Author Topic: Harvoni Side effects (Read 2190074 times)

KC · « **Reply #2300 on:** June 09, 2015, 10:43:10 pm »

Hey Sister.... What Katie said!

Chin up girl you are one day behind me. I am about to take my last Harvoni in one hour!!!!!! You sound like you are having a week like my week #9 was. It will pass, I promise. I came out of it as fast as I went into it. Just take one hour at a time if that is what ya need to do but don't give up the ship. You are at the finishing line girl. I am so sorry your having a tough time but we are all different and ya never know what to expect. Right now I hope you can look up and think about having the God awful monster out of your body!

Keep in touch and let us know your progress and I will do the same. Hey, we are pretty much on the same page at this point. Take care & smile!

sisterbland · « **Reply #2301 on:** June 10, 2015, 07:57:10 am »

Thank you so much Katie and KC for the encouragement and kind words!!!

KC · « **Reply #2302 on:** June 10, 2015, 08:08:35 am »

I sent you a personal message after receiving yours. Hope you got it. Also, hope you're feeling better today! Your last day of Harvoni!!!!

rchiocchio · « **Reply #2303 on:** June 10, 2015, 09:11:56 am »

Quote from: concerned father on June 09, 2015, 10:53:22 am

Ryan, please keep us informed. Just like you, my daughter has been infected since birth. She is now 20 years old and will start treatment in late August.

I certainly will. So far the side effects have been some fatigue and headaches; if anything changes there I'll be sure to post. I'll definitely update again after my first test with my numbers.

CHepCFree · « **Reply #2304 on:** June 10, 2015, 09:37:22 am »

I am so happy for those who have made in through with no side effects. Unfortunately there are some of us who have been damaged and now have decreased quality of life. I have started a closed Facebook (FB) page entitled Damaged by Harvoni for those who have completed Harvoni and are having remaining or new side effects that have limited their daily life ability or have decreased there quality of life. If you are such a person and interested in the FB, please search for it and send a request to be added to this closed group.

concerned father · « **Reply #2305 on:** June 10, 2015, 10:00:10 am »

Did you take precautions like changing your tooth brush and razor on regular basis.

SunIsOut · « **Reply #2306 on:** June 10, 2015, 03:11:31 pm »

Hello Everyone,

My 12 week EOT came back with good results and still undetectable. My platelets are still low 59. My energy is really good but the tinnitus is excruciating and constant all day long. I set up an appointment as my doctors have encouraged me to do.

I shared with my employer that I was going to go through this treatment and was not sure if I would have side effects. I had finished a 5 year project and was going to need to transfer to a different company or different business unit as they do not use my skills on an everyday basis. I needed to stay where I was as I had the sick time if I needed it.

So I got laid off 2 weeks ago and I had been rated a 2 for each performance year where 1 is the highest rating. I was very surprised as I did not think that would happen.

Now I have to sign for a severance package and give up any disability insurance or fight it. The problem is if I accept the severance then get a relapse, plus this tinnitus being so bothersome that I will be be boxed in a corner with no insurance and no disability if the tinnitus does not get better.

I for one of the very first times in my life do not know what to do!

Sometimes America can really be disappointing.

Wilson · « **Reply #2307 on:** June 10, 2015, 09:13:50 pm »

Just went today, 4 months and 15 days post treatment. Took my blood test. I am positive I am clear. I wish everyone hear the best I hope you all live long and play hard.

Wilson

tecgirlrn · « **Reply #2308 on:** June 11, 2015, 01:12:01 am »

I've got 3 weeks left on Harvoni.

For approx 3 yrs prior to Harvoni, I struggled with fatigue, nausea, diarrhea and joint pain. Prior to treatment I was Stage 3, grade 2-3. I was infected 36 years ago at age 2 post vaccine. I have been waiting years for a treatment that didn't require interferon or ribavirin.

My heart goes out to the folks with major side effects. For me I had severe anxiety and restlessness the first 3 days, I literally could not sit still. On day 4 the symptoms subsided and I noticed I was VERY thirsty. IN fact nothing seems to quench my thirst except water with A LOT of lemon juice added. I get headaches if I don't drink enough fluids, I have not had other symptoms. I take my pill each day at 1230 after I eat.

@lolacme I have been able to work the entire time on this medication, I am nurse and have worked as much as 40-50 hrs a week. I also have been able to work out 3-4 times a week, in fact most people who know have mentioned that I seem to have more energy. After reading the Harvoni medication information I was worried I would have debilitating symptoms.

I had read the forums prior to starting Harvoni, each week I have thrown out my toothbrush and razors. I just threw out all my makeup and brushes (the virus probably didn't get on them, but it doesn't cost much for peace of mind).

On day 28 my first Viral Load test came back undetected, likewise the second test.

For those who have not had success, please do not give up hope. I have read there is another medication likely to be approved next year.

hepcsincebirth · « **Reply #2309 on:** June 11, 2015, 11:23:35 am »

I would not share treatment status with my employer. So far the side effects with harvoni for most people have been mild, but the stigma and ignorance of hcv is widespread. If you do have symptoms, you can always blame it on the flu, overworking, etc. Most coworkers/employers know the feeling and wouldn't give it a second thought.

In terms of side effects, other than fatigue and headache (which are listed in the documentation) other side effects seem almost random. There is no doubt that side effects exist, but no medication is perfect and the chance to clear hcv far outweighs the side effects for most people. A very small number of those taking harvoni will experience long term side effects, but these pale in comparison to the side effects (both short and long term,) of interferon and ribavirin.

In harvoni, researchers found a combination of drugs that worked, with fewer side effects than in the past, and the marketers went to work selling it to the public. Drug companies always understate the side effects, otherwise no one would take the medications unless they were in a life or death situation. For most people (90%), harvoni is a cure (as currently described,) but out of the hundreds of thousands taking it, 10% or so will not be cured. 10% of 100,000 is 10,000, which is a lot of people for whom harvoni will fail, but it is still much better than any treatment before it.

The funny thing about hcv is the replication cycle within the liver is still not 100% understood. Researchers take a calculated guess, go into trials, and see what works. So far, this is the best they have found.

Please remember, this is a side effects blog. Most people post negative experiences and very few post positive ones. If you could force everyone on Harvoni to post their experience, this thread would be much more upbeat.

Good luck to all on Harvoni.

hepcsincebirth · « **Reply #2310 on:** June 11, 2015, 11:29:08 am »

I am now 2.5 weeks post EOT and don't notice much difference from when I was on treatment. The only change I can tell is there is a little less fatigue in the evening, and I am not nearly as thirsty as I was on treatment. The slight sunburn feeling around the eyes and cheeks that I occasionally had on treatment is also gone.

2rivers · « **Reply #2311 on:** June 11, 2015, 11:49:01 am »

I'm at 18 days now in a 12-week treatment. So far I've only had one bad day (around the 10th day of Harvoni) - felt like I got run over by a truck, but it passed by the next day. I wouldn't say I'm 100%, but my energy levels are at least 90%. I've been playing tennis 5 times a week, biking, and doing a lot of very heavy yard work and landscaping.

Of course I've been pounding back the water, and have not noticed any other side effects aside from a slight "iron" taste from the water. No headaches, no sun rash, nothing. I realize that this could change in the future, but so far so good. I feel badly for those of you who are experiencing nasty side effects. All I can say is hang in there because the cure is worth it.

KC · « **Reply #2312 on:** June 11, 2015, 02:14:49 pm »

I would NEVER share anything about my Hep C with my employer. It is nobody's business. I had an eye doctor refuse to treat me because he thought he or his staff might catch it by my tears. I was humiliated the way he treated me. The stigma and ignorance that comes with this disease is huge.

KimInTheForest · « **Reply #2313 on:** June 11, 2015, 02:48:51 pm »

Quote from: KC on June 11, 2015, 02:14:49 pm

I would NEVER share anything about my Hep C with my employer. It is nobody's business. I had an eye doctor refuse to treat me because he thought he or his staff might catch it by my tears. I was humiliated the way he treated me. The stigma and ignorance that comes with this disease is huge.

