Harvoni Side effects

[Karen1124]

Hi Katie,
Thank you for your response and the link that was very interesting but it is disappointing we both wanted to be UD! Then I guess the best thing we can hope for is that they dont multiplie. I will have my second test results in a couple days I'll post the results! Good luck on the 20th!! Keep us posted. Life is good! Karen

[Katie]

Good news today Karen.  Dragonslayer (Paul) got his 11 week test results and is now UND!  At EOT he was at 29, 4 weeks later <15 and cleared at 11 weeks, so we are right behind him and will overcome!  Awesome news and I have my fingers crossed.  Not much else I can do!

Yes, life is good!

Katie

[Karen1124]

Hi Katie,
Wow!! That is good news!! So we still have shot at UD!!

Congrats Dragonslayer!! That is great news!!
Katie and I are on or way to join you in your Happy Dance!
Life is good!
Karen

[Katie]

Hi Katie,
Wow!! That is good news!! So we still have shot at UD!!

Congrats Dragonslayer!! That is great news!!
Katie and I are on or way to join you in your Happy Dance!
Life is good!
Karen

We most certainly do!  The study I mentioned was small but they had 6 people who came with detected but less than the countable virus and they all cleared at week 12, so it isn't the time to give up hope!  We'll do it!

Enjoy your evening!

Katie

[Lynn K]

Hi Joseph

also here is a link to the prescribing information sheet that comes with every prescription. That little paper everybody throws away.

Page 5 has the list of known Drug Interactions

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Did you provide your doctor with information of all medications you are taking when they prescribed treatment? They should have discussed with you any concerns at that time but you definitely need to have this question answered bu your doctors office.

Good luck on treatment

[MEG]

Good news today Karen.  Dragonslayer (Paul) got his 11 week test results and is now UND!  At EOT he was at 29, 4 weeks later <15 and cleared at 11 weeks, so we are right behind him and will overcome!  Awesome news and I have my fingers crossed.  Not much else I can do!

Yes, life is good!

Hi dear Katie, PAUL(!!!)

I'm just learning about your UNDETECTABLE results Paul and I couldn't be happier for you. I hate to tell you, "I told you so,"
but this is the kind that I gladly with with joy, will repeat! "Told you that we're rooting for you to be UND and there you are!

You have a special place in my heart because you were the first person I met here who had that most disappointing of EOT results and have been hoping/praying that your body would kick those last few buggers out....and they did. Praise God...

Katie, you're next!!!!!! Holding you in the light of healing until you learn that you too are UND!  Meg.

[SunIsOut]

Hi Everyone!  My energy levels continue to be very good.  I have been working on the deck, gazebo and landscaping for the last two weeks where I worked all day yesterday painting.  I am no doubt tired at the end but that is not Harvoni just hard work. 

My appetite too has been greater than normal where I do eat way more than before.  I pretty much have my yogurt berry breakfast, good lunch and lighter fare in the evening.

Today, 10:00am I will start staining the deck, and painting gazebo, cleaning grill till about 3:00pm than I will head out to help a friend get the sails put back on his boat!

I do think you have to have positive thinking, a little bit of coercing yourself to do something.  I still have the tinnitus, funky vision but blazing forward.

There is that ol saying "Argue your limitations and surely their yours"  so make it good folks!! 

[mario555]

Sunisout. Thanks for your feedback, I love to hear the "after treatment effects" of Harvoni. You seem to be in better physical shape than how you were before treatment. I sure hope it will be the same for me!
I am now in my 22nd week of treatment with only 17 pills left out of 168 pills!! I have not been tested since week 8 because no matter what happens, I want (need) to finish the full treatment. My side effects were strong at week 6 to 10 and even worse at week 16 to 18. I can't wait to be finished with this sh...
Please keep us updated on your health over the next couple of months.
Lynn K. I guess I precede you by 5 days?

[BeWell]

Hello friends in pain. I've been silent visitor here for three months since started Harvoni treatment. This is my second attempt to get rid of little buggers. Three pills left, after 4 weeks VL was still detectable which makes cure questionable. Will see. For now just wanted to share my side effects because it helped me a lot to read about other people experiences. Much more and better info than my doctors provided.
  Headache (bad but not prolonged)
  Dizziness (quite bad)
  Lightheaded
  Runny nose (light but all the time)
  Flared and bleeding hemorrhoid
  Hot flashes (thought I was done with menopause symptoms but right after the first   pill hot flashes started again with more intensity and frequency )
  Problem with teeth
  Ringing in my years
Pain in liver area
  Problems with memory, concentration (interfere with my job functions)
  At the beginning of treatment feeling of a racing or pounding heart beat
  Fatigue
  Growling stomach, gas
  Itchy patches of skin
  At the beginning was terribly irritable and short tempered
  Depression got better after couple years post treatment but now it's getting worse again
..............................
After failed first treatment with RIBA/pega/interferon had really bad problems with my hands. Swelling was especially bad at night. Joints swollen and extremely painful. Couldn't use thumbs at all. My doctor recommended Osteo Bi-Flex and I've got my hands back! Stopped taking pills not to interfere with Harvoni but make a note of this if you have similar problems.
Like many others I'm very interested if Harvoni's side effects are temporary or permanent damage is done. First treatment left me with destroyed thyroid, damaged memory and concentration... And virus came back...
I do hope that all of it will bear some good fruits.
Those who created and maintain this site and shares so much information and love and support - thank you!
Be well everybody !
Infected in 1995 from blood transfusion
2010  - first treatment, responded quickly, relapsed
2015/1/22 started Harvoni
4 weeks VL < 12 detected

[41HAPPY61]

Has anyone experienced bizarre dreams??

[Lynn K]

Hi Mario

We are in the home stretch! Year 5 or 6 days last pill May 4th.

Hi 41Happy and welcome

I think maybe our systems are a little fired up so maybe we are a bit more awake when we are sleeping. I have a few more what I call intense dreams. It kinda reminds me of when I was using the patch when I was quitting smoking. Wearing the patch while sleeping and having my nervous system stimulated by nicotine when normally it is not.

I just think it is kinda interesting

[dragonslayer]

Hi dear Katie, PAUL(!!!)

I'm just learning about your UNDETECTABLE results Paul and I couldn't be happier for you. I hate to tell you, "I told you so,"
but this is the kind that I gladly with with joy, will repeat! "Told you that we're rooting for you to be UND and there you are!

You have a special place in my heart because you were the first person I met here who had that most disappointing of EOT results and have been hoping/praying that your body would kick those last few buggers out....and they did. Praise God...

Katie, you're next!!!!!! Holding you in the light of healing until you learn that you too are UND!  Meg.

Hi Meg... I was the first person I met here, too, that was detected at EOT!  I was telling everybody who knew of my condition that I had failed treatment, and I truly believed I had.  I just couldnt understand how with odds of approx. 95% in my favor, I could have possibly failed.  And, I didnt understand how a detected at EOT result could ever result in SVR.. . After all, if Harvoni didnt kill the virus, then how could it possibly clear AFTER Harvoni, that which has been assaulting this virus every day for 8 wks, is withdrawn??

Then, folks like you, and Mike, and others started telling me that this still might clear.  I didnt see how,  since experience with older treatments showed that any virus left at EOT would rapidly replicate to a VL level similar or greater than it had been before treatment.   

The key data for me was when Spitzbar put out that link for the  blog that displayed the data for the study that found all 6 detected patients at EOT went on to SVR12.  Thats the first time I saw real world results that this can actually happen.  I cant tell you how much that did for my outlook.  Then I learned that Gilead themselves used a test where LLOQ was < 25 to determine SVR.  More encouraging data.   Then, when I tested at 7 wks post treatment and it came back detected but < LLOQ(12), I really started to believe, and finally, the 11 wk test confirmed the excellent progression.  I dont know enough about earlier treatments, but for Harvoni, it really seems that UND at EOT is not a prerequisite for becoming SVR!   

I hope that all others experiencing a similar EOT fate see these posts and links contained herein, so as to not have to endure the mental torture that comes from assuming a failure where none exists!

[Karen1124]

Hi Everyone,
On April 2nd I had EOT blood work done and my viral load came back less than 15 they had me repeat the test on April 9th and that test came back undetected! The doctor thinks it was a lab error! Waiting for all clear on June 24th!! Have a Great day everyone! Life is good!!
Karen

[dragonslayer]

Hi Everyone,
On April 2nd I had EOT blood work done and my viral load came back less than 15 they had me repeat the test on April 9th and that test came back undetected! The doctor thinks it was a lab error! Waiting for all clear on June 24th!! Have a Great day everyone! Life is good!!
Karen

CONGRATS!!!!!!

[Defendo]

Greetings,

I just start Harvoni on April 1.  I previously did 6 months of interferon and ribavirin, but did not respond to the treatment. But the side effect were totally devastating for me. 

The side effects of Harvoni so far are mild in comparison so far, but since my frame of reference is my past tx, I am having a lot of anxiety.  The other side so far are Sleepiness and lack of motivation, nausea, and headaches.

On my 8th day of treatment my knee became very sore and later that day became red and hot. It appears to be a form of gout. I have experienced gout before, so I was aware that sour cherry juice can help.  I also took ibuprofen for the inflammation. It appears I was able to prevent my knee from getting any worse and it has improved dramatically. However there still is some slight pain in one specific spot.

I read the literature on Harvoni from Gilead and there is some indication that less than 2% experienced some form of arthritic side effects from Harvoni.

Does anyone have any information regarding gout and Harvoni or has anyone has a similar experience?

J

[Katie]

Hi Everyone,
On April 2nd I had EOT blood work done and my viral load came back less than 15 they had me repeat the test on April 9th and that test came back undetected! The doctor thinks it was a lab error! Waiting for all clear on June 24th!! Have a Great day everyone! Life is good!!
Karen

What GREAT news Karen.  I'm doing the HAPPY DANCE for you right now!  Wooo Hoooo!

