Harvoni Side effects

[BattleTheBeast]

Hi Elizabethfaraone,

Awesome post and diary you are keeping! I would tell you that you will feel better soon but I am not the one you should ask!

Keep hanging tough and doing exactly what you are doing, listen to your body and continue to be kind to it!

Hey Papa,

This is what happens when you don't sleep for 3 days, you get manic like I am right now............ I must stop and calm myself. I really need sleep. Oh and I have no interpersonal relationships right now because I am in hiding for my own well being and I love my family and friends to much to subject them to often to this Mel. For the clutter and cleanliness, I have my cleaning friend coming weekly just because I was sick before treatment even started so I knew I couldn't handle it alone with the teenage boy! But it really does feel better when the house is more organized.

And you will be ok no matter what, Harvoni is a cake walk, except my cake was made in an easy bake oven. Cake Boss is making yours!

Mel

[Katie]

Thanks for that site Mel!
What's strange is I looked up Harvoni side effects, which has ledipasvir /sofosbuvir and Solvadi has sofosbuir in it as well and the side effects listed only fatigue and headache as regularly occurring and hardly anything else.  One would think they would share more. Many of the side effects listed for Solvadi were what I experienced before treatment, from Hep C, so it is difficult to figure what is causing what.

I am so fortunate as my positives are still much greater than negatives, but then I do not have cirrhosis and this is the first treatment I have taken.  There are some on this forum who didn't experience any negatives until later on during their treatment so that may be coming for me.  I am still sleeping better than I have in years and am so grateful.

Sleep:
No caffeine after noon ( I do cheat with a little bit of chocolate in the early evening)

Stay hydrated throughout the day drinking a minimum of 1/2 gal of water

No Vit B12 after 2:00 pm (energy vitamin and it really wires me)

Magnesium and/or Taurine helps make you restful.  I would only take 1 pill before going to bed, which is less than they recommend (I use Gabatone and it really does make me peaceful but haven't needed it recently)

I always read for about 1/2 hour as reading helps my mind go to a different place and wind down preparing for sleep.

You probably know all of this Mel, but it is what has worked for me and prevented using drugs.  I have had horrible insomnia for close to a decade.

So 2015 is right around the corner and Here is to a Hep Free world for all of us, and for many more in the future!

Katie

[elizabethfaraone]

Sovaldi is the brand name for Sofosbuvir.

[Katie]

I know that Elizabeth, but mentioned it in case someone else wasn't sure.  Hope you are doing better today!Sounds like you are having a rough time of it  Lack of sleep is the worse as it affects everything else. Here's to Happy New Year!

[RiseUp]

Hi fellow warriors, took pill #10 today and very happy to report that I have had no side effects at all.  74 more to go.  Keep up the good fight everyone.

[Rubye]

Easy bake oven. Too funny Mel.

[BattleTheBeast]

Easy bake oven. Too funny Mel.

That's what happens when I am awake too long and delirious. I am laughing at all my posts yesterday and last night, oh my grammar teacher would be slapping my knuckles now!

I did sleep for 4 hours today and am about to try and knock myself out again. I'd like to have one semi-normal day this weekend.

Mel

[goodbyehepc]

I went to my doctor at 6.5 weeks into treatment, liver panel tests still normal. He decided to change me from 8 weeks to 12 weeks of Harvoni. I feel a lot better about that since at day 27 my virus was still detected. If he didn't change me to 12 weeks, I would have pushed it.
My vl was 3.8 million before treatment, but that test was take several months before I started the meds. In the back of my mind I always worried that just maybe I had a big spike in vl right before I started. Playing it safe.
I found out my doctor's wife was very ill and she passed away at a month into my treatment. That is when I found out about his wife. I know his mind was more on his family than his patients.

I am at day 54 today.
I feel better than I have in years. The overwhelming fatigue is gone, the stomach
related aches and pains are gone, the feelings of dizziness (almost vertigo) or gone.
These symptoms were all before I began treatment and rapidly began disappearing
after I began the meds.
Something is working and my body feels like it is rid of this virus. 32 more days and I am done. Taking this medicine for me, feels no different than taking a vitamin.

Genotype 1a
Infected for 25-39 years
Treatment naive

Hi
Just incase your doctor didn't mention it the trials show that Harvoni is better to take 12 weeks than 8- there is a higher cure rate with 12 and less chance of relapse than taking it for 8 weeks.
GHC

[Katie]

Glad you are doing so well Joe.  I am having the same result and am at day 24!  Next week, I can get my first blood work for my VL and I know it is going to be good news because I feel better than I have in YEARS! 

I am getting my spark back and my brain is working.  I was always very articulate and then about 12 years ago I started getting foggy and the last couple years I couldn't find the right word or name or date and I worried about getting Alzheimer's.  With my work I really needed to be sharp. I found my writing skills weren't impaired nearly as much.  I also felt like my vision was disconnected and I could be looking at something and not see it, if it was just slightly obscured.  Like I was looking through a tunnel.  All of that is going away. Harvoni is truly a miracle drug, and we are the lucky ones. Many went before us who didn't have this cure available.  I retired in 2013 so the stress of the job and of pretending I was healthy as an ox is gone and that's a blessing.  It is difficult to pull that off when you aren't sleeping and you have a difficult time completing a sentence sometimes. 

I will not be worried if it is NOT UD at 4 weeks but expect it to be way down.  For once I am excited about starting a New Year.  I welcome 2015 for me, for you and for everyone on this forum!  Bring it on!!!!

[goodbyehepc]

My BP is up, my Doc increased my meds to control. Had tinnitus prior to tx, but the sound (high frequency pitch) has increased. Day 8 of H and what I consider to be minor SE. I feel at times like the battle inside increases and have some weird sensations. 1 down, 11 more weeks to go.

Fight the Good Fight !!

Hi
I was getting the tinnitus myself but it stopped about 6 weeks into treatment. I'm now on my ninth week and experiencing something new- achy joints and pains in one of my legs in particular which I will go to the doctor on Monday to see what's going on. I was undetectable at week four.
GHC

[goodbyehepc]

GHC,
If I had the ability to take nap at 2:00 I would be doing fine.  I seem to recover quickly with a little rest.  I think I can manage this and it is getting better each week.  I work from 7 am till 5:30 each day.  I had thought about going home at lunchtime and resting but no longer feel it is necessary.

I do have additional energy now and am not sure if that is just because I am returning to normal or a side benefit of the Harvoni.  It does feel like my body is no longer having to fight the hep-c and I seem to be healing more quickly from infections etc.

Thanks,
Art

Hi Art
This is great news! You must be undetected by now  yes ? I have been getting join and muscle pain increasingly the past week. I'm not sure if it is from the medication or because I've dipped into some holiday sweets that have caused some inflammation in my body. How are you feeling now? I did not notice but I never get that afternoon Hepc tiredness anymore.
Happy Holidays
GHP

[JillLynn]

Mel...DARN!  I'm sorry your rash is back and you aren't sleeping.  That makes me feel bad!
I wish I could post pictures on here of when I had the reaction to INT/RIB.   I'd like to compare with yours.    I soooooooo feel for you!!!!!!!! Oh my sister I'm so sorry this is back.   

I don't think for one second you are whiny or hypochondriac.    I get it...I truly do!
     my arms and legs and hands today look kinda like I was a burn victim from all the itching I did on that last treatment.   

I don't know why I have the gift of sleep right now.......but I'm grateful for it.  Not really doing anything differently.  Wish I could give you some suggestions but I really think it's just from being on the harvoni.    But I'm not sure about that either. 


Please keep us posted Mel.    DARN!  I just am feeling so bad you are having that reaction again.   
I'm saying extra prayers!


