Harvoni Side Effects Anyone?

[Magnum]

I ask this because overall, I don't feel much, but this morning I woke up with a headache, which is very rare for me. I believe one of the side effects can be a headache. I also notice my hands slightly shaking since starting Harvoni. Anyone experience this? Just curious as to what others are going through.

I know this is a new type of treatment, but it would be helpful and put people at ease if others are experiencing the same effects. Otherwise, people could freak out and think something worse is happening to them. Something worse than watching a Justin Beiber video if that's possible...

Magnum

[Sharron1]

I was on harvoni and it seems like it worked....zero virul load...still have to have last blood test on the 1st of October but it looks good....I did the ribo, interferon before and it didn't work, so this looks promising.....stick with it.
I was told at the beginning that a headache was expected but I didn't really experience that....I still cope with the itchiness and that drives me mad sometimes..lol....I took Harvoni for quite awhile....the only side effect was and still is that Everytime I took it I knew it was a thousand per pill and I often felt guilty about that...but then I think back to how I got this...it was traced back to 1979 in Oakville, Ontario hospital when I had a transfusion....all that time I didn't have a clue that I had it...I've had numerous surgeries and I guess they have never tested for it, something which needs to be changed...my doctor routinely checks when he has new patients because the rates have been so high, he says its the silent scourge of Canada and elsewhere because we live with it not knowing......I went through childbirth 3 times and the thought that I could have passed this to them or Anyone along my way just kills...stick with it luv, it works with none of the side effects like hair loss etc that I experienced on the interferon treatment....Good luck, smile and stay safe

[QuiltingB]

You are the only person on this site who has mentioned abdominal cramps that I have read at least. I have been on Harvoni for 12 days and yesterday experienced severe abdominal pain in the area of my liver for 4 hours til around 9AM. Then I had low grade pain in that area the rest of the day. I experienced the same thing this AM. I'm almost 71 and am retired so I guess I can handle this. Sure is better than Interferon which I was on in 2011. It was supposed to run 12 months and doc took me off it in 3 cuz of the side effects I am due to call my GI doc's nurse on Mon so I will be asking her re what if anything can be done to lessen the effects of the cramps. Will let you know..

[QuiltingB]

You are the only person on this site who has mentioned abdominal cramps that I have read at least. I have been on Harvoni for 12 days and yesterday experienced severe abdominal pain in the area of my liver for 4 hours til around 9AM. Then I had low grade pain in that area the rest of the day. I experienced the same thing this AM. I'm almost 71 and am retired so I guess I can handle this. Sure is better than Interferon which I was on in 2011. It was supposed to run 12 months and doc took me off it in 3 cuz of the side effects I am due to call my GI doc's nurse on Mon so I will be asking her re what if anything can be done to lessen the effects of the cramps. Will let you know..

[pherlocher]

Hello! I am approaching week 7 and Hep C has been undetectable since week 5. I am also gaining weight and bloating. I've always been 120 with very little fluctuation. I am now 128 and waist is inches larger. I cannot fit into my jeans. Have others noticed this side effect? If so, has it resolved post treatment?

[patra_]

you are welcome and good luck on treating and reaching SVR!

Please keep us posted as to how you are doing.

Blessings,

Pat

[Stradivari]

Hello Pat,
Thank you very much for having taken the time to respond to my concerns.
I will definetely consider your advice.
After 30 years of having this desease and having this chance now it makes much more sense going for the traditional 12 weeks treatment and insist on it to stay on the safe side and to mostly exclude any further treatments.
Warmest wishes
Axel

[patra_]

reBe, I KNOW that feeling of not knowing how to get somewhere on a computer!  In this case, however, I have information!  : -)

Go to the top of this page, touch the word 'Communities' in the blue stripe across the top, or what ever is across the top of your device, that has 'Communities', 'Health Tools' etc..

That should open up a list of medical conditions in alphabetical order.  if it just brings up a blue background with a short list, just tap the word 'Communities, again, but twice.  That should bring you to the main list.  Go down to the H section and select Hepatitis C, and, voila, there you are.

I didn't mean to imply that there is anything wrong with posting on the Hepatitis Social, just that you might get more responses on the regular community.

Congratulations on starting bottle Number 3!  I still have ALL of my empty bottle!  maybe some day, I will be emotionally over this and throw the empties away.  Back several months ago, several of us were discussing what kind of art project we could construct from the bottles and lids. : -). I may come up with one, yet.