[EleanorB]

Hi Folks,

It's been a while and I thought I should write based on some of the postings I have seen.

The main reason our side effects "come and go", like the days when some times you are just too fatigued to do anything, probably has to do with the viral replication cycle, which is about 3-5 weeks. When the virus starts to replicate and the Harvoni does it's job buy interrupting the cycle, perhaps that's when the side effects peak.

I get nausea about 2-3 hours after taking the Harvoni, which may be because that's when the concentration is highest in my system - like many, this is helped by drinking lots.

Re the cardiac side effect profile, I have seen postings re higher blood pressure, but I have had open heart surgery 2x (bicuspid aortic valve and aneurysm of the ascending aorta) and have noticed no increase in blood pressure. I'm going in for my 6 month check (I have another, moderate aneurysm near the aortic arch above my graft that has to be monitored) and I'll let you know if they see any changes. Will be impossible to tell if Harvoni is the cause, though).

Yes we are all guinea pigs to a certain degree, but by the end of 2015, there will be enough data from all of us to be much more certain of the Harvoni outcomes and side effect profiles. I'm happy to serve as well.

And finally, I got my 4 week labs and I'm UND, so keep your fingers crossed for the rest of the treatment to be equally successful!

And REALLY Finally, May is National Hepatitis C Awareness month. Please be aware that only $6 million dollars were raised last year for all liver diseases - and we know that at least 3.2 million Americans suffer from Hep C alone. Everyone has heard about the Ice Bucket Challenge for ALS. Only 30,000 people suffer from ALS which is indeed a terrible disease and $115 million dollars were raised by the Ice Bucket Challenge. That's great, but it means $3,833 per person with ALS vs $1.87 per person with HepC, even excluding all others with liver disease. We need to change that, so get out there, join a Liver Life Walk sponsored by the American Liver Association in a city near you and spread the word.

[Bituman]

We need to change that, so get out there, join a Liver Life Walk sponsored by the American Liver Association in a city near you and spread the word.

Right with you Eleanor.  I'm doing the Liver Walk in Phoenix next Saturday.  I'm on Team Mayo. 

Bob

[Karen1124]

Hi Katie and Dragonslayer,
Thank you both for the well wishes! OK Katie l will be looking for your results around the 23rd of this month!! We can all do Happy dance together! Prayers to all! Life is good!!   Karen

[moma]

defendo,
I was so surprised by your post. Yes, I have experienced gout like symptoms in my big toe and throughout my whole foot. Never having gout I chalked it up to aging!
But now that you wrote about your knees I'm going to evaluate. Sorry to heard about your pain.
MoMa

[Defendo]

moma,

Thanks for your reply.  I have a feeling this may be more common. The "gout" in my knee feels exactly the same as when I have it in my toe. But my knee never swelled. It is still slightly sore today.

There are two kinds of gout

Common gout is caused by too much uric acid. The toe is the most common site of gout.

Pseudogout is caused by formation of calcium pyrophosphate (CPP) crystals in the cartilage, which is later followed by the release of crystals into the joint fluid. (WedMD)

Pseudogout usually manifest in the knee or wrist.  I suspect I have pseudo gout in my knee.   

Peace,
Jay

[hc]

Hello, I posted here earlier and would just like to update readers regarding what my 80-year-old mom experienced while on Harvoni. Toward the end of the 12-week cycle she began to experience extreme confusion, memory loss and other symptoms of HE. However, her liver functions were normal and her amonia was not high. A few weeks before that she went into the hospital with congestive heart failure due to fluid in the lungs and low oxygen, but this was resolved. With 6 pills to go, my mom took a terrible turn for the worse, and became so confused and lost so much memory that she had difficulty getting out of bed to have breakfast, would not take her medicine, spoke less and less, and finally ended up in the hospital in a coma. She had every test (MRI, spinal tap, CT scan, blood work, X ray, EEG, etc.) and the doctors could find no physical cause for the confusion, memory loss, and coma. Her liver function counts apparently did not explain it, nor did any other physical indicator. Thankfully, my mom did wake up from the coma a few days ago. At first she was awake and could not speak but the next day she was able to speak and had a lot of confusion and memory loss but could remember more than she could when she went into the hospital. For a couple of days she experienced hallucinations, which now seem to be abating, and her memory is returning little by little.

Although my mom is 80, this was not Alzheimers or dementia. It was a sudden decline of memory. She was in relatively good health and her mind was sharp and clear until a few weeks before she lost her memory and went into a coma.

In the trials conducted to test the safety and efficacy of Harvoni, only a very small percentage of the patients were over 65, let alone 80. The Canadian study (available on Gilead's Canadian website) indicates that less than 2% of patients had memory loss and other neurological conditions (could this number have been higher had there been more elderly participants?). An article in the New England Journal of Medicine indicates that one patient developed hepatic encephalopathy as an adverse result of taking Harvoni. Several of the doctors who are treating my mother feel that her condition may have been either a side effect of the Harvoni or a side effect of interaction between the Harvoni and other meds that she takes for a pituitary tumor that she has had for years (parlodel and other meds for hormone replacement). The effects were not caused by the pituitary tumor itself.

I wanted to post my mom's experience here as a warning to others who may be older or who are on meds for a pituitary tumor and who are considering Harvoni.

[dragonslayer]

HC,  Im so sorry to hear about your mom.. Pretty scary stuff.  I think it is always important to remember when looking for causes, that  Correlation does not imply Causation.   While its probably possible your mom's condition was a direct result of Harvoni, nobody really knows, and therefore, while others should be alerted to a possible relationship, I dont think they should be warned off of taking Harvoni until a proven causation exists.   

I feel that there are already plenty of people who are considering treatment but have not pulled the plug due to their fear of side effects, which the majority of patients never experience...   Id just hate to add to that number, when so many are being helped immeasurably by this treatment.

[SunIsOut]

HC,  Im so sorry to hear about your mom.. Pretty scary stuff.  I think it is always important to remember when looking for causes, that  Correlation does not imply Causation.   While its probably possible your mom's condition was a direct result of Harvoni, nobody really knows, and therefore, while others should be alerted to a possible relationship, I dont think they should be warned off of taking Harvoni until a proven causation exists.

I do not think this was implied rather an elder patient also taking a certain heart medication (pituitary tumor) that could potentially have a combined side effect.  It is just a way to log a certain happening and should be taken as informational without opinion. 

[dragonslayer]

I do not think this was implied rather an elder patient also taking a certain heart medication (pituitary tumor) that could potentially have a combined side effect.  It is just a way to log a certain happening and should be taken as informational without opinion. 

Hi Sun... it was posted as a 'warning' if you read the text.. I think its fine to log data and incident reports.. But until an association is proven, Id be reluctant to warn people, even elderly people as some of us already are, off taking this generally safe and effective medication.. And no, Im not a Gilead employee; I just play one on television.  Perhaps 'warn' in the text was too strong a word, but I took for what it was..


I feel that there are already plenty of people who are considering treatment but have not pulled the plug due to their fear of side effects, which the majority of patients never experience...   Id just hate to add to that number, when so many are being helped immeasurably by this treatment.

[coloradogirl]

I am sorry your mom has to go through these challenges.  I hope that the medicine worked for her, and she gets better soon. I think your input is important, and even if it has never been reported as a side effect, who knows what baring it has on the drug and it's interactions.
 
I think it is quite possible, and I would hope, that researchers from the drug companies and concerned entities watch these threads to gather data on these treatments.  It would be foolish to ignore these postings.  If there is a pattern that emerges, the data could then guide the criteria for monitoring and treatment.

Keep the reports coming, ya'll!

[dragonslayer]

Colorado, I agree. Its important to report SUSPECTED symptoms. However, please realize that its not technically a 'side effect' until there is a proven association between the causative agent and the suspected  symptom.. Until then, its a 'reported' symptom' or a 'suspected side effect'.   Again, correlation does NOT imply causation, and its a huge error to think that it does.  Some of the so called side effects reported in this thread may turn out to be true side effects; many undoubtedly will not...  We wont know until the association is tested in a double blind study and the connection clearly established.

[Lynn K]

I doubt the FDA is monitoring Internet chatter if you have a side to report it is listed with the prescribing information sheet

-------------------------------ADVERSE REACTIONS-----------------------------
The most common adverse reactions (incidence greater than or equal to 10%, all grades) observed with treatment with HARVONI for 8, 12, or 24 weeks are fatigue and headache (6.1)
To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

[Defendo]

I am sorry and I know I am new here.  But I am not new to HCV or to the side effects of HCV drugs.

Dragonslayer is simply wrong. He is trying to quantify side effects when each individual will react differently to this powerful medication.

I did Peginterferon and ribavirin. I waited until Peginterferon was approved and was one of the first to use this treatment protocol through the University of Miami.

At the time Peginterferon was approved, the SVR was indicated to be around 50%.  But time went by it was found that SVR for genotype 1a was really only around 30%.

During the first year Peginterferon after Peginterferon was approved, more and more side effects were documented that were not initially reported .

So dragonslayer is playing with semantics. Using words like "suspected" and "technically".  If you are feeling side effect symptoms that you have never experienced before, than it IS a side effect, whether causation is proven or not. 

I have a history of gout in the toe. However, after a week on Harvoni I began experiencing join pain in my knee, that was similar to gout.  I do not know if the Harvoni caused this knee pain or not.  But my doctor says he has not seen this as a reported side effect.