 GHC:    Thank you for sharing about your joint pain (I wasn't going to because I'm just assuming it's from the harvoni or maybe I'm just falling apart) NOT!
   Before I came to the forum just now,  I was researching back pain and even just wrote down the phone number of a pain clinic to see once I'm off treatment.   I've never had back and knee pain like I'm having right now.   I'm hoping and praying it's from the harvoni.  That's why I"m not going to the DR until I"m off treatment.   waiting waiting and hoping hoping.
 I'll be interested in knowing what your DR. says GHC.


it's a rainy day in MI.....glad you are all here!    big hugs! 

[dragonslayer]

Hi
Just incase your doctor didn't mention it the trials show that Harvoni is better to take 12 weeks than 8- there is a higher cure rate with 12 and less chance of relapse than taking it for 8 weeks.
GHC

Can you please provide documentation of this, when dealing with treatment naive, non cirrhotic patients with viral loads < 6mil.  Ive studied the Ion-3 trial results which deal with the 8 wk treatment duration, and what you say isnt born out by the study result.

Specifically, from the Ion-3 trial:

"The treatment difference between the 8-week treatment of HARVONI and 12-week treatment of HARVONI was –2.3% (97.5% confidence interval –7.2% to 2.5%). Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

In addition, Table 7 of the results for Ion-3 shows the relapse rate for those with viral load < 6mil to be 2% in the 8wk group, and the same 2% in the 12.  So Im most anxious to see where you are getting your trial information from.

[JoeK9999]

Can you please provide documentation of this, when dealing with treatment naive, non cirrhotic patients with viral loads < 6mil.  Ive studied the Ion-3 trial results which deal with the 8 wk treatment duration, and what you say isnt born out by the study result.

Specifically, from the Ion-3 trial:

"The treatment difference between the 8-week treatment of HARVONI and 12-week treatment of HARVONI was –2.3% (97.5% confidence interval –7.2% to 2.5%). Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

In addition, Table 7 of the results for Ion-3 shows the relapse rate for those with viral load < 6mil to be 2% in the 8wk group, and the same 2% in the 12.  So Im most anxious to see where you are getting your trial information from.

Paul you are correct. GHC was responding to me about me getting switched from 8-12
weeks. I met the 3 criterias for 8 weeks. At 27 days I was still detected and my vl test prior to treatment was 3 months prior to treatment. I know as much if not more than a lot of the doctors about the drugs, results and treatment time from lots of reading for years. I didn't pay too much attention to my 3.8 million VL prior to treatment because initially I was going on 12 weeks anyway. My doc changed to 8 weeks after a 10 day normal liver function. Then I read one study done about untreated Hep C VL fluctuation where it proved VL can fluctuate a lot in a short period of time untreated. I only had VL tested 3 times in my life before tx. 14 million 5.8 million and 3.8 million. 
Based on the unknown and a 27 day detected, I would have insisted on 12 weeks if my doctor didn't switch me on his own. I don't know for a fact if 4 more weeks will make a difference, but I did not want to chance it.

[dragonslayer]

Paul you are correct. GHC was responding to me about me getting switched from 8-12
weeks. I met the 3 criterias for 8 weeks. At 27 days I was still detected and my vl test prior to treatment was 3 months prior to treatment. I know as much if not more than a lot of the doctors about the drugs, results and treatment time from lots of reading for years. I didn't pay too much attention to my 3.8 million VL prior to treatment because initially I was going on 12 weeks anyway. My doc changed to 8 weeks after a 10 day normal liver function. Then I read one study done about untreated Hep C VL fluctuation where it proved VL can fluctuate a lot in a short period of time untreated. I only had VL tested 3 times in my life before tx. 14 million 5.8 million and 3.8 million. 
Based on the unknown and a 27 day detected, I would have insisted on 12 weeks if my doctor didn't switch me on his own. I don't know for a fact if 4 more weeks will make a difference, but I did not want to chance it.

Hi Joe... I read one other post where VL was still positive after 4 wks.. But after 6 wks, had gone on to become UD.  The trial results interestingly show 0  on-treatment virologic  failures both in the 8wk group (0/215) and 12wk (0/216), indicating that even had you stayed with the 8k duration, you almost certainly would have cleared before the end of 8 wks.  I understand that in your case, having had viral load results of as  high as 14mil and also very close to 6 mil, and not having had the most recent test prior to treatment any more recent than 3 mos, why you and the doctor felt it prudent to increase your duration.. For my part, Ive had 3 viral loads done: ~3 mil in 2008, ~1 mil in 2011, and 2.4mil in 2014 3 wks before treatment was to commence.   I think anybody who can get prescribed and covered for 12 wks is lucky and should go for it.  Nevertheless, the 8wk trial results are every bit as encouraging for the group for whom it is meant as are the 12 wk trial results.   Best of luck....

[jberlin]

Great discussion all!  Please be careful in suggesting treatment options, as everyone's situation is different.  I enjoyed the addition of results from scientific studies as it really helps to inform our forum readers, but the warning in big print needs to be always to discuss treatment options with a medical professional that has direct experience with treating Hep C. I hope everyone is having a nice holiday season.  -jack

[goodbyehepc]

Can you please provide documentation of this, when dealing with treatment naive, non cirrhotic patients with viral loads < 6mil.  Ive studied the Ion-3 trial results which deal with the 8 wk treatment duration, and what you say isnt born out by the study result.

Specifically, from the Ion-3 trial:

"The treatment difference between the 8-week treatment of HARVONI and 12-week treatment of HARVONI was –2.3% (97.5% confidence interval –7.2% to 2.5%). Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

In addition, Table 7 of the results for Ion-3 shows the relapse rate for those with viral load < 6mil to be 2% in the 8wk group, and the same 2% in the 12.  So Im most anxious to see where you are getting your trial information from.

Both my doctor and pharmacist confirmed 12 week treatment is better - my insurance company wanted to stop paying for treatment at 8 weeks but my doctor was able to show from the studies that 12 week treatment was more effective and less chance for relapse. Nowhere in the study does it say treatment should be for 8 weeks it merely states that one can do 8 but the studies show 12 weeks is more effective and less chance of relapse.  One cannot trust this virus - it's known to show as gone and then come back. And I know plenty of people that did old treatments and that's what happened. Now they are on Harvoni some for 12 weeks and some longer.

Go to:
Harvoni.com or Gilead website or  http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

See: Table 6 Study ION-3:
Response Rates after 8 and 12 Weeks of Treatment in
Treatment-Naïve Non-Cirrhotic Subjects with Genotype 1 CHC

The relapse for 8 weeks is 5% the relapse for 12 weeks is 1%

[goodbyehepc]

Hi Joe... I read one other post where VL was still positive after 4 wks.. But after 6 wks, had gone on to become UD.  The trial results interestingly show 0  on-treatment virologic  failures both in the 8wk group (0/215) and 12wk (0/216), indicating that even had you stayed with the 8k duration, you almost certainly would have cleared before the end of 8 wks.  I understand that in your case, having had viral load results of as  high as 14mil and also very close to 6 mil, and not having had the most recent test prior to treatment any more recent than 3 mos, why you and the doctor felt it prudent to increase your duration.. For my part, Ive had 3 viral loads done: ~3 mil in 2008, ~1 mil in 2011, and 2.4mil in 2014 3 wks before treatment was to commence.   I think anybody who can get prescribed and covered for 12 wks is lucky and should go for it.  Nevertheless, the 8wk trial results are every bit as encouraging for the group for whom it is meant as are the 12 wk trial results.   Best of luck....

I agree with all this especially about doing 12 weeks - my doc wanted that for me. We fought tooth and nail for 12 weeks because the insurance company wanted to stop at 8 weeks but they are not the doctor nor the patient so it's easy for them to say if you show a certain VL at 8 weeks then stop. Pfft yet they know there are people on Harvoni now who are doing treatment second time around because their virus came back. One would think they would want to go for the treatment duration which shows the least amount of chance for relapse which seems to be 12 weeks for many

[JoeK9999]

My opinion is if you can stay on the treatment longer the better the chances
even if the SRV percentages are lower as the treatment duration lengthens. They did a 6 week Harvoni trial and about 67% achieved SRV and the rest did not. A 2 week increment increased the odds tremendously.  Gilead throws in the disclaimer that 8 weeks can be considered and
the only reason they put that in was to encourage the insurance companies to force
a cheaper treatment path. Insurance companies are not advocates of the patients.
They are all basically big stock brokerage houses looking for as big a profit as they can make. Yes I believe and it is a fact that 8 weeks cured high percentages, but I personally want the best chance I can get. No different than taking antibiotics for too short a time. The stats from millions are already available for antibiotics.
The Harvoni clinical trials were a sampling of a few thousand people.The real study is what is going on now with all of us. 100's of thousands.

