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Author Topic: Harvoni Side Effects  (Read 29372 times)

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Offline julu49

  • Member
  • Posts: 63
Harvoni Side Effects
« on: September 10, 2015, 12:51:28 am »
How many of you had side effects while on Harvoni who are now Hep C free yet still have the side effects from the treatment?
I'm beginning to feel a little (a lot) like a lab rat.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Harvoni Side Effects
« Reply #1 on: September 10, 2015, 05:35:24 pm »
Not me.

Here's another question: How many of you had minimal or no side effects during treatment? I ask because a terrified friend who never takes medication of any sort has finished treatment with NO side effects. I was amazed.  Most of us blame something on treatment, whether or not it was related.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side Effects
« Reply #2 on: September 10, 2015, 07:42:54 pm »
Lucinda, I'm in week 10 of Harvoni treatment. Side effects have been minimal and very intermittent -- most days, after I swallow the pill, I forget I'm being treated until the alarm goes off 24 hours later. Also, I've had POSITIVE side effects: (1) a lot more energy and (2) thanks to that, a much easier time surviving heat waves.

julu49, in the "Post Hepatitis C Treatment" forum are some threads that indicate you are not alone. I'm sorry you have been unlucky in this regard.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Harvoni Side Effects
« Reply #3 on: September 10, 2015, 10:37:37 pm »
Wow Gnatty - thank you. Hope to celebrate victory with you in the near future.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline julu49

  • Member
  • Posts: 63
Re: Harvoni Side Effects
« Reply #4 on: September 10, 2015, 11:35:40 pm »
Yay!! You're doing well and keeping positive. I'm ready for that celebration too.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side Effects
« Reply #5 on: September 10, 2015, 11:43:54 pm »
Lucinda, I would have to say I am one of the lucky ones that has had virtually no side effects...I went a little anemic and slight headaches the first 2 days but that was my own fault from not eating well.  I have to agree with Gnatty, I have had positive effects. Way more energy, my joints have quit hurting and I am sleeping much better.

scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side Effects
« Reply #6 on: September 10, 2015, 11:44:54 pm »
Oh yea, and I am on week 7 of Harvoni treatment

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Corey

  • Member
  • Posts: 31
Re: Harvoni Side Effects
« Reply #7 on: September 11, 2015, 08:52:18 am »
I finished 24 weeks of Harvoni and my EOT test was UND.  Side effects were virtually non existent.   Post treatment, I was tired, a bit achy and somewhat down. Side effects? Withdrawal?   A friend dragged me off for three days of some moderate to tough hiking in beautiful terrain and fantastic weather.  We sweated buckets during the day, met up with some other friends and stayed at a lodge with a bunch of other really interesting people.  Came back home feeling great

So I agree that we may be attributing side effects to treatment that are more appropriately attributable to the stress and anxiety of worrying about treatment, waiting for test results and, in my case. obsessing about whether this is truly the end of a 40 year chapter of living with hepatitis. 

...and I'll also add that exercise, sunshine and the company of good friends was the perfect antidote for me. 

Offline Sheltonmj

  • Member
  • Posts: 36
  • New at this
Re: Harvoni Side Effects
« Reply #8 on: September 12, 2015, 09:22:38 pm »
I am day 9 and seem to be experiencing better breathing.
 I was given a diagnosis of idiopathic pulmonary fibrosis in
2007.
 I retired asap and have had breathing in a way that I don't push my self much.
But now there is a very noticeable difference in how easy it is to breath. !
 Very much so. 
My oxygen has gone from a routine 97-96 ml
To 98-99!
 Has any thing like this been reported ?
 