I agree with KC. I once told a dental hygienist when I was in for a teeth cleaning. He spent the entire hour asking me "Aren't you afraid you are going to die of liver cancer?" while I was essentially a hostage in the chair with my mouth open. Another time I told a dental assistant taking x-rays. After she moved the x-ray machine's plastic cone away from my cheek, she scrubbed it down vigorously with Lysol. Those were both early experiences - within 1st year of my being diagnosed in 1995. I quickly learned that the vast majority of people are just too ignorant and misinformed to be trusted with this information. So for my own health, happiness and survival, I have told virtually no one (apart from those two dufuses) in the past 20 years.

I plan to out myself and do some advocacy work once I can say: "I had Hepatitis C. I don't have Hepatitis C." Too bad it has to be that way. But non-disclosure in the face of such widespread public ignorance and stigma is actually the self-honouring choice. I consider it a sign of empowerment that I am putting my right to survive and be happy ahead of other people's non-need to know information they cannot handle.

wellness to all,
kim

sjking · « **Reply #2314 on:** June 11, 2015, 03:11:47 pm »

Hello Everyone,

Tomorrow I will have been on Harvoni for two weeks. I can't honestly say I've noticed any difference in my day to day life. I take it in the morning and was so worried about side effects that I drank a half a gallon of water a day. My theory was that the water would help and then I wouldn't have to worry about insomnia at night. Some days I didn't drink so much water and felt no different. The only for sure thing that happened so far was I was extremely emotional for a day. I had a 1.5 million viral load with no liver damage so maybe that's why I don't have many or any side effects so far.

I just read another person's comment about changing tooth brushes and razors. Do you really think the study participants all did that? I don't, but just in case I just threw them all out.

SunIsOut · « **Reply #2315 on:** June 11, 2015, 04:29:50 pm »

Quote from: KimInTheForest on June 11, 2015, 02:48:51 pm

I agree with KC. I once told a dental hygienist when I was in for a teeth cleaning. He spent the entire hour asking me "Aren't you afraid you are going to die of liver cancer?" while I was essentially a hostage in the chair with my mouth open. Another time I told a dental assistant taking x-rays. After she moved the x-ray machine's plastic cone away from my cheek, she scrubbed it down vigorously with Lysol. Those were both early experiences - within 1st year of my being diagnosed in 1995. I quickly learned that the vast majority of people are just too ignorant and misinformed to be trusted with this information. So for my own health, happiness and survival, I have told virtually no one (apart from those two dufuses) in the past 20 years.

I plan to out myself and do some advocacy work once I can say: "I had Hepatitis C. I don't have Hepatitis C." Too bad it has to be that way. But non-disclosure in the face of such widespread public ignorance and stigma is actually the self-honouring choice. I consider it a sign of empowerment that I am putting my right to survive and be happy ahead of other people's non-need to know information they cannot handle.

wellness to all,
kim

I did not tell them what I had just that that it was a new treatment. In hindsight should have just kept it quiet.

housefire · « **Reply #2316 on:** June 12, 2015, 07:01:50 am »

Update:
On day 12 with Harvoni. No more side effects at all. It seems I have more energy then I've had in years. Is it just in my head? Don't know and don't care.

Debula · « **Reply #2317 on:** June 12, 2015, 10:41:55 am »

Quote from: CHepCFree
link=topic=1653.msg23183#msg23183 date=1433943442

I am so happy for those who have made in through with no side effects. Unfortunately there are some of us who have been damaged and now have decreased quality of life. I have started a closed Facebook (FB) page entitled Damaged by Harvoni for those who have completed Harvoni and are having remaining or new side effects that have limited their daily life ability or have decreased there quality of life. If you are such a person and interested in the FB, please search for it and send a request to be added to this closed group.

Hi CHepCFree
I am wondering how you know that it is the Harvoni that has caused your problems

I think I asked you once before but I must have missed the answer.
I understand that we are all different and react differently to medications but how can you be so sure it is the Harvoni? I don't mean to sound disrespectful but could it be something else that happened that just coincided with your Harvoni TX?

I feel that Harvoni has helped so many of us (including me) and I have not had any side effects that are not manageable I felt horrible most days before Harvoni and I feel pretty much the same now. Except that now I am actually UND so I can only hope that I will start to feel better as my liver starts to improve and function better
I have to also add that I have a thyroid condition that could be causing some of my symptoms such as fatigue body ached etc...
I guess what I am trying to say is that it may not be Harvoni that caused you to feel bad. It could be a number of other medical conditions that have just not been identified yet

I hope you start to feel better

Deb

pandaman · « **Reply #2318 on:** June 12, 2015, 10:53:44 am »

On day 5 of Harvoni. So far I am less fatigued, and I'm aware that I dream all night long. Also, my digestive issues are better then they have been in years.

As of yet, I've not had any negative side effects.

Whether it's the Harvoni or the placebo effect, I'm feeling much more upbeat than I have in a long time.

KC · « **Reply #2319 on:** June 12, 2015, 11:55:47 am »

I finished my 12 week TX this week. I too felt very energized while taking the Harvoni. Most of my 12 weeks were unremarkable except how great I felt. I did have some insomnia once or twice a week but overall, I felt wonderful.

For some reason week #9 was full of side effects and anxiety. Do remember, everyone is different so all we can do is share what is happening to us as an individual. I believe some get horrible side effects because I experienced it that 1 week. All I can say, as I've said before: DRINK LOTS OF WATER! Flush that virus out of your body!

KimInTheForest · « **Reply #2320 on:** June 12, 2015, 12:50:43 pm »

Congrats, KC, on finishing your 12-week tx this week! Good luck on the future labs.

kim

ssalerno1 · « **Reply #2321 on:** June 12, 2015, 01:26:36 pm »

Can I use CLA (conjugated linoleic acid) while taking Harvoni?

concerned father · « **Reply #2322 on:** June 12, 2015, 02:19:42 pm »

You should refer that question to your Doctor.

ssalerno1 · « **Reply #2323 on:** June 12, 2015, 02:52:39 pm »

I have a call in. thanks. just looking for other experience with Harvoni/CLA if out there

Katie · « **Reply #2324 on:** June 12, 2015, 02:58:02 pm »

Quote from: KC on June 12, 2015, 11:55:47 am

I finished my 12 week TX this week. I too felt very energized while taking the Harvoni. I had some insomnia along the way and week #9 was horrible. I had lots of side effects that came and went in a week - 10 days. I hadn't felt that good (except for #week 9) in years. Everyone is different so all we can do is share what is happening to us as an individual. I believe some get horrible side effects because I experienced it that 1 week. All I can say, as I've said before: DRINK LOTS OF WATER! Flush that virus out of your body!

I experienced the same thing KC. I had more energy and felt better than I had in YEARS while on treatment, except for week 8 & 9 for about 10 days and then, one morning, I woke up great again. I miss my orange pill as I am not nearly as energized. If fact I am fatigued and I am at week 14 post treatment. I seem to be getting a bit better slowly so as long as I remain Undetected, I believe, little by little I will improve and I am looking forward to that and excited by it. I have another blood draw in 2 weeks and am anxious for to it along with being very confident.

Hope everyone has a great weekend and continues on to a complete cure feeling strong!

Katie

Debula · « **Reply #2325 on:** June 12, 2015, 07:07:04 pm »

Congratulations on finishing your 12 weeks KC
I WISH YOU EVERLASTING SVR

I just started my 3rd bottle and have 3 more to go and I wish I could say that I feel more energized but I don't. I feel pretty much the same as before. Fatigue is a constant with me and I was so hoping I would get some of the energy you all talk about.
I did have severe itching before TX and I am happy to say it is gone!!

I hope you start feeling better Katie it is sad that so many weeks later you are still feeling poorly.