[dragonslayer]

Both my doctor and pharmacist confirmed 12 week treatment is better - my insurance company wanted to stop paying for treatment at 8 weeks but my doctor was able to show from the studies that 12 week treatment was more effective and less chance for relapse. Nowhere in the study does it say treatment should be for 8 weeks it merely states that one can do 8 but the studies show 12 weeks is more effective and less chance of relapse.  One cannot trust this virus - it's known to show as gone and then come back. And I know plenty of people that did old treatments and that's what happened. Now they are on Harvoni some for 12 weeks and some longer.

Go to:
Harvoni.com or Gilead website or  http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

See: Table 6 Study ION-3:
Response Rates after 8 and 12 Weeks of Treatment in
Treatment-Naïve Non-Cirrhotic Subjects with Genotype 1 CHC

The relapse for 8 weeks is 5% the relapse for 12 weeks is 1%

Yes, in so far as this stat goes.. The error youre making is that you're failing to recognize that this 5% value is NOT segmented by viral load..  When they segment the results by viral load, we get the results seen in the paragraph beneath table 6:

" Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

Table 7 bears this out as well, showing a 2% relapse after 8 wks in the lower viral load group, but a 10% relapse in in the higher viral load group. 

Once you segment the data by viral load as seen in the Ion-3 published results, you'll find that there is NO data that favors 12wks treatment over 8 for viral loads < 6mil.

When you read the data you must look at all the relevant data.

>>And I know plenty of people that did old treatments and that's what happened. Now they are on Harvoni some for 12 weeks and some longer.<<

Sure.. Because  prior treatment failures have a 12 wk or 24 wk treatment protocol!  Those results are reported in the Ion-2 study.  You cant make any determinations about 8 wk treatment protocol for treatment-naive lower VL patients from the data derived from patients with prior treatment failure and no VL segmentation.   People should really stop conflating the study results!

[lporterrn]

Isn't it amazing how complicated data can be? Add in emotions and opinions, and we can have a field day! I looked at the data too, and wondered what I'd do if I was a clinician, or what I'd be concerned about if I was a patient. I can see the argument for extending the treatment to 12 weeks for GT 1a VL < 6 mil. (see table 6 http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdfThe biggest problems with these data are they are still relatively small (esp GT 1b's) and I have not seen a real breakdown of the results. For instance is the a difference between stage 2 vs stage 3 GT1a's?

Here is where it gets really tricky - when data say one thing and your doc or your gut say something else. We use data in a quest for certainty - to make sound decisions. But this data is all so close, that in the end the only certainty we get is that final lab results - either we are cured or we aren't. What I really hope for every patient is that they can live with the decisions, embrace them, then let them go. What will be will be. If you can let poor outcomes be nothing more than a temporary disappointment and then get back on track, it helps. Yes, we are dealing with our lives, but life is what we are doing in the moment, and these moments are all so precious.

I think it is time to agree to disagree, and move on from this discussion.   

[audreywald]

Hi Everyone,
My name is Audrey and I was just approved for the Harvoni. I don't know how this happened but it isn't going to cost me a penny. I am on disability because of this illness and have been for about 10 years. Last checked I was at around stage 3 and a half and my viral load was over 15 million. I think that is why Medicare is picking up the whole tab. An old friend of mine just finished this tx and she is pronounced CURED with minimal side effects. I tried the peg/riboviran and each time they took me off of it. First time after 2 shots because I told my Doc that I could understand why people wanted to kill themselves on these drugs. She stopped me that day. 2nd time I made 7 weeks but I got a retinal bleed, told her I wanted to "tough" it out. She told me I could lose my vision and I changed me mind then and there. Third time (new doc; Steven Flamm) in Chicago at Northwestern Univ hospital. After severe pain in areas I did not even know I had organs, I saw my doc at week 13 and he took me off. Said my viral load had not dropped enough to be worth keeping me on it.
So even if I were willing to try the old drugs again (which I am not) Medicare will not pay again foor the old stuff. But they are paying for this new regime, it will be delivered Wednesday, gotta see my doc and then I begin.
Anything I should know?

[nicole_1234]

Hi Audrey! Congrats on getting Harvoni. All I can say is that it is so much better than interferon/riba and my side effects have been minimal. I only had the nerve to do interferon treatment once and I did 48 weeks but was a slow responder. When they asked me to continue to 72weeks I couldn't do it. But Harvoni is a breeze in comparison and in 2 weeks my vl shows <15. I take my 4 week test this week and am praying for undectected. Good luck and once you start we are all here for you should questions arise or just if you need support.

Nicole

[elizabethfaraone]

Hi Audrey.  You'll find Harvoni is easy to tolerate.  I've been resting the entire time and that keeps the side effects minimal.  You sound like you are sensitive to medication, as am I, and Harvoni's side effects are minimal with me.  I tried Interferon once many years ago and I stopped after the first shot.  Talk about painful.  I was bruising and losing a pound a day.  And I felt the side effects for three months.  I'll never forget it.  It was frightening.  I had no interest in continuing and decided then to wait for the development of safe and effective medicines.

[HHburme]

Hi Audrey !!   Good to hear to hear you will be starting harvoni. I'm on day 16. Dr Flamm is my hepatologist, really smart and super cool. Good luck to you.

Fight the Good Fight !

[art1951]

Hi Art
This is great news! You must be undetected by now  yes ? I have been getting join and muscle pain increasingly the past week. I'm not sure if it is from the medication or because I've dipped into some holiday sweets that have caused some inflammation in my body. How are you feeling now? I did not notice but I never get that afternoon Hepc tiredness anymore.
Happy Holidays
GHP

GHC
I was undetected at 6 weeks.  I did have an issue at 8 weeks where I had to go without medication for 5 days while they where working out the copay.  It ended up costing me $8,634 out of pocket for the last 4 weeks. The doctor worked through Gilead etc. but in the end I had to pay.  I am now having another issue that my doctor is leaving the practice and had given me notice that I have to find another doctor.  The good news is that I am about 3 weeks from being done.
I am having some joint pain after exercising but think it is normal and not due to the Harvoni.  Are you doing better now?
- Art

[elizabethfaraone]

Art, that's pretty awful that you had to go without for five days.  I hope everything works out.  My thoughts are with you.

[Roger]

I thought I'd pipe in here, as I took my #39 Harvoni pill this morning...

I feel better every day, and the side effects have been "easy" and are getting even easier.  It "is" amazing how we / I took the way I felt (for years) as normal.  I actually didn't know what "feeling good" or "feeling normal" was.  Now that the dragon is on its knees, I have a whole "new" way of feeling.  It is amazing how we take things for granted - until there is actual change! (remember the frog in the pot of water?)

That tired, sick feeling that I had for years, is leaving me - and my joints are really a lot better too.  I think having 80% of my joint pain disappear during this
Harvoni Tx helps "everything" in me feel better.  Before I started Harvoni, I didn't know how much of my creaky bones was "getting old" and how much was the dragon.

Now that the dragon is on its knees, and my joints feel W-A-Y better, I know a lot of my joint pain was the dragon and not my age!  Just that one little bit of knowledge is enough to help a number of 'old age' related things feel better.  I feel pretty young, I must admit.

