Harvoni Side effects

[april]

I am on my 15th day of Harvoni, no side effects to speak of except for a mild occasional headache. But I have started to develop a mild rash on the right side of my body and around by my right ankle. Anyone else have a rash? It's no big deal, just curious.

[Trish1]

Hi April,

I am in week 4 of my Harvoni.  About two weeks ago I developed patches of little red bumps on both my outer thighs, a few of them itched but not too bad.  Most of them are gone now but I still have a few.  I have read other posts where people have developed the same little red bumps.

[april]

Thanks Trish, that describes my condition too. Not bothersome, but there.

[shipinthenight]

I found that it was best for me to take the pill early in the day rather than at night because it did cause sleep problems.

[KC]

Funny, I took mine at midnight and hardly had any side effects. Once or twice a week I had a little insomnia but usually slept well and had tons of energy during the day!

[Michael J]

I agree about the bikes.  As soon as I get over the Harvoni blues, I need to get my 74 BMW back on the road.  I like the therapist connection.

[Lynn K]

Kawasaki 750 Vulcan

Let's ride!

[dragonslayer]

Kawi Ninja 650    Anytime

[shipinthenight]

All those saying none is detected after treatment give hope but I've talked to some who say, "Don't speak too soon." Still, the more good reports I read, the better I feel about my own chances.

[redcat36]

Hello, this is my first post, and I am considering Harvoni treatment but have not started as yet...still gathering information.  I am 79 years old and have apparently had the virus since a blood transfusion in 1973.  I didn't know I had it until about 12 years ago.  I've had two biopsies that showed stage 2 liver damage, and three ultrasound scans that showed normal functioning.  My last blood tests in June of this year are as follows:
ALT = 37, AST - 38, Bilirubin - 1.1, and Viral Load = 734551.
Two weeks ago, I had a Fibro(sp)scan in my doctors office that returned stage 4 cirrhosis.  I was surprised and questioned the accuracy of the test and was assured that this new way of detection is very accurate.  I don't have any symptoms at all and wonder if it's worth it to get into treatment.
I have Kaiser Senior Advantage Insurance and they are estimating my costs will be around $3000, and they have alternative financial assistance resources available is I can qualify.
I have asked for another F Scan as I had not totally fasted prior to the last one, and that could have made a difference.  I am currently waiting for an appointment for the new scan.
Regards,
Larry

[BDK]

Hi Larry - I would say do the treatment with Harvoni for sure, given that you are stage 3 or possibly have cirrhosis.  While you may have compensated cirrhosis now with few if any symptoms, the complications of cirrhosis can creep up and become an emergency.  I just started taking Harvoni, and so far so good in terms of no side effects.  If you can afford the copay, I do not see a downside.  Wishing you all the best!  Barbara

[KimInTheForest]

Hi Larry. Welcome to the forums! I agree with Barbara - if you have an opportunity to take Harvoni, do so. You will need to determine if you are truly F4 (cirrhosis) because that will determine some aspects of your treatment. Also, what is your Genotype? 1?

If you are Geno 1 with cirrhosis, I believe you either need to take 24 weeks of Harvoni (instead of the usual 12), or take 12 weeks of Harvoni+Ribavirin. Otherwise, if you find out you aren't yet at cirrhosis and are just F3, then I believe you are looking at 12 weeks of Harvoni alone (if you are Geno 1).

I am just finishing up my 12 weeks of Harvoni+Ribavirin. Just 7 more days to go. Viral load became undetectable at Week 4 (which is typical). So I fully expect to be cured by this, and nearly all people who do the Harvoni are. Have not had any significant problems with side effects, other than low hemoglobin due to the ribavirin.

Re: your questions about the accuracy of Fibroscan - they are supposed to be accurate at F4 (cirrhosis). However, I would definitely want a second fibroscan done if mine came back F4 - and ideally at a different clinic with a different machine and different technician doing the test. I have found them to be quite variable.

Best of luck to you. And keep us posted!
kim

[Lynn K]

well having the F4 cirrhosis test result will likely make it easier to qualify for treatment as many insurances are denying people with less than F3.

The treatment for people never treated before with or without is 12 weeks but with a viral load less than 6 million they could consider only 8 weeks for you and as you have at least borderline cirrhosis I would not think 8 weeks would be a good idea.

Here is a link to the prescribing information sheet for Harvoni.
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Only those with cirrhosis who have failed a prior treatment are prescribed 24 weeks normally

Really what is the difference between almost cirrhosis and cirrhosis either way you need to be treated. And in both cases your liver is already very damaged.

Good luck
Lynn

[Gpwhls]

I'm new here....been on harvoni for 122 day mark....after 4 weeks the virus was undetectable......no side effects for first 2 months...but niw I feel like it's building in my system....headaches.....fatigue ....and terrible joint pain.im on the 24 week program.my doctor said every patient has cleared virus in 4 weeks.i really want to stop now.....I don't know what to do.... ......I got 1 1/2 bottles to go.any advice continue?ive come this far....

[Karen1124]

Gpwhls,

I say keep on going!! You have got nothing to lose but Hep C lol!
I say the longer the better! You can do this! Life is good! Karen

[2rivers]

The treatment for people never treated before with or without is 12 weeks but with a viral load less than 6 million they could consider only 8 weeks for you and as you have at least borderline cirrhosis I would not think 8 weeks would be a good idea.

Hi Lynn; I just took my last Harvoni today, now headed for my blood test. I was originally prescribed 12 weeks, but my doctor said that with my viral load (2 million) and F2 diagnosis, 8 weeks should be sufficient. I should add that insurance would only cover me for 8 weeks.

I was skeptical about the 8 weeks (as compared to 12) so I did some research. In a fairly recent study of over 200 patients, there was a 97% success rate (SVR) for patients with genotype 1B, which is what I have. Apparent adding 4 weeks of treatment only made a 1 to 2% difference. The results were not as good with genotype 1A on the 8-week treatment.

Anyway, too late now to change my mind. Here's hoping that 8 weeks will do the trick for me. I'll know in 6 months I guess. Thanks for all the advice and input you have provided on these forums.

[dragonslayer]

I'm new here....been on harvoni for 122 day mark....after 4 weeks the virus was undetectable......no side effects for first 2 months...but niw I feel like it's building in my system....headaches.....fatigue ....and terrible joint pain.im on the 24 week program.my doctor said every patient has cleared virus in 4 weeks.i really want to stop now.....I don't know what to do.... ......I got 1 1/2 bottles to go.any advice continue?ive come this far....

It helps if you list some of your case details, ie, starting viral load, degree of fibrosis/inflammation, treatment history, etc.. Also, read the forums here.. many of your questions have been asked and answered.... Best of luck to you.

Oh, incidentally, its far from true that every patient clears within 4 wks of beginning treatment.. Some of us dont even clear by the End Of Treatment, but then go on to clear by 12 wks post treatment! And unfortunately, some clear and then relapse... Its best not to take this disease for granted;  stick to the Gilead guidelines.

[GLCII]

Hi Gpwhls

You roughly 75% done. With only 46 pills to go, I say keep going too.

[Gpwhls]

Thanks...to answer some questions....I have geno type 1a ..stage 4 cirrhosis.....2 time no responder to old treatments......I'm not saying all people clear in 4 weeks...I'm just saying that's what my doctor told me...he said every patient he has treated so far showed no virus in 4 weeks?But I do wonder has anyone else expereanced joint pain?im the opposite of a hypochondriac it's really rough...ankle joint ,mostly shoulders...fingers???ill talk to my doc too...thank you all ...

[Katie]

Some who looked as if they cleared during treatment have relapsed.  Quite a few have reported joint pain.  One gal who was on for 24 week treatment stopped before completion, per doctor's orders, because of severe joint and muscle issues (she was close to EOT).