I hope everyone has a great weekend

Katie · « **Reply #2326 on:** June 12, 2015, 07:55:50 pm »

Thanks Debula. Actually I shouldn't complain as I feel much better than before treatment with many things improving. My insomnia and brain fog, which I suffered with for years, are totally gone. I am just weak with no endurance and I have always been a worker, even before treatment. I am sure it will improve with time and my projects will just have to wait. I tried to build a nicely done bookcase and ripped down some boards for it but there it sits! HA! Certainly not that big of deal, just so unlike me and of course, my beautiful gardens are suffering. Fortunately my ground cover is abundant too (overgrown) so it is hiding many of the weeds, so there is a silver lining! Life is good and beautiful and every moment is precious.

Katie

Mugwump · « **Reply #2327 on:** June 15, 2015, 01:27:14 am »

http://forums.hepmag.com/index.php?topic=2853.msg23417#msg23417

The growing concern about the minor side effects of Harvoni has been blown all out of proportion IMO. We need a way to gain perspective and perhaps to better help others to understand the minor troubles one can run into when taking this medication.

I would ask the moderators to please start a thread which can be some sort of a poll that does not accept comments..... I know A THREAD WITHOUT COMMENTS COMING FROM MUGWUMP hell has frozen over LOL Then perhaps close the side effects threads altogether with redirects to the poll! It is jamming my mail box and I hate missing important posts like the one that I linked to starting this post!!!!!!

The poll would be simple
A check box list of side effects experienced something like this;

Headaches y/n Severity 1-10
Nausea or Vomiting N or V
Confusion "brain fog" y/n
Increased or low blood pressure up/down
Muscle weakness or pain y/n
Anxiety y/n Severity 1-10
Heart flutter "pounding in the chest" y/n
Tinnitus y/n
Loss or gain of weight y/n loss/gain
Vision changes y/n

This should about cover the number of complaints that some have reported.
To some extent I have experienced some of these symptoms But again nothing I have gone through remotely scared me or caused me to worry about anything other than ridding myself of HCV
ONCE AND FOR ALL

Best wishes
Eric

Lynn K · « **Reply #2328 on:** June 15, 2015, 02:26:40 am »

Hi Eric

My answer to all is none of the above.

Hum no side effects and cured vs complications of cirrhosis and early death

I think I vote for Harvoni

TTSP · « **Reply #2329 on:** June 15, 2015, 07:22:12 am »

@mugwump

A good start would be for everyone to quit trying to diagnose one another.

icantwait · « **Reply #2330 on:** June 15, 2015, 08:37:41 am »

I just got my 12 post treatment results, undetected!!! Other than a few minor headaches and some lethargy, I had almost no side effects. I had some kidney pain for a couple of days, however that was probably unrelated to the treatment. I felt some guilt for having a self infected disease and it took a month of fighting the insurance to get approved. It is so nice to know that this ticking time bomb is gone. Good luck to all of you.

dragonslayer · « **Reply #2331 on:** June 15, 2015, 09:01:11 am »

Quote from: Lynn K on June 15, 2015, 02:26:40 am

Hi Eric

My answer to all is none of the above.

Hum no side effects and cured vs complications of cirrhosis and early death

I think I vote for Harvoni

Ditto!

sjking · « **Reply #2332 on:** June 15, 2015, 09:57:21 am »

I agree with Mugwump, the thread scared me and I would hope that nobody is afraid of this medication. It's nothing like Interferon and Ribavirin that almost killed me. It's fantastic! I like the idea of a poll which would help people have a more realistic perspective. We are truly blessed to have it!

Mugwump · « **Reply #2333 on:** June 15, 2015, 10:01:36 am »

Quote from: TTSP on June 15, 2015, 07:22:12 am

@mugwump

A good start would be for everyone to quit trying to diagnose one another.

Right on!!
Mountains and mole hills comes to mind.

Bob V · « **Reply #2334 on:** June 15, 2015, 12:20:20 pm »

Here's my take on this. Like my profile says I did the orginal Interferon 2x and that almost killed me. This is one reason I refused tx until Harvoni, I was going to pass on S&O too. I never did the Ribavirin/interferon tx so I can't comment on that. But I got a new PCP 2yrs years ago, also new GI guy 1.5 yrs so I knew I was going to have to go through explaining why I refused to treat my HepC. My new GI could not understand why I didn't get on the R&I treatment, his selling point was it was far better tolerated then the old interferon tx. After a couple of visits he when back to the why didn't you treat this. I said doc listen to me if you told me I had only a couple of months to live if I didn't take a drug with Interferon in it I still would not take it. This is just to give people who did the R&I a perspective of where I'm coming from.

I have several family/friends that I've been trying to at least think about treating their HecC since last Oct. All of them did the original Interferon too. Besides the side effects of the treatment was the feeling that they/me were lied to from the docs and drug companies about the effectiveness. We where told take this for 6 months and there's 80% cure rate, total BS. It quickly turned into 1-1.5yrs, not one us got cured.

Now that my brother and I reached SVR 12 I'm starting talking to them about treatment again. I can't say there's no side effects because after week 3 or so I did feel tired and crappy every day. My friends are like me pre tx they feel fine so why treat it. Understand they know the potential issues of not treating their HepC but after 40yrs it kind of a tough sell.

Look don't get me wrong I'm stoked I got cured and I think Harvoni is a wonder drug. I do think they should get on Harvoni but I can't say to them you won't have side effects.

dragonslayer · « **Reply #2335 on:** June 15, 2015, 02:49:08 pm »

Hey bob,

>>Look don't get me wrong I'm stoked I got cured and I think Harvoni is a wonder drug. I do think they should get on Harvoni but I can't say to them you won't have side effects.<<

No, but you Could say to them that current data shows Harvoni minor side effects effecting less than 20% of those who take it! etc, etc, etc.

hope4cure · « **Reply #2336 on:** June 18, 2015, 10:03:26 am »

I Just got the call yesterday and after 8 weeks of Harvoni, then 12 weeks of waiting, I am cured!

My side effects while on the medication were only fatigue. Some days I would not feel tired at all, most days I would little bit tired for an hour or two and some days I would feel really tired for 5 to 6 hours during the day. I always found myself taking a long 2-3 hour afternoon nap during the weekends.

All in all, I have zero complaints and I am so thankful to be cured!

I hope everyone gets to have the feeling I felt when I got the final call. Words can't truly describe it.

Bob V · « **Reply #2337 on:** June 18, 2015, 10:13:08 am »

hope4cure

CONGRATS!

Bob V · « **Reply #2338 on:** June 18, 2015, 10:17:32 am »

Paul
I hear you but for people that need to be functioning on a high level being tired might be a deal breaker.

KC · « **Reply #2339 on:** June 18, 2015, 11:23:01 am »

My doctor tells me it takes a year of "undetected" to say your cured.... I am 1 week done with it and feel fine so far. I was the opposite while on Harvoni, I had so much energy I didn't know what to do with it and couldn't sleep a couple nights out of the week. Who knows? Congrats hope4cure!

Karen1124 · « **Reply #2340 on:** June 18, 2015, 11:48:22 am »

Congratulations!!!!! Hopeforacure!!!
I love hearing this news!! Life is good!!!! Karen

Mugwump · « **Reply #2341 on:** June 18, 2015, 01:13:17 pm »

Quote from: KC on June 18, 2015, 11:23:01 am

My doctor tells me it takes a year of "undetected" to say your cured.... I am 1 week done with it and feel fine so far. I was the opposite while on Harvoni, I had so much energy I didn't know what to do with it and couldn't sleep a couple nights out of the week. Who knows? Congrats hope4cure!

To clarify the relapse rate after 12 weeks goes down considerably. Therefore 24 week is considered svr functional cure. I do not know if there are any recorded post 24 week svr relapses reported. Perhaps future data might be corrupted by re-infects happening for reasons like continued drug use with an infected partner and similar statistical anomalies. So it will take a while to be certain that 24 week svr is a full cure for all who do not have a high re-infect risk through their life choices.

I can readily understand why a GI or GP would be cautious about declaring "cured" at 24 week svr until the drug has been around for a few years.

KC I fully understand your doubts and know that you need a way to dismiss them.