You are welcome for the listening - as I said before, you will find lots of listening, caring, helpful people on here.  Stay with us.  We will walk with you through the rest of your trip, as others did with us.

Blessings,

Pat

[Magnum]

Thanks my friend. I've always had a positive attitude towards life and it's hurdles. I don't think about yesterday or today, I think about tomorrow and forward. This is the meaning I wanted the psychiatrist to be aware of as far as my thinking before and after the transplant.

For those who don't know it, you must see a shrink before and after the transplant, who asks questions like "are you going to take care of your body after the transplant and follow the doctor's suggestions?". Are you mentally prepared for the surgery and the possible outcome?". "Do you have any special goals in life you're looking forward to?", and so on. All my answers were geared towards my being an entertainer and can't wait to get back on the stage again. I believe sincerely that music and the thought of getting back on stage to perform again is what carried me through the horrendous torture I suffered. I believe that most people would have ended it all. Susan, I hope you cure soon and that life will be good to you...

Magnum

[hepcandme]

Thank you Susan

[susan400]

I am glad to hear of your great report.  I know you're the kind or positive thinkers jncluding being a comedian.  With that said:
Not everyone can just 'push there happy button' and decide to stop feeling down.  Depression is a real thing and when someone suffers from clinical depression it is a chemical change going on in their brain and it's not as simple as deciding to not be negative. It's as real of an illness as hypertension, diabetes, liver disease, etc.  Most people who have ever been through a major depressive episode, understand what I am talking about. Anyway, I am happy that your live has been going so much better for you with all you've been through! Susan400

[Beingcured]

Thought I was posting on the Hep C community. I gues its back to the drawing board. Don't know how to get there.

My neck pain has ceased and I'm working on the blood pressure thing. Just took the last pill in my second bottle. Third and final bottle arrived today . Can't wait until it's over.

Thanks for listening to me.

ReBe

[patra_]

Hi, and welcome to the Forum.  You will find that this is a wonderful site for caring, informative, supportive knowledgeable people.  

I think the high blood pressure is part of what is going on with the meds.  I say 'think' as I did not treat with Harvoni.  hope some who did will respond, but I think your best bet is to copy your post and post it on the regulars Hepatitis C Community as a new thread.

The reason I think that it IS related to the tx is that I believe several have posted about it on that Hep C Community, but I do not remember seeing any posts of it continuing.  As I said, not sure that is why I think you should post it over there.

Also, the 149/91 is not 'really' high.  That is probably why the PA didn't seem worried.  Have you got a blood pressure cuff (wrist or finger, can get either at a good pharmacy or wal*mart, etc) and checked you BP yourself daily?  Mine did that on the day I say my Dr. To get my 12 week EOT Lab results.  Probably from stress and tension.  Was back down the next day.  

Also, as to the tightness in the neck, I believe I saw something regarding that, but not for long - again, just not sure?

Did you call your Dr about the tightness, especially that it is going up one side of the neck?  It could just be muscle cramps, but, obviously, you are worried, and should check it out.

Magnum is right about our outlook affecting out outcome.  I don't mean you shouldn't be careful, ask questions and check things out, BUT, please don't let things stress you out.  Just take a deep breath, blow it out, and RELAX, and say to yourself, 'well, I will watch that and get it checked'.  Or, if you are really concerned, call the Dr.  

Is your Dr a Hepatologist or Infectious Disease Specialist, or Gastroenterologist who is really familiar with Hep C and its tx?  If so, his PA should also be up on all that.  

And, as you did here, you can ask on the Med Help Hep C Community.

We are always around somewhere on the Hep C, Hep C Social, etc., some of us.

Good luck, good treating, and on to SVR!

Blessings,

Pat

[Magnum]

Just has my yearly physical and everything was excellent. This after the Harvoni treatment, liver transplant and five previous failed treatments. If it is any indication, I eat very healthy (no red meat), work out three times a week with weights until my heart is racing, drink plenty of water.

There is still the issue with blurry vision in long distance reading (street signs), but my doctor calls me the Wonder Man, as to how I've rebounded after all the torture I went through. Some may doubt it, but I think the mind is very powerful. If you think you're sick, you'll be sick, if you think you're healthy and go on with life as usual, you'll be healthy. Theoretically, it has worked for me.