If you scroll way back are read, as Dragonslayer suggested, you will find a wide range of issues and complaints.  The treatment affects many people differently.

Hang in there and good luck to you!

Katie

[redcat36]

Thanks to all for your comments:  Barbara, Kim and Lynn.  I'll probably be taking the treatment soon as I have green lights all the way.  One more test to verify F4 and I'm ready.
Regards,
Larry (redcat36)

[Lynn K]

Hi Lynn; I just took my last Harvoni today, now headed for my blood test. I was originally prescribed 12 weeks, but my doctor said that with my viral load (2 million) and F2 diagnosis, 8 weeks should be sufficient. I should add that insurance would only cover me for 8 weeks.

I was skeptical about the 8 weeks (as compared to 12) so I did some research. In a fairly recent study of over 200 patients, there was a 97% success rate (SVR) for patients with genotype 1B, which is what I have. Apparent adding 4 weeks of treatment only made a 1 to 2% difference. The results were not as good with genotype 1A on the 8-week treatment.

Anyway, too late now to change my mind. Here's hoping that 8 weeks will do the trick for me. I'll know in 6 months I guess. Thanks for all the advice and input you have provided on these forums.

Hi

For you that should be just fine with only F2 fibrosis. The person I was replying to has F3 or on recent fibroscan F4 cirrhosis  so even though they have a low viral load and are treatment naive I would hope their doctor plans on the  12 week and not the 8 week as they are at least borderline cirrhosis if not early cirrhosis.

Really they are calling SVR 12 cured you should know at 12 weeks post 24 weeks is just to put the final fork in it and call it totally done. The stats say 12 weeks is 99.8% likely cure Congrats on finishing treatment and wishing you SVR forever!

Lynn

[AaronML]

Hey, I'm new. I started Harvoni a week ago. 3 days in I started to have muscle pain in my back neck and sometimes legs. Anyone else have these symptoms? Other than that very mild headaches and fatigue late in the afternoon. I contacted hep c sometime within the past year from a patient, luckily I went to have some routine labs and they found it. I'm a 1a with F2 and less than 1,000,000.

[S.Belle]

Not sure if this will help anybody, but I work also and have found that taking Harvoni AFTER work everyday puts my fatigue level at its peak around bedtime. I'm on Day 10 and with only very mild headaches. Aspirin a day helps. My two week blood test is next Tuesday and I'm on a 12 week program. My viral load is VERY low, but I am F3 and the doc says THAT is the reason for 12 weeks.

[SunIsOut]

My take on the test results are this.  Different tests have different sensitivity on what it can detect and what it can count.  The test I had went to 15 IU/ml however even if it can not count it can still detect it in smaller numbers but not to zero.

I came back Detected (<15 IU/ml at EOT and went on to clear at 8 weeks post tx and maintained SVR 16.

What to remember is Harvoni does not "kill" the virus.  It destroys it's ability to replicate.  Since it can no longer replicate it dies off due to how long it is viable.  Understanding that gives you a better understanding of why the 12 week post tx and 24 week post tx is a good indication if your tx is successful.  Even though the test can not count below it's sensitivity number, if you had a small number in your system your follow up tests would show the virus replicating at their exponential rate during the 12 or 24 week period.

I'll feel better once a year has passed as well, however I am very confident I have cleared Hep C once and for all and that is my sincere wish for all of us!

Have a great week and enjoy each day!

Katie

My 8 week post treatment came back detected with a value of 270 where I was undetected at weeks 8, 12, 16. They want to retest next week. It is cloudy today in my personal world and I am being life tested where I am still job hunting too!

[Redbird29]

SunIsOut - I am so very sad to hear this..... 

Please keep us update on your next test and if your treatment team has any options available for you to pursue.

Peace and blessings ~ Robin

[rchiocchio]

Just got back the results of my 2nd (7 weeks?) test, and it's still undetectable. So I will be finishing up my 8 weeks, and not going for 12 weeks as originally planned. In the last few weeks I've felt a lot better than I did during the first half of the treatment. Hopefully it is just smooth sailing from here.

[dragonslayer]

My 8 week post treatment came back detected with a value of 270 where I was undetected at weeks 8, 12, 16. They want to retest next week. It is cloudy today in my personal world and I am being life tested where I am still job hunting too!

Sun, really sorry to hear this. Questions:  when did you start treatment and what was its duration?  Is your 8 wk post treatment test  your only post treatment test to date?  Since the virus replicates at a rapid rate, 270 is a low count, so hoping there is still a chance that you may clear prior to 12 wks.  For what its worth, as you can see in my sig, I was detected also at near 8 wks post treatment.

[Katie]

My 8 week post treatment came back detected with a value of 270 where I was undetected at weeks 8, 12, 16. They want to retest next week. It is cloudy today in my personal world and I am being life tested where I am still job hunting too!

Concerning, devastating news, SunIsOut!  You are one of my buddies who was always so inspiring and I am totally shocked by these results.  However, like DragonSlayer mentioned, both of us were detected at EOT and beat the virus, so I would definitely get another test in a few weeks to see if it is going down or replicating.  That will be the best indicator.

Sending you a big {{{{HUG}}}} and will have you in my thoughts!  The battle isn't over yet and we are here for you!

Katie

[SunIsOut]

Concerning, devastating news, SunIsOut!  You are one of my buddies who was always so inspiring and I am totally shocked by these results.  However, like DragonSlayer mentioned, both of us were detected at EOT and beat the virus, so I would definitely get another test in a few weeks to see if it is going down or replicating.  That will be the best indicator.

Sending you a big {{{{HUG}}}} and will have you in my thoughts!  The battle isn't over yet and we are here for you!

Katie

Thanks Katie and Dragonslayor,

I will go first of August to repeat the test and I have been having 4 week labs since starting treatment where labs 8,12,16 were undetected and labs 1, 20 week were detected. Yes 270 is low so we will see soon. I was on the 12 week treatment.

[dragonslayer]

Sun... So you had a 4 wk post treatment test which was undetected?  I cant quite tell by the way you list your results... Generally, its best to use 'On Treatment' and 'Post Treatment' designators before each lab posting  rather than counting wks from the beginning of treatment for post treatment results reporting.  Less confusing that way.

If so, as you can see in the link, the 4 wk post treatment  test result of UND is 98.5% predictive of SVR12 and 99% predictive of SVR24, so, it would be extremely unusual for you not to clear at 12 wks if true..Ive never heard or read of anybody here, I think, who, on harvoni, was Undetected at 4 wks post and then detected at the SVR12 check point.

Hoping for the best...


http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf

[SunIsOut]

Sun... So you had a 4 wk post treatment test which was undetected?  I cant quite tell by the way you list your results... Generally, its best to use 'On Treatment' and 'Post Treatment' designators before each lab posting  rather than counting wks from the beginning of treatment for post treatment results reporting.  Less confusing that way.

If so, as you can see in the link, the 4 wk post treatment  test result of UND is 98.5% predictive of SVR12 and 99% predictive of SVR24, so, it would be extremely unusual for you not to clear at 12 wks if true..Ive never heard or read of anybody here, I think, who, on harvoni, was Undetected at 4 wks post and then detected at the SVR12 check point.

Hoping for the best...


http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf

I had the twelve week treatment and had tests every 4 weeks plus every 4 weeks after treatment. Here is how it went;

Treatment Period;

Week 4 - detected
Week 8 - undetected
Week 12 - undetected

Post treatment Period;

Week 16 - undetected
Week 20 - Detected 270

I am supposed to speak with John Hopkins on Monday. They called today to discuss but I missed the call. I will keep you all posted.

thanks everyone! 