Been infected since early 80s
60
W male
Genotype 1a
 F4 cirosis
 Vl 4,000,000

Offline Sheltonmj

  • Member
  • Posts: 36
  • New at this
Re: Harvoni Side Effects
« Reply #9 on: September 13, 2015, 06:21:31 pm »
It's probably a decision you should shoulder. Your aware of your situation and peers.
I told everyone in my factory. They even asked me to talk to people who handled worse then I. There were 14000 employees and I led an awareness cause and hoped it hepled someone.
Caution. "No good deed goes unpunished" yes some were mean. But I don't care.
Been infected since early 80s
60
W male
Genotype 1a
 F4 cirosis
 Vl 4,000,000

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Harvoni Side Effects
« Reply #10 on: September 13, 2015, 06:27:20 pm »
I moved this thread to a new topic, probably just as you were posting. Would you mind copying and pasting your reply? I posted it here: http://forums.hepmag.com/index.php?topic=3316.new#new
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline julu49

  • Member
  • Posts: 63
Re: Harvoni Side Effects and diabetes type 1 actually 3c but it's new.
« Reply #11 on: September 14, 2015, 03:09:11 am »
Here I am again. I'm not negative. I'm just having side effects which are things that weren't there before starting on the drug.
I still have a question My blood sugar is not going up like it used to. Used to be I"d eat almost anythig and I'd have to inject. No more
Does anyone know about this or having this problem? I'm still trying to figure out my diabetes, now what?
Also have been having sleeplessness, and now anxiety which is one thing I can't handle. I'd rather have pain than anziety.
Anyone diabetic

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side Effects and diabetes type 1 actually 3c but it's new.
« Reply #12 on: September 14, 2015, 06:13:18 am »
Here I am again. I'm not negative. I'm just having side effects which are things that weren't there before starting on the drug.
I still have a question My blood sugar is not going up like it used to. Used to be I"d eat almost anythig and I'd have to inject. No more
Does anyone know about this or having this problem? I'm still trying to figure out my diabetes, now what?
Also have been having sleeplessness, and now anxiety which is one thing I can't handle. I'd rather have pain than anziety.
Anyone diabetic
I was really lucky the clinic here is specifically set up for dealing with liver patients the nurses are very experienced with HCV, HBV and AIDS.
My treatment was a breeze for them to deal with because they really understand the latest treatment protocols. They have quite a few patients that are also on insulin. So there is a safety net for those who need it, fortunately I did not have to use it.  I do not have diabetes even though type two runs on my fathers side of the family and just about all his siblings and my dad himself developed the disease in their late 50s and 60s

I hope you have good support to talk to and I encourage you to speak to the professionals. Harvoni is new but Solvoldi is not that new so the problems that diabetics can encounter should be well understood by the people dispensing the drug and the health care workers you are dealing with.

It is really easy to become far to concerned over things if there are any side effects whatsoever. The side effects you can expect should not be so drastic that you will not metabolize your food so if you pay careful attention to your blood sugar levels you should not experience dangerous side effects.

The headaches that I experienced were not at all severe or prolonged and the anxiety eased up if I drank water and did things to relax.

I know that for a while early on in treatment I felt like I was crawling out of my skin at times! I know that if I had not kept my mind and body active I would have had a more difficult time.

Please take care and don't become worried about the minor side effects of this med, far too many people seem to become obsessed with every little ache and pain and mistake them for side effects from Harvoni.

THAT BEING SAID if you are experiencing trouble taking insulin and balancing your food intake please get help instead of consulting this forum.

There is also a support number you can call. And if necessary you can discuss any problems you are experiencing directly with professional nursing support people at Gilead. If your are in the US. In Canada your mileage may vary but I was given a contact number in Toronto that does the same work in Canada that the link that I posted does in the US.  Fortunately I did not have to use support during treatment but it is there. Gilead seems to be a very responsible firm in this regard they don't just dole out pills and leave people to figure it out on their own than Heaven :) .

http://www.gilead.com/responsibility/us-patient-access/support%20path%20for%20sovaldi%20and%20harvoni

All the best in freeing yourself from this terrible disease. You are not alone and everyone here is pulling for you!

Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline julu49

  • Member
  • Posts: 63
Re: Harvoni Side Effects
« Reply #13 on: September 14, 2015, 01:33:39 pm »
Thanks, Eric. I'll take your advice
julu

Offline julu49

  • Member
  • Posts: 63
Re: Harvoni Side Effects
« Reply #14 on: September 15, 2015, 02:22:50 am »
I think it's rude and uncaring to think that those of us who are experiencing side effects are thought of as "just focusing on every little ache and pain." I joined this board for support and understanding, not to be judged. I guess this is just not the place for me.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Side Effects
« Reply #15 on: September 15, 2015, 02:58:39 am »
Hi julu

Sometimes it is difficult for those of us who have little issue with treatment to get our heads around it is not that way for everyone.