However, there are plenty of patients reporting joint pain while on Harvoni, especially in the beginning of tx.

http://treato.com/Harvoni,Joint+Pain/?a=s

I admit that I do not know dragonslayer's HCV history, but according to his profile, this appears to be his first attempt at tx.  He is fortunate that he is not having a difficult time. But remember that other people react differently and we should have compassion for those who have a difficult time with this medication.  Some people have to discontinue Harvoni because of complications with side. Although Harvoni was approved, it is still an experimental drug and we are the guinea pigs.  Our input is important to those who will take this drug behind us.

The approach dragonslayer is advocating is flawed.

[Davidlm1]

Writing in today to report that 5th week mass of effects.  Got hit with fatigue to the point of it hurting, having double vision, brain is fogged and having about every effect I have read about.  I'm hoping this is the diseases final charge and the Harvoni is giving better than it's getting.  Waiting on my first lab results since starting this and hoping for good news.  Hoping everyone is either bouncing forward or hanging in.  Keeping the focus on the result and not the journey these past couple days.  Toughest part of it!

[dragonslayer]

>>The approach dragonslayer is advocating is flawed.<<

Defendo,

Really?? .... Youve offered up nothing to disprove anything Ive said.   On treatment, I had 2 colds and one bout of stomach distress accompanied by fever, which lasted 24 hrs and then disappeared. Im not going to call them side effects.. There's just no evidence that these things had anything to do whatsoever with my Harvoni treatment.. If you go through the litany of 'side effects' reported in this thread,  if you think every one of them is a bonafide effect of the drug, you are sadly mistaken... The fact that people often report psychosomatic results from a given stimulus  doesnt mean they are bad people; only that we have different ways of responding to the same stimulus..   Im not saying what people are experiencing on treatment is not real; only that the cause is unknown in most cases.... If you were right, then there would be absolutely no point in doing double blind studies with the inclusion of a placebo..  The very fact that these studies exist proves that checks and balances are required to rule out just this type of effect.  Oh, and by the way, in case you hadn't heard, Harvoni is not Interferon.   More fallacious reasoning in assuming that what was true for one is true for the other!

Without science, its all just noise and hearsay.

[Defendo]

No kidding.  Have you done interferon.  I know there is a big difference from personal experience.

The point is that whether the side effects are pyschomatic or undocumented, it does not diminish the impact of the side effects on the patient. SO THEREFORE IT IS A SIDE EFFECT.

[dragonslayer]

No kidding.  Have you done interferon.  I know there is a big difference from personal experience.

The point is that whether the side effects are pyschomatic or undocumented, it does not diminish the impact of the side effects on the patient. SO THEREFORE IT IS A SIDE EFFECT.

No, it is a  very real effect the patient is experiencing.. Whether or not it is due to Harvoni is what we are debating.. One more time: Correlation does NOT imply Causation. Because a symptom arose during the taking of Harvoni is NOT an indication that Harvoni had anything to do with it.. If nothing else, that is the main point of what Ive posted today.... Once more: double blind studies with a placebo are required to prove causation.  Short of that, at least a statistically significant correlation would have to be observed under similar circumstances.

[MEG]

Hi Paul, I'm just seeing your response to me re: your SVR.

I'm so glad you stuck around here to get the emotional support and all the information, that I too, hope that others(it could be me next week) will access when faced with similar results.....

How are you feeling, physically, btw? Have you noticed any changes now that you're 3months off Harvoni?

Continued hope for even more healing to you. Meg.

[Defendo]

Well Paul,

At least we can agree that we disagree. 

Be well!

Jay

[Defendo]

Paul,

I am sorry, but I have one last comment.

When I was doing interferon and Riba, I experience a wide variety of side effects, many which were considered not caused by the tx.  However, years later, these side effects were acknowledged as being caused by the tx.  As one example in many, no one knew that interferon was associated with thyroid damage.  Later studies showed a correlation.  As result many patients that took interferon now experience long term effects of thyroid dysfunction.

So just because the science has not caught up with reality is not reason to discount causation.

Peace,
Jay

[MEG]

Defendo, hi!

Re: side effects. I think that any sensations, experiences we're having should be reported to our doctors or the FDA system. They can then look at all of them, in totality, look at the patient charts to look for clues re: was this Harvoni-induced or not. Goes for every drug...

For example, I had terrible colds which turned into sinusitis after Harvoni. My fatigue was almost unbearable at times. I'm just beginning, during my last week of Harvoni therapy, to feel stronger. But also Spring is advancing, viruses are moving to the Southern Hemisphere, etc.... Was it the Harvoni? Was it that it was winter time and I am vulnerable to bouts of sinusitis combined with Harvoni?  Or was it just bad luck?

We'll never know. My doctors have this data and eventually they and the scientists will come up with them...

I do think it's dangerous, and this is where I agree with Paul(Dragonslayer) for someone to come here and post a warning about a side effect and state it in a way that blames Harvoni.  Because there are some people who lurk these boards who don't have great medical care, don't have the support systems in place to help them filter what is utterly true . And like Paul, would not want to see someone turn down a 95% chance of cure because of internet postings of people's opinions....

Wishing for us all the Grace of a cure and healing.

Meg.

[Defendo]

Hello Meg!

I understand where you are coming from.  I have horrible allergies to tree pollen and was suffering from those symptoms when I started Harvoni two weeks ago.  So I was very mindful that my allergy symptoms were separate from any effects from Harvoni.

I had a terrible experience with interferon tx and I had decided that unless something new came along, I would rather die of liver disease than go through 6 months of shear hell again.

Even with my past experience, I decided to take Harvoni just because of the 95% chance of clearing the virus for good.   

So I agree that people should not be discouraged from this miracle drug. But at the same time, just because specific sides have not been documented in clinical studies, it does not mean they do not exist. It is best to have an open mind and to be honest.

As a closing comment, I would point out that since Harvoni has been approved, it has become an issue whether Harvoni can have fatal consequences if taken with certain heart medication.  That is now a warning issued by Gilead Sciences about this issue. I have also read that there could be a risk for those people taking beta-blockers. 

So the point is that people who decided to undergo tx should have full disclosure  of possible side effects and the consequences. The issue with heart medication is not yet correlated with the use of Harvoni, but if I was a patient taking the heart medications suspected, I would want to know. 

Peace,
Jay

[KimInTheForest]

When I was doing interferon and Riba, I experience a wide variety of side effects, many which were considered not caused by the tx.  However, years later, these side effects were acknowledged as being caused by the tx.  As one example in many, no one knew that interferon was associated with thyroid damage.  Later studies showed a correlation.  As result many patients that took interferon now experience long term effects of thyroid dysfunction.

So just because the science has not caught up with reality is not reason to discount causation.

Peace,
Jay

Right on, Jay. It is surprising to me the way some individuals on this forum feel compelled to dismiss and invalidate every instance of a not-yet-recognized side effect that other individuals on tx know they are experiencing. NOBODY (and certainly nobody on this forum) knows my own body as well as I do. And while "science" may not yet have enough data points to prove correlation, that is really irrelevant if our own knowledge of our body tells us a correlation does indeed exist. It is  very closed mind indeed that forever seeks to dispute and invalidate the reality of what someone else knows is happening in his/her own body - and yes, I am referring to the knowledge of causality. Knowledge comes from MANY places and through many modalities - not just a data set on a page.

Wellness to all and respect for the Truth that each of us is able to discern for ourselves within our own skin,
Kim

[MEG]

Hi Jay,

I'm so sorry you had to go thru ifn therapy. For various reasons I was ineligible.   And you're right, it did indeed take quite a while, the accumulation of  patient experiences, for some of the side effects to be attributed to it....

And I think we agree much more than we disagree. I think that Paul and I were responding to the nature of the tone of the post. Warning: etc......

The reason we know about the amiodorone side effect is because people reported them to their doctors. Were getting good followup care. And when a critical mass of effects accumulated, Gilead was able to put out that warning....and that's what I'm getting at. Send any concerns to your doctor, to Gilead, to the FDA where they can evaluate them.

But issuing warnings on a message board based on one experience is not helpful. Describing the experience, of course, I want to learn about it....and file it away for the future.

And another issue? Drug companies are competing fiercely. There are Gilead investors and AbbVie investors that lurk and I know some subscribe to these boards......Which is why information, warnings, etc.,  has to be filtered, knowing all these other factors. And some people simply don't have the time, the resources to explore all this...

Best of luck in your road to a cure, Jay. We all want what's best for ourselves and fellow HCV warriors...
Meg.

[hc]

I really did not expect my message to generate an argument. I am posting one more time in hopes of redirecting this conversation in a more productive way.

I initially posted in hopes of providing information about a possible and serious side effect since there has not yet been much scientific data produced regarding the effects of Harvoni on older patients (in their 80s), who process medicines differently than younger patients and are more likely to be taking multiple medications and who were not included in proportionally large numbers in the trials. Also there have been no studies according to Gilead (we have contacted them) on possible drug reactions between the pituitary medicine and Harvoni. Memory loss was a side effect that was experienced by less than 2% of patients in the initial clinical trials (see Gilead monograph on their Canadian website). If anyone on this list has information about scientific studies that I do not know about that address these issues, I would love to hear about it.

My family cannot wait for new double blind scientific studies to be done or for more studies to be done on patients in their 80s, and neither can my mother's doctors, who have to diagnose each patient based on available evidence, observation, experience, and ruling out other possible causal factors. After conducting every possible test for other causes, it is several of her doctors (and she has highly respected doctors) who have concluded that the most likely cause is either Harvoni or Harvoni interacting with Parlodel, and they have taken her off Harvoni. This does not prove that it is Harvoni or Harvoni combined with other meds that caused the confusion, memory loss, and coma, but the doctors believe it is likely and they are currently treating her based on this theory.