[Lynn K]

So week 16 is 4 weeks post treatment so you were SVR4 and week 20 was 8 weeks post so the test you will be having next on the 1st of August would be your 12 week post treatment test if I am understanding correctly

Best of luck they do say once hep c comes back it replicates very rapidly so with that low number wishing you the best possible results

Good luck
Lynn

[gnatcatcher]

Day 20 of Harvoni Tx. Side effects have been minor:
Good=more energy (I had really been dragging during years 42-43 of HCV)
Okay=less sleep (but functioning adequately thanks to the extra energy)
          more pee on Days 1-5 (drinking 72-80 oz./day is 2 C more than pre-Harvoni)
Bad = general abdominal discomfort (most days; tenderness comes and goes)
          sluggish bowels >=Day 7 (same high-fiber diet but much less #2 output)
          I'm doing the same exercise routines as before, so this is puzzling.
         
Happy to say that I forget I'm on Harvoni except when the alarm clock reminds me to take the next pill. Many thanks to everyone on this forum for preparing me well.

[sickpuppy]

Day 20 of Harvoni Tx. Side effects have been minor:
Good=more energy (I had really been dragging during years 42-43 of HCV)
Okay=less sleep (but functioning adequately thanks to the extra energy)
          more pee on Days 1-5 (drinking 72-80 oz./day is 2 C more than pre-Harvoni)
Bad = general abdominal discomfort (most days; tenderness comes and goes)
          sluggish bowels >=Day 7 (same high-fiber diet but much less #2 output)
          I'm doing the same exercise routines as before, so this is puzzling.
         
Happy to say that I forget I'm on Harvoni except when the alarm clock reminds me to take the next pill. Many thanks to everyone on this forum for preparing me well.

Is there any way I can email my gnatcatcher avatar? I don't have a web page.

That's interesting, I have exactly the opposite effect.

All abdominal discomfort gone, I had it before treatment. I sleep more than I did before treatment and I now go #2 regularly, like clockwork, two times per day. I used to go once every 3-4 - I was on lactulose too because of this, trying to get things going.

Energy wise, I have less, a lot less.

[gnatcatcher]

You're not kidding about EXACTLY the opposite effect: I used to have two #2's per day! One thing this side-effects forum shows over and over is that Harvoni causing opposite effects on two people is far from unusual. I'm really sorry you have a lot less energy and hope it returns quickly post-Tx.

[Myfly73]

Will the hair fall out during this Harvoni treatment?

[gnatcatcher]

"Will the hair fall out during this Harvoni treatment?" -Myfly73

That's very unlikely. Mine has been fine so far (20 days). I used the "Advanced search" function at left (below the Stats) and entered "hair Harvoni" to see all references in these forums. When I weeded out messages that discussed hair loss with prior treatments or hair loss with combined treatments (Harvoni concurrently with some other drug), few people seemed to experience hair loss on Harvoni alone, and then it seemed to be limited to thinning, not the kind of total loss that occurs with cancer chemo. Feel free to do the search yourself, in case I missed something, but chances are you'll either lose no hair at all or lose only a little.

[Lynn K]

Hi Sick puppy

Are you taking lactulose for hepatic encephalopathy? I saw on your other post you have had a bleed from varicies. Would you know your MELD score?

I hope you are being seen by a liver specialist associated with a liver transplant center they are best equipped to care for a patients like us with cirrhosis.

Good luck
Lynn

[Mugwump]

Will the hair fall out during this Harvoni treatment?

No. This is not at all the same type of chemo therapy used for cancers. If anything the increase in blood pressure some experience might cause hair to grow. But Harvoni is not approved for the purpose. The only real hair loss risk is if you wind up pulling your hair out waiting for your test results, especially if you live in BC Canada like I do!

[Gemini]

Hello all.
I began Harvoni on July 30th. I've been diagnosed for twelve years and possibly infected in 76 due to a blood transfusion I received as a newborn. The side effects I have experienced are extreme hunger. Which is very tough for me to deal with as I have just lost thirty pounds due to exercising daily and eating right. Is anyone else having this problem? I look forward to everyone's posts. Thank you!!

[dragonslayer]

Gem,

For me, much more impactful for my appetite than Harvoni has been working out hard and often!  My appetite was large during harvoni, before harvoni, and after harvoni, mainly as a result of spending 2-3 hrs in the gym daily.  Burning the calories prompts the hunger.

[Mugwump]

Hello all.
I began Harvoni on July 30th. I've been diagnosed for twelve years and possibly infected in 76 due to a blood transfusion I received as a newborn. The side effects I have experienced are extreme hunger. Which is very tough for me to deal with as I have just lost thirty pounds due to exercising daily and eating right. Is anyone else having this problem? I look forward to everyone's posts. Thank you!!

A normal balanced diet with 6-8 OZ of various proteins whether from legumes or not, PLUS at least 1200 calories worth of various starches from starchy fruits and vegetables and grains along with good hydration with just good ol' water was what I tried to do. My weight didn't drop but unfortunately I have a high body mass have F4 cirrohsis and am 62 years of age and was not as active during treatment as I should have been.

If you are extremely active your system will need more calories than that!.  I know that if I was working hard during treatment I would have had to eat at least 2500 calories of food stuffs per day. Fortunately I am not a diabetic yet... touch wood as late onset type two runs on my fathers side of the family.

So essentially if you are very active and have a low body mass restricting your diet is not at all a good idea. Harvoni does not cause the hunger period!

As you clear the virus and your liver functions improve you will find more than anything else that the way your body metabolizes food will improve.

Just eat normally and don't sweat it, exercise will not help you to get rid of HCV, but your renal system along with a healthy liver that is not starved for essential nutrients will.

Slay that dragon I know you can and will do it!
Eric 

[gnatcatcher]

I began Harvoni on July 30th. I've been . . . possibly infected in 76 due to a blood transfusion I received as a newborn. The side effects I have experienced are extreme hunger. Which is very tough for me to deal with as I have just lost thirty pounds due to exercising daily and eating right. Is anyone else having this problem? . . .

Gemini, I also experienced extreme hunger when I started Harvoni (on July 9). Like you, I was also infected via transfusions in the 1970's (1971). I attribute the voracious appetite to the energy boost I began to feel within hours of taking the first Harvoni pill. I did gain several pounds during the first few days, but I continued doing the identical exercise routines as in pre-Harvoni days, although I'm walking more (and more briskly) because of the extra energy. The hunger has leveled off and the extra pounds are gone, partly because I'm drinking 2C more water/day than pre-Harvoni, and partly because my body has become accustomed to the increased energy.

If you keep exercising daily, eating right, and consuming enough water (which helps take the edge off the hunger pangs), your appetite will probably soon recalibrate itself.

[dragonslayer]

Weight gain is simple... If you consume more calories than you burn, you will gain weight, regardless of Harvoni.  If hunger leads to more consumption, then exercise harder and you wont gain weight, unless you are exercising and eating in a way to build muscle.. Muscle weighs more than fat, so in that case, you will gain weight,  but muscle weight gain is usually not the problem.

[sickpuppy]

Hi Sick puppy

Are you taking lactulose for hepatic encephalopathy? I saw on your other post you have had a bleed from varicies. Would you know your MELD score?

I hope you are being seen by a liver specialist associated with a liver transplant center they are best equipped to care for a patients like us with cirrhosis.

Good luck
Lynn

Hi Lynn,

My situation is very confusing. My disease seems to be improving, rather than being worse as time passes. To answer your question, I had bleeding at age 11, then at 12 and 13. I took lactulose for 2 weeks sometimes 2 years after that because of high ammonia levels. I don't think it was HE, or maybe I didn't notice it. In any case, I didn't need it anymore since then and the varices disappeared.

Naturally, I had a check-up (blood, endoscopy, ultrasound) every six months and my liver has improved or at the very least remained the same as 10 years ago. I can't explain why, but the improvement started once I was put on Propranolol and Silymarin.