Best wishes to you and FYI my weakness post treatment is letting up, the muscle weakness and other slight issues that were caused by treatment are all fading. My stamina is back to the point where I can and did row across several kilometers of a lake against a very stiff wind and driving rain! AND STILL fish all day without a care in the world!
Harvoni is a miracle and we are truly blessed to have lived long enough to see this wonder of science and human care happen.

Bless all.

Eric

Debula · « **Reply #2342 on:** June 18, 2015, 04:46:12 pm »

Hope4cure

CONGRATULATIONS!!!

I hope to get there one day!

KC · « **Reply #2343 on:** June 18, 2015, 05:36:00 pm »

Quote from: Mugwump on June 18, 2015, 01:13:17 pm

To clarify the relapse rate after 12 weeks goes down considerably. Therefore 24 week is considered svr functional cure. I do not know if there are any recorded post 24 week svr relapses reported. Perhaps future data might be corrupted by re-infects happening for reasons like continued drug use with an infected partner and similar statistical anomalies. So it will take a while to be certain that 24 week svr is a full cure for all who do not have a high re-infect risk through their life choices.

I can readily understand why a GI or GP would be cautious about declaring "cured" at 24 week svr until the drug has been around for a few years.

KC I fully understand your doubts and know that you need a way to dismiss them.

Best wishes to you and FYI my weakness post treatment is letting up, the muscle weakness and other slight issues that were caused by treatment are all fading. My stamina is back to the point where I can and did row across several kilometers of a lake against a very stiff wind and driving rain! AND STILL fish all day without a care in the world!
Harvoni is a miracle and we are truly blessed to have lived long enough to see this wonder of science and human care happen.

Bless all.

Eric

KC · « **Reply #2344 on:** June 18, 2015, 05:46:39 pm »

Hi Eric,

I don't know why my Dr. told me it would take a year of being undetected. He is an infectious disease doc and he runs a Hepatitis C clinic the only one in Fla. He just told me that on my last visit, I thought it was 12 weeks also. Again, who knows we are beginners.

I am feeling very good as well and I am only a week and a day done with Harvoni. I was just saying yesterday that my aches and pains (bone & muscles) have all pretty much subsided. I had some of that prior but now that I'm off the Harvoni, it is much better. SO, here again "the waiting is the hardest part." I try not to think about it and go on with life. If I don't clear, the doc says there is something else new. Not that I would jump into it but that's good to know.

I am so happy to hear that you are doing so well, keep up the good work and I hope you catch lots of fish!!!!

lolacme · « **Reply #2345 on:** June 21, 2015, 08:21:14 pm »

Been on Harvoni 9 days. Trouble with constipation. No diarrhea at all. I feel really bloated.

jberlin · « **Reply #2346 on:** June 21, 2015, 09:17:49 pm »

lolacme, good luck and wishing you SVR! And yes, the school of thought is if you are still virus undetected after 12 weeks post treatment, you are considered cured. The old CDC rule was 24 weeks, not sure it was ever 52, but maybe, but if UD at 12 weeks post treatment, let go a yell! -jack

nadewitt · « **Reply #2347 on:** June 23, 2015, 08:55:58 am »

I woke up a couple of weeks ago with 2 itchy bumps that I assumed were bug bites. Every day sees more of these bumps appearing and they are very annoying. It is not like the horrible itchy rash I developed in previous treatments but I am wondering if this is a side effect of Harvoni. If it is bug bites, I don't know where they are coming from and my husband hasn't been affected. I don't spend any time out doors, just home, work and back home. Has anyone else experienced this?

Also, many of you posted that you couldn't bring yourself to throw away the pill bottles that your medicine came in. I finally found something very useful to do with mine. I heard about a blind man in my community that collects and cleans old prescription bottles. When he has gathered enough, he sends them to Africa to be used there. In lots of places there when the people are given pills, they have to find their own container to put them in. The old used and cleaned pill bottles are recycled and put to good use.

jberlin · « **Reply #2348 on:** June 23, 2015, 09:27:20 am »

nadewitt,

The answer is always "it could be, please see your health care specialist". One thing we have learned across all the treatments here, is no 2 people seem to be affected the same way, while many similarities we all seem to manifest our bodies' dislike of these drugs in strange ways. I remember being put on a daily anti-histamine and being told to be generous on my application of hydrocortisone cream on my various rashes to stop the itching. Let us know if you learn more.

Interesting idea on the pill bottles, I wonder if there are organized efforts out there somewhere? I just made sure to put in the plastic recycling bin. Best wishes, jack

Bob V · « **Reply #2349 on:** June 23, 2015, 10:15:35 am »

I woke up a couple of weeks ago with 2 itchy bumps that I assumed were bug bites. Every day sees more of these bumps appearing and they are very annoying. It is not like the horrible itchy rash I developed in previous treatments but I am wondering if this is a side effect of Harvoni. If it is bug bites, I don't know where they are coming from and my husband hasn't been affected. I don't spend any time out doors, just home, work and back home. Has anyone else experienced this?
-----------
I broke out in a rash/bumps manly on my chest and back but some on my legs/arms last week. Never had this before. I noticed this just after pool swimming so my original thinking was the pool, still might be. Anyway, I went to my dermatologist and biopsy came back that I have a bacterial infection. My doc said I don't understand how you got this, very strange.

I'm not saying this is Harvoni related since I took my last dose March 1.

Katie · « **Reply #2350 on:** June 23, 2015, 04:14:30 pm »

Hi Bob, I suppose the infection could have come from the pool if the chemicals weren't up to the needed level however I know of another person who developed a nasty rash (don't know if it was bacterial) because she would not put her washed laundry directly into the dryer. It would sit in the washer damp overnight on a regular basis and she developed a rash on her face which ended up all over her body. It took a while for them to figure out what was going on.

I am not saying that is what happened to you, but sometimes little things like that can cause unexplained skin conditions.

Hope both you and nadewitt both get better as that can really be uncomfortable!

Hope everyone is enjoying their summer and moving towards good health!

Katie

Bob V · « **Reply #2351 on:** June 23, 2015, 04:42:44 pm »

Katie
I gave you guys the Cliff notes version on this. I had two doc's both were like what is this and we went through all the laundry, clothes, soap etc questions. They didn't think it was the pool and no one else at the pool had issues. I do the laundry and I'm VERY picky about it. I wash my running/biking gear as soon as I'm done, it NEVER sits in the hamper. Also, the pool is outside so I don't go into the gym if I did I'd be looking at that. It seems to be getting better so I guess the antibotics are working.

Katie · « **Reply #2352 on:** June 23, 2015, 05:01:04 pm »

Ya Bob, Weird things just pop up sometimes and I figured you had it checked out. Glad the antibiotics are working!

Katie

Michael J · « **Reply #2353 on:** June 25, 2015, 07:47:54 am »

I am at week 9 and had thought for awhile that I had been given a placebo, but the last week or so has been very rough with fatigue, muscle weakness and drowsiness. As a farmer I work every day outside and doing physical tasks. I have been taking the Harvoni in the AM. Maybe I will switch to evening dosing. Sound familiar ro anybody else?

Bob V · « **Reply #2354 on:** June 25, 2015, 08:59:33 am »

Michael
I'm retired but I do exercise every day. For me the first few weeks on Harvoni were uneventful but one day it hit me. My strength and endurance really suffered, this lasted for a few more weeks then it got a little better. I didn't go back to feeling like pre tx until 2 days post tx.

I took my Harvoni after my workout, around 1PM and took a nap. Since Harvoni is a one a day pill the half life is kinda long..not sure if the time you take make all that much difference.

Look we are all different and others who post had different experience with Harvoni then I did this is just my .02.

Good luck!

Debula · « **Reply #2355 on:** June 25, 2015, 11:15:33 am »

Quote from: Michael J on June 25, 2015, 07:47:54 am

I am at week 9 and had thought for awhile that I had been given a placebo, but the last week or so has been very rough with fatigue, muscle weakness and drowsiness. As a farmer I work every day outside and doing physical tasks. I have been taking the Harvoni in the AM. Maybe I will switch to evening dosing. Sound familiar ro anybody else?

