim

Lynn K · « **Reply #188 on:** October 22, 2020, 01:23:49 am »

Hi Kim long time no see I hope your doing great!

Me still hanging in there

KimInTheForest · « **Reply #189 on:** October 22, 2020, 03:42:09 am »

Quote from: Lynn K on October 22, 2020, 01:23:49 am

Hi Kim long time no see I hope your doing great!

Me still hanging in there

I'm doing pretty well these days! we are survivors!

kim

Lynn K · « **Reply #190 on:** October 22, 2020, 02:24:36 pm »

Quote from: KimInTheForest on October 22, 2020, 03:42:09 am

I'm doing pretty well these days! we are survivors!

kim

Amen Sista high five

Sailor · « **Reply #191 on:** February 28, 2021, 01:06:39 am »

Now it is 2/21 and I rarely think about hep c. It is a thing of the past.

I got my covid vaccine 2nd shot 3 weeks ago. Life moves from one drama to another.

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