I posted this information not to detract from the wonderful gift that Harvoni has given to those many patients it has healed of Hepatitis C with minimal or no side effects, or to dissuade others who could be cured from taking it. Believe me, my family was elated when my mom was approved for Harvoni. Rather, I decided to let people on this list know in case there are others like my mom, who may be in their 80s, may be experiencing symptoms similar to hers, may be on pituitary meds, and may not know anyone else in the same boat. I thought it would be helpful for others to have this information about one case of a rare suspected side effect or drug interaction in order to make their own informed choices or possibly in order to learn that there are others going through what they may also be going through. Thankfully, no one else has responded thus far to say they have had this experience while on Harvoni.

When I used the word "warning" in my initial post, which seems to have created a lot of controversy, it was to warn of a possible causal effect that my mother's doctors believe may exist, not to claim that this causal effect has been proven. I hope that is more clear. Perhaps I should have used those words in the first place. It has been a difficult week.

I hope this discussion will now stop or else move forward in a more productive way. THank you to those who have posted words of support, including Dragonslayer in the first response. My family has already informed Gilead of the suspected adverse effect and we will be informing the FDA.

[Lynn K]

Hi Defendo

I did one round of interferon mono therapy 3 shots a week because that was all there was for 6 months I was a NULL responder. Then I did 2 treatments with the new SOC 6 months of Interferon with ribavirin one was in a clinical trial. Again a null responder.

I was not allowed to try telaprevir interferon and ribavirin when it was approved even begged the doctor and asked for a second opinion. The reason I was not allowed was before the drugs were approved I was diagnosed with F4 cirrhosis in January 2008. So treating with interferon and telaprevir would be too dangerous for me and odds of SVR were about 14%.

I had no treatments available to me from 2008 so during that time I have been waiting to become decompensated and become disabled from liver cirrhosis and be waiting for a transplant hoping I would get one before it was too late.

Last year I finally had a treatment I could take I treated for 12 weeks with sovaldi olysio but unfortunately when tested 12 weeks post treatment I had relapsed even though I was not detected at weeks 4 and at EOT 12.

So let me say that I would suffer through any side effect to be cured and that also except for the anemia from the Ribavirin I am taking causing me to feel basically run down and tired I feel fine.

Sure I caught the cold that was going around my community but that is not from Harvoni. Sure I had some diarrhea once or twice Harvoni or bad food? I suspect bad food.

But other than that not much different on treatment than off. If you have aside report it per the instruction on the prescribing info sheet.  They do want to know

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

-------------------------------ADVERSE REACTIONS-----------------------------
The most common adverse reactions (incidence greater than or equal to 10%, all grades) observed with treatment with HARVONI for 8, 12, or 24 weeks are fatigue and headache (6.1)

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

But whether the knee pain some have reported is Harvoni related or maybe just you twisted it a bit in your sleep or other sides some are having are truely form Harvoni or from just life in general remains to be seen

Best to all on treatment

147 days down 21 to go

[Lynn K]

hc

Thanks for bring up your moms troubles with the limited info on treating much older patients who have multiple this information is very important to the researchers.

Yeah maybe "warning" was kind of the trigger. Possible just as an FYI that if you are older or have medical problems beyond liver disease you should maintain a close connection with your doctor and be careful to monitor for side effects.

Good luck to you and your mom I hope she regains her strength soon!

[Defendo]

I will try to address each reply in one post. Please bear with me.

First, KimInTheForest is right on and understands exactly what I am saying. Thank you Kim.

Meg, Thank you also. I did not intend to be confrontational.  However, in my past experience with tx I suffered a multitude of side effects. When I reported them to my doctors, I was told that it must be something independent of the tx.  I was told repeatedly that what I reported was not "clinically proven".  I was already suffering horribly and simply wanted some support and confirmation. This type of approach only caused more suffering and distress.

Hello hc, you did not start an arguement, only a debate. It is a good debate and already  has elicited responses from others who have or had "unproven" sides. You did nothing more than provide valuable information.  Thank you and good luck to your mom.

Hi Lynn, you did not say if you experienced severe, moderate or minimal side effects while doing the previous tx.  I used to go to support groups and there was always several people there who seem to get energized and stronger while on interferon.  Some would say that they felt better than ever on interferon and could not understand what most of us were going through.  Of course I was depressed and irritated (riba rage), so eventually I just stopped going because I was afraid I would lose control of my temper.

As I understand your post, you are doing well on Harvoni and have minimal side effects.  Again, different people react differently to medications.

As for me, I am two weeks in and I am experiencing moderate, occasional headaches, occasional nausea, sporadic lost of appetite and extreme sleepiness.

The worse is that I already suffer from chronic fatigue and in the last two weeks the Harvoni seems to have exasperated the fatigue. I will ride it out and, hopefully, the fatigue will slowly diminish.  While troublesome, the sides so far are nothing like the severe sides of interferon and riba.

The major issue for me currently is the joint pain in my knee, which started on the 7th day of taking Harvoni. I could hardly walk for three days. Believing this to be gout, I began drinking sour cherry juice and my knee began to improve so that the pain is gone, but some soreness remains. So I am monitoring this condition.

Whether it is caused by Harvoni or not is what I want to know. I believe it is. I was hoping to find out if anyone on this forum experienced any joint pain. Since then I have found others who experience joint pain while taking Harvoni.

After all, the purpose of this tread is to discuss side effects people are experiencing while taking Harvoni. We should not filter or censor what we do not agree with.

This is a journey that I and many others have waited years for (14 years for me) and I am hopeful that I will finally clear the dragon from my body. I would love to have the energy and vitality I use to have and Harvoni is my silver bullet!

Good Luck to everyone!
Jay

[kaemicha]

I'm checking in and I have news. First, I want to thank Lynn and hepconder for their taking my concerns seriously. I know you all are but they have helped me with my immediate concerns.

So, I'm on week 5 and it's been pretty ok except night before last, it took me over 7 hours to get to sleep. Does this happen to anyone else? Last week, was great. This week is more challenging, much nausea, but doable. I do keep in mind what hepconder said I do believe that it is different for everyone but I'm trying to take it a bit easy..or not. I went out today, did ok..but had to come home early.

Lynn, I think you'll be happy to know that I took your advice and booked my trip to Paris!
After reading that you went to Italy while on Harvoni it made me believe that I could do Paris pretty ok. I'm going with a friend, she knows Paris and the doctor gave me the ok. His office called Monday and told me that my labs, outside of the constant low sodium, looked great! This is all so encouraging.

This forum gave me my life back and I just can't thank you all enough!

Michelle



 

Hi Michele,

Sorry for the delay and want to say that I am very sorry if I worried you. Yes weeks 5 thru 7 were the hardest for me but as you see from everyone on here the symptoms and circumstances for each individual are different.
I am in sales and having to look at people in the eyes and carry on any type of long term conversation when your head and body hurts is very hard. I would get dizzy and actually start to get a slight panic attack right in front of them. Almost ran out of the room once...LOL But I was a typical stubborn man and didn't tell anyone at work either. I finally told one person so I could cut down to 4 days a week at work and that helped.
22 pills left and the last 2 days I have been working in the yard and yesterday I hit the heavy bag for the first time in months. I know my body is going to be much stronger in just another month and then I am going to get in great shape.
Again I apologize for worrying you. I have to say also that going thru several days in a row of straight pain is not a good idea. That's what gets you depressed and anxious. I went to Colorado and got some cookies and chew one every three days or so. It makes me feel better and it kind of resets the system. I know some don't agree with polluting your body like that but the doctor also told me not to take Advil because of the damage to your liver. So I gave it up weeks 5 thru 7 even though I have been taking it for 15 years because it helps my back. As soon as I started taking it again my muscle aches got much better.
Meg you and I sound like we are on the same track and pretty much with the same effects. The tinnitus is crazy isn't it and very difficult to manage but a big Congrats to you and everyone that are getting close to finishing and clean blood!!  WooHoo!!!

[Lynn K]

Hi Jay

On the interferon I had the advertized flu like symptoms I felt like I was just getting over the flu for 6 months or felt like something the cat dragged in. I worked the whole time on all treatments except for 2 weeks on the riba my HGB got dangerously low so my doctor gave me epotin and after 2 weeks I felt better and went back to work.

Yes everyone does respond differently to medications some have more problems especially if they have other problems already like your gout. But the majority only have the mild side effects listed. Yes I had some headaches and the probably were from the Harvoni but for me they were very mild and barely noticeable and sometimes I would take a Tylenol no big deal for me.

But except for Hep c and cirrhosis I am in pretty good shape. If it weren't for those illnesses I am in good health although I could stand to lose 30 lbs and get back to the gym but waiting to get off the riba first so I can get my HGB back up to normal.

Sorry you are experiencing a more difficult treatment than others but as I have said on occasion I would walk over hot coals with glass if it would cure my hep c and give me a chance at a normal life span.

Hope treatment becomes more comfortable for you and that you recover quickly post treatment and most importantly make it to SVR forever.

[Lynn K]

Bon voyage Michelle!

À cœur vaillant rien d'impossible!

"To a valient heart nothing impossible."

[dragonslayer]

Hi Jay,

I'm so sorry you had to go thru ifn therapy. For various reasons I was ineligible.   And you're right, it did indeed take quite a while, the accumulation of  patient experiences, for some of the side effects to be attributed to it....

And I think we agree much more than we disagree. I think that Paul and I were responding to the nature of the tone of the post. Warning: etc......

The reason we know about the amiodorone side effect is because people reported them to their doctors. Were getting good followup care. And when a critical mass of effects accumulated, Gilead was able to put out that warning....and that's what I'm getting at. Send any concerns to your doctor, to Gilead, to the FDA where they can evaluate them.

But issuing warnings on a message board based on one experience is not helpful. Describing the experience, of course, I want to learn about it....and file it away for the future.