But everyone does have different reactions to medications plus you have a secondary medical condition that make you own situation more complicated.

There have been several threads for Harvoni side effects you are not alone in feeling that treatment is tough at times.

I hope you will continue as a member of our forum as I said you are not alone but not everyone can appreciate that some struggle more than others.

Best of luck to you on treatment
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline julu49

  • Member
  • Posts: 63
Re: Harvoni Side Effects
« Reply #16 on: September 15, 2015, 04:28:17 am »
Thank you.  I appreciate your support more than you know.
judy

Offline byebyeC

  • Member
  • Posts: 286
Re: Harvoni Side Effects
« Reply #17 on: September 15, 2015, 08:56:54 pm »
I think it's rude and uncaring to think that those of us who are experiencing side effects are thought of as "just focusing on every little ache and pain." I joined this board for support and understanding, not to be judged. I guess this is just not the place for me.

Juju, you took the words right out of my mouth.

I'm very happy for the people with little to no sides. Consider yourselves very blessed.

For those of us having a rougher go, we need people to be considerate of the fact that we are not them. Don't have their DNA, drug sensitivities, health history or life. I too need support with the difficult sides. They're straight up kickin' my behind. I don't want to feel that I can't post anything about the difficulties I'm having for fear of people judging me.

This is the only place I feel completely safe being completely honest about what I'm going through. It's hard enough on my family just experiencing this whole ordeal. I can't have them shoulder more.

You all are all we have to tell the truth of our tx to... please be kind.
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline julu49

  • Member
  • Posts: 63
Re: Harvoni Side Effects
« Reply #18 on: September 15, 2015, 09:07:29 pm »
 :) :) :) It's not nice that you are also having side, but I sure do appreciate your letting me know that I'm not so very alone here in this.
I already cleared it as per my test today, I'm at almost 6 weeks. Phew!

Offline byebyeC

  • Member
  • Posts: 286
Re: Harvoni Side Effects
« Reply #19 on: September 16, 2015, 01:25:20 am »
Woo hooooooooo! 8)
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side Effects
« Reply #20 on: September 16, 2015, 01:30:22 am »
That's great bye bye.....I went from 13.9 million to undetected!!! Keep on truckin,,,,your on the cure train


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Harvoni Side Effects
« Reply #21 on: September 16, 2015, 01:08:09 pm »
It is a complicated situation. If I had a dollar for everyone I heard who won't do treatment because they heard about the side effects, I would be wealthy. I'd be even wealthier if I collected money every time I heard someone say that the side effects weren't as bad as they imagined them. This is why I really want the whole story told, so people can make informed decisions about treatment.

The trick is to present fair and balanced info. Even this is impossible to do, because I know that the people who are having an easy time are unlikely to be using forums such as this.

It is also impossible to really know what is true among us who do use the forum. I have a lot of experience with treatment, both personally and professionally, and it was very hard to sort out which side effects were from treatment and which were not. For an entire week I blamed ribavirin for a rash before it was pointed out to me that I had poison oak (and I had an obvious reason for having poison oak). Our minds are so powerful, and I have a big enough ego to believe I know my body well enough to be able to tell the difference. Time has shown me that I am wrong more often than I care to admit.

The bottom line is that we need to serve the truth, knowing that a small percentage of people will struggle with side effects, and we are here to hold each other up. Thank goodness most people have a relatively easy time, so there are more people to share the load. Things have come a long way from the days of PEG+rib or even worse, the triple therapies. Yes, we have come a long way. B

But we have a long way to go. I would love to live long enough to see a world free of hep C. That won't happen if we don't treat everyone, and we can't treat everyone if they are afraid to try treatment.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Harvoni Side Effects and diabetes type 1 actually 3c but it's new.
« Reply #22 on: September 16, 2015, 01:35:22 pm »
. . . I still have a question My blood sugar is not going up like it used to. Used to be I"d eat almost anything and I'd have to inject. No more
Does anyone know about this or having this problem? I'm still trying to figure out my diabetes, now what? . . .
Anyone diabetic
Hi, Judy -- Although I'm not diabetic, I did go to a program last night where 4 hepatitis doctors each presented some information. The doctor who covered extrahepatic manifestations of Hep C said that Hep C patients are 3 times more likely to have diabetes, because Hep C affects the pancreas as well as the liver. He went on to say that curing Hep C can prevent diabetes in those who are prediabetic and can improve insulin _____ (sorry I couldn't write everything down fast enough) in those who do have diabetes.