I keep trying to grasp where I am in terms of a SVR chances and I don't know if I should put myself in the compensated, decompensated or re-compensated cirrhotics. 16.2 kPa, currently on 12 weeks Harvoni + Ribavirin. Very scared 12 weeks won't cut it, blaming myself for not waiting until December to go for the Indian generics, 36 weeks, just to be sure .

My MELD fluctuates between 12 and 14. Other bloods put me in CPT A with a score of 6, but the fact that I took lactulose for ammonia that one time might indicated that it's HE, controlled, which would turn my CPT into a 7, so a B.

[HepcPbc]

Still new at this.  Hope I am posting in the correct place, and if not, please let me know  I started Havoni a few days ago and feeling fine.  In fact, feeling better than before.  But now, I've noticed that a bone spur that I've had for ages on the bottom of my foot has suddenly and dramatically increased in size and it's now about the size of 1/2 of a golf ball.  I had swelling of legs before Havoni and more frequently with Harvoni.  Also, I've increased the amount of walking.  I only wear flat shoes.  Not sure if it could be Harvoni or liver related deficit, or related to the increased walking, but it noticeably increased in size during the day today.  Anyone else with related issues?

[Mugwump]

Still new at this.  Hope I am posting in the correct place, and if not, please let me know  I started Havoni a few days ago and feeling fine.  In fact, feeling better than before.  But now, I've noticed that a bone spur that I've had for ages on the bottom of my foot has suddenly and dramatically increased in size and it's now about the size of 1/2 of a golf ball.  I had swelling of legs before Havoni and more frequently with Harvoni.  Also, I've increased the amount of walking.  I only wear flat shoes.  Not sure if it could be Harvoni or liver related deficit, or related to the increased walking, but it noticeably increased in size during the day today.  Anyone else with related issues?

With a caveat here. I am not a doctor but fluid on the legs and feet is common with liver disease. I hope it starts to improve as soon as your liver starts to function better. I have F4 cirrhosis but fortunately little abdominal swelling from liquid in my abdomen (ascites) or marked swelling of my feet or legs. But sometimes over the years my feet did get a little puffed up if the disease was suddenly more active or if I got sick and my urine darkened and there was a little trouble with my renal functions.

In fact, during treatment I found it more easy to pass fluids and was considering using a chamber pot chair temporarily so that I would not have to wake my wife every few hours when I went to have a leak.

And that is the whole point as your liver function normalizes you should also have better overall renal functions.

I know I did starting about week 8. It was almost like a miracle! All of a sudden I could work again and hike and most importantly fly fish and wade rivers.

All that being said please see your doctor if you have fluid troubles especially keeping decently hydrated during treatment or if you have trouble passing urine at all.

All the best during your treatment.
Eric

[HepcPbc]

Thank you Eric.  Never much of a water drinker before, but now I drink a lot of water and actually enjoy the taste.  And I seem to have no problem with renal function.  To clarify my previous post, the part about the bone spur, the bone spur itself is not the size of 1/2 golf ball, but the bump on the bottom of my foot.  I think the bone spur has increased in size and maybe swelling, and fluid added to the rapid increase in size.  I see a Dr after my first week of treatment, so will discuss then.  I did find an archive from earlier years about bone formation in the knees and I think it was where there was already damage.  Thank you again Eric, and happy healing to you, too.

[alowishes]

I did not have a great amount of discomfort, did have ache's in joints..

I would also need to crash midday. I did my 12 weeks & go for blood on Monday.

I will let all know how I made out..I am very interested in how long will these side effects last, as I am still fatigued & ache in joints. I have fiends who did the needle thing.....I am so happy for this miracle. This, from what they have told me is a walk in the park. Lets hope we all make out * Cheers*

[mklbjk]

I am new to post but have been here learning for a while.  I started Harvoni June 24th.  I have had occasional fatigue and a few headaches but nothing that stops me from my usual activities.  I was Undetected (0) at my 4 week labs with Alt and Ast down to 15 and 20.  Very grateful for this treatment.  Just received my third and last bottle of Harvoni today.  The time has flown by.  Will be done on Sept 15th. 
Prayers for successful outcomes for everyone!

[april]

I am half way there, just started week six of Harvoni only. I have NO side effects. Waiting for results of my first set of labs

[Wolffeathers]

Hi, I was diagnosed in 2007. I went thru the interferon ,Ribavirin to no avail.. Then tried again in 2012, but once again the treatment failed.. I have now been on Harvoni and Ribavirin for 5 weeks and at week 3 vl was undetectable.. My symptoms have been few and I guess I don't think that much of them due to previous treatment that was so horrible.. My RBC are low so just have to stay on top of lab work.. To any one that has any doubts just hang in there.. Try to do all the right things to make yourself well.. My prayers go out to each and every one of you.. The monster will live no more..

[Myfly73]

Thank you all for the encouragement and information as well as support during journey to come. Bless you All!

[KimInTheForest]

Welcome to the forums and to the journey, Myfly73, Wolffeathers, mklbjk, alowishes and all others who have just started posting here. Good luck to all of us.

kim

[MJ82]

It's clear that experiences with Harvoni vary quite a bit, though statistically, the majority may not have side effects or at least only minimal for all I know.

I'm on day 8 of Harvoni, and I am getting side effects quite strongly now, which I didn't expect. The first couple of days were absolutely fine and I felt nothing, and then day 3 and 4, i started to get some fatigue late afternoon (even before I take my 8pm pill).

Yesterday for the first time, the fatigue came in waves through out the day and was rather strong. It's not that I felt the need to sleep or lie down, but small tasks made me feel like I'd exerted myself intensely - a very heavy physical feeling with a little shortness of breath. I've also been feeling a bit dizzy and have had some headaches, some mild joint pain (which has been a lifelong friend with my Hep C anyway), a dry mouth and occasionally a slight metallic taste in the back of y throat. My blood pressure has also gone up a little from time to time.

I did 11 months of Interferon and Ribavirin about ten years ago and it's true that that was grueling, but I wasn't expecting to feel so affected by this new drug. I do hope these side effects pass soon and that I start to feel the energy surge that everyone talks about! Either way, it will all be worth it to kick this virus! Best of luck to everyone here!

[slats1056]

 Day 27 on Harvoni. Most side effects leveling off. Still get some bad ass head aches a couple of times a week. Got used to the tinnitus. Sleep still seems to be the major issue. 2-3 hours a nite. Joint pain persistent but bearable. Does anyone think that water consumption causes any electrolyte problems? Started adding Gatorade and pedialyte to fluids & leg cramping seems to have abated.                                                                                                                                                                                                                                             Went in Yesterday to pick up second Rx from Dr. Had 4 weeks labs done while I was there. Now waiting for next Monday for office visits & lab results. Cautiously optimistic!!! Seeing all of the info. on You guys signature is promising. As soon as I get my results back I will update My signature.                                                                                                                Well, I guess the brain fog hasn't lifted. Forgot I was posting this & left it hanging on My screen.

[Patience]

First time post from a "lurker" who has read the posts on this site with interest and learned a great deal from them. I am 18 Harvoni pills away from end of 12 week treatment and I have had a selection of sides from the Harvoni Side Effects Menu - moderate fatigue, headaches, nausea, dry, blurry eyes, tinnitus,itching, and aching joints. All of these were tolerable and gratefully put up with until yesterday. I woke up at 4:30 a.m. itching and nauseated and I was concerned enough to see my primary doctor, who gave me some anti-nausea stuff, which by the time I got it, I didn't need enough to risk taking.  Today I was knocked flat by fatigue the likes of which I have never experienced. I'm quite used to the kind where you go about your day wishing you could just lie down, but I've never had the kind where standing up was not an option. I'm thinking this must be unusual for the 10th week? I spent the entire day in bed just barely able to make it to the bathroom and to let the dogs out. I'm determined to get those last 18 pills down, but if this continues it will be a lot harder than I was expecting. My labs from yesterday came back all in the normal range -VL und, AST 22, ALT 13, so right on target there - no complaints! Just puzzled and concerned over the sudden increase in fatigue. Thanks to all who post here for support and encouragement. It really helps!