I have another visit in three months with my optometrist regarding the blurry vision. His and my hope is that the withdrawal of Harvoni will eventually leave me with the vision I had pre Harvoni. Stay tuned...

[Beingcured]

Sorry for the spelling errors above. I'm typing on iPad. Ashamed of myself!!


ReBe

[Beingcured]

Hi. This is my first post. I am in my 8th week of treatment on Harvoni. I found this forum because I am looking for support and help. I had my halfway appointment this lady Wednesday. I learned my blood pressure was high (for me anyway) at 149/91. I have had 120/60-70? my whole life. The physiatrist assistant was not concerned with it, but I am. Along with the blood pressure issue, I have developed in this 8th week a pain in the neck. It sort of feels tight and I keep feeling for lumps. It feel today as if it is moving up towards my ears. This afternoon I feel a slight "tightness" on the right side of my neck and I am praying that doesn't get as bad as the left. Has anyone else had this experience, and if so, what did you about it. Should I be worried?

For the new Harvoni users, I have had mild headaches, not lasting long, drank tons of water, had sleep deprived nights (which have been most frequent in the past week), a pain in the right side off and on the whole time (but getting less and less) , taken only three Tylenol in 8 weeks, and the veins in my legs have felt painful (tight) when I've gone on my morning walks. Initially I could not get words out of my mouth easily and even said a different word than what I meant to say in the first few hours after taking my pill. I have also been dizzy and tripped and even fallen over the past 8 weeks.

The good news:  at 4 weeks my ALT and AST was back in normal range, there was some of the virus still detected but it was < 15. The other number that is measured was unmeasurable as in not detected!

New test on Wednesday.

Looking forward to hearing from you all and, if I can help you by answering questions, I'll happily do so.

God Bless all of you

ReBe

[patra_]

Hi and welcome to the Forum.  

Concerning the Harvoni 8 weeks vs 12 weeks:  yes, there are successes with 8 weeks, especially for those, like you, who are treatment naive (never treated before for the Hep C) and who have a low viral count.

Having said that, I would advocate with your Dr to extend the treatment for the other 4 weeks.  I am very conservative and believe that it is better to treat for the 12 weeks than to have to do treatment (tx) all over if the 8 weeks does not work.

We have had several people post, on the regular Hepatitis C Community, that have been successful in getting the increased time.  but also some did not get the extension.  However, I don't remember anyone saying that they had failed on the 8 weeks.

You might want to look at that Community, too.

Good Luck on reaching SVR, whichever way you go!

Blessings,

Pat

[Stradivari]

Hello from Germany
My name is Alex, 53 years old, since 30 years I have HEP C  but I never have done any treatments with Interferron/Ribaverin due to the fact that my intuition told me to wait for the day some new less harmless remedy will be discovered and also due to the reason I was scared of the side effects like depression.
I´m in my fith week with Harvoni now and I do have the same problem with my eyes.
Apart from that they are not as shiny as usual I also realize that my capacity to read or look at smaller things at low distance without reading glasses has suffered a bit.
Another side effect which I realize (and also my wife does) is that I cannot concentrate as good as I´m normally used to. Also my memory is quite affected. There is nearly nothing to fnd in the www on German experiences.
I´m very happy to have found informations of English speaking people (most of them from the US).
And I´m absolutelyhappy about this new therapy.
I´m sure it will work!
The only thing which worries me i that my doctor wants to do a only 8 weeks treatment - he says that my virus concentration being so low it would be enough with 8 weeks - ; How do you think bout this?
I´m a bit worried being used as a guinea pig as the treatment is being paid by my health insurance.
I think it´s the best to insist on the classic 12 weeks treatment. right?
Best
Alex

[sumerwynd]

Yes I just finished my first bottle of harvoni and have noticed a decline in my vision.  I am going to get my eyes tested and get some new reading glasses!  Also my sleeping habit are weird.

[inhaled]

I am in week 10, no sign of hep C since week 4 but have gained 8 lbs. 125 to 133, need to realize I have been 125lbs. since son was born 13 years ago. Besides the weight gain, I have become bloated my waist is 33 inches, that is more than when I was pregnant. Dr.'s sure it is ascites even though all test prove negative, water pills were of no help either. Still looking pregnant at 52 years old but hey Hepatitis free for the last 7 weeks. Would say hip hip hurray!!! but my eyesight has seemed to have gone hay wire. Within two weeks of seeing my opthomologist eyes went from 20/40 to 20/50 not constant but just from every here and now. Does anyone have a comment about that? My Doctor won't write a new prescription until we can determine what is going on. Help, please...