And another issue? Drug companies are competing fiercely. There are Gilead investors and AbbVie investors that lurk and I know some subscribe to these boards......Which is why information, warnings, etc.,  has to be filtered, knowing all these other factors. And some people simply don't have the time, the resources to explore all this...

Best of luck in your road to a cure, Jay. We all want what's best for ourselves and fellow HCV warriors...
Meg.

Hi Meg.. I completely agree with both you and Lynn.  The only way to get these issues and provisos regarding the dispensing of Harvoni into the prescribing media is by alerting Gilead, FDA, prescribing doctors, and possibly, the specialty pharmacies doing the dispensing.   

Meg, regarding your question re life after Harvoni, Ill simply paste in here what I wrote in response to another thread:

"Sleeping better, more energy, better mood, much clearer in the head, many fewer aches and pains including the disappearance of that sporadic but nagging upper right quadrant pain as well as what presented as tendonitis in both elbows (which also could have come from grabbing my motorcycle bars too tightly or doing too many barbell curls with too much weight), palms less red, etc .....   And that's just for starters  "   

 These are the major issues I found with HCV, and Harvoni has removed the lion's share of all of them.  I found Harvoni to be almost 100% free of ill effects. I experienced more headaches than normal, and occasional fatigue, but at the end of the day, Id have to call it a piece of cake.. And what Im hearing from many earlier treatment survivors, compared to that, Harvoni's a breeze.  Unfortunately, for some, this doesnt appear to be the case, and for those folks, I hope things get easier.   I wish everybody well, and a speedy path to SVR!

[kaemicha]

Bon voyage Michelle!

À cœur vaillant rien d'impossible!

"To a valient heart nothing impossible."

Thank you, Lynn. Will you come along as a translator?

Please never take Tylenol. Acetaminophen will kill our already unhealthy livers. Tell your doctor. He should know. That and alcohol, I was told never to use again.

[Lynn K]

For people with cirrhosis Tylenol is the recommended treatment for mild pain. This is what my hepatologist recommends. Tylenol is only dangerous if you exceed the recommended daily limit of 2000 mg remembering the many combo medicines like say Nyquil have a lot of Tylenol so read labels.

Advil, aleve, and aspirin are too dangerous for patients with cirrhosis because of increased gastrointestinal bleeding risk as well as renal problems associated with advanced liver disease.

And in general I don't take much in the way of pain meds.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861975/

Pain management in patients with cirrhosis is a difficult clinical challenge for health care professionals, and few prospective studies have offered an evidence-based approach. In patients with end-stage liver disease, adverse events from analgesics are frequent, potentially fatal, and often avoidable. Severe complications from analgesia in these patients include hepatic encephalopathy, hepatorenal syndrome, and gastrointestinal bleeding, which can result in substantial morbidity and even death. In general, acetaminophen at reduced dosing is a safe option. In patients with cirrhosis, nonsteroidal anti-inflammatory drugs should be avoided to avert renal failure, and opiates should be avoided or used sparingly, with low and infrequent dosing, to prevent encephalopathy

[Defendo]

Thank you Lynn.

I've had this virus for over forty years, so I am fortunate that my liver is not decompensated.

I agree with you, the ribavirin was the worse. I could not climb two flights of stairs without huffing and puffing and wheezing when I got to the top.  And the riba rash was horrible, especially in the last 3 months.  My doctor almost discontinued the treatment because of anemia.

After I did not respond to tx, I did not just give up. I turned to alternative medicine. I began using chinese herbs and acupuncture in hopes of slowing down the liver destruction.  I even traveled to China three times and drank a tea made of raw chinese herbs. Afterwards, my liver inflammation was greatly decreased on a liver biopsy. However, I have not been back to China since 2009 and the inflammation is back big time.

I am 63 year old, so I think age plays a major role in the severity of side effects.
I got this virus in the early 70's.

Since I am only 2 weeks into tx, I am just noticing and recording any issues I am experiencing.  I will use acupuncture to help alleviate some of the sides. Like Chinese herbs, acupuncture has to be routinely done to maintain optimum "Qi".

Please understand that I am so excited to have this opportunity. I hope it is a life changing event for me.

BTW, the joint pain I am experiencing now on Harvoni is similar, but also different from previous episodes. That is why I strongly suspect it is caused by Harvoni. Time will tell and I will keep you posted. 

[Defendo]

Lynn,

Are you currently taking Ribavirin and Harvoni?

[Lynn K]

Yes 24 weeks of Harvoni and part way in I asked my doctor what she thought about adding riba for someone with my treatment history especially after relapsing on Sov Oly last year. So buy the time it was all approved I was starting week 9 of Harvoni.

When I finish on May 4th I will have been on Harvoni for 24 weeks and Riba 1000 mg for 15 weeks. My doctor said wish we had thought of this sooner to add the Riba

[kaemicha]

Lynn,

I appreciate your vast knowledge and know that this works for you and I'm certain you know what is best for you.
For me, with advanced liver damage, again the only thing I've ever been told not to do was take Acetamin  or drink and I don't want to ever cross that advice. I do thank you for all the information included in your post.
Michelle

For people with cirrhosis Tylenol is the recommended treatment for mild pain. This is what my hepatologist recommends. Tylenol is only dangerous if you exceed the recommended daily limit of 2000 mg remembering the many combo medicines like say Nyquil have a lot of Tylenol so read labels.

Advil, aleve, and aspirin are too dangerous for patients with cirrhosis because of increased gastrointestinal bleeding risk as well as renal problems associated with advanced liver disease.

And in general I don't take much in the way of pain meds.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861975/

Pain management in patients with cirrhosis is a difficult clinical challenge for health care professionals, and few prospective studies have offered an evidence-based approach. In patients with end-stage liver disease, adverse events from analgesics are frequent, potentially fatal, and often avoidable. Severe complications from analgesia in these patients include hepatic encephalopathy, hepatorenal syndrome, and gastrointestinal bleeding, which can result in substantial morbidity and even death. In general, acetaminophen at reduced dosing is a safe option. In patients with cirrhosis, nonsteroidal anti-inflammatory drugs should be avoided to avert renal failure, and opiates should be avoided or used sparingly, with low and infrequent dosing, to prevent encephalopathy

[dragonslayer]

Lynn,

I appreciate your vast knowledge and know that this works for you and I'm certain you know what is best for you.
For me, with advanced liver damage, again the only thing I've ever been told not to do was take Acetamin  or drink and I don't want to ever cross that advice. I do thank you for all the information included in your post.
Michelle

Kaemicha,

What were you told to take for headaches and other pain symptoms?

[Defendo]

Interesting.  I asked my nurse if Ribavirin might be added to Harvoni during my tx and she said that my doctor did not combine the two.  But my reason for asking was because I knew some people were doing both and I did not want to use Ribavirin again. I did not want to get into tx and then have the doctor tell me he was going to add it. So I wanted this understood right in the beginning.

[kaemicha]

Kaemicha,

What were you told to take for headaches and other pain symptoms?

I've never been told NOT to take anything but Tylenol but generally am given Ibuprofen  as a substitute for Tylenol.

[Lynn K]

Michelle do you have cirrhosis?

Before I was diagnosed with cirrhosis that was what my doctor said as well but things change when diagnosed with cirrhosis that was when they said if you must take a pain med ONLY take tylenol.

Have you been checked by upper endoscopy for esophageal varicies? I had varicies that required banding and also have portal hypertensive gastropathy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2916868/

Patients with cirrhosis are at an increased risk of gastrointestinal hemorrhage, with the most common source being gastroesophageal varices. However, there are gastrointestinal mucosal lesions typical of cirrhosis that may also bleed in these patients, namely portal hypertensive gastropathy (PHG) and gastric vascular ectasia (GAVE)

So for me bleeding is a greater risk than liver damage becomes secondary. But I do try not to take any pain meds if I can avoid it.

If you have cirrhosis do you see a hepatologist associated with a liver transplant center?

My doctor is the head of the liver center at a hospital in Seattle and a transplant surgeon.

[dragonslayer]

Interesting.  I asked my nurse if Ribavirin might be added to Harvoni during my tx and she said that my doctor did not combine the two.  But my reason for asking was because I knew some people were doing both and I did not want to use Ribavirin again. I did not want to get into tx and then have the doctor tell me he was going to add it. So I wanted this understood right in the beginning.

Ive been told some doctors are doing it for cases not unlike Lynn's, where they want to throw everything at the virus and dont want to chance another tx failure.    This despite the fact that the Gilead trials showed very little if any advantage to doing so, which is probably why your doctor didnt routinely do it. 

[Lynn K]

Hey Jay

What can I say 3 time null responder plus Sovaldi Oly relapse with cirrhosis for over 7 years I cant afford to fail this treatment. If adding interferon and telaprevir might help I would ask for those too.

If I fail I figure I may be running out of time and what treatments are left for me?

So basically failure is not an option so that was why we added the Riba. I might need that 1/2 a percentage point to beat this thing

[Defendo]

Lynn and Michelle,

I was told that Ibuprofen is safer than Acetaminophen too. My doctor is a liver specialist too.

In fact, I separated my elbow in a fall around 5 years ago. The emergency room doctor took note that I have HCV and ordered pain medication without any  acetaminophen. I was given demerol only and told to supplement with Ibuprofen for any inflammation.  At the time, I was impressed that this doctor knew the risk of taking acetaminophen with liver disease. 

Looks like another controversy...

[kaemicha]

Thanks for asking, Lynn and yes, I do have cirrhosis. For the past 25 years I had the same internist that I met when I was in the hospital. He was the first to tell me about Tylenol usage as have ensuing doctors. I will say that my internist, while good-he always seemed to resent the fact that I hurt my liver by drinking and never looked further into treatment. So, when I'm trying to say is that maybe I don't have new information.