Hi Michael
Today is week 10 for me and I am feeling really fatigued and my brain fog seems to be worse. I just feel like someone zapped the energy right out of me. Not sure if this is Harvoni related because I have felt this on and off before TX too. I hope this get s better as I still have a LONG road ahead. I take my Harvoni at 8:00 AM sharp

Quote

I didn't go back to feeling like pre tx until 2 days post tx.

Bob I hope I get to where you are at some day.

Stay well
Deb

Michael J · « **Reply #2356 on:** June 25, 2015, 01:13:24 pm »

All of a sudden I feel like I am 105 years old. I am going to try dosing at 4 PM and see if that helps me during the day. Sometimes I just have to sit down and rest my head and nod off. Don't know if it is Harvoni or being 66 and trying to work like I am 26. I'll post if the change in dosing times helps. My PCP had never heard of Harvoni until I told her I was going to take it, so she has no explanation except to order more of the standard labs. No nausea, headaches. Just bone tired weak and weary, and I could sleep 12 hours if life allowed me that luxury. This is almost as bad as the interferon/ribavarin I had to quit because of the debilitation. But not quite. Just putting this out there to share with others who may be having the same symptoms. Harvoni or decrepitude? Hoping it is the Harvoni.

jberlin · « **Reply #2357 on:** June 25, 2015, 01:23:04 pm »

Michael,

You are a champ! Everyone fighting to cure their Hep C through treatment are champs in my book! Hang in there, we are with you, it will be over soon and hopefully you will be done forever like I am! -jack

KC · « **Reply #2358 on:** June 25, 2015, 11:52:34 pm »

Quote from: Michael J on June 25, 2015, 07:47:54 am

I am at week 9 and had thought for awhile that I had been given a placebo, but the last week or so has been very rough with fatigue, muscle weakness and drowsiness. As a farmer I work every day outside and doing physical tasks. I have been taking the Harvoni in the AM. Maybe I will switch to evening dosing. Sound familiar ro anybody else?

Same thing happened to me Michael, I felt wonderful for the first 5 weeks and it went down hill big time for a week or so, then felt good again. Been off it for 2 weeks now and feel fine. It is a very strange drug I will be tested next week to see where I am as far as detected or not?

Katie · « **Reply #2359 on:** June 26, 2015, 12:30:14 am »

Fingers crossed for you KC!

Hope you feel better Michael. I felt great during my treatment EXCEPT for weeks 8 & 9. Couldn't really keep up with just daily activities and in such a slump. Never have experienced anything like it and then, one morning I was great again. Hang in there!

Katie

KC · « **Reply #2360 on:** June 26, 2015, 12:35:33 am »

Hey girl..... how are you doing? I haven't been on the site much but have been thinking about you. We are on the same time frame, remember? I am 2 weeks off the Harvoni and feel fine. How are you? I go for labs next week and hoping all is well. Wow, what a journey it's been. Praying that you are good, let me know!

Katie · « **Reply #2361 on:** June 26, 2015, 12:42:30 am »

Hey KC..I responded to your message.

Thank you! Actually I am 16 weeks post treatment...way ahead of you, and hope your post treatment is a breeze!

Katie

KC · « **Reply #2362 on:** June 26, 2015, 01:01:41 am »

I know you are way ahead of me but were having problems. I must have screwed up on my post. Are you better? Hope so!

Michael J · « **Reply #2363 on:** June 26, 2015, 06:26:55 am »

Hey Katie and KC --- Thanks for the replies. Reading your shared experiences helps me as I muddle through the doubts and depression. I think that people who have spent their lives in construction , farming, and other constant physical endeavors take it pretty hard when their "machine" weakens and sputters. We think we earned our worth in life through exertion and physical abilities. Not to say that those in other walks of life don't feel as bad when they feel broken down, but there seems to be a certain poignancy for us wood, soil, steel, or stone slingers. I am grateful for your reading and writing.

livinginthemoment · « **Reply #2364 on:** June 26, 2015, 10:46:44 am »

I haven't been on here in a while - got through my side effects and my ovary bursting (not fun - just an ovarian cyst). Had my labs done at 3 weeks exactly from starting Harvoni and my labs came in as Undetected. Even the Log is undetected. I know its not "I'm cured" but to drop from 6 mil + to undetected in 3 weeks has just made me want to dance on the ceiling! All of the other tests (AST/ALT, etc) are all at the bare minimum as well. So I KNOW this medicine is working!!!! I am soooo happy right now, relieved really. 8 more weeks to go on the meds and I am hoping for an early birthday present of a "you are cured" by December.

rchiocchio · « **Reply #2365 on:** July 01, 2015, 05:26:07 pm »

Went for my first test at 22 days... viral load is undetected. My next appointment with my doctor is in two weeks. Will update again then, but I guess all I should expect is confirmation that I am on my way to being 100% cured

.

2rivers · « **Reply #2366 on:** July 01, 2015, 05:40:35 pm »

Quote

Went for my first test at 22 days... viral load is undetected. My next appointment with my doctor is in two weeks. Will update again then, but I guess all I should expect is confirmation that I am on my way to being 100% cured

Good news RC. I'm at 5 weeks in. My tests were done at 4 weeks (about a week ago). Got all the results except viral load yesterday. All liver enzymes are now in the normal - low normal range. Will have viral load by Friday...hopefully it will be "undetected".

Side effects have been very minimal...haven't changed my daily routine at all.

DC Hillite · « **Reply #2367 on:** July 05, 2015, 05:54:08 pm »

I'm at day 7 of treatment with Harvoni. Initial virus count was approx. 6M, then down to 0.5M most recently. Since it doesn't go away by itself, I'm getting treatment. I've been told to take my pill first in the morning, along with Protonix (stomach acid blocker).
Day #2 had me feeling like my liver was in revolt with moderate discomfort and very mild nausea about 2-3 hours after Harvoni intake. Luckily, that only lasted 2 or 3 hours.
Day #5 had me feeling totally exhausted by mid afternoon. I went home and lied down for a few hours. When I got up to rehydrate, chills came over me as if I was coming down with a nasty case of the flu. That only lasted for an hour or so, but I did spend a few more hours in urgent care where my blood was drawn for a variety of things and my chest x-rayed.
I'll keep you all posted. I hope I end up cured and not one of the Harvoni failures also posted on this site...

nadewitt · « **Reply #2368 on:** July 05, 2015, 06:12:50 pm »

Please tell me that this increased joint pain will go away when I am finished with treatment! It has gradually gotten worse each week. I am on week 21 so I will be finished soon. My doctor hasn't ordered a viral load test since week 4 since I was undetected then. My liver enzymes at week 12 and week 20 were still high. From everyone's posts, most of the time the liver enzymes dropped to normal when you become undetected. It makes me nervous.

cure4me · « **Reply #2369 on:** July 05, 2015, 06:29:55 pm »

You know I hate to say it but I never had headaches. I just completed 3 months of Harvoni last week and am going to the doctor tomorrow for test results. I was F4 but I didn't have fibrosis. I did have digestive issues and nausea, not all the time but now and again. I did have some weak moments. Definitely had total lack of sleep, that to me is the worst. I had constipation not loose bowels. I was UD the first 30 days so here's hoping I am cured. I have to tell you I walked 2-3 miles every couple of days and I have lost lots a lot of weight, due to surgery (hiatal) right before my Harvoni. I have never gotten all that tired, I got more tired before I started taking Harvoni. I always took my harvoni at night. I have also worked the entire time, part-time though. When I came home from work I would usually take a 2 mile walk (not a run lol)twice a week and once on the weekend. Just a few notes for you all to help I hope. Hope this all makes sense to you.

shipinthenight · « **Reply #2370 on:** July 05, 2015, 11:32:52 pm »

I used Harvoni for three months and could not wait to get done using it. The first month, my co-pay was $3,341.00. Who can keep affording the medication? My charge card ran up and by the time I was done, I spent over $7,000.