[Katie]

Hang in there Patience.  During week 9 & 10, I had a similar situation for about 10 days.  I've never been depressed but figure that was what it was like in an extreme case.  I had the worst fatigue where I had to talk myself into feeding my dog and cat, who are my best buddies.  I would just sit in a chair with my head hanging as I didn't have the strength to hold it up.  Then one morning, I woke up and felt great again.  It was a very strange thing as my treatment prior to that episode was easy and I had felt better than I had in years.

I also want to mention, that my EOT blood work came back detected <12 IU/mL which was so disappointing.  My doctor had me take another test at post treatment week 8 and week 16 which both came back undetected.  I am truly blessed.  Several others also detected at EOT have cleared the virus so don't give up and my feeling is if you are a strong responder lowering your level down to almost zero, that you will clear, so get retested.  This was not shown in the test group results and had some of us really stressed out.

Another thing is as soon as I stopped the little orange blessing, my energy spiraled down and I haven't been feeling well.  This has lasted, with slow, small improvement and now 5 months post treatment, I am finally feeling better.  Not 100% but I am mowing my small lawn and starting to get my house in order.  It has been a rough summer for me but I feel blessed and know it was well worth it to be free of the alien, parasitic HepC virus.  I am no longer a bio-hazard and that is remarkable!

Remember everyone reacts a bit differently, so what I experienced doesn't mean anyone else will, but since you are experiencing the 10 week issue same as me, I wanted to share my general experience.

Good luck to you!

Katie

[slats1056]

  Patience keep on keeping on. One foot in front of the other. You will get there. I just try to be as positive as possible. Talk to the Doc if You are ever in doubt. Forums are a big help so far for Me also. Glad You are so for along on Your RX. Hate that You are having issues. Boy I am hoping My issues mellow a little down the line (sleep issues, massive head aches, joint pains) the rest are manageable so far. Never thought about the blurry eyes, just focusing on small print. Fatigue is a problem at work. So far spurts of energy then crash several times through out the day. Congratulation on Your labs. I get My four weeks results 8-17-15. Instead of complaining , I prefer to think of it as sharing Your observation and experiences here on the forums! Great place to do that by the way. Someone usually points out the obvious that You never see or think about. Hope thing get better fast and the rest of Your treatment is good to You.

[Patience]

Thanks, Katie. I especially liked the part where you woke up one morning and felt great again! I feel better today than yesterday, but I'm for sure not dancing, and the dogs, the couch, and I will be partners for most of the day.

According to the tests I had this week, I have cleared the virus and I suspect that I have been clear for a while since my 3 week labs, tho still detected, showed a really dramatic drop. What I'm wondering is; if all those little Harvonis are out of a job now so to speak, what kind of mischief are they getting up to in there? I know it only makes sense to stay the course and finish the 12 weeks to make sure all virus is eradicated, but maybe it's too much of a good thing? Guess there's no way to know.

I'm so glad you are finally feeling better. It's been a long haul, but the end result is a gift that a lot of us thought we'd never have. Every day brings you closer to the one where you wake up and feel great again!

Slats1056 - just saw your comment. Thanks! Yesterday one foot wouldn't GO in front of the other!! But today is better and I am actually somewhat upright. Luckily, I'm retired so I don't have to go to work any more. But I really admire the grit and courage of those of you who soldier on to jobs every day- I'm not sure I could have. Good luck on your labs!

[slats1056]

Patience  Judging by the stats list on the signatures You will have plenty of time and reason to break into Your happy dance soon. Keep it up and good luck. Not sure how I accomplish day to day working full time. Family, sheer ignorance, not wanting to give up or what. Sometimes family & friends just don't understand. But the again they are mere mortals, and we superheppers with this virus were put here to conquer HEP once and for all!!!!! HA HA HA!!!LOL!!!! Need more humor I think. Makes sense to Me. BTW, wouldn't it be cool to be a super hero & knock the crap out of this stuff? Laughing usually goes a long way to making me feel a little better when I crash.

[Mugwump]

It's clear that experiences with Harvoni vary quite a bit, though statistically, the majority may not have side effects or at least only minimal for all I know.

I'm on day 8 of Harvoni, and I am getting side effects quite strongly now, which I didn't expect. The first couple of days were absolutely fine and I felt nothing, and then day 3 and 4, i started to get some fatigue late afternoon (even before I take my 8pm pill).

Yesterday for the first time, the fatigue came in waves through out the day and was rather strong. It's not that I felt the need to sleep or lie down, but small tasks made me feel like I'd exerted myself intensely - a very heavy physical feeling with a little shortness of breath. I've also been feeling a bit dizzy and have had some headaches, some mild joint pain (which has been a lifelong friend with my Hep C anyway), a dry mouth and occasionally a slight metallic taste in the back of y throat. My blood pressure has also gone up a little from time to time.

I did 11 months of Interferon and Ribavirin about ten years ago and it's true that that was grueling, but I wasn't expecting to feel so affected by this new drug. I do hope these side effects pass soon and that I start to feel the energy surge that everyone talks about! Either way, it will all be worth it to kick this virus! Best of luck to everyone here!

It can be tough for the first 3 to 4 weeks. The difference is that Interferon hit like a train for 4 days after you first take it then slowly you felt better till the next shot. What happened to me on Interferon/rib was that my blood count became dangerous at about 6 months so the dose of rib had to be lowered. All I remember is I became weak as he&% and it took me over a year to recover from 48 weeks of peg/rib.

At week 4-5 of Harvoni I suddenly started to feel great but like you at first it definitely did throw me for a bit of a loop. But no where near as bad as the other treatments. I took no pain killers or nsaids at all during Harvoni treatment and I never felt so bad that they were necessary. But there definitely were periods of lethargy, headaches, some minor myalgia which is still present at 12 weeks post treatment but is slowly going away.

I am F4 and I suspect that some who have more ongoing damage will necessarily feel more side effects. IMO the positive side effect of knowing that I have had the chance to live a life free from the horror of HCV and that life is the best answer to the waiting and worries. No matter how short or long life will be will after clearing the virus, it will certainly be better than what it was before Harvoni for me at least. I suspect people get very used to the horrible debilitating effects of compromised liver function and forget what it was to feel normal.

Get rid of the dragon and all the best in reaching SVR
Eric

[philsky]

I finished my pills on July 11th. Things only get better once your liver and triglycerides get normal. Stay the course is all I can say. I have more energy and a clearer head now. I have posted before about skin conditions and pains going away very quickly. I must confess, I drank a few beers during treatment and didn't really change any lifestyle. The drug attacks the RNA of the virus, the liver is only the beneficiary of less virus attack. My cholesterol has dropped, my appetite has increased and I have actually lost weight around my belly. I have nice dreams at night and wake up refreshed, rather than before with the fatigue. I hope this inspires anyone who is feeling like the treatment is getting the better of them. STAY THE COURSE!!! This stuff will improve your quality of life and will work! Let's all be winners.

[Wolffeathers]

I'm on week 7 of Harvoni and Ribavirin.. My vl was undetectable at week 3... So that was great news, but on the down side I came down with shingles.. I'm doing well and think it's do to being on gabapentin.. But had to take another antiviral med... RBC is way down. So I don't have any energy, legs like rubber... Doc says of it gets any lower they may give me procrit.. My attitude is good, all though the meds mess with my mind at times. Please every one stand tough it.. God Bless is All..