My Gastroenterology seems to be on top of it though. I haven't had my 'oscopies' yet, but he said after the Harvoni, then I do that. I don't want to (whine) but I'll do what I have to.

I have only seen my GI doctor twice, but his office does great follow-ups. I am scheduled to see him, GI doctor, this next Wednesday and now I have plenty of questions to ask him..the first one being about Tylenol!

Michelle

Michelle do you have cirrhosis?

Before I was diagnosed with cirrhosis that was what my doctor said as well but things change when diagnosed with cirrhosis that was when they said if you must take a pain med ONLY take tylenol.

Have you been checked by upper endoscopy for esophageal varicies? I had varicies that required banding and also have portal hypertensive gastropathy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2916868/

Patients with cirrhosis are at an increased risk of gastrointestinal hemorrhage, with the most common source being gastroesophageal varices. However, there are gastrointestinal mucosal lesions typical of cirrhosis that may also bleed in these patients, namely portal hypertensive gastropathy (PHG) and gastric vascular ectasia (GAVE)

So for me bleeding is a greater risk than liver damage becomes secondary. But I do try not to take any pain meds if I can avoid it.

If you have cirrhosis do you see a hepatologist associated with a liver transplant center?

My doctor is the head of the liver center at a hospital in Seattle and a transplant surgeon.

[Defendo]

Lynn,

I wish you luck. I can not imagine what you have been through, in addition to dealing with all the complications of severe liver disease.  You are a brave warrior!

[Defendo]

Thanks Paul!

BTW, I noticed that your profile says you likely got HCV in the early 70's.  So were you part of the sex, drugs and rock $ roll generation like me that did some stupid things.

Peace,
Jay

[Lynn K]

Yeah I used to see a gastroenterologist all thing gut specialist but moved up to a hepatologist a liver specialist.

I will say the FIRST thing they did when I was diagnosed with cirrhosis was set me an appointment for an upper endoscopy plus they had me get the pneumonia vaccine usually reserved for people over 65 years old I was 50 at the time. I also was immunized against Hep A and Hep B.

No controversy about Tylenol

For folks without cirrhosis Tylenol is to be avoided to prevent liver damage. For those with cirrhosis and portal hypertension bleeding out is a greater risk so Advil (Ibuprophen), Aleve, and aspirin etc are to be avoided only leaving Tylenol in limited dosing available for pain management.

Like I said the doctor also told me to avoid Tylenol but when I was diagnosed with cirrhosis I was surprised when they said to now only take Tylenol now because of the risk of bleeding to death was greater concern than additional damage to my irreparably damaged liver

[kaemicha]

I think this shows how little is known about hep c. Harvoni is so new and I haven't been told to take or not to take anything. The first time I ever I have ever gotten a new med without warnings against mixing it with any other medicine.

I did have an upper endoscopy, when I was diagnosed 28 years ago. I need new information.

Over and out!
Michelle

Yeah I used to see a gastroenterologist all thing gut specialist but moved up to a hepatologist a liver specialist.

I will say the FIRST thing they did when I was diagnosed with cirrhosis was set me an appointment for an upper endoscopy plus they had me get the pneumonia vaccine usually reserved for people over 65 years old I was 50 at the time. I also was immunized against Hep A and Hep B.

No controversy about Tylenol

For folks without cirrhosis Tylenol is to be avoided to prevent liver damage. For those with cirrhosis and portal hypertension bleeding out is a greater risk so Advil (Ibuprophen), Aleve, and aspirin etc are to be avoided only leaving Tylenol in limited dosing available for pain management.

Like I said the doctor also told me to avoid Tylenol but when I was diagnosed with cirrhosis I was surprised when they said to now only take Tylenol now because of the risk of bleeding to death was greater concern than additional damage to my irreparably damaged liver

[MEG]

Indeed, Lynn and Michelle re: Tylenol. What you write, Lynn, is what I have been told. It does appear counterintuitive until one learns the pathophysiology of cirrhosis(as you, per usual, explained beautifully)....

I would just add that those with low platelets---which generally goes hand-in-hand with cirrhosis but not always, must stay away from aspirin and the other NSAIDS..

Caveat--check with your doctor or Gilead or specialty pharma first!

[Defendo]

I find this all interesting.  So once you are cured, which would be the best to use?

[Defendo]

My goodness, this is troubling. I have cirrhosis and low platelets and no one has told me this.  In fact, I told my nurse last week that I was using Motrin to help with the gout inflammation.  She did not say anything.

[dragonslayer]

Thanks Paul!

BTW, I noticed that your profile says you likely got HCV in the early 70's.  So were you part of the sex, drugs and rock $ roll generation like me that did some stupid things.

Peace,
Jay

ROFL... you better believe it!   Long before anybody ever heard of Hepatitis C.   We were in college, and I went to a particularly progressive liberal arts school here in the northeast.  Seemed like everybody was popping, snorting, drinking, or shooting something.   I got caught up in all the nonsense  for a few years, but managed to graduate just the same.. Here's the weird thing. I caught a case of Hepatitis B back in 71, and it was no mystery where it came from.. I turned yellow, peed brown, and had to take my second sophomore semester off to recuperate.   I was never diagnosed as Non A Non B, but I have to figure this is when I caught it... Which means I had it for 40+ years. I did a ton of drinking right into the mid '80s, so Im extremely lucky my liver is still in good shape.    Back then, we all knew HBV was a potential risk, but it never carried the stigma or serious consequences, so far as we knew, as HCV...  Back then, most of us jerky kids felt like living large and leaving a good looking corpse... Didnt think we'd ever get old.. We were really really dumb ... or to put it gentler, just young and naive, doing stupid stupid things that we knew were stupid. .. But we didnt care... we had other, more pressing concerns.. Ahh.. the Counter Culture.   Counter too good sense, that is...  Well, thats another day and another era.. Thank goodness, for most of us, its not too late....    Kids have to learn early that what they do when theyre  young can effect them for decades to come... Not that it would mean anything to most of them.. . Youth is definitely wasted on the young...   Or, the youth are just Wasted!

Rock on... Oops, I forget myself.. What year is this again?

Peace out..

[MEG]

Dear @hc

I read your entire note and please don't apologize for bringing your mom's experience here. I feel terrible for getting involved without first telling you how badly I felt that your poor mom and family went thru that nightmare---- as a nurse it was my first thought upon reading your post and then got distracted.

I'm delighted to know that she is improving. Indeed, her age, her other medical conditions, and medications make her treatment more complicated. Also because of the above, I wouldn't be surprised if her physicians ask if they can publish a paper about her experience. A case study.  It's valuable information for treating-professionals, family members the bench scientists to know.

She sounds like she's in excellent hands with your family and her physicians. As you know, too many elderly her age don't have the help they richly deserve.

I'm also glad to hear that of the 12 weeks, she only missed 6 days. Do you have a viral load yet? Please keep us posted on her progress.

To others reading this. Please know that I absolutely respect and know that we all know our bodies best and do not minimize people's symptoms and suffering. When I first arrived here I posted in a note to Katie how my own internist did not believe me when the hcv symptoms initially surfaced. It took my psychotherapist to call her and insist she check deeply for an organic cause of my fatigue/depression/sinus issues.

Re: the discussion that ensued? I agree with Jay, it got a dialogue going where ideas were shared and clarified.

Wishing your mom and family continued healing and hope.

[Defendo]

FAR OUT!

It sounds as if we had identical life experiences. I spent 1 year between high school and college living on the streets of Atlanta 1969 - 1970.  It was a great experience, but I was young and loved the wild side.  At the time I knew the risk of getting Hep B, but it did not stop me. In fact I got Hep B and got sick too. 

I continued to abuse my liver in college too.

After college, alcohol consumption was normal activity (HAPPY HOUR ANYONE). I drank pretty heavily "after hours".

You are indeed fortunate that your disease is not worse. 

But you know what, I would not change the experience for anything. I attend the first Atlanta rock festival and had one of the best times of my life with great live music and tripping the 3 days.

I would have been in woodstock, but I was in jail for possessing marijuana. The funny thing is that it was not marijuana, but rolling tobacco. Back in those days, cops did know the difference. Hard to believe today!  I wished it was marijuana, but is was the dry season (something else that has changed) and marijuana was hard to get in the summer. 

When you think about it, all though we did some stupid things, we had fun doing them!  And we had so much more freedom than young people today.  I could never get away with have the crap I did when I was young today.

[MEG]

@Defendo/Jay

Ouch---drives me nuts when I hear about some medical staff(you may have read upthread that I am a nurse), don't thoroughly know their stuff...

Indeed, I would stop taking the Motrin now. You can take this advice to the bank.

Have you ever tried Voltaren ointment? It's an NSAID that your rub into the area that hurts. 90% of it misses the liver.  I was placed on it about 2 weeks ago for a tendonitis---induced by Levaquin antibiotic!---it was a known side-effect though and my sinusitis was extremely stubborn.

Anyway, my pcp put me on it so that I would not burden my liver with the oral NSAIDs..I do not have cirrhosis and my platelets are fine----we just wanted to do whatever possible to reduce my liver's work while being treated on Harvoni..

Btw, NSAIDs like ibuprofen also go right thru the liver like Tylenol...

PS: Perhaps a call to the specialty pharmacy would help you clear this up re: which pain killer to take?

[Defendo]

Thank you Meg,

I will call the specialty pharmacy tomorrow and see what they say. I use CareMark.

I will also check with my nurse again and test her with this new information.

[Lynn K]

Hi Jay

Well I guess that is a very good question I was thinking about that as well. I mean I still have cirrhosis and a bleeding risk for the foreseeable future but also my liver is still damaged and now there is a hope it could recover.

I guess I will have to ask my doctor but my guess is that since the bleeding risk is more life threatening I would still be recommend to, if I have to take a pain med, to use Tylenol no more than 2000 mg /day and short duration use.