So I wouldn't be surprised if during treatment, while the amount of Hep C is being drastically reduced quickly, insulin issues arise. I trust you have been reporting all issues to your hepatitis specialist.

Congrats on clearing the virus! I'm so glad you and byebyeC have "met" on the forums. I lurked for months before I became a forum member, so I've seen it happen over and over again that people form mini-support groups based on starting treatment at about the same time &/or being on the same meds &/or having similar side effects (or lack thereof).

Best wishes to you and byebyeC and everyone else on this thread.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline julu49

  • Member
  • Posts: 63
Re: Harvoni Side Effects
« Reply #23 on: September 16, 2015, 02:21:22 pm »
Hi Gnatty,
Thank you for posting this. Very interesting. My diabetes is caused by years of chronic pancreatitis which has eaten away at my pancreas so that now it is like a hard stick 1/8th of the size of normal. The diabetes is new so now I'm hoping if I take care of the liver that I'll have a few more years without it again. Thanks!  julu

Offline KimInTheForest

  • Member
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  • Believe in yourself
Re: Harvoni Side Effects
« Reply #24 on: September 16, 2015, 02:41:01 pm »
:) :) :) It's not nice that you are also having side, but I sure do appreciate your letting me know that I'm not so very alone here in this.
I already cleared it as per my test today, I'm at almost 6 weeks. Phew!

Congrats on clearing, Judy!  8)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline julu49

  • Member
  • Posts: 63
Re: Harvoni Side Effects
« Reply #25 on: September 16, 2015, 02:54:29 pm »
Thank you, kim.
julu

Offline Picnic

  • Member
  • Posts: 110
Re: Harvoni Side Effects
« Reply #26 on: September 16, 2015, 03:38:06 pm »
I am diabetic and was cured of hep c. My sugars are much better and my A1c is now 5.8. Larry
Larry

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Harvoni Side Effects
« Reply #27 on: September 16, 2015, 03:45:14 pm »
One thing that often happens is cholesterol goes up. Hep C seems to suppress LDL, and during and after treatment, LDL increases and people find themselves with a cholesterol problem for the first time. They had it all along, but the hep C masked it.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline The wife

  • Newbie
  • Posts: 1
Re: Harvoni Side Effects
« Reply #28 on: September 16, 2015, 05:06:12 pm »
Has anyone had any heart issues after taking harvoni. My husband finished his 90 days of Harvoni in July this year. Never had any problems with his heart till 3 days before Labor day then Aortic dissection and emergency sugery. Out of the hospital for three days and now at another hospitsl(ambulanced from dr. check up yesterday) with fluid around the heart. ER docs also said he has a spot on his liver and a spot on his kidney. Looking for answers please. Thanks,The wife.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side Effects
« Reply #29 on: September 16, 2015, 08:27:45 pm »
I am glad I read your post Lucinda about chloresterol. I just got my test results back a few days ago and my numbers were outstanding, but my choresterol was a little wacky. Not too bad but I usually have great chloresterol and the rest are not good, now it's the opposite. I will take it though, loved the liver function numbers.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline byebyeC

  • Member
  • Posts: 286
Re: Harvoni Side Effects
« Reply #30 on: September 17, 2015, 05:41:16 am »
That's great bye bye.....I went from 13.9 million to undetected!!! Keep on truckin,,,,your on the cure train


Scout

Why thank you Scout :) I shall keep on truckin' right behind ya!
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline april