[Magnum]

Oh how you remind me... Yes, I had a very similar experience up until about two months post Harvoni treatment. Now that it's been a little over three months post treatment, everything is so back to normal that every morning when I wake up, he's standing at attention and asks "what are we going to do today boss?"

I even went to a doctor regarding maybe getting a prescription for Viagra. I asked him an interesting question first. I said "doctor, you've no doubt seen the commercial regarding Viagra on TV, where it states that if you have an erection lasting for more than four hours, you should call your doctor. I asked him "wouldn't it make more sense to call a hooker?". First time I saw him laugh.

Hang in there, it's a matter of time and everything will be back to normal. Remember that everyone is different and everyone responds differently at different times.

Magnum

[Manlookingforanswers]

Hello forum, I started Harvoni Nov 2014 and completed Jan 2015. Experience went well and results positive. Now a few months post treatment I am noticing a HUGE decrease in libido and and ability to maintain erections. Overall I am a healthy 36 yr old man with minimal fat on body and was recently tested for possible triggers for recent experience and all negative. The only variable is my treatment. Although, I am confused as during my treatment I didn't have these obstacles. In fact I would rise to the occasion almost on command. Has any other male experienced similar post treatment? Thank god my wife is a patient women as we now only do our thing once per week and is supportive. Feedback would be great

[patra_]

try an 'achy buddy' instead of ice pack for the neck/headache.  In case you have never heard of them Acky Buddies are a tube sock, filed with uncooked rice or some such, dolled at the ends and sewn shut, which you put in the microwave for a minute to two minutes.  Most I have seen (I get them at our church bazaar - made by one of our members) have a cloth shoe string sown in to the fold, so you can tie the Ab around an arm, knee, neck, etc.

Second, not sure what med you are on but yes, on Sol/RIBA I did experience a decreased sex drive.  I am happy to tell you txt that started correcting itself within about 6 weeks after 24 weeks of treatment.  no problems now! : -)

Third, try something simple to correct txt constipation - prune juice.  When I asked my Dr what to take, he said prune juice, nothing else.  I had 8 oz the first morning and drank 4 -  6 oz very couple of days there after and had no problems, you can always increase the amount you drink.  It worked on my husband, too, who has had a problem for years.  

Finally, in both the headaches and the constipation, make sure you get plenty of water each day.  dehydration causes all kinds of problems.

Good luck,

Pat

[Gracinn]

I get the headaches too.  Not all the time but mostly in the evening.  Weird thing is it starts in the base of my neck and come up the back side of my head.  I take 3 ibprophen and sometimes put an ice pack on the back of my neck.  Have you experienced any side effects with low or decreased sex drive?  I am only in my 2nd month... about 6 weeks into treatment... my viral load went from 5,390,000 to 73 in 3 weeks... i am elated... what a trade off my boyfriend says to living with Hep C...  which i agree.  Did you notice a weight gain.... I was drinking BOOST... which I have now stopped... maybe that was the reason... last ... i have the dreaded constipation... If I do an enema every other day or two it seems to keep me from that bloated stuffed feeling.... Good luck with treatment.  I have to do 6 months... so may we both end up HEP C free and it will all be well worth any side effect.  Anything beats the interferon/ribovirin/ !!!!

[patra_]

I had a problem with the insomnia, but mine was day time!  I have always been able to fall asleep without any problems, sleep several hours, get up, stir around, and go back to bed and sleep all night.  On the Sol/ Riba, I could not sleep at all during the daytime, but was so tired, I went to bed by 8:30 or 9 pm, and slept well, until 3:00 -am or so, then was awake.  Read, posted on the site, sent e-mail, etc, til time to get up.

It's funny, now I can nap during the day, once in a while, my bed time habits have returned to normal, but I still only sleep 5 to 6 hours, oh, but I do sleep well!  That is new for me.

As stated before, drink lots of water.  Also, you might want to try a 25 mg Benedryl at bedtime to help you get to sleep.  I did that most nights because of sinus and allergy problems, but found it helped me sleep.

You are almost half way!  Before long, you will be on the going down side!  It won't seem so long in the second half!

Blessings, and on to SVR!