Redbird29 · « **Reply #2371 on:** July 06, 2015, 12:37:03 am »

I am at day 11 of 8 weeks and I am one of the fortunate ones I guess. First day had slight headache and could "taste" the pill in my throat. I was also a bit fuzzy minded and a little short tempered. Since then I have had no sides at all.
I work 60 hours a week, have been at public outdoor events for work in 115 degrees and humid for 10 hours two days in a row and have had no ill effects at all.
I sleep, I eat and I am actually feeling better than I have in years. In the past working those events would have me almost crippled with the pain in my legs and feet. Not now - there is no pain at all.
I don't know if this will last all through treatment but I sure hope so..........

cure4me · « **Reply #2372 on:** July 06, 2015, 09:56:07 am »

I felt much better during the middle although I had really minor side effects, it is nothing I couldn't live with for sure. I will let you know this afternoon what happens in my doctor visit after 3 months of taking Harvoni.

shipinthenight · « **Reply #2373 on:** July 06, 2015, 11:27:55 pm »

I just recently finished after three months and my doctor's visit didn't show much since he wanted a liver panel in two weeks and then a second in three months. I'm not getting my hopes up on this. I've been through treatment before and been told the count was undetectable but it sure bounced back within a year.

KC · « **Reply #2374 on:** July 06, 2015, 11:36:43 pm »

WELL THAT JUST FIGURES.....THANKS FOR SHARING THOUGH.

nadewitt · « **Reply #2375 on:** July 07, 2015, 08:47:20 am »

I had the same experience. I'm not going to feel secure until 1 year after treatment and I am still undetected. I found out that when you get a reading of undetected it just means they quit counting when it is under a certain number.

KC · « **Reply #2376 on:** July 07, 2015, 09:46:21 am »

My doc said it takes a year to know if you have really cleared it. Just a big waiting game but hope it worked...... Good luck to all!

shipinthenight · « **Reply #2377 on:** July 07, 2015, 11:51:17 am »

You're absolutely right. I believe the number is 39. When you get a good report, it just means that they cannot detect any hep c in your blood but they cannot detect under 39. So, when it is lurking below that level, it just comes back once more.

Besides, Harvoni is so new, I don't trust anything I read on it. I've been battling hep c for many years and half of all I've been told is not true.

cure4me · « **Reply #2378 on:** July 07, 2015, 12:36:38 pm »

Well for now I am undetected, I had no idea that it comes back, whats that!! Is it the same or what? So waiting a year? My doc said that for sure we will know in 3 months.

Katie · « **Reply #2379 on:** July 07, 2015, 12:47:24 pm »

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

dragonslayer · « **Reply #2380 on:** July 07, 2015, 03:03:26 pm »

What Katie said. With Interferon based treatments, having any virus detected at EOT generally meant treatment failure, because that treatment was based on killing the virus.. If any was left, it was free to replicate resulting in treatment failure ... As Katie said, Harvoni is different; doesnt directly kill but interferes with replication, which accomplishes the same thing. HCV has to replicate to 'live'. So, when you show up detected during, at, or even after EOT, it doesnt necessarily preclude success.. Since the rate of HCV replication is so fast, if youre undetected at or near 12 wks post treatment, thats a clear indication in about 99.8% of cases of SVR:

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

My case is a perfect example... look at my signature; at End Of Treatment, I thought I had failed because I was detected at 29. But at 7.5 wks post treatment, my viral load Decreased to detected < 12 (LLOQ). A living HCV doesnt reverse replicate; the load cant go down if its alive. And then, at just past 11 wks post treatment, I was undetected.. So three post treatment blood test ; 3 decreases in viral load. That wouldnt happen with earlier forms of treatment. Im going for my 24 wk post treatment test tomorrow. Anything is possible, but I sure like my 99.8% odds of still being SVR!

Katie · « **Reply #2381 on:** July 07, 2015, 03:27:15 pm »

I'll be thinking of you Dragonslayer! You have this, I know you do so I can't wait to hear back with your results. My doctor doesn't think a 24 week test is needed since I was undetected at week 16. I think I'll have a viral check next February if all stays good as that will be a year after Harvoni.

So how are you feeling? I had some strange things happen since clearing the virus and now just have weakness and no endurance. Absolutely zero energy. We have been experiencing an unusually hot, dry summer in our rain forest, and I don't do well in heat, so I am sure that is part of it, but I just can't get moving. The weakness comes from my core and it is different from anything I have previously experienced. A couple gals ahead of us, had negative side effects post treatment are now feeling good, so I am not accepting this as my new normal. I continue to push myself as much as possible, mowing my lawn and pruning things that are taking off with this sunshine, but can only do a little bit at a time. Frustrating!

Hope all is going well for you and it is always good hearing from you!

Katie

Redbird29 · « **Reply #2382 on:** July 07, 2015, 03:34:10 pm »

Lifting and sending blessings of healing and light to you Dragonslayer on your testing tomorrow!!! SVR is on the train with you!!!

Seeing your signature also gives me hope as you also did an 8 week tx. Thank you for sharing your experiences and stregnth!!!

dragonslayer · « **Reply #2383 on:** July 07, 2015, 04:10:45 pm »

Quote from: Katie on July 07, 2015, 03:27:15 pm

I'll be thinking of you Dragonslayer! You have this, I know you do so I can't wait to hear back with your results. My doctor doesn't think a 24 week test is needed since I was undetected at week 16. I think I'll have a viral check next February if all stays good as that will be a year after Harvoni.

So how are you feeling? I had some strange things happen since clearing the virus and now just have weakness and no endurance. Absolutely zero energy. We have been experiencing an unusually hot, dry summer in our rain forest, and I don't do well in heat, so I am sure that is part of it, but I just can't get moving. The weakness comes from my core and it is different from anything I have previously experienced. A couple gals ahead of us, had negative side effects post treatment are now feeling good, so I am not accepting this as my new normal. I continue to push myself as much as possible, mowing my lawn and pruning things that are taking off with this sunshine, but can only do a little bit at a time. Frustrating!

Hope all is going well for you and it is always good hearing from you!

Katie

Over all, Katie, I feel pretty good.. But Im plagued with insomnia.. I get to sleep ok, but I usually wake up 3 or 4 hours later, and thats all she wrote. Im averaging about 4 hrs a night, and I have no idea why, except that Ive had it for much of my life, so I cant really attach it to harvoni. Also, from about january 2013 right up to the present, the top of my feet get this hellacious itch mostly at night. Its not every night, but its frequency seems to be increasing.. Since this often accompanies cirrhosis, I was afraid the condition of my liver is way worse than I had been told. Tomorrow, I requested a complete liver panel in addition to viral load, so Im thinking that should tell me a lot as to whether I need to have a fibroscan. Aside from the insomnia and the itchy feet, Im doing well. Im in the gym every day for about 2 hrs lifting, building strength keeping the weight down. Ive been doing this for about 10 years quite regularly. The best part is it allows me to eat alot which is a passion of mine! I just took a week off to vacation on Cape Cod, but got right back to working out yesterday... Not really sure how a biopsy in '08 and again '13 (just after I started these itching bouts) showing stage and grade 0-1 and very little progression can relate to itchy feet, but we shall see. Thanks much for your well wishes and support!

Katie · « **Reply #2384 on:** July 07, 2015, 06:06:51 pm »

Quote from: dragonslayer on July 07, 2015, 04:10:45 pm

Over all, Katie, I feel pretty good.. But Im plagued with insomnia.. I get to sleep ok, but I usually wake up 3 or 4 hours later, and thats all she wrote. Im averaging about 4 hrs a night, and I have no idea why, except that Ive had it for much of my life, so I cant really attach it to harvoni. Also, from about january 2013 right up to the present, the top of my feet get this hellacious itch mostly at night. Its not every night, but its frequency seems to be increasing.. Since this often accompanies cirrhosis, I was afraid the condition of my liver is way worse than I had been told. Tomorrow, I requested a complete liver panel in addition to viral load, so Im thinking that should tell me a lot as to whether I need to have a fibroscan. Aside from the insomnia and the itchy feet, Im doing well. Im in the gym every day for about 2 hrs lifting, building strength keeping the weight down. Ive been doing this for about 10 years quite regularly. The best part is it allows me to eat alot which is a passion of mine! I just took a week off to vacation on Cape Cod, but got right back to working out yesterday... Not really sure how a biopsy in '08 and again '13 (just after I started these itching bouts) showing stage and grade 0-1 and very little progression can relate to itchy feet, but we shall see. Thanks much for your well wishes and support!