  • Member
  • Posts: 23
Re: Harvoni Side Effects
« Reply #31 on: September 17, 2015, 08:02:15 am »
I am on week 12 of 12. I have had virtually no side effects until this last week on treatment. I have been undetectable since week 4. I have been dealing with extreme headaches. So bad, they wake me up at night. The pain is in my forehead. 6 more days to go. I work 6 days a week and have not had to miss any work so far. All in all the treatment has been a breeze with a few extra unwanted pounds, I have been doing great. I can make it through this last week. I was wondering if the headaches will stop after treatment ends? Advil doesnt seem to be helping.
Hep C
Geno type 1a
VL  1,800,000
f2
1999 Interferone/riba- non responder
2002 peg/riba- non responder
2006 peg/riba/study drug NM283-relapsed
July 1, 2015 started harvoni (12 weeks)
5th week labs undetected
EOT 9/23/15
90 days after treatment SVR
180 days after treatment SVR
considered cured

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Harvoni Side Effects
« Reply #32 on: September 17, 2015, 09:22:02 am »
It's odd April that some people get the headaches and some don't. I had a few but figured out I wasn't drinking enough water. I have read on here that too much water can give you a headache also. Congrats on being on your last week of treatment.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Lou66

  • Member
  • Posts: 18
Re: Harvoni Side Effects
« Reply #33 on: September 17, 2015, 11:17:18 am »
I'm on first month, side effects all... Joint pain, fatigue, pain on the liver side, sleep few hours.  And before teatment they said me ...no problem is like a walk in the park... But wich park?? Desert park!
Only one posite effect is the real dream when I sleep, is like true, and was many years I didn't dream really like now.
P.s. Sorry for my English... But hope have it's price, and I will pay the bill pains.
« Last Edit: September 17, 2015, 12:55:33 pm by Lou66 »
Hcv since 1986
2003 peg inf.+ riba nullrespond.
Genotype 1a
Fibroscan 18,1  F4
Viral load 3800000
Start Harvoni 24 weeks 24 aug. 2015

Offline gnatcatcher

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Re: Harvoni Side Effects
« Reply #34 on: September 17, 2015, 01:38:36 pm »
. . . But hope have it's price, and I will pay the bill pains.
Bravo, Lou -- that's a great attitude! You have almost finished your first bottle of pills. One forum member who did the 12-week Harvoni treatment celebrated finishing treatment by turning the three empty bottles into a mobile. You will have six empty bottles with which to make an artistic masterpiece!

In Italy, do the doctors schedule laboratory tests after 4 weeks of treatment? I wish you excellent test results.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lporterrn

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Re: Harvoni Side Effects
« Reply #35 on: September 17, 2015, 02:06:58 pm »
April - When it comes to Harvoni headaches, Tylenol is a better remedy that Advil. Just be sure that you keep the total daily dose to under 3000 mg if no cirrhosis, and 2000 mg if you do have cirrhosis - better to take 2 regular strength than 2 extra strength (or try one extra strength) Be sure to check ALL your other meds for the presence of acetaminophen since that is where Tylenol got it's nasty "bad for the liver" reputation, since it can get toxic at 5000 mg or more. People might not realize that acetaminophen is in pain meds, sleep meds, PMS meds, sinus mends, etc.

Advil, Aleve, and aspirin cause rebound headaches, and when they wear off the headache can come back, sometime worse.

Also, lots of water helped me. I can't recall when the headaches stopped, since I was in a clinical trial and took ribavirin, but they did stop.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline lporterrn

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Re: Harvoni Side Effects
« Reply #36 on: September 17, 2015, 02:13:19 pm »
Lou66 - love your spunk. Bummer for all the sides. I wish we had a pre-treatment lab which could predict who would have what side effect so we could prepare.

Hep has a few tips on how to deal with side effects, and of course, you will find some tips here on the Forum: http://www.hepmag.com/articles/2512_24160.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Lou66

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Re: Harvoni Side Effects
« Reply #37 on: September 17, 2015, 03:01:25 pm »
Bravo, Lou -- that's a great attitude! You have almost finished your first bottle of pills. One forum member who did the 12-week Harvoni treatment celebrated finishing treatment by turning the three empty bottles into a mobile. You will have six empty bottles with which to make an artistic masterpiece!

In Italy, do the doctors schedule laboratory tests after 4 weeks of treatment? I wish you excellent test results.