Michelle

Wow you were diagnosed with F4 cirrhosis 28 years ago! Do you have any complications?

I was only diagnosed with cirrhosis after a biopsy 7.5 years ago and diagnosed with hep c 24 years ago but probably have had hep c for 37 years.

I had that first upper endo with no varicies found. They did a repeat at 2 years and found grade 2 varicies, then repeated again one year later when they found the grade 3 so I had to have the bandings done.

I hope they did tell you about antacid medicines and Harvoni that is very important information.

Yeah Meg

My platelets, due to portal hypertension, causing my spleen to enlarge and sequester platelets, my platelet count has been between 80 and 90 for several years now. Again adding to the bleeding risk

[dragonslayer]

FAR OUT!

It sounds as if we had identical life experiences. I spent 1 year between high school and college living on the streets of Atlanta 1969 - 1970.  It was a great experience, but I was young and loved the wild side.  At the time I knew the risk of getting Hep B, but it did not stop me. In fact I got Hep B and got sick too. 

I continued to abuse my liver in college too.

After college, alcohol consumption was normal activity (HAPPY HOUR ANYONE). I drank pretty heavily "after hours".

You are indeed fortunate that your disease is not worse. 

But you know what, I would not change the experience for anything. I attend the first Atlanta rock festival and had one of the best times of my life with great live music and tripping the 3 days.

I would have been in woodstock, but I was in jail for possessing marijuana. The funny thing is that it was not marijuana, but rolling tobacco. Back in those days, cops did know the difference. Hard to believe today!  I wished it was marijuana, but is was the dry season (something else that has changed) and marijuana was hard to get in the summer. 

When you think about it, all though we did some stupid things, we had fun doing them!  And we had so much more freedom than young people today.  I could never get away with have the crap I did when I was young today.

Like Wow, man... Seriously, sounds so familiar..   Talk about Woodstock.... 3 days of Peace and Music....... And more acid than you can shake a stick at, and more mud... I lived through it all... I'll confess the decade from about '65 to '75 had a lot of good to it... A lot of personal growth through personal expression.    The one thing I will always regret though is going just a step too far with this..... I'll never forgive myself for dabbling in the dark side which has led me here.  The fact that Im svr at this point doesnt excuse what I did..... Other than that, it was mostly good.  Speaking of your bust, listen to this. .. I was in a VW bug with 3 other classmates, when we get pulled over for what appeared to be a routine stop.. Cop asked me for a cigarette during the stop which I gladly handed to him.  3 months later, at 4am, the cops had busted down our dorm door, and had warrants for most of us.. In my case, I was facing a class A misdemeanor for possession of a joint, which the cop claimed, is what I gave him!  Naturally, I got off... This was just another in a long string of harassment ploys against the college longhairs.   But seriously, I gave the cop a joint?   

Your story and mine sound very parallel indeed.   And just look at the bonding that's resulting from our public debate earlier in the evening!   Indeed, this has turned into quite an enjoyable discussion... . 

I didnt want to take the thread too far off topic, so returning to the very real business of people dealing with horrendous issues,  my hat goes out to all of you suffering through cirrhosis.   You are the true warriors here.. Most of you have endured more than I could ever conceive.    Its so unfortunate that Harvoni wasnt a reality before your livers advanced to the state they're in now.  Im so hoping that SVR will be achieved, and, at least, the damage halted, and, hopefully, improved over time.

And finally, to HC, I wanted to sincerely apologize to you.. Upon rereading things, my response comes off as sounding cold and callous.  i reacted hastily to the 'warning' as written in your post, and managed to pretty much disregard all the hardship you folks have been through.   I hope things go better for you and your family and that things look up for your mom... I know this has been hell for you... Hopefully, things have only one way to go from here....

[Defendo]

Paul,
I agree!

[MEG]

Thank you Meg,

I will call the specialty pharmacy tomorrow and see what they say. I use CareMark.

I will also check with my nurse again and test her with this new information.

Good. Keep us posted. And hopefully this gout will resolve itself soon.

[Lynn K]

Hi Jay

Do you have any cirrhosis symptoms? Have you had an upper endoscopy to check for varicies? If you have portal hypertension and varicies, portal hypertension gastropathy, or GAVE that is when the concern about NSAIDS and bleeding really kicks in.

[MEG]

@Lynn and @Jay

I guess I will have to ask my doctor but my guess is that since the bleeding risk is more life threatening I would still be recommend to, if I have to take a pain med, to use Tylenol no more than 2000 mg /day and short duration use.

I agree with you Lynn. It will take some time for your liver to regenerate enough, your other organs(portal hypertension) to normalize. But, that's all fine. After your SVR'd....your joy will be the best painkiller available. ;-)

[Lynn K]

True dat!

[MEG]

  !!!

[kaemicha]

Michelle

Wow you were diagnosed with F4 cirrhosis 28 years ago! Do you have any complications?

I was only diagnosed with cirrhosis after a biopsy 7.5 years ago and diagnosed with hep c 24 years ago but probably have had hep c for 37 years.

I had that first upper endo with no varicies found. They did a repeat at 2 years and found grade 2 varicies, then repeated again one year later when they found the grade 3 so I had to have the bandings done.

I hope they did tell you about antacid medicines and Harvoni that is very important information.

Yep! 28 years ago and no follow ups. I used to live on antacids. I don't know what the problem with them and Harvoni but I've stayed away from them because I saw something mentioned on here.
Bottom line on my cirrhosis is that I was treated poorly, had no follow up on my liver. Have been continually told I have 10 years to go -- 30 years ago. And, now I have hep c. That really is almost all I know.

[Lynn K]

How were you diagnosed 28 years ago with cirrhosis? Was it by liver biopsy? I believe that was the only way to diagnose cirrhosis at that time time. You might have been told you were F4. Do you have any complications of cirrhosis like swelling in your lower legs called edema or retaining a lot of fluid called ascities? Do you have an enlarged spleen? Do you have a very low platelet count below 100 or even lower?

I had liver Biopsies every 5 years after I was diagnosed with Hep C going from F1 to F2 to F3 and finally after being followed for 15 years F4 cirrhosis. Meanwhile I tried to treat my Hep C 3 different times with interferon based treatments but was a null responder.

Wow that is shocking verging on medical malpractice to just let a patient with cirrhosis wander off with out guidance unless you were non compliant with appointments but just to say yup you have cirrhosis see ya later with no further instructions that is insane to me!

Here is the link to the Harvoni prescribing information sheet that comes with every bottle of Harvoni and an excerpt of the specific information about antacids and acid reducers

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf


Table 3
Potentially Significant Drug Interactions: Alteration in Dose or Regimen May Be Recommended Based on Drug Interaction Studies or Predicted Interactions

Effect on Concentration

Acid Reducing Agents:

Ledipasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of ledipasvir.

Antacids (e.g., aluminum and magnesium hydroxide)
It is recommended to separate antacid and HARVONI administration by 4 hours.

H2-receptor antagonists (e.g., famotidine)

H2-receptor antagonists may be administered simultaneously with or 12 hours apart from HARVONI at a dose that does not exceed doses comparable to famotidine 40 mg twice daily.

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


Basically you can take Tums or Rolaids no closer than 4 hours before and 4 hours after taking Harvoni

If you take H2-receptor antagonists like Tagamet, Pepsid, Axid or Zantac as examples they must be taken at the same time you take Harvoni and 12 hours later if you need a second daily dose not to exceed 40 mg twice daily.

If you take a Proton-pump inhibitor (PPI) like Prilosec or Nexium the must be taken at the same time and on an empty stomach.

Taking acid reducing agents any other way then as described reduces the amount of the Ledipasvir component of Harvoni in you blood and reducing the effectiveness of the medicine as Sovaldi is not effective when taken alone.

They should have discussed any acid reducing medicines you are taking and given you explicit instructions on how to take correctly.

I was taking Prilosec occasionally and my nurse suggested if I can avoid taking it while on treatment that would be a good idea.

[Defendo]

Good morning Lynn,

No, I do not have symptoms of cirrhosis. I had an endoscopy done about 12 years ago and it show some scarring from acid reflux.  But no varices. So maybe that is why I it has been recommended that I use Ibuprofen instead of Tylenol.

[art1951]

I finally received by 12 week post treatment checkup results.  I am still undetected and AST=23 ALT=17.  It looks like I may be over this.  I am feeling much better and have my dr appointment next week to review the next steps.  I am able to exercise again and live a somewhat normal life.  My liver was diagnosed as having fibrosis so I have given up drinking alcohol and simply don't plan on drinking again.  I never was a heavy drinker and would drink socially about 6 drinks a year.

Although I did have headaches throughout the treatment they dropped off significantly 5 days after I stopped taking the Harvoni.  My PCP had me do a CT scan and determined that I have a sinusitis and this probably was made worse by the Harvoni.  They are treating the sinusitis now.

I have been keeping up with the board but not actively.  Work has been consuming all of my time.

Thanks for the support.
Art

[Karen1124]

Hi art1951,
Congrats to you!! Hopefully I will be joining you on June 24!
Thanks for the up date! Life is good!!   Karen

[bikergirl75]

I am new here, wish I had found this a while back!
I started Harvoni treatment 10 wks ago, and have been feeling kind of horrible. I am glad to see that I am not the only one.
I was diagnosed when I was 24 I am now 40, geno type1, I have no damage but my count is high! I have never tried any other treatment, and thank god for patient assistance programs, I pay nothing for my treatment!!!!
I have some good days and some horrible days. Headaches, nausea, body aches and foggy head! Side effects have not really gotten any better, I hate to say, but I know there is a light at the end of the tunnel and I cannot wait for this heavy burrden to be lifted off of my shoulders.
I am just happy to see that I am not the only person going thru this. Good luck to everyone, and Hopefully when I do my labs in a couple weeks I will BE FREE!!!!!