[redcat36]

Hi everyone, since my last post I've had another Fibro Scan with different machine and different operator and the result is the same - F4.  I've elected to go ahead with treatment beginning August 27 and lasting 12 weeks.  Good news is, my insurance will cover all but $2800.  Even if it didn't cover it, I would opt for treatment anyway as I'm on the ragged edge of compensation/decompensation.  So, wish me luck.  I'll be on the site reading and sharing during my treatment.  Thanks to all who have posted here, and continue to share their experiences.
Regards,
Larry

[Lynn K]

have you checked with My support Path? They provide co payment assistance

https://www.harvoni.com/support-and-savings/co-pay-coupon-registration?evo_source=MYSUPPORTPATH&_ga=1.236860617.973567089.1408674970

Eligible patients may pay no more than $5 per co-pay for HARVONI

We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Need a replacement coupon?

Please note the following:

    You are not eligible if you are enrolled in a government healthcare prescription drug program such as Medicare Part D or Medicaid. This includes when you are in the Medicare Part D coverage gap known as the "donut hole."
    The HARVONI Co-pay Coupon Program will cover the out-of-pocket costs of your HARVONI prescriptions up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. See Terms and Conditions below.

Check your eligibility

*Are you a current resident of the 50 states, District of Columbia, Puerto Rico, Guam, or the Virgin Islands?
 Yes No

*Are your prescriptions paid for in part or in full by any state- or federally funded program, including but not limited to Medicare or Medicaid, Medigap, VA, DOD, or TRICARE? Please note that Medicare Part D enrollees, while in the prescription drug coverage gap (the "donut hole"), are not eligible for the co-pay coupon.
 Yes No

*If you begin receiving prescription benefits from such state- or federally funded programs at any time, you will no longer be eligible to use the co-pay coupon. Do you acknowledge your agreement with this statement?
 Yes No

[Patience]

I'm on week 7 of Harvoni and Ribavirin.. My vl was undetectable at week 3... So that was great news, but on the down side I came down with shingles.. I'm doing well and think it's do to being on gabapentin.. But had to take another antiviral med... RBC is way down. So I don't have any energy, legs like rubber... Doc says of it gets any lower they may give me procrit.. My attitude is good, all though the meds mess with my mind at times. Please every one stand tough it.. God Bless is All..

Wolffeathers - I was given Procrit when I was in treatment in 2005 and my red blood count fell really low due to Ribavirin. It was a miracle! It made so much difference. So if you have to have it, it should help those rubbery legs a lot. I was short of breath and could hardly make it up the stairs and had to lie down when I did,  but Procrit was a Godsend for me. Hope your shingles clear up - you definitely did not need that - and that you start feeling better soon. Just knowing that you've no more virus to be detected will keep you going!

[concerned father]

My daughter will be starting her treatment in two weeks.  I hope all goes well.

[gnatcatcher]

You can be sure a lot of us on this thread are rooting for your daughter.

I've started week #6 of Harvoni and have had only very minor side effects, including the positive effect of having more energy. My gastroenterologist's CNP/DNP colleague has supervised >300 patients on Harvoni and reports that they've done beautifully and no one has had to quit because of side effects.

[concerned father]

You can be sure a lot of us on this thread are rooting for your daughter.

I've started week #6 of Harvoni and have had only very minor side effects, including the positive effect of having more energy. My gastroenterologist's CNP/DNP colleague has supervised >300 patients on Harvoni and reports that they've done beautifully and no one has had to quit because of side effects.

Thank you

[Wolffeathers]

Thanks for sharing about the procrit.. That will really be a good boost for me.. The shingles is doing very well and healing quick.... My heart goes out to all that had to go thru this disease... God Bless you All

[Dudleyandme]

hello everyone, I'm new here. I started Harvoni 8 days ago, I'm on an 8 week treatment. I take it at 10:00am each day and by 11:30am sharp it hits me like a truck every time. I get this feeling like I'm going to faint, extreme nausea, extreme fatigue and mild headache. I sort of feel like I'm drowning for the first few hours, but by 5pm it starts to lift, thank goodness. I'm drinking a ton of water, I'm eating a full meal before I take my pill, I have a fruit and veggie juice mid afternoon.  I get to bed just before it hits and stay there until dinner time. I'm wondering if this will get better, it's harder than anticipated  .
I'm also not sleeping at night and sadly my last two Dr appointments have been rescheduled by the Dr. Office so I can't talk to them about it.

Fibroscan- F3
Viral load- 4 mill

Laurie

[Lynn K]

Can you call your doctor's office and at least speak with the nurse? That is one of the reasons they are there for this sort of thing.

Or you could call My Support Path they also have nurses available to talk to about your symptoms.

http://www.mysupportpath.com/help-along-the-way

A 24/7 help line with nurses on call to provide answers and assistance

 1-855-7-MYPATH (1-855-769-7284) to learn more about resources that are available to help patients along the way toward treatment completion

Best of luck to you I hope you are feeling better soon hang in there

Lynn

[MrSimple]

Hello everyone

I am new to this thread and was wondering if people who have gone through some of the side effects of Harvoni can help me out.

My mother is currently taking Harvoni and she just finished week three and is moving on with week four. Prior to this, she felt relatively fine aside from some tightness of the head and insomnia (She has always suffered from chronic insomnia)

In the past few days however, she seems to be experiencing more intense symptoms as she says that she has more severe headaches, feels dizzy at times, feels heat flushes throughout her body (Menopause like flushes) as well as some nausea.

I was wondering if anyone knows why these symptoms started intensifying after three weeks and if they tend to get better or worse. I also want to know what people do/take to cope with strong headaches, nausea and dizziness. Thank you for your time and your responses.

-Best wishes to all the fighters

[KimInTheForest]

Hi Mr. Simple, and welcome to the forums! So sorry to hear about your mom's problems. Others here will no doubt chime in on other things you have mentioned. But with regard to dizziness, do check her blood pressure. A drop in blood pressure can certainly cause dizziness. A number of people on these forums have reported an increase in bp while on Harvoni (didn't happen to me). I am not sure if increased bp could also cause dizziness. But if you have a home bp machine or even those bp testing booths in drugstores, check your mom's bp.

As for the general trend and whether her side effects will get better or worse… these drugs seem to affect everyone's body differently in terms of side effects, making it very hard to predict.

help her stay focused on the cure she will almost certainly achieve. that what gets most of us through any difficulties.

best of luck with it all!

kim

[gnatcatcher]

Laurie, in addition to what Lynn K. suggested, the specialty pharmacy through which you obtain your Harvoni may also have nurses and/or pharmacists whom you can call with your symptoms and questions. Mine does, and they have been very helpful.

[gnatcatcher]

Mr. Simple, I can add only one thing to Kim's excellent answer. Quite a few people on this forum have found that staying well hydrated can minimize or eliminate the headaches. A rule of thumb several have suggested is one ounce of water per day for each two pounds of body weight. For example, if your mother weighs 128#, that would be 64 ounces (8 cups) per day. She may even need to go above that. I'm in week 6 of Harvoni; beginning in week 3 I had to increase the fluids above the formula because of other side effects.

Best wishes to you and your mother.

[philsky]

you know that I felt a change at day 2. I felt clear headed and more energy. I think that some effects are due to the lowering of fats and the normalizing of liver function. I don't think the drug itself is doing anything, I think the re-adapting of the body is to blame. The drug targets the rna of the virus which is specific. I hate hearing about folks having a hard time with harvoni. I had no sfx at all. lucky me. stay the course and don't be discouraged......of course check with your G.P. or gastro, but I am sure these sfx are transient and will go away soon.  good luck everyone, I hope all get better.