Yes, gnatcatcher, first lab result is at 4 weeks, but in my town the public health care is too busy only one doctor for hundred people, and is a problem for speak whit him, no support assistance, no experienced with new medicine, and the web is my safe.... I appreciate this forum for the news and i think you, american people stay advance because start new therapy before europe. My hope in good result lab tomorrow.... Stay strong american friend!!!  Ciao
Hcv since 1986
2003 peg inf.+ riba nullrespond.
Genotype 1a
Fibroscan 18,1  F4
Viral load 3800000
Start Harvoni 24 weeks 24 aug. 2015

Offline april

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Re: Harvoni Side Effects
« Reply #38 on: September 17, 2015, 07:25:48 pm »
April - When it comes to Harvoni headaches, Tylenol is a better remedy that Advil. Just be sure that you keep the total daily dose to under 3000 mg if no cirrhosis, and 2000 mg if you do have cirrhosis - better to take 2 regular strength than 2 extra strength (or try one extra strength) Be sure to check ALL your other meds for the presence of acetaminophen since that is where Tylenol got it's nasty "bad for the liver" reputation, since it can get toxic at 5000 mg or more. People might not realize that acetaminophen is in pain meds, sleep meds, PMS meds, sinus mends, etc.

Advil, Aleve, and aspirin cause rebound headaches, and when they wear off the headache can come back, sometime worse.

Also, lots of water helped me. I can't recall when the headaches stopped, since I was in a clinical trial and took ribavirin, but they did stop.
Hep C
Geno type 1a
VL  1,800,000
f2
1999 Interferone/riba- non responder
2002 peg/riba- non responder
2006 peg/riba/study drug NM283-relapsed
July 1, 2015 started harvoni (12 weeks)
5th week labs undetected
EOT 9/23/15
90 days after treatment SVR
180 days after treatment SVR
considered cured

Offline april

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Re: Harvoni Side Effects
« Reply #39 on: September 17, 2015, 07:28:23 pm »
lporterrn Not sure if I am using this forum correctly, but I'd like to thank you for the advise. I will be taking regular strength tylenol from now on. 5 more days to go!!!!
Hep C
Geno type 1a
VL  1,800,000
f2
1999 Interferone/riba- non responder
2002 peg/riba- non responder
2006 peg/riba/study drug NM283-relapsed
July 1, 2015 started harvoni (12 weeks)
5th week labs undetected
EOT 9/23/15
90 days after treatment SVR
180 days after treatment SVR
considered cured

Offline byebyeC

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Re: Harvoni Side Effects
« Reply #40 on: September 17, 2015, 07:45:23 pm »
I'm on first month, side effects all... Joint pain, fatigue, pain on the liver side, sleep few hours.  And before teatment they said me ...no problem is like a walk in the park... But wich park?? Desert park!
Only one posite effect is the real dream when I sleep, is like true, and was many years I didn't dream really like now.
P.s. Sorry for my English... But hope have it's price, and I will pay the bill pains.

Hi Lou :)

No walk in the park for me or julu. You are not alone. And LOL desert park :D I agree! I am getting the dreams too! Dreamed I was on holiday in Australia from all of the Aussies on the forum! Great dream :D Hang in there. We are with you.
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline julu49

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Re: Harvoni Side Effects
« Reply #41 on: September 17, 2015, 10:35:12 pm »
My dreams were just the first few nights, then they went away. I kind of wish they didn't they were all very entertaining, not threatening and so realistic. Oh well, not willing to start over now. Cleared the virus at week 6. YAY!

Offline julu49

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Re: Harvoni Side Effects
« Reply #42 on: September 17, 2015, 10:41:25 pm »
I'm not sure if I read this here or not, but it's a formula for how much water you need to drink every day. Your weight x 16 ./. 240 = amount results in milliliters.
I came up with 6 16oz. glasses. I wanted to find out since it was making me sick to drink all the water I was forcing down my gullet. Also, my doc said "not too much water."
If I read this here I feel it still warrants another post.

Offline lporterrn

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Re: Harvoni Side Effects
« Reply #43 on: September 17, 2015, 10:50:19 pm »
I prefer the "output" method - if your urine is pale yellow or nearly clear, you are getting enough water.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Lynn K

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Re: Harvoni Side Effects
« Reply #44 on: September 17, 2015, 10:56:54 pm »
Just to add the requirement is fluids not only water.

Even coffee counts although it has a diuretic effect the net effect is still more fluid in than going out.