Insomnia is terrible and I suffered from it for at least 10 years. I wasn't achieving the deep REM sleep needed for rejuvenation and it wore me down but the tiredness from that was totally different than what I have now. My insomnia stopped as soon as I started taking Harvoni and I am still sleeping well and dreaming too, so I am grateful for that.

Itchy feet. That would not help your insomnia at all. Maybe that's why you are waking up??? Could it be a circulation issue or a laundry detergent, sweaty feet. dry skin? Knowing you as I do, you have tried to eliminate all obvious options. I hope one day both these conditions just disappear for you as those little irritating things are troublesome and become big issues, especially lack of sleep. Poor sleep can cause all sorts of things to go wrong so I wish you a speedy recovery and perfect blood work.

Keep up the good work!

Katie

dragonslayer · « **Reply #2385 on:** July 07, 2015, 07:06:08 pm »

I dont know, Kate.. After my shower this afternoon, i put moisturizer on the tops of my feet and toes, and the itching I was feeling in the shower completely backed off.. So who knows.. Maybe its just dry feet skin!

I remember when I caught what I thought was Hep B around 1970 (its possible the doctor told me non a non b, but I seem to remember Hep B and I do test positive for the B antibodies) I was laid up for 6 wks jaundiced as hell with brown urine, and the nastiest full body Itch you could imagine. Had to take my spring sophomore semester off from college to recover. Its the kind of itch that scratching doesnt touch. Because thats what it felt like on my feet, I was afraid it might be liver related. . In 1970 I certainly didnt have cirrhosis but itched like crazy... Yet with HCV, they almost always associate this skin itch symptom not with HCV per se, but with cirrhosis. So, it got me a little worried.. But the fact that it started appearing around the time I got my 2013 biopsy which came back stage 0-1, and Ive never had any blood tests which would indicate cirrhosis, Im pretty sure I can rule that out. Hope my blood test tomorrow bares this out!

The insomnia is a horrible condition which can destroy quality of life. I usually take something, although Im able to rotate what I take so as to not be dependent on any one thing. I have a script for Ambien 10 mg, but I rarely take it and when I do, I break them in half and only take 5mg. I also find diphenhydramine (Benadryl) to be effective, but I hate taking it because it can knock the crap out of you and leave you drowsy the next day. So when I take that, I take a half dose, but never two days in a row... Lastly Ive found 5-HTP, an over the counter seratonin precursor to be pretty effective at aiding sleep onset. I usually deal with the itching deal before bed with calamine lotion or some such, so thats not an insomnia factor... Only the diphenhydramine taken before bed will allow me to get back to sleep once I awake customarily around 4 hrs after falling asleep.

So Im dealing with it but Ive found no ideal solution.. Either I deign to take the diphenhydramine and resign myself to feeling spacy and drowsy the next day but well rested, or, on most occasions, Ill have to be satisfied with 4 or at the most on a really good night, 5 hrs sleep. Btw, one nasty side property of the diphenhydramine is that its an Anticholinergic which means it can contribute to dementia in folks our age.. I totally believe it.. Im definitely mentally slower the day after I take it.. I sometimes like to play solitaire on my phone and there's no question that Im not seeing the relationship between the cards nearly as well the day after ingesting that stuff.. What good is extra sleep, if your sharper when youve only slept a few hours?

These are the constant choices we insomniacs are faced with.. Im only going on at length about this because Im sure there are folks here who are suffering from it and it helps relay our experiences to others with similar conditions.

Ok, so thats enough droning on about sleep issues... Back to your regularly scheduled side effects station...........

Lynn K · « **Reply #2386 on:** July 08, 2015, 04:39:30 am »

Holding my breath for your 24 week test results Paul

I will be doing my 12 week post test in 19 days

pandaman · « **Reply #2387 on:** July 08, 2015, 08:01:09 am »

Dragonslayer,

Although I don't suffer from constant insomnia, I occasionally go through periods of not being able to sleep well.

A friend recommended a magnesium product called natural calm that not only helped me sleep, but awake refreshed. The only downside is it can cause diarrhea if used to much. Are we allowed to link to products here? If not, search it on Amazon.

I went for my 4 week blood work 2 days ago. I am scheduled to complete 12 weeks
of Harvoni on August 30th which also happens to be my 63rd birthday. I couldn't ask for a better gift than to be rid of the virus.

cure4me · « **Reply #2388 on:** July 08, 2015, 09:50:28 am »

I too wake up after about 3-4 hours and cannot get back to sleep. Plagued with insomnia but I just take a sleep aid and try and get back to sleep. I wait until I wake up to take the sleeping aid. Doing better and trying to work out more so I am tired when I go to bed. I was hoping it would go away after I stopped Harvoni.

I got Hep C from a transfusion in the 80's (miscarriage). Well I will know in 3 months if Hep C is completely gone my doc said after finding I was UD this week after 3 months of taking the pills. I talked to my doctor about magnesium and potassium and he said there is plenty in my system in the tests. My 3 months will be October. Post

Strange I have constipation, no loose bowels at all. Doc gave me pills now for the constipation so hopefully I will get back to normal. I had a hiatal hernia surgery right before starting my treatment of Harvoni so I had a double whammy going on.

GLCII · « **Reply #2389 on:** July 08, 2015, 11:25:50 am »

Quote from: DC Hillite on July 05, 2015, 05:54:08 pm

I'm at day 7 of treatment with Harvoni. Initial virus count was approx. 6M, then down to 0.5M most recently. Since it doesn't go away by itself, I'm getting treatment. I've been told to take my pill first in the morning, along with Protonix (stomach acid blocker).
Day #2 had me feeling like my liver was in revolt with moderate discomfort and very mild nausea about 2-3 hours after Harvoni intake. Luckily, that only lasted 2 or 3 hours.
Day #5 had me feeling totally exhausted by mid afternoon. I went home and lied down for a few hours. When I got up to rehydrate, chills came over me as if I was coming down with a nasty case of the flu. That only lasted for an hour or so, but I did spend a few more hours in urgent care where my blood was drawn for a variety of things and my chest x-rayed.
I'll keep you all posted. I hope I end up cured and not one of the Harvoni failures also posted on this site...

Hi DC Hillite

Be careful with that acid stomach blocker. If you have to take it, try not to take it 4 hours before or after your harvoni pill. You might want to read Gileads PDF on Harvoni "Table 3 Potentially Significant Drug Interactions" There was a conversation here on using antacids while taking harvoni and your stomach acid blocker caught my eye.

"Acid Reducing Agents: ledipasvir
Ledipasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of ledipasvir."

Also

"Proton-pump inhibitorsc (e.g., omeprazole)
Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions."

I'm sure someone else on here can weigh in and tell you the do's and dont's.

Lynn K · « **Reply #2390 on:** July 08, 2015, 10:02:26 pm »

Quote from: GLCII on July 08, 2015, 11:25:50 am

Hi DC Hillite

Be careful with that acid stomach blocker. If you have to take it, try not to take it 4 hours before or after your harvoni pill. You might want to read Gileads PDF on Harvoni "Table 3 Potentially Significant Drug Interactions" There was a conversation here on using antacids while taking harvoni and your stomach acid blocker caught my eye.

"Acid Reducing Agents: ledipasvir
Ledipasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of ledipasvir."

Also

"Proton-pump inhibitorsc (e.g., omeprazole)
Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions."

I'm sure someone else on here can weigh in and tell you the do's and dont's.