[Defendo]

Welcome bikergirl,

You are describing the exact sides I have been experiencing and I am only 2 weeks into treatment.  But I figure that these sides are nothing compared to the possibility of being virus free.

I am glad to here that you were able to get Harvoni thru an assistance program at no cost to you.  You are blessed!

I am curious.  You said that you are 10 weeks into tx, but have been undetectable yet?

Remember, all things are impermanent and you will experience this first hand when you have a SVR!

[Karen1124]

Welcome bikergirl,
I'm sure you have read on the forum that you need to drink a lot of water if you weigh 150 divide that by 2 you need 75 oz per day. It really does make a difference! Keep us up dated as to your progress! Best wishes to all here. Life is good!!   Karen

[bikergirl75]

Thanknyou for welcoming me. Karen I have been drinking as much water as I can!

Defendo. I have had no tests done yet. I mean since I started tx. I have to say it's nice to know someone else is having the same side effects,  one I forgot to mention is my eyesight, it has been very blurry and strained? ??!!!!
I know this med is brand new so it is hard for the docs to warn you on side effects,  but I would rather deal with these than let this disease take me young.
Also has anyone else had some pains in liver area? Or kind of forgetful??

[LeftCoastGuy]

Hello All!

Thanks for starting this thread, art1951.  I found it yesterday while searching online for information regarding what side effects I might anticipate with my beginning Harvoni.  I'd read "the literature", but I know from experience with other medications that the manufacturer only tells a part of the story.  Not that I'm suggesting they hide facts - not at all, I don't see why they would.  I just mean it's always nice to hear from those who have had real-world experience with a drug.

I don't mind admitting, I was pretty anxious yesterday, waiting for a UPS driver to show up with the meds I was to start taking.  Turns out he never did - that came this morning.  So, I'm a newbie here and to the drug.  Took my first dose at 11:30 this morning.  So far, so good.  About 90 minutes in, I felt the first wave break over me, as a sense of disorientation set in.  That increased for the next 2 hours, but has mostly subsided now.  Taking it slow, one step at a time. 

I've waited years to begin treatment.  Now that it's here, I have certain apprehensions about it.  One thing - I noticed somewhere in my reading somewhere, a person mentioned she was somewhat unsettled about "slaying her dragon", as she put it.  I have to say, that was among one of my first thoughts when I learned I'd been approved for treatment. 

I mean, I've been living with this disease for 40 years, slightly more.  It's become a part of who I am.  And, I should point out, I've been one of the lucky ones.  I've had virtually no symptoms beyond an acute hepatic episode back in the mid-70s, which lasted several months.  My disease has hardly progressed in all those decades.  My VL is well-elevated and my ALT/AST are as well.  My fibrous is minimal.  I mean, I feel truly fortunate to have done so well for so long.  I know many who haven't.  So, I felt somewhat peculiar when I got the news I'd begin treatment, and might actually get rid of this dreaded thing.  I'm not normally one to anthropomorphize things like this.  Yet I confess, I had a momentary hesitation about killing it off.  Anyone else experience anything similar?

[debham]

I've been on Harvoni for 15 days now at first I did feel a little off. You need to make sure you drink a lot of water and take your pill at the same time everyday. I feel pretty good today. I'm amazed. I too am a bit apprehensive about Harvoni being a cure because I've wait forever for this. I never had any other treatment due to every Dr. I saw said nope it wouldn't be worth the time and misery to go through the treatment because of it's failure rate. I'm type G 1a  my viral load is 2.3 mil. I'm not sure when I was infected but I've know since 2003. I do a cycle class at the local YMCA and have been able to continue to do so. I'm praying that this disease is erased from the planet. I keep my eye on the post treatment posts just because I want the reassurance. Good luck with your treatment. My side affects have been very mild.
  I'll be 61 this Saturday. One hour cycle class= 18 miles not bad for someone going through a treatment don't you think?  Drink water!!

[kaemicha]

Lynn,

I have been told nothing in 28 years except to not take Acetaminophen. Again, my doctor told me that since I had abused alcohol I would not be a candidate for a transplant. He moved to another state and it wasn't until I found a new Primary Care doctor and got pretty sick for them to get me to a Gastro-doctor. And, that took until 2 1/2 months ago and I'd already been sick since July.

And, one more thing about the Acetaminophen. I have no need to be right on this. I seldom am right but I do want to say that I've never had anyone suggest that I take Tylenol products-no NyQuil..has alcohol in it, I've talked to doctors, pharmacists, specialists. Everyone told me to stay away so I did and probably will continue to.
There used to be ads, not long ago, that exposed (?) Acetaminophen as bad for livers..so have I been fed wrong information all these years? Apparently. I find that all very confusing.
Lynn, I appreciate your concern and will go to the link provided after I send this.

And, bikergirl75, welcome! I'm pretty new here, too and I do know you're symptoms will get better. 

[Defendo]

kaemicha, Lynn and Meg,

I have been doing some of my own research on this issue and it appears that Lynn and Meg are correct.  Like keamicha, I was always told to avoid Acetaminophen, so this is a real eye-opener for me.

With Hep C, Avoid Ibuprofen

The CDC recommends that patients with hepatitis C should not use ibuprofen. Large amounts of the drug may stress the liver and raise your levels of liver enzymes. If you have chronic hepatitis C and choose to use ibuprofen as a pain killer, see your doctor regularly to monitor your health and check your liver function tests.

According to the National Institutes of Health, you shouldn't use ibuprofen if you have any type of liver damage, as you may be at increased risk of gastrointestinal bleeding. You also risk developing gastric ulcers and gastrointestinal pain.

Peace,
Jay

[Defendo]

But than again the VA says:

"Over-the-counter pain relief medications are usually not harmful. Check with your doctor first and take them in moderation. Overuse of acetaminophen (in Tylenol) can cause liver damage. Patients with hepatitis C should limit their acetaminophen (Tylenol) to two grams (four 500mg tablets) per day. Other drugs for pain include aspirin, ibuprofen, Motrin, Advil, Naproxen, and Aleve. They are safe in HCV patients who do not have cirrhosis. But, if a patient has cirrhosis, then ibuprofen, Motrin, Advil, and Naproxen cannot be taken at all. If you are not sure, always check with your doctor.
Hepatitis C Resource Centers
September 22, 2005; Last reviewed/updated: July 30, 2013

Why is there no consensus about this very important issue?

[audreywald]

I heard from a friend who heard from a friend that the relapse rate for people treated for less than 24 weeks is rising. Has anyone heard or experienced anything like this? Also, my friends insurance will only pay for 8 weeks, she is previously untreated but very nervous about going on Harvoni or any other med if she does not have a seriously good chance of a cure. Any info anyone has would be greatly appreciated.

[kaemicha]

But than again the VA says:

"Over-the-counter pain relief medications are usually not harmful. Check with your doctor first and take them in moderation. Overuse of acetaminophen (in Tylenol) can cause liver damage. Patients with hepatitis C should limit their acetaminophen (Tylenol) to two grams (four 500mg tablets) per day. Other drugs for pain include aspirin, ibuprofen, Motrin, Advil, Naproxen, and Aleve. They are safe in HCV patients who do not have cirrhosis. But, if a patient has cirrhosis, then ibuprofen, Motrin, Advil, and Naproxen cannot be taken at all. If you are not sure, always check with your doctor.
Hepatitis C Resource Centers
September 22, 2005; Last reviewed/updated: July 30, 2013

Why is there no consensus about this very important issue?

Whew! Thank you!! I didn't know much of this at all. So uninformed here. I've taken Ibuprofen most every day!

[kaemicha]

kaemicha, Lynn and Meg,

I have been doing some of my own research on this issue and it appears that Lynn and Meg are correct.  Like keamicha, I was always told to avoid Acetaminophen, so this is a real eye-opener for me.

With Hep C, Avoid Ibuprofen

The CDC recommends that patients with hepatitis C should not use ibuprofen. Large amounts of the drug may stress the liver and raise your levels of liver enzymes. If you have chronic hepatitis C and choose to use ibuprofen as a pain killer, see your doctor regularly to monitor your health and check your liver function tests.

According to the National Institutes of Health, you shouldn't use ibuprofen if you have any type of liver damage, as you may be at increased risk of gastrointestinal bleeding. You also risk developing gastric ulcers and gastrointestinal pain.

Peace,
Jay

Thank you all for doing this research. I cannot believe I have not been told any of this. Again, the only thing that was said to me before I started the Harvoni is that I only had 10 years to live! Yes, every year for the past 28+years!

Thank GOD for this forum!
Michelle

[Defendo]

Here is another,

Tylenol (acetaminophen) is toxic to the liver in large doses (such as in suicidal attempts where a patient ingests large amounts, often more than 10 grams of the medication), and also in situations where a patient drinks alcohol heavily while taking high doses of Tylenol. Tylenol with alcohol ingestion can be toxic to the liver with lower doses of Tylenol than without the alcohol.

Otherwise, for the general population, both Tylenol and Motrin (ibuprofen, an NSAIDS) have low(<1%) liver toxicity at the regular, recommended doses. Moreover, both drugs can usually be used, in the recommended doses prescribed by a physician, reasonably safely for the "flu" symptoms caused by interferon used for treating chronic hepatitis C.

With advanced, complicated cirrhosis from hepatitis C, for which interferon is rarely used, all drugs, including these, must be prescribed with great caution, if at all. In addition, in these patients with advanced cirrhosis, NSAIDS, including Motrin, can worsen or even precipitate hepatorenal syndrome (a serious condition with both liver and kidney failure) and possibly induce intestinal bleeding.