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Hep C Discussion Forum -> Post Treatment -> 1yr post start of Tx with Harvoni
Post Info TOPIC: 1yr post start of Tx with Harvoni
Bestmomy


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RE: 1yr post start of Tx with Harvoni
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Hi Syd Thanks for your reply! Maybe the meds would be good for lifting my spirits. I'm just so anti drugs right now. I actually feel I am one of the lucky ones with relatively minor post symptoms compared to many others I read, maybe because I had no liver damage to start out. But I knew going into it on a new drug the future was unknown .. And to get cured of hep c, to me it was worth the risk. I keep hoping to completely rebound from the hit on my immune system. My biggest fear is that the cure is not permanent!! I so admire those who persist and go through treatment after treatment for cure! I'm so amazed at the strength of the human experience. Peace!

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Sydhanrahan


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Hi Bestmomy,

you must have been unlucky as most people who post here re Harvoni, report very few symptoms. 

I so relate to what you say though re feeling guilty for caring about your skin when we are so lucky to have gained access to life saving treatment. I took riba for 12 weeks and it's played havoc with my skin. Although I think there has been some improvement, a lot of it is permanent change. I also have chronic pain in my joints. Sometimes it's just hard to repeat the I'm blessed, I'm blessed mantra. 

But im sure there are other days when you do feel very relieved that hep c is a thing of the past. 

Syd

ps. I take anti depressants and they do make a difference. Perhaps worth a try if you are still feeling really down most of the time? Take care. 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Bestmomy


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It seems my vision, though still declined post treatment, is stabilizing. My skin problems , hives and breakouts still occurring but not as severe.  I had neither pretreatment. It has been 14 months now post treatment.  I use Zrytec  and cortisone as needed.   My depression concerns are not stablizing as hoped but still trying to be positive that can change.  I do not want to begin drugs for this, so trying to live with it for now.   I hate looking so much older but trying to make the best of it, exercising more, eating well.  My liver doc turned me back over to my family practice doc who I love so I'll see how the June checkup goes.  I'm truly grateful for all the good, which makes me hard on myself to feel sad.  I'm estranged from most of my former friends as I haven't shared my story after losing a few I  thought I could depend on.  Maybe it's time for me to be more public and attempt to help the fight.   

 Thanks to everyone for this forum and your input!!

Bestmomy



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Ari-anna


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It's interesting that so many people are reporting eye and skin issues post Harvoni. I do hope this gets taken seriously and sorted out.

Regarding your anxiety and stress Bestmomy, I'm glad that is easing - did you seek any treatment? Sometimes when our life is difficult and one problem gets resolved it creates room for another issue to pop it's head up looking for resolution. 

Good on you for querying these post tx side effects, I didn't use Harvoni so can't help much other than to say I admire you for reaching out.

Aroha

Ari

 



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Genotype 1a diagnosed 2005, Cirrhosis.

Pyglated Interferon/Ribavirin 2006, non-responder 

Viekira Pak/Ribavirin 24 weeks, virus undetected EOT 12 weeks SVR Feb 2016

New Zealand 64 yo
Tig


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Hello Bestmomy,

Looks like our messages posted almost at the same time. I'm sorry you're experiencing these long term effects. We do have some people complaining about some skin issues, fatigue and joint pain. Whether this is directly related to the medication is yet to be determined but there seems to be that common element involved. Since you discussed it with your doctor, it may help to request a referral to an Internist to discuss your ongoing problems. If your treatment doctor dismisses your complaints, it's time to seek another opinion. I'm wondering, since you are over a year since treatment ended, were you part of a study? I ask because you should report this to your study representative if possible. The FDA and the manufacturers need to be advised of these adverse effects.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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Bestmomy,

Congratulations! Fill us in when you have a moment. We'd love to share your highs and lows. I have faith that there are many good days ahead! Good luck smile



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Bestmomy


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Hello everyone, I'm still learning how to comment on this site so please excuse my incomplete texts. I am a year post 12 week harvoni treatment, and am grateful to be hep c free!! But I came across these blogs while trying to figure out if I am the only one with eye, skin and energy complaints. Several issues are coming up post treatment, some have gotten better, but I currently experience skin hives and weaker, and inflamed eyes also. Even the color of my eyes look different, dull for lack of a better word. I've been suffering with anxiety and stress which is easing off a bit, and I'm praying to bounce back. Do you guys feel like post sides are permanent, or may get better? My doctor too says it's not harvoni but it just sounds like too many problems for most people. Thank you for any input.

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Bestmomy


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Still clear but slow bounceback

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sunset


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Thank You for you kind welcome Tig!

  I wasn't sure about posting that link info as I have not validated it's credibility, but Its a site that seems to be pursuing some post issue liabilities. 

 

I have had MANY appts with many doctors at the VA hospital, which has been incredibly under-whelming in the answers dept. So I am now taking the long ride to Mass general and have been being referred from one specialist to the next. Whatever is going on, if it can be figured out I have confidence they can do it. 

When I get a minute I will check out the new members thread and introduce myself.



-- Edited by sunset on Thursday 31st of December 2015 03:21:06 PM

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vl 30k

no damage

41 years old

treatment naive until Harvoni SVR 24 +

8 weeks EOT april 8 2015
Tig


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Hi Sunset,

Welcome to the forum! If you're interested in leaving some personal experiences with treatment, we have several threads and discussions on the lingering post treatment side effects. You early Harvoni patients are the first to get where you are. There were no long term studies available then and it's valuable for many reasons to report the issues with your doctor and the manufacturer if possible. 

Keep in touch and if you're having some problems with your vision, make an appointment to rule anything out. Better to be safe! 

Thanks for recommending those links. Please feel free to start an introduction thread of your own in the New Members section too.

If you have any questions, just let us know.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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sunset


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Bear with me as this is my first post. I too am experiencing Visual decline and while researching a came across a website.

I cannot vouch for how legit it is as I have not contacted them, but if you google Harvoni and vision loss you will see a site by LLoyd wright and on that site on the left page you will see some links and info, we are not alone with this. 

 

 



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vl 30k

no damage

41 years old

treatment naive until Harvoni SVR 24 +

8 weeks EOT april 8 2015
Michaele


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Scruffy , this decline is definitely not age related , unless that 10-12yrs Ive aged since EOT is my eyes , too.   I waited for Harvoni because of eye issues.  Michaele



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Michaele


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Hi Fourlocos , I hope you called and reported this to the Harvoni people , when I called I got the impression I wasnt the 1st. They did say everyone with post tx problems should call and report them ASAP . Hope your feeling better than you look now