Also the food we eat also contains fluid that goes to our daily intake

From the Mayo clinic

http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/water/art-20044256

Water: How much should you drink every day?

Water is essential to good health, yet needs vary by individual. These guidelines can help ensure you drink enough fluids.

How much water do you need?

Every day you lose water through your breath, perspiration, urine and bowel movements. For your body to function properly, you must replenish its water supply by consuming beverages and foods that contain water.

So how much fluid does the average, healthy adult living in a temperate climate need? The Institute of Medicine determined that an adequate intake (AI) for men is roughly about 13 cups (3 liters) of total beverages a day. The AI for women is about 9 cups (2.2 liters) of total beverages a day.
What about the advice to drink 8 glasses a day?

Everyone has heard the advice, "Drink eight 8-ounce glasses of water a day." That's about 1.9 liters, which isn't that different from the Institute of Medicine recommendations. Although the "8 by 8" rule isn't supported by hard evidence, it remains popular because it's easy to remember. Just keep in mind that the rule should be reframed as: "Drink eight 8-ounce glasses of fluid a day," because all fluids count toward the daily total

Beyond the tap: Other sources of water

You don't need to rely only on what you drink to meet your fluid needs. What you eat also provides a significant portion of your fluid needs. On average, food provides about 20 percent of total water intake. For example, many fruits and vegetables, such as watermelon and spinach, are 90 percent or more water by weight.

In addition, beverages such as milk and juice are composed mostly of water. Even beer, wine and caffeinated beverages — such as coffee, tea or soda — can contribute, but these should not be a major portion of your daily total fluid intake. Water is still your best bet because it's calorie-free, inexpensive and readily available.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lynn K

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Re: Harvoni Side Effects
« Reply #45 on: September 17, 2015, 11:09:18 pm »
also

http://www.webmd.com/fitness-exercise/water-intoxication

Can You Drink Too Much Water?

But can there be too much of a good thing? In rare cases, drinking an extreme amount in a short time can be dangerous. It can cause the level of salt, or sodium, in your blood to drop too low. That's a condition called hyponatremia.It's very serious, and can be fatal. You may hear it called water intoxication.

How much would you have to drink? An enormous amount. Gallons and gallons of water.

"These are very isolated cases, and this is extremely rare," says Sharon Bergquist, MD. She's an assistant professor of medicine at Emory University School of Medicine in Atlanta. "More people by far and away are dehydrated, [rather] than having a problem with over-hydration."
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline lporterrn

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    • LucindaPorterRN
Re: Harvoni Side Effects
« Reply #46 on: September 17, 2015, 11:13:43 pm »
A guardian angel came into my life and suggested that two of my posts (esp. the long one) might have a negative effect on those who are struggling with side effects. This angel gently pointed out various issues I had not considered. I am deeply sorry if my words wounded anyone, especially to Julu who began this thread. I can get wrapped up in my own concerns sometimes, and while my intention might have been to be helpful, my words may have felt otherwise.

I will try to look at my words more carefully before I press "post."
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline julu49

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Re: Harvoni Side Effects
« Reply #47 on: September 18, 2015, 12:25:07 am »
Hi I,
Thank you for that. I think we all have to be very careful in realizing that everyone is different and we all have legitimate concerns. I appreciate your response. Weird though, it wasn't you that caused me to feel slighted unless....you have to handles?
Thanks
julu

Offline gnatcatcher

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Re: Harvoni Side Effects
« Reply #48 on: September 18, 2015, 04:02:55 am »
Yes, gnatcatcher, first lab result is at 4 weeks, but in my town the public health care is too busy only one doctor for hundred people, and is a problem for speak whit him, no support assistance, no experienced with new medicine, and the web is my safe.... I appreciate this forum for the news and i think you, american people stay advance because start new therapy before europe. My hope in good result lab tomorrow.... Stay strong american friend!!!  Ciao
Ciao, Lou66. (I love it that Italian uses the same word for hello and good-bye.) Thank you for describing the health care situation in Italy. I see the many flaws in the American system and tend to think "the grass is greener on the other side," but you and the forum members from other countries have taught me that every country has gaping holes in its health safety net. Incidentally, some medicines get approved and used in Europe long before the American authorities and/or politicians make those medicines available here. And many Americans, usually those who live far from major cities, are faced with doctor and support shortages similar to yours.