[Dudleyandme]

Perhaps it's because I'm Canadian, but our doctors and specialists offices do not have nurses. The only place with nurses here is in a hospital, which by the way have at least an 8 hr wait time in an emergency. I may try calling gilead, but the last time I called them the nurse just kept saying " I'm not sure" . We also do not have any specialty pharmacies that I'm aware of , just regular store pharmacies. I do not know who filled my prescription as I received it straight from my doctors office.

[gnatcatcher]

Perhaps it's because I'm Canadian, but our doctors and specialists offices do not have nurses. The only place with nurses here is in a hospital, which by the way have at least an 8 hr wait time in an emergency. I may try calling gilead, but the last time I called them the nurse just kept saying " I'm not sure" . We also do not have any specialty pharmacies that I'm aware of , just regular store pharmacies. I do not know who filled my prescription as I received it straight from my doctors office.

Laurie, sorry, I didn't realize that you are in Canada. Here in the States expensive medicines often go to a specialty pharmacy, which ships them to the patient.

Going back to your original message, you mention that you've eaten a full meal before taking Harvoni, and by 90 minutes later you get extreme nausea. Since Harvoni can be taken on an empty stomach (or a full one or anywhere in between), have you experimented with taking the pill several hours after your last intake of food to see if that lessens the nausea? I've been taking mine at 6 a.m. with only a glass of water, then I eat two hours later. I'm not saying that's necessarily the best way, I'm just saying that eating on an empty stomach is "legal" and hasn't caused me any problems.

However it happens, I hope you can soon find a way to minimize or eliminate those strong side effects.

[Vicky]

Hi all!  Thought I'd give an update!  I am 65, new liver 3 years ago, had hep c, cirrhosis, fatty liver disease, and liver cancer.  Because I had a transplant, I was on Harvoni for 24 weeks.  Since I did 3 different years of interferon, etc. treatments, I was sure I'd again have horrible side effects.  I kept waiting for the ball to drop.  I did have pretty minor side effects, major fatigue, major, major brain fog, minor aches, and that was it.  None of the evilness of previous treatment.  At 8 weeks I was undetectable, and now at 28 weeks I still am.  Got all my digits crossed it will stay away.  I felt pretty lousy for about a month after treatment, but have started to be able to focus and have more energy than the past 20 years.  I now make plan and succeed!  Have been doing traveling, concreting, saw sir Paul in June, and I have travel plans for sept and oct!  I am kicking ass and enjoying life to its fullest every day!  Best wishes to us all!

[Mike]

That's great news Vicky!

Looks like the long Hep-C road has come to end for you!!!!

Best wishes, Mike

[Vicky]

Thanks mike!  I wanted to share my good news!

[Scoutdoy]

Congratulations Vicky!! You have slayed the dragon.  I think sometimes people feel like shit for so long that they forget what it's like to feel normal.  I was talking to a friend of mine and he was saying that even though he is cured his body is hurting...I reminded him that for 25 years he blamed it all on the Hep C...I suggested to him that we are all aging and he is 25 years older now, accept the fact that your aging and your body is going to hurt from that also. Stop blaming it all on the Hep c.  25 years of construction work takes its toll on joints and muscles also

[Katie]

I beg to differ with your reasoning Scoutdoy.  I suppose there could be truth in what you say for some people, but many of those of us that have had ill effects after treatment are things they have never experienced before.

I am definitely in worse shape than I was before treatment and certainly while on treatment as with Harvoni I felt better than in years and remodeled 2 rooms during that time, from top to bottom.  In 2013 I painted the siding of my house by myself and 2014 I painted the garage, stained the deck  and much more.  Now I am so weak I have to force myself to do basic daily activities.  I have some respiratory issues as well but the severe fatigue is horrible and in spite of sleeping well I wake up exhausted and just want to stay in bed.  I thought I was getting a bit better but today it struck me down again.  This has nothing to do with normal aging.  It is a post treatment side effect, and I have been feeling this way for 6 months now.  It is not something I am making up or making false claims.  All my bloodwork is perfect and it has my doctor stumped.  I really want to get my vibrant, energetic personality back.  I miss me.

Just wanted to let you know you shouldn't make anyone feel their issues aren't valid because more than likely they are.

I am glad you are feeling good.  That is wonderful!  And Vicky!  A big congratulations to you!

I want everyone to love life again because it is a true gift!

Katie

[Scoutdoy]

I didn't mean to make it sound like their issues aren't valid at all. If it came across that way I certainly didn't mean for it to. I have been dealing with severe fatigue and joint issues myself for the last 15 years and it sucks..  All I meant to say was that some of the effects may not be from the Harvoni treatment. It could be that some of the effects are from the body adjusting for other reasons. I don't think there is enough data to show what the long term effects of this treatment may cause many of us either long term.

[Cityliver]

 I started Harvoni 5 days ago .   The most noticeable side effects was a sudden rush of energy and flush feeling in face on the first night, 15 hours after first dose.    It was very intense while at dinner with friends, but hasn't happened again since.  I also noticed feeling emotionally sensitive the first few days .   Not sure if this is due to treatment but I'm aware of my joints seeming to be freed up .   Might just be in my head but joint pain is a symptom of the hep c I've noticed since being infected  just over a year ago.   I'm drinking more water as everyone seems to suggest and otherwise side effects are virtually zero .   I'm so grateful to be living in a time when this disease  is now being cured.

[Katie]

I didn't mean to make it sound like their issues aren't valid at all. If it came across that way I certainly didn't mean for it to. I have been dealing with severe fatigue and joint issues myself for the last 15 years and it sucks..  All I meant to say was that some of the effects may not be from the Harvoni treatment. It could be that some of the effects are from the body adjusting for other reasons. I don't think there is enough data to show what the long term effects of this treatment may cause many of us either long term.

No problem Scout.  I am probably a bit sensitive just because I am so out of sorts and was looking forward to feeling good. I have had some definite improvements too and many of the issues I had with Hep C are gone.  They just didn't prevent me from being productive like I am now. Six months of feeling crappy starts to work on you!   Today has  been rough and now my cat has an abcess and I have to take him to the vet tomorrow!  HA!  Another stressful event to deal with...poor baby!

I didn't mean to take it out on you and I have always been a positive person and not one to complain.  I always remind myself of those who suffer so much more and am grateful.

Have a good evening and I wish you well.  We all deal with what we have to and life goes on.  I have no doubt it will improve.

Katie

[Defendo]

I have not posted to this forum in months.  I started Harvoni on April 1. My treatment was to be for 24 weeks.  I had some "undocumented" sides during the first two months, but I was able to manage them.  At the end of June, I was undectable.  However, my blood pressure was elevated and continued to climb.  I did not monitor my BP during the first few months, but in April I went to the dentist an my BP was 170/90.  But when I went to my GI doctor in May it was normal.  I was considered "pre-hypertensive" for years, but always was able to keep my BP under control.

Here is the THING!  Starting in mid-July my BP became chronically high and everything I did to try to lower it and control it was ineffective.

In June I also started to have nose bleeds at least twice a week and they got worse and harder to stop as time went by. 

In my 18th week, I had to go to the emergency room because I was unable to stop my nose bleed after 2 hours of trying. My BP was 265/100.  I was given "rescue medication to bring my pressure down to levels where the doctor could couterize my nose.

My BP remained high despite efforts to bring it down and I began experiencing daily nose bleeds, horrible headaches and blurred vision.  I told my doctor I believed the Harvoni was causing my BP to raise uncontrollably.  Despite increases in BP medication, my BP would not come down. 

I had to go to the emergency clinic again at week 19.  Afterwards I made the decision to stop taking Harvoni because it was the primary suspect in my mind.

I stopped on August 14th, but continued to have blood pressure problems through-out the weekend.  But by Monday afternoon my BP finally began to lower.  Today it is much lower and becoming more consistant.  Previously I was experiencing periods of extremely high spikes.