The Harvoni side effects have been very mild, with some ill stomach that comes & goes; some fatigue - that comes & goes, and a few minor headaches - but really nothing to write home about.  Now that the dragon is dying, the side effects are even easier.  At times I still get a wave of 'tired', even a little ill to my stomach - but not bad and not for very long.  The insomnia that Gilead spoke to me about has been nonexistent too.

I had my 2nd blood test and my liver & kidney functions are excellent!
They forgot to do my VL, so I had that done last Friday and I am waiting for those results.  It is exciting seeing the VL go down to zero!

[Katie]

Roger:  I am on my 26th pill, and like you am feeling SO much better and sleeping through the night.  Just feeling rested is something to cheer about. Before treatment when I did get more than 4 hours, I would wake up exhausted.  My brain fog and ability to concentrate is about back to "normal" and seems to be improving each day.  My tinnitus still comes and goes but when it goes it is almost all gone, but my hair thinning seems to be with me, even though it isn't very much...just noticeable.  That may be due to me not taking my normal supplements as I figured I didn't want to take a chance with something interacting.  I take some Chinese herbs and am not sure about them.  So I am only taking my D3 and Vit Bs.

I am anxious to have my first blood test in a couple days!

I have joint issues too but I doubt Harvoni will help with that as I have worked hard out in the field and just damaged myself, however I'll take any relief it gives, so I am hopeful.

Congratulations on your good health and we are so lucky as some are really suffering.  This has been a breeze for me.  My New Year's wish is for everyone to begin to feel the benefits and have a healthy, virus free 2015!

Katie

[Doluska]

I am praying so hard to be hepc free in 2015 for all of us! And if you asking me - people that invented this medication and made it work deserve Nobel price! We are lucky to live in 21 century.d

[elizabethfaraone]

I AGREE!  The person who developed Sovaldi (sofosbuvir) is Michael Sofia.

[Katie]

Elizabeth,  Is there a contact email where we could thank him?  What a blessing for so many and he certainly deserves to be applauded and recognized!

[elizabethfaraone]

I know he's on linkedin.

[nicole_1234]

Katie I'm on my 26th Harvoni pill too. I'm feeling much better each day as well. And Roger I agree, I have no idea what it's like to feel "normal" and can't wait to find out. These drugs are a push and pull of sorts, I feel the burden of the Hepatitis disappear as my viral count goes down, but then I still feel medicated and edgy from the drugs. It's hard to say what's what. But the blessing perhaps is that we are all so aware of our bodies and when we do beat this once and for all we will be so grateful and realize not only the bad days but the good days too, when we are full of radiant health!

I started taking anti anxiety drugs after week 2 to calm down at night because I was so edgy I was having panic attacks. I want to get off them now because they make me sleepy in the daytime. It's a coin toss right now, panic attacks or grogginess.  I think I will try without again and perhaps the edginess of the Harvoni has worn off as my body adjusts.

[Katie]

Nicole, I am so glad to hear you are doing better.  For years I have pushed myself to stay active in spite of my fatigue and exhaustion.  I have arthritis from previous injuries in my wrists and right knee and last summer I painted the siding on my entire house with a knee brace and wrist braces!  I am proud of that and the exercise did me good, but it was a battle each day tackling it. 

What is rather strange is now that I am feeling so much better, my motivation is gone.  I really think Harvoni is giving me a "what the heck attitude", and you know, it doesn't even bother me (which is really strange).  I think my body just wants to heal and so all of the half done projects can just wait. 

I am sorry you still have anxiety and hope that goes away soon.  I was anxious before the treatment and would get shaky but that feeling is gone.  Keep up the fight and focus on the positive and know you aren't alone.

Katie

[nicole_1234]

Thanks Katie. Yeah I'm like you, I think I over did it all the time with something to prove to myself, and not let the illness get the best of me. I'm one of the most active, ambitious people I know. But I always felt like I was walking through spiderwebs in my head, so to speak.

But now that I'm on the treatment I am taking time to heal and rest and be ok with it. I'm still getting lots of stuff done, just not in manic mode. Taking time to rest when I need. It's a great excuse and hey, it's the holidays! It's good we're kind to ourselves now and try to take it easy. Hopefully its the last hurdle on our way to vibrant health!

[Katie]

Nicole: I think when you see no cure in sight for a chronic illness you either give up and go to a dark place or fight like hell and like you said, prove to yourself it isn't going to control your life.  I have always been self sufficient and I refused to crumble, but it was a battle every day.  Having this treatment come along was exactly what I was waiting for and thrilled that I lived to see it and benefit from it.  It gives me so much hope for other horrible chronic illnesses.  I LOVE SCIENCE, and that's why I am a biologist!

Thanks for sharing and have a great evening.  Don't worry, be happy (my theme song lately!  <BIG SMILE>

[nicole_1234]

Since I started Harvoni, i've fallen off my usually pretty consistent exercise program, 3 long hikes and 4 or 5 yoga flow classes a week. I've been taking short walks with my dog 20 minutes or so and find myself short of breath and even small amounts of exercise seem hard. Today I tried an iyengar yoga class (not a lot of fast movement) and found myself getting dizzy with even the slightest amount of exertion. The kind  of dizzy where I feel I have to sit down and my hands begin to tingle and my eyes go blurry.

Should I get my blood pressure checked when I go for my blood tests tomorrow? Has anyone else experienced this? I will of course talk to my RN about it as well.

[visoianu]

Update:
Diagnosed with hepC about 1-1/2 years ago. Probably born with the virus or acquired before age 10. Started Harvoni 8-1/2 weeks ago.
Viral load:
256000   July 2013
496000   Oct   2014
59            November
Not detected today (i.e. <15)
From my experience, the best time to take this medicine is in the afternoon. This is because I have the impression that, in this way, the medicine spends more time in the system and is more effective. First 4 weeks I took it in the morning, when my digestion is very fast.
Then I changed to afternoon and I could feel it is more effective.
About the blood pressure, I think this medicine contributed to its increase. I had it under control with medication before starting Harvoni. Then it increased significantly.
The nightmares are occurring only once or twice per week now. For me this is a sign that I am more tired than usual.

[Katie]

I would definitely have your BP checked and explain what is happening to your doctor or nurse.  Could the anti anxiety drugs have anything to do with it?  I get worn out faster with any exertion too, than I did before.  Be sure you are eating good and keep drinking that water.  Maybe take even shorter walks but a couple during the day.  My day consists of taking breaks about every half hour because otherwise I just feel tired. So I do a little and take a break and then do a little more.  I've just been pacing myself and then I get more done.  If I push myself I end up being done for the day! 

I take my pill at 8:30 at night and have been sleeping really well and actually wake up refreshed.  I figure it gives the drugs time to work while I am resting and they haven't bothered, but seem to actually help, my sleep.

Let me know how it goes tomorrow!  Good luck!

Katie

[art1951]

Since I started Harvoni, i've fallen off my usually pretty consistent exercise program, 3 long hikes and 4 or 5 yoga flow classes a week. I've been taking short walks with my dog 20 minutes or so and find myself short of breath and even small amounts of exercise seem hard. Today I tried an iyengar yoga class (not a lot of fast movement) and found myself getting dizzy with even the slightest amount of exertion. The kind  of dizzy where I feel I have to sit down and my hands begin to tingle and my eyes go blurry.

Should I get my blood pressure checked when I go for my blood tests tomorrow? Has anyone else experienced this? I will of course talk to my RN about it as well.

Nicole,
I would definitely watch the blood pressure but you are right about at the point where I started to get more energy.  I am sure that it is not the same for everyone but it was around week 6-8 when I actually started feeling 'normal' again with energy that didn't come and go in spurts.  Hang in there.  You are almost there.

Art

[elizabethfaraone]

Art,

Thanks.  I needed to hear that too.  I just completed my fourth week and I'm still feeling lousy.  It worries me when I hear others say they're feeling great by the second week.  I had my blood drawn yesterday and will know my viral load soon.

[BattleTheBeast]

Art,

Thanks.  I needed to hear that too.  I just completed my fourth week and I'm still feeling lousy.  It worries me when I hear others say they're feeling great by the second week.  I had my blood drawn yesterday and will know my viral load soon.

Hi Elizabeth,

Check out my posts, I think I am the queen of bad days. What's important to remember is that if we were sick before with Cirrhosis issues/symptoms they aren't going to just go away (I sure wish they would). The medications are very strong and they add another level of a war inside of us. Hang tight warrior sister, you made it this far and you are on treatment, that's huge! I wasn't UD at week 4 and was all bummed but everyone is different and we all have our own battle albeit with the same monster.

I am almost 12 weeks into treatment now, I started with S/O and was switched to Harvoni after 8 full weeks. When I had my blood work at 9 weeks I was Undetected and my AST and ALT were normal. I have good days and I have not so good days but if/when I can clear the virus then I will continue to work on being as healthy as I can be without the beast inside me. They say the liver is the one organ that can heal itself, let's hope that's true and we can all live long and healthy lives after SVR.

Keep smiling, 2015 is going to be the year of SVR!

Mel

[elizabethfaraone]

Mel, are you genotype 1a with q80k polymorphism?  Apparently, olysio doesn't work for those with q80k polymorphism.

[BattleTheBeast]

Hi Elizabeth,

I am not sure if I have the q80k polymorphism but I am going to my doctor tomorrow and can ask to have the test run tomorrow if he feels it will be helpful.

From what I am reading about it, it's not that it doesn't work, it's that it doesn't work as well:

http://hepatitiscnewdrugresearch.com/olysiosimeprevir-resistant-variant-q80k.html

I had a horrible rash and did not tolerate Olysio very well which is why I was switched to Harvoni, looks like as more data comes out this was possibly a good move if I do have q80K.

Thanks for the information,

Mel

[elizabethfaraone]

Mel, yes, you are correct, it doesn't work as well ... and we should take what works the best

[BattleTheBeast]

That's true but what is best is evolving as we go, we are the pioneers here.

BTW Elizabeth, if you are in Plainfield we are almost neighbors, I am down in the Princeton area. Are you seeing an ID doctor?

Mel

[elizabethfaraone]

I'm seeing a gastroenterologist who is very sweet and serves the poor and loves them and fights for their right to the medicine.  If not for him, I wouldn't be on the Harvoni.  I spent a year trying to get Sovaldi/Olysio.  But, in the end, it's good that I'm on the Harvoni instead.  I do wonder if Sovaldi/Daclatasvir works for every genotype.  I wanted that combination as soon as it proved effective at Pharmasset in Princeton.

[elizabethfaraone]

Remember this?  http://hepatitiscnewdrugs.blogspot.com/2012/11/daclatasvir-and-sofosbuvir-promising.html

[Jay]

I'm loving Harvoni! 4 weeks down, and, with a little luck, only 8 more weeks to go.  I just take one before bedtime and seem to have more energy throughout the day. I am very hopeful that, after 30 years, I am, finally, likely to be able to put this behind me. (But I am glad I waited, the inteferon had previously scared me off of treatment)

[Subwayco]

Hi Nicole,

I must have missed your post when checking out the group postings.  I showed my wife your post and she looked at me and said "That's you".  I'm 66 now and I thought that the brain fog was a Hep-c condition but I also thought about maybe it was just the thing you go thought when getting old .  I was also a good speller but now sometimes when I write on the computer I make numerous errors. Spell check has become a close friend.  It's true when you find some experiencing the same things as myself it is in some ways comforting.  I'm at the beginning of my 7 week and all numbers are normal according to my blood test two weeks ago.

Hope you had a nice Christmas if you celebrate it!  I learned a lesson last week that I should have figured myself.  At a Christmas eve group dinner I was so excited and was all over talking to those who had attended!  I was feeling fine but at 9.00 I was suddenly very fatigued and went home and just fell immediately asleep.  Then I realize the logic I should have known.  Just because you might have cleared the virus doesn't mean your going back to being superman.  Your liver has been greatly impacted.  Even close friends couldn't understand.  But, that is the story, your cured from Hep-c but the damage to the liver is going to take a while to erase.  I guess that's why I though the medicine might not work because I didn't feel that it was.  In my case I have been told I have cirrhosis so I figure it's going to months and possibly years to really start to feel better. 

I hope you are doing well and I hope our brains snap out of it.  It can as you know be quite embarrassing.

We'll see where this road goes!

Take care,
Rob - Subwayco

 

[audreywald]

Hi Everyone. I am starting Harvoni tomorrow. The pills came today but I had already taken my antacids. Anyway, I'm a little nervous. Can anyone tell me what the beginning is like? My viral load is over 15 million and I've had it for about 40 years; I think my good years (meaning not too bad) are running out. Any advice at all?

[audreywald]

You can't know what this means to me. 2014 was the worst year of my life, On Nov. 29th. my then 21 year old grandson disappeared. Left his money, his keys, his ATM card, door unlocked and was just ... gone. If you Google his name you will find out all about him; Lucas Prassas. I raised him and I spent at least 6 months in bed, not really sure if I wanted to live.
But getting this medicine, so easily and free, and not having to do any of the work gives me hope. I really did not think I would  live to  see this day. So maybe, just maybe there is a reason to keep fighting the dragon. Maybe I am supposed to be on this earth a little longer. Maybe my boy is still alive and I will be around to see him.
Starting meds tomorrow. January 1st. Sounds a little hopeful, right?

[Katie]

Audrey, Everyone reacts a bit differently and it seems to depend on your overall health and your liver condition as to the side effects.  All in all, no one is really complaining about the side effects as it is so much easier than the previous treatment.  Take it easy, rest when you need to, and think positive thoughts.  I am sorry for all of your sadness and hopefully 2015 will turn out to be a good year for you.  Harvoni is a miracle drug, and for me, I started to feel better almost immediately.  We are so lucky to have this breakthrough in time for us and for millions.  Celebrate your good fortune and keep praying for your boy.  When he comes home, he's going to find you in good health!  Wouldn't that be wonderful!!!

Katie

[Dragon70]

Hi Elizabethfaraone,

Awesome post and diary you are keeping! I would tell you that you will feel better soon but I am not the one you should ask!

Keep hanging tough and doing exactly what you are doing, listen to your body and continue to be kind to it!

Hey Papa,

This is what happens when you don't sleep for 3 days, you get manic like I am right now............ I must stop and calm myself. I really need sleep. Oh and I have no interpersonal relationships right now because I am in hiding for my own well being and I love my family and friends to much to subject them to often to this Mel. For the clutter and cleanliness, I have my cleaning friend coming weekly just because I was sick before treatment even started so I knew I couldn't handle it alone with the teenage boy! But it really does feel better when the house is more organized.

And you will be ok no matter what, Harvoni is a cake walk, except my cake was made in an easy bake oven. Cake Boss is making yours!

Mel

[Dragon70]

I am getting a rash. I noticed that it was one of the more severe reactions. Can anyone tell me why this is such a big deal and why I should report it asap. I don't want to get off of the Harvoni for a rash. I'm doing great otherwise.
Dragon70

[BattleTheBeast]

Hi Dragon,

Just let your doctor know. I think they mean the kind of rash where your tongue and throat swell and you can't breath.  People get that from bee stings and peanut butter! I have lived with the rash and it comes and goes. I haven't figured out what exactly triggers it but my doctor checks it out and I take a benedryl if it gets really bad. There are other options as well.

If you are still breathing fine and you aren't having a severe allergic reaction just let your doctor know about it and have him/her check it out for you.

Mine starts as these bumps under the skin and then the itch starts! I keep my skin moisturized, use oatmeal soap and avoid long hot showers when it flares up.

I've been told it's ezcema, it's allergies, it's from the cirrhosis but I have been dealing with it a while. It got way way worse for me when I was on the Solvaldi and Olysio combo.

Hope that helps a little. HNY!

Mel

[Rubye]

It seems to me that skin problems go with cirrhosis. I've had rosacea for a few years now but what's interesting is about two weeks in with the Sovaldi/Olysio my face cleared right up. I had the itching too, like Mel started as little bumps under the skin, but I would rub in a lot of Eucerin Calming lotion every hour or so and it quit. Plus, with the cold weather most of us have to stay well lubricated regardless.

[Lynn K]

This was all I could find on rashes

http://www.drugs.com/sfx/harvoni-side-effects.html

Seek medical attention right away if any of these SEVERE side effects occur while taking ledipasvir / sofosbuvir:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue).

To me it doesn't sound like itching and a mild rash is much of a concern but when in doubt ask your doctor is always best.

Happy New Year

[elizabethfaraone]

Hi Audrey.

I'm so sorry about your huge loss and my heart hurts for you.  Life can be so hard.

I'm very sensitive to medicine in general and Harvoni is easy for me to take, so long as I rest all of the time.  I'm so happy to have this medicine.  For the first two weeks, I took Tylenol as a preventive measure with the Harvoni at 9 am and then I stopped taking the Tylenol.  It's important to eat well during treatment, I think, in order to minimize any side effects.

Bring as much joy into your life as you can.  I watch good movies and read good books to raise my spirits and I spend time with people I love.  Don't be afraid to ask people for help.

[elizabethfaraone]

Audrey, I get the feeling that your grandson loved you very much and if he met an early death, he would want you to take the best care of yourself.  He lived a full life with you as his caretaker and he learned a lot.  Although he was a lonely fella, there was much that he loved about his life.  It is always sad when we lose someone we love a lot.  There was a special bond between the two of you and so it will be hardest for you to recover from.  Just remember that he loved you very much.  I know that for sure.  You were his heaven on earth.  One of the things you are missing about him is how he totally accepted you, whether you realize it or not.  Don't let anyone's opinions get in the way of feeling the love he had for you - his acceptance of you.  Love never dies, and remember his love for you will always be.  I've lost my mother, father and younger sister, and they suffered when they were dying.  Their death was a relief from their suffering.  And they are still with me.  There are many planes of existence and it is important to know that when we are separated from the ones we love (be it because they live somewhere else or they have left this earth), they are always a part of us - always with us.  https://www.youtube.com/watch?v=MRHN7nUg26M

[mario555]

7 weeks in a 24 weeks treatment. My side effects are incredible! I asked my wife to go to a new year party. I had been too tired to go to anything for many years! She flipped! Although I didn't last until midnight, I danced, ate, had 1/2 glass of wine. I almost felt like anyone else! Also, I have been bugging her to go for long walks and today I went to the gym (only 20 minutes though...). This is proof that something has changed! My headaches are almost gone and except for a hearing problem, I feel 10 (15?, 20?)years younger!
My message? If you are hesitating on taking the treatment, don't! This is a frigging miracle!
My wife saw me during 2 unsuccessful Int-Rib treatment and she can't believe what's happening with me!
I am 59 years old, F4, 1a, and I have been carrying the disease for 45 years. Before starting the treatment, I was at the end of my overstretched rope and I was losing hope rapidly. So, miracles DO HAPPEN! my 4 weeks alt,  ast were still at 90 but... I have many more weeks to have the miracle continue.
Good luck to everyone and don't hesitate to get started on the treatment!

[Lynn K]

Hi Mario

Congratulation on feeling so much better!

I don't want to rain on your happiness but you really should not drink alcohol at all ever again for he rest of you life. You have F4 i.e. liver cirrhosis you said. Also you are currently on treatment and should not drink on treatment anyway.

Even if you cure hep c you will still have cirrhosis which means you can't drink alcohol ever.

But anyway again congrats go dancing in the streets enjoy you renewed energy and have a long and healthy life

[Doluska]

I wouldn't drink during the treatment! Why risk so disiairable SVR? But in case of success - I'd allow myself a seep of shampain on New year eve. It is not a big deal! Have a happy and healthy year everybody! D

[mario555]

Actually, the main emphasis of my message was to appease the fear of the hep c sufferers who might hesitate to consider getting treated because of side effects. For us previous interferon riba patients, we were very leary about this new medication. My message was more about the (almost) immediate benefits of this medication.
The 1/2 glass of wine over a 4 hour outing at new year eve was definitely not my best advice. Sorry for that.

[audreywald]

Audrey, I get the feeling that your grandson loved you very much and if he met an early death, he would want you to take the best care of yourself.  He lived a full life with you as his caretaker and he learned a lot.  Although he was a lonely fella, there was much that he loved about his life.  It is always sad when we lose someone we love a lot.  There was a special bond between the two of you and so it will be hardest for you to recover from.  Just remember that he loved you very much.  I know that for sure.  You were his heaven on earth.  One of the things you are missing about him is how he totally accepted you, whether you realize it or not.  Don't let anyone's opinions get in the way of feeling the love he had for you - his acceptance of you.  Love never dies, and remember his love for you will always be.  I've lost my mother, father and younger sister, and they suffered when they were dying.  Their death was a relief from their suffering.  And they are still with me.  There are many planes of existence and it is important to know that when we are separated from the ones we love (be it because they live somewhere else or they have left this earth), they are always a part of us - always with us.  https://www.youtube.com/watch?v=MRHN7nUg26M

[audreywald]

I don't feel that Luke is deceased. I did at first but he has been missing since November 29th, 2013. I think if he were deceased someone would have found or even smelled something by now. We live in a small town called Wynne, in Arkansas. He knew I was ill and it scared the hell out of him; what would happen to him when I died. Luke is bi-polar and on the autism spectrum. I am not saying he has no feelings but he does not think like neurotypical people. In other words, much as he loves me he could leave me just like that. I know he felt he was a burden to me. He could be very difficult; but he was always my greatest joy; the love of my life. No one that knew him well thinks he is dead. That does not mean I will see him again but one reason I decided to try any meds again was in the hope of buying myself some quality time. For my other 2 grandsons, my husband and my daughter. Thank you for your feedback though. I appreciate any and all kindnesses.

[Lynn K]

Hi Mario

Sure I understand your thoughts trying to reassure people that treatment is not a big deal and super happy for you that you are feeling great!

You just had me worried when you made the remark about a 1/2 glass of wine. I too looked longingly at having a sip of Champagne but my better half said not gonna happen which is for the best so I toasted the new year with sparking Apple juice.

Ah well it is what we must do if we want to hang around the planet for a while longer.

Best to you and yours Happy New year
Lynn
 

[pappy]

Well one week in I must say the side effects are ever present but not bad . Mostly a mild headache but if you eat the wrong foods you can have some nausea . The energy level does certainly go up and i am very happy to be be trying to get past this . Good luck to everyone and I hope it is a happy new year to all .

[sunrise]

Hi warriors
      Hope its ok to crash the Harvoni party. I feel like  a misfit just finishing sovaldi olysio 12 weeks. I did not know if I had the Q 80 morphism. Studies show that sovaldi cacelled this out. Now if I relapse l ( I pray not) then I will think maybe there is a chance. Gratefully I , if necessary will do the Harvoni treatment.  Im off tx now since dec 21 . Still have aches in ankles, also stiff in morning. Never was this bad before tx. Hope it subsides. Still waiting for eot results . Holidays must have delayed. Getting 4 week  after tx test done jan 19. Countdown. Thanks for letting me crash :-) Sunrise. Took the S/ O train woo woo!

[Roger]

Sunrise,

I too am taking Harvoni, and know nothing about the side effects of sovaldi / olysio.
Would you mind explaining the side effects of that Tx?

[sunrise]

Sure. Remeber though everyone reacts alittle different.  1st week just little tingles intermitently on skin. Random and not painful.2 nd week appetite started increasing. Started to get anxiety come on strong towards afternoon. That stayed til done. Just now starting to subside.developed lump on Achilles tendon with stiffness and pain. Appetite continued to be on the rise thoughout treatment.  35 lb weight gain aaah! Became UD 4 weeks in. Waiting for eot results
 My bilirunin elevated slightly and my blood pressure as well.working on good diet now and still sore. Other than that im getting thru. Still have side pain on and offf......blessings Sunrise

[Roger]

WOW! Way different side effect vs Harvoni.
I don't really understand why a doctor would prescribe anything but Harvoni.
Thanks.

[badbradley]

Roger,
        Also treated with S/O. Intermittent headaches were the norm for about the first 4 wks. Olysio caused some sun sensitivity eyes sensitive to bright light, minor nausea. Thigh and glute pain,joint pain - on and off. Dry mouth early on. My mouth felt like it had been burned from hot liquids, lasted for about 1 wk. Heard this from a few others as well. That's about it for me. All is well after 7 wks post treatment.
                                                                           Brad

[sunrise]

Harvoni hadnt been approved yet and doc felt.I should start tx as my inflammation was rapidly increasing.  Figured if s/o didnt work then other options were coming. Really side effects were tolerable half of my treatment is also part of yours. To get rid of this serious disease I was gonna give it a shot. Puts the older txs to shame....Sunrise

[Lynn K]

I also treated with Sovaldi Olysio from March to June 12 weeks unfortunately I was found to have relapsed at my 12 week post viral load tests.

I didnt have much in the way of sides. I maybe had some of the warned sun sensitivity and some mild headaches. I may have had some extra joint pain in my knees where I already had some issues. But that is all.

I will be finishing week 7 on Monday with 17 weeks to go on Harvoni. I should be taking my last pill May 4th.

[elizabethfaraone]

Sunrise, thanks for crashing the party and for being honest.  I'm taking Harvoni now and tried to get the Sovaldi/Olysio combination, but was refused.  I refused treatment with Interferon/Ribavirin prior to Pharmassets success over three years ago with what we now call Sovaldi/Daclatasvir and I was chomping at the bit for Sovaldi.

It is important that we document our side effects during treatment and what recovery feels like after treatment.  I've heard that Sovaldi stays in our bodies for three months after treatment, but I don't know if this is true.  I do know that when I tried Interferon/Ribavirin in 2003 (I stopped after the first shot because side effects were so severe and dangerous for me),  I felt the horrible side effects for three months afterwards.  Yikes!  That was a very scary time for me.

I have gained a lot of weight with Harvoni.  I think this happens when taking antivirals because the same thing happens to me when I take acyclovir for shingles - I gain weight.

Thanks again and keep posting here.

[Doluska]

I started my S/O treatment on  October, became undetected on 4 th week , finishing in the mid January. My appetite went up a lot, and I gained weight, I am tiered at the end of the day and my heart isn't working properly, but it was compromised before. This is nothing if I would get SVR. And actually I am happy having Harvoni as a plan B, if this treatment will not be successful. Good and happy year ahead of all of us! Oh, forgot about anxiety leve, it was up and is still up, antidepressant helps a lot.

[Roger]

Now that Harvoni is approved, are doc's still prescribing the other treatments?

[elizabethfaraone]

I don't know, but the medical industry certainly did push the toxic meds immediately following the success of sofosbuvir/daclatasvir over three years ago - lots of advertising advising people to get tested and cured - guess they wanted to sell their medicines before they became defunct.

[Roger]

Can you imagine what it's like for those companies that own patients like Olysio which is now all but obsolete? With the advent of Harvoni, it seems like ALL competition is defunct.  Hopefully Harvoni won't have adverse effects (think thalidomide) down the road!

[elizabethfaraone]

we won't know until time passes

[Roger]

Exactly!  That's the point... we rush to the cliff with hopeful enthusiasm - 'believing'.

[Doluska]

I will be grateful to Jansen ( Olysio) till the end of my life, because they donated me 12 weeks supply of pills, delivered it to my home, asking nothing from me! Even it will be no success, it is very generous. Gilad is kind of " imperialist- shark", they don't give nothing for free, well, at list, for Canadians. It is different story for Canadians: people dying  here, if they don't have insurance. Literally dying.... Sad. And no marcy from government, no from Gillad. Harvoni- yes, bravo! And I hope that if I will need it I will be able to afford it with help of insurance or by myself... For now- thank's for Olysio.d

[Roger]

Gilad is kind of " imperialist- shark", they don't give nothing for free, well, at list, for Canadians. It is different story for Canadians: people dying  here, if they don't have insurance. Literally dying.... Sad. And no marcy from government, no from Gillad.

Doluska,

I understand what you mean.  If you don't mind explaining the Canadian insurance situation I appreciate it. I was under the impression that all medical is covered by the Canadian government health plan.  Not so?  How does it work there?

As a Canadian, you might want to Google 'gilead momentum'.  Read up on how Gilead can help in Canada. I 'thought' they had a program in Canada somewhat similar as they do in the states.  I have not read a lot about it - but you can. I'd like to hear back what it's all about. (and about your government health plan & HCV Tx).

[sunrise]

Thanks Elizabeth
    Nice to feel wanted. As a recipient of Solvaldi and Olysio completely paid for by Gilead and Janssen, I feel very grateful and so lucky to have gotten treatment at F1 . Whatever happens I as well have no animosity towards these cos. Hopefully soon this will not be a problem of affording or not. I was so scared I would be turned down. To my surprise I got both meds!
    In closing I understand a company needs to get paid, but playing with lives should not happen. Everybody should be treated period. IMO

[Doluska]

Hi again! Thank u for asking. Situation is like this: health Canada paying for hospitals, doctors visits and medicine, while u are in hospital. That's all. Prescribed medication, dental and some special treatments - u are on your own. If u lucky to have insurance- they will cover some of your expenses, if not - sorry, it is not our business. this is it. Most of the working people do have insurance, but poor, homeless, drug addicts, stupid people who has work, but didn't bother to get insurance, sick people on disability - meet the sucamstenses of death penalty if they have pleasure to have Hep C. Sad. About Momentum... If one pay cash -$  85.000 for Harvoni- they may give u 20% of it. It is not bad when one has the rest. If not - nothing, nil, zero. In Canada they approved all new meds for hepC 3-4-5 months later than US. When people started Harvoni in States - it wasn't approved here. It took 4 months for approval with all this - I consider myselth very, very lucky to live in Canada, to be able to get new medicine anyway, even with all difficults that I was meeting on my way to get them. And I am looking forward for cure. Be happy and healthy - this is what we all aiming for. D.

[CHepCFree]

Finished 4 weeks of Harvoni and preparing for blood test tomorrow.   Side effects to date have been ringing in my ears, that is driving me crazy, some sleepless nights and a digestive system that is not working all that great, i.e. BM's are minimal.  I've read on these posts side effects that are not listed on the Gilead site and thus would recommend that everyone....no matter what your side effects..to report them to Gilead.   They don't know unless you tell them and we need to help our fellow heppers understand they are not alone in some of these side effects.   I saw someone here had tinnitus (ringing in the ears) for six weeks and then it stopped but there are so many posts, I can't find it any more.   If anyone is or has experienced that would love to hear from you.   thanks

[Katie]

Hi CHep..I had tinnitus prior to treatment and figured it was because of a long term sinus infection I had about 12 years ago.  When I first started Harvoni the first several days the mild ringing went to LOUD static noise, like a TV and it was horrible. Then a miracle occurred, I had NO noise whatsoever for 2 days.  The first silent, clear eras in 12 years.  Unfortunately it returned but is sometimes almost gone, so I think the medication definitely affects it.  Since I had it previously it is hard to say, but am keeping my fingers crossed it may go away for me.  My side effects have been mostly positive which I have mentioned on my other posts.  One negative is my hair is definitely thinning as I am shedding much more than usual.  Not that big of deal...yet and I have had other unrelated medication cause that in the past (for gallbladder) and when I stopped it, my hair thickened up.  The only other thing is my motivation is gone and I figure even though I am feeling 100% better now I just don't feel like doing much.  That is totally out of character as I have always been known for taking on and completing big projects.  I just figure I need to let my body heal, and those project will wait for me.