Even for someone like me who lives near a big city that has multiple hospital systems competing for patients, these hep forums are crucial for education and support. You and our forum friends from Australia, Canada, Norway, etc. are a GREAT asset. Thank you for participating!
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline gnatcatcher

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Re: Harvoni Side Effects
« Reply #49 on: September 18, 2015, 04:19:55 am »
A guardian angel came into my life and suggested that two of my posts (esp. the long one) might have a negative effect on those who are struggling with side effects. This angel gently pointed out various issues I had not considered. I am deeply sorry if my words wounded anyone, especially to Julu who began this thread. I can get wrapped up in my own concerns sometimes, and while my intention might have been to be helpful, my words may have felt otherwise.

I will try to look at my words more carefully before I press "post."
Lucinda, no matter how carefully a person looks before posting (or edits the post afterwards, as I frequently do), it is probably impossible to prevent unintentionally hurting someone now and then. And it may be impossible for someone who has had few side effects and someone who has had many to find enough common ground to become close friends. For example, the person with few side effects may feel "survivor's guilt" and fall silent, which could be interpreted by the person enduring many side effects as a lack of caring.

I've been impressed by the magnanimity most people on the hep forums have shown toward one another. Lucinda and our other moderators, thank you for all the work you do to nip problems in the bud and fill in the gaps in our understanding.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lou66

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Re: Harvoni Side Effects
« Reply #50 on: September 18, 2015, 06:41:40 am »
After 20 days start teatment lab result is <1.5E+1, the Lab doctor say is detcted but less 15 IU/ml. I started with 3800000 iu/ml.
I' m happy but I hope before not detected... The next month kill him!!!
Hcv since 1986
2003 peg inf.+ riba nullrespond.
Genotype 1a
Fibroscan 18,1  F4
Viral load 3800000
Start Harvoni 24 weeks 24 aug. 2015

Offline gnatcatcher

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Re: Harvoni Side Effects
« Reply #51 on: September 18, 2015, 07:39:03 am »
Lou66, that is excellent progress for just 20 days! You are definitely "on track" to obtain a not detected result the next time. Congratulations!
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Harvoni Side Effects
« Reply #52 on: September 18, 2015, 08:02:08 am »
Bravo Lou66, great results! Keep walking through desert park and you will get to the other end. There will be a much nicer park there!
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline lporterrn

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Re: Harvoni Side Effects
« Reply #53 on: September 18, 2015, 12:41:44 pm »
Hi Julu,
Other than love handles, I only have one. Thanks for your response.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline julu49

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Re: Harvoni Side Effects
« Reply #54 on: September 18, 2015, 10:12:37 pm »
 ;D

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side Effects
« Reply #55 on: September 25, 2015, 07:31:26 pm »
I think it's rude and uncaring to think that those of us who are experiencing side effects are thought of as "just focusing on every little ache and pain." I joined this board for support and understanding, not to be judged. I guess this is just not the place for me.
I am very sorry if I offended you in any way whatsoever. It was not at all my intention. I did have very some serious bumps along the road to SVR 12 during Harvoni treatment and am still suffering from the chaos that HCV has created both physically and spiritually.

It is a terrible affliction and diabetes along with HCV is a double curse without a doubt, I truly hope you have better pancreatic function after a fully successful treatment with few side effects and only hope that I never have to use insulin.

 
Eric Reesor
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline julu49

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Re: Harvoni Side Effects
« Reply #56 on: September 25, 2015, 10:32:52 pm »
Awhhh, thanks. Mugwump. It's nice to know you have my back on this.
julu

Offline shellyely

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Re: Harvoni Side Effects
« Reply #57 on: September 26, 2015, 04:01:30 pm »
Im having the normal side effects,headache and tiredness,but i'm also itching ALOT!!! Kinda driving me nuts and is effecting my sleep and i love my sleep..

Offline lporterrn

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Re: Harvoni Side Effects
« Reply #58 on: September 26, 2015, 04:06:25 pm »
Shellyely - are you taking ribavirin? I had those issues with ribavirin, and my doc prescribed a low-dose mildly sedating antihistamine, which helped the issue and helped me sleep. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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