The half life of Harvoni is around 48 hours, so it took about 2 days to reduce the amount of Harvoni in my system to 50%.  By Thursday I should have less than 25% of the drug in my system.

The fact that my BP has improved only by stopping Harvoni has convinced me 100% that Harvoni has cause this extremely dangerous situation. 

My GI nurse is not happy I stopped and told me that I would not be able to resume. That is fine with me because I do not want to develop kidney, heart or eye problems.

I believe this is not a common side of Harvoni, but Ihave read where some other patients had similar experiences. 

So for those of you on treatment, please monitor your blood pressure daily.  Most people do only 12 weeks and I tolerated 12 weeks OK.  But it was after the 15th week that the problems began to really manifest.

My nurse also said that since I stopped before completing the 24 weeks there was no guarantee that I would remain undectable at the end of the next 6 months. That kind of pissed me off because there is no guarantee even if I finished the 24 weeks.

I was undectable at 12 weeks and continued on Harvoni for approx 6 more weeks. So I hope that is enough. But if the dragon arises again, so be it.  It simply was not worth the risk to me.  The risk far outwieghed the benefits considering that I was undectable.  Time will tell.

But I just want other to be aware and be careful.  There is no doubt this is a miracle drug that can cure this hideous disease. But for some of us, it can also present other critical health issues.

[gnatcatcher]

Defendo, your nosebleeds I can really sympathize with. (I had two massive, unstoppable posterior nosebleeds in November, nine months before I started Harvoni. I haven't had any nosebleeds during my nearly six weeks of Harvoni; knock on wood I wont have any.)

Your advice to monitor BP is wise. In fact, because my BP shot up during the two hospitalizations for the nosebleeds, a nephrologist actually wrote a prescription for me to get a home BP machine. Interestingly, my BP at home is always either normal or pre-hypertensive (so far, Harvoni hasn't changed that, again knock on wood). But it is now always sky-high in any medical setting. (I bring the home machine in and check it against my PCP's machine, so he and I know the home readings aren't falsely low.) Having the home machine has taught me that I experience freeze-fight-flight PTS in medical settings (not surprising, since three treatments or procedures have harmed me, starting with getting Hep C from transfusions).

I believe you that Harvoni has been harmful to you, even though SEs that you have experienced aren't common. After all, plenty of people take Zantac without any problems, yet when I did, it gave me excruciating headaches that felt like my entire brain was encased in a metal vise that was being tightened, tightened, tightened. Fortunately, since I was taking only one Zantac a day, I noticed a pattern to the time each headache started, intensified, and finally abated. When I delayed one Zantac pill by 12 hours, the identical headache pattern was also delayed by 12 hours, and when I ceased taking Zantac, the headaches did not recur (and I have never again had a headache anywhere close to that excruciating).

You've had so many SEs, it's not so easy to prove that Harvoni caused any or all of them. If I were in your shoes, I would have stopped, too. I sincerely hope your SEs go away entirely and your VL remains undetectable.

[slats1056]

  Hey everybody,  Catching up on posts since being slammed with sides since Yesterday morning. Thanx for the chuckles gnatty , helped bring me out of the deep dark place back into the light to keep up the good fight.
  Defendo, sorry about Your sides & problems. I sympathize with You.

 BTW, Sunday I blew up My pedal powered antique laptop while try to get some info. off one of the forums. Problem is I can't locate where T was at!!!! Subject was about unpublished side effects of Harvoni. I was trying to e-mail to get a copy & now cannot find thread.  e-mail on forum was something like lifewithin , lookwithin. maybe livewithin??? Sound like something defend might like to read. ! know I do!!!! Still looking if anyone remembers see it!!!

[Defendo]

It was been 96 hours since I stopped taking Harvoni and my blood pressure is declining rapidly.  I still am getting a very occasional spike, then it returns to normal I have kept hourly records of my BP with charts and the trend is definately downward.

What was really scary is that in the last week before I stopped my Diastolic number continually went over and stayed at 100 - 110.  That is an indicator of vascular constriction which causes the heart to overwork. It can also effect your renal function.

So everyone, please watch you BP while on tx.
I am now praying that I will remain undetectable in 6 months. 

[gnatcatcher]

Tommy, could this list of all Harvoni side effects during the clinical trials be what you're looking for? http://www.gilead.ca/pdf/ca/harvoni_pm_english.pdf (see page 9). Five people mentioned it on various threads of this forum.

Defendo, page 7 of that document notes, "The proportion of patients who permanently discontinued treatment due to adverse events was 0%, <1% and 1% for patients receiving HARVONI for 8, 12 and 24 weeks, respectively." I remember that several people on this forum started having an especially rough time in week 9. Sorry you ended up in the 1% of 24-weekers who had to discontinue treatment. Glad your BP is rapidly returning to your baseline.

[Defendo]

gnatcatcher,

Thanks for the information.  I do believe that the numbers will prove to be higher in the general population. The problem with clinical trials is the very limited number of participants and in the case of Harvoni, the trials were "fast tracked". 

Pharmaceutical companies also tend to pick and choose participants.  I have found other patients who have experience significant spikes in blood pressure. So I think this is more common than reported.  It will be very interesting to see how the documented side effects change after this drug has been used for several years in the general population.   

But the bottom line is that this drug did result in the dragon being undetectable.  Hopefully he is dead and not hibernating somewhere deep in my system. 

I would like to know what the numbers are for people who were undetectable when they stopped Harvoni and then became detectable again after 6 months. That is my primary concern now.  Does anyone have this kind of information?

[redcat36]

Thanks for the information Lynn, I did check with Gilead and since I have Senoir Care Advantage with Kaiser, it is a Medicare Plan using Part D for drugs.  I will be in the "hole in the donut" space so coupons are not offered.  I'm told my total payout will be around 2.8K.  Not too bad.  I will start treatment on August 27.
Regards,
Larry

[slats1056]

HELLO all You Happy Heppers out there who are waiting on their SVR & those that have already achieved it!!!!
 Gnats , Doesn't look familiar but I'll check it out. Btw, as soon as I get a little more rested & can concentrate I'll be updating My signature with latest labs. What they didn't lose anyway!!!! But, that is another story for later. Apparently the fog was so pervading that I lost a couple of posts that I had keyed.
 Body is feeling great today. A little agitation going on in the old liver. Second set of sides have diminished greatly , except the crawling skin & some liver quivers. Mild headache, but everything seems to be back to abnormal as usual. I have scaled back fluid intake to about an ounce per pound through out the day. Seems to be that sweet spot I have been looking for!
 I have noticed darkening urine (not bad but kind of surprises me with amount of h2o) with an acrid odor. Virus die off? Hot flashes ( Male menopause LOL )? Body feels good , but brain fog & concentration problems persist. More so than the abnormal amount! Keying is a chore , thank God for spell check ( No comments from the cheap seats Gnatcatcher! ) If I didn't know better it's a flair up of the virus! 

 Thanx a million for the support when I was down everyone. I really needed the moral support this time!!!

 P.S. If I were rich the first thing I would do is Buy out Gilead & start giving the Meds. to everyone that couldn't afford it or were denied & given the run around just to pissed off the big business establishment!!!!!!!!!!!!
 

[Patience]

Slats - I've had 3 fairly lengthy posts simply disappear as I was finishing them, so I've learned to  key in a notes page and copy it into the forum form. Ain't technology great?!

Glad to hear you're feeling good today and that you're back to abnormal again. How will we ever recognize normal if and when it happens? Can't wait to try!  10 more days of orange diamonds for me and then ? Will they have chased away the Bad Guys forever? I sure hope so - for myself and for everyone else here who is struggling against them.

[slats1056]

Thanx Patience. I definitely am not a techno-geek. I know just enough about computers to get into trouble! Man, ten more days is great. Then it's count down to SVR!!!!!!!!!!

[MJ82]

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