I just had my first 4 week blood work done and will find out the results on Thursday.  I am really looking forward to it as I am feeling better (and looking better too) than I have in years, so the results have to be positive.  We will have to compare notes, and good luck to you.  Everyone seems to react a bit differently as there are so many variables.

Katie

[Roger]

Finished 4 weeks of Harvoni and preparing for blood test tomorrow.   Side effects to date - BM's are minimal.  I've read on these posts side effects that are not listed on the Gilead site and thus would recommend that everyone....no matter what your side effects..to report them to Gilead.   

Free,
Good advise about people reporting to Gilead!  Their clinical study was small compared to all the guinea pigs out there using their Tx now.

Regarding the constipation, I too experience that.  Gilead mentioned diarrhea, but that has not been my situation.  To counteract the constipation I eat about 7 dried plumbs in the morning, 3 or 4 during lunch and 7 around dinner time.  That seems to take care of things the next day.  Before I figured that out, it was pretty dismal.  Plums are cheap, and good for you.  Give it a try.

[CHepCFree]

Free,
Good advise about people reporting to Gilead!  Their clinical study was small compared to all the guinea pigs out there using their Tx now.

Regarding the constipation, I too experience that.  Gilead mentioned diarrhea, but that has not been my situation.  To counteract the constipation I eat about 7 dried plumbs in the morning, 3 or 4 during lunch and 7 around dinner time.  That seems to take care of things the next day.  Before I figured that out, it was pretty dismal.  Plums are cheap, and good for you.  Give it a try.

I hope people call Gilead.  You are right that trials were small.  We are thr rel test cases.   

Yep finally bought some prune juice and found some tea with senna which is an herbal laxative.  May try some actul plums.     Thanks.   

[CHepCFree]

Hi CHep..I had tinnitus prior to treatment and figured it was because of a long term sinus infection I had about 12 years ago.  When I first started Harvoni the first several days the mild ringing went to LOUD static noise, like a TV and it was horrible. Then a miracle occurred, I had NO noise whatsoever for 2 days.  The first silent, clear eras in 12 years.  Unfortunately it returned but is sometimes almost gone, so I think the medication definitely affects it.  Since I had it previously it is hard to say, but am keeping my fingers crossed it may go away for me.  My side effects have been mostly positive which I have mentioned on my other posts.  One negative is my hair is definitely thinning as I am shedding much more than usual.  Not that big of deal...yet and I have had other unrelated medication cause that in the past (for gallbladder) and when I stopped it, my hair thickened up.  The only other thing is my motivation is gone and I figure even though I am feeling 100% better now I just don't feel like doing much.  That is totally out of character as I have always been known for taking on and completing big projects.  I just figure I need to let my body heal, and those project will wait for me.

I just had my first 4 week blood work done and will find out the results on Thursday.  I am really looking forward to it as I am feeling better (and looking better too) than I have in years, so the results have to be positive.  We will have to compare notes, and good luck to you.  Everyone seems to react a bit differently as there are so many variables.

Katie

Sorry to hear about hair loss.   Recommend you report this to Gilead.  Now that you mention no motivation, I am observing that recently.   Hopefully all this little challenges wiil disappear after 8/12/24 weeks.  I'm a 12 week tour. And of course, let our big challenge be gone!

[Katie]

You might want to check with your doctor on Senna.  It is hard on your liver, from what I've read.  I bought a bag of flax seed and cook it along with rice or oatmeal and that works really well too.  Eat lots of green veggies and maybe fiber such as Metamucil to stay regular.  As long as I eat a couple fruits a day and some high fiber cereal etc, I am fine but if I miss a day, I can tell.  Prunes are great so you may not need anything else.

I'm not going bald, or anything drastic but it is definitely noticeable and am glad the treatment is only 12 weeks!  I'm not panicking yet.  HA!

[Katie]

It looks as if senna is a problem after long term use but since our liver is healing and already compromised I wouldn't use it.  Check this out and there is lots of other info if you just Google senna liver.  I'd definitely ask your doctor if you are planning to use this daily.

http://www.nlm.nih.gov/medlineplus/druginfo/natural/652.html#Safety

[goodbyehepc]

Isn't it amazing how complicated data can be? Add in emotions and opinions, and we can have a field day! I looked at the data too, and wondered what I'd do if I was a clinician, or what I'd be concerned about if I was a patient. I can see the argument for extending the treatment to 12 weeks for GT 1a VL < 6 mil. (see table 6 http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdfThe biggest problems with these data are they are still relatively small (esp GT 1b's) and I have not seen a real breakdown of the results. For instance is the a difference between stage 2 vs stage 3 GT1a's?

Here is where it gets really tricky - when data say one thing and your doc or your gut say something else. We use data in a quest for certainty - to make sound decisions. But this data is all so close, that in the end the only certainty we get is that final lab results - either we are cured or we aren't. What I really hope for every patient is that they can live with the decisions, embrace them, then let them go. What will be will be. If you can let poor outcomes be nothing more than a temporary disappointment and then get back on track, it helps. Yes, we are dealing with our lives, but life is what we are doing in the moment, and these moments are all so precious.

I think it is time to agree to disagree, and move on from this discussion.

Yup the data is small but it is what it is.  I have put the question on this forum a while back trying to figure out 8 weeks Vs 12 and saw no feedback. And TBH I do not understand a word that Paul is saying. To scientific for me. Ultimately I need to stick  to my doctor's decision as he is responsible not the people on this forum. I do think it's sad you shutting the door on any discussion on the matter in an open forum though. People should be allowed to discuss things openly. That's the purpose of a forum...

[nicole_1234]

I've noticed some extra hair shedding when I wash or brush, but nothing crazy and also glad it's only 12 weeks. Seems like it won't be noticible.

[Lynn K]

I have noticed hair loss for the last few years while not on treatment. I basically have lost all my body hair and some areas on my head are a little thin but at least in my case I believe it is a symptom of my cirrhosis.

[mario555]

To the last few posts. I agree with the tintinitis (25% in left ear). Mine seems to be loudest in the hours following the pill or, if I get too excited. This ear problem is an 'advanced warning system " that I'm getting hyper. I did have that same problem before but at a much lower level.
Hair thinning. Yes I do but I' ve started with a full head of hair so only my wife sees it in the shower drain (men are blind to that Ha, ha)
Bowel movement. I'm usually so regular I could set my watch with them! Now, I have major difficulties to go. Thanks for the "prune trick"...
Personal drive. I am a baby boomer so, I 've always been hyper keen to make an extra buck! Since I've started the treatment, I have trouble to get going! What is affected is the" undertaking", the first few steps. I' m lucky to be able to reduce my work load for the next 4 months.
So all together, I agree there are side effects in addition to the ones experienced by Gilead studies.
On the other hand, I feel like bursting with energy. I have to go for walks all the time. I am almost hyper which I have to control or else "the ear ringing..."
Mario

[Roger]

Mario,
I notice that you are in Canada.  Did you have any problems getting Harvoni?
Was there an additional cost for the drug in your Provence?
Do you mind sharing how the Canadian system works for these types of
expensive drugs? Thanks!

[wa7uib]

Iam newbie to this forum. Alot of good information I've read on here, so I signed up for it. I just started on Harvoni 4 days ago. The side effect Iam noticing is it does make me tired and or sleepy. No headaches or anything. I've had Hep C probably since the 60's at my guess. Never noticed anything from it till I got into my 60's, now its starting to take it's toll. I was diagnosed with siroses as well. Don't know what stage it's at. I've only seen my Hepatologist once and had blood tests and a Ultra Sound. So, I have more to go through there I am sure. I also developed a chronic disease caused by Hep C called PCT. It causes sores and blisters on my hands. So, Iam taking the Harvoni now in hopes it can make me better. Thanks for all the posts guys..It really helps to read what others are doing and been through on here and mayby even what to expect.