Hi DC Hillite

Looks like you are taking Protonix (Pantoprazole) exactly correctly.

Protonix is in the same family on meds as Prolosec (omeprazole) and Nexium (esomeprazole magnesium) they are all PPI's or proton pump inhibitors and should be taken per the prescribing information sheet for Harvoni Table 3 sheet 6 instructions:

"Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions."

If you take Antacids for example Tums or Rolaids that is where the 4 hour separation rule comes into play per the prescribing information:

"It is recommended to separate antacid and HARVONI administration by 4 hours."

Good luck on treatment looks like you are doing it right. For any questions always ask your doctor for clarification

Lynn

2rivers · « **Reply #2391 on:** July 12, 2015, 05:31:21 pm »

I was originally prescribed a 12-week Harvoni program, but would have had to pay the last 4 weeks myself (with a 20% discount from Gilead). However, I received my 4-week results last week and I am undetected. Yipee! The doc now says that I could forgo the final 4 weeks (if I choose) and just do 8 weeks total. She says that Gilead's new study only shows a 1 to 2 % improvement in negative responses with the extra 4 weeks. So I think I will save myself the extra $20,000 and stick with 8 weeks. I have exactly a week to go.

As far as side effects go, they have been very minimal. The only thing I want to mention is that my ophthalmologist has detected an occlusion in my left eye (enlarged vein and blood spots) which I didn't have before starting treatment. He doesn't think the Harvoni could be responsible. Has anyone else experienced anything like this?

shipinthenight · « **Reply #2392 on:** July 12, 2015, 08:44:06 pm »

I didn't relate it to the Harvoni but after reading your post, I maybe should have related it. My RX for my eyeglasses changed by a large amount and that did not make sense to me but I took it in stride thinking it had been two years since my last exam. Since I am off of Harvoni, I notice my sight going back to normal again. Odd? Yes, but I read of no one else complaining about their eyes and so didn't relate it to the Harvoni and maybe it is a coincidence.

Katie · « **Reply #2393 on:** July 12, 2015, 09:44:57 pm »

Quote from: 2rivers on July 12, 2015, 05:31:21 pm

I was originally prescribed a 12-week Harvoni program, but would have had to pay the last 4 weeks myself (with a 20% discount from Gilead). However, I received my 4-week results last week and I am undetected. Yipee! The doc now says that I could forgo the final 4 weeks (if I choose) and just do 8 weeks total. She says that Gilead's new study only shows a 1 to 2 % improvement in negative responses with the extra 4 weeks. So I think I will save myself the extra $20,000 and stick with 8 weeks. I have exactly a week to go.

Hey 2 rivers, congratulations on your good blood work. That news is always reassuring. I don't know if you have been following the result thread started by Charly8 but there have been relapses with some that have cleared at 4 weeks, and at first most of the relapses were with the 8 week treatment but there are some now who relapsed with the 12 weeks as well. I don't mean to be negative, but thought you might want to look at their results and maybe bring them up with your doctor. The thread is filled with comments too so you'd need to start at the top and scroll down to check it out.

Personally, I would be hesitant to not take the 12 week treatment but understand the finances are something to consider. Maybe have your doctor address this with your insurance again???

Good luck to you and hopefully you're on your way to be completely clear of this nasty virus!

Katie

Here's the thread for post treatment results:
http://forums.hepmag.com/index.php?topic=2665.new;topicseen#new

2rivers · « **Reply #2394 on:** July 13, 2015, 10:46:17 am »

Quote

Hey 2 rivers, congratulations on your good blood work. That news is always reassuring. I don't know if you have been following the result thread started by Charly8 but there have been relapses with some that have cleared at 4 weeks, and at first most of the relapses were with the 8 week treatment but there are some now who relapsed with the 12 weeks as well. I don't mean to be negative, but thought you might want to look at their results and maybe bring them up with your doctor. The thread is filled with comments too so you'd need to start at the top and scroll down to check it out.

Thanks for the link and the advice Katie. I was aware of some patients "clearing", only to have the virus return. I will read over the comments and give this further consideration.

bassman55 · « **Reply #2395 on:** July 14, 2015, 05:26:20 pm »

I hope everyone is doing well...I'm down to last 7 days of 12 weeks Harvoni. Something that has popped up is a rash with itchy little bumps? Anyone experience this? It's been on my legs,I did have itching on my back and other places before treatment,it seems to be migrating. I got to my Doc next week for end of treatment,I feel good,gained 10 lbs as of late,food tastes GOOD again! My low was 160lbs,back up to 170lbs ,I'm 5'9" so that's a good weight for me. So the only gripe I have now is the itchy bumps,not poison ivy,bugs,etc. I know itching can be from a hundred things,but there's little hard bumps that itch,the rash on the side of my thigh is about the size of the palm of my hand ,left thigh,then right inside calf, and now starting on inside of my right thigh.Pretty annoying. Cortizone 10 barely works. So...one week from now I'm done,thank god I did this treatment and not the old one with the interferon,I heard that was tuff,this has been a cakewalk. I truly wish everyone well and success in your battle, I hope mine's over,I guess I'll know in 6 months. Hang Tough!!!!

formymother · « **Reply #2396 on:** July 14, 2015, 11:09:08 pm »

Hello all,

I have been reading this forum on behalf of my mom, who started Harvoni 10 days ago. Reading your stories have given both of us so much hope for her future! I am so happy that so many of you are having success with this treatment. My mom was infected by blood transfusion sometime in the late 70's - early 80's and was not diagnosed until 2003. Like many of you, she is experiencing headaches, nausea, and "flu-like" symptoms, but those side effects seemed to peak for her on Day 3 and have subsided somewhat since then.

She wanted me to ask the group on her behalf - have any of you ever switched the time you take your medication and experienced any new side effects or problems? She is currently taking her pill at 9 AM and I suggested to her that she should take it at night to possibly avoid some of the side effects she has experienced. Her doctor & pharmacist said it would be okay for her to begin taking the medication at 9 PM, but she is concerned that doing so will affect the amount of medication in her bloodstream for a short time and therefore may affect her treatment. Have any of you switched medication times and if so, experienced any additional side effects or other issues from doing so?

Thanks, and continued prayers and well wishes to all of you!!

2rivers · « **Reply #2397 on:** July 15, 2015, 12:16:12 am »

Quote

Have any of you switched medication times and if so, experienced any additional side effects or other issues from doing so?

Hi FMM...I'm doing the 8-week treatment and was taking the pill at 9 PM. I found this worked really well...I slept good and seemed to have good energy levels most of the time during the day.

Then, about 5 weeks in, we went to a concert and didn't get home until 11 PM. I totally forgot about my pill until the next morning, so now I'm taking it at 7 AM. What I noticed is that I kind of crash around 3 PM, and I am quite miserable unless I get a little nap. I would like to go back to nights, but then I'd either have a short shift between doses, or another 34 hour period between pills.

I'm a little nervous about either option, so I am sticking with the 7 AM time slot since I only have a week to go anyway. If your mother wants to switch, perhaps she should talk to her doctor (or Gilead) about how to do it. Hope this helps...

bassman55 · « **Reply #2398 on:** July 15, 2015, 12:28:12 pm »

I don't work a day job(musician) so I started my 12 weeks 7-8AM every day,little to no side fx. I have 6 DAYS LEFT!!!! Harvoni obviously effects everyone differently . I did have a little fatigue during the afternoon,it didn't keep me from riding my motorcycle of doing gigs,actually,I think my bike got me thru this easier! You forget all your problems on a motorcycle : ) You'll never see a bike parked at a therapist office.....Best to ALL !!!!!!!!

dragonslayer · « **Reply #2399 on:** July 15, 2015, 01:56:33 pm »

Bassman, Good point about the bike.. big plus for mental health. Ive been riding a kawi ninja 650, but am thinking of upgrading.. Considering something in the Ducati Monster/ BMW R Nine-T class naked roadster class. Something with more 'character' than what I ride now which was my first bike.

Forums Index

Welcome

Author Topic: Harvoni Side effects (Read 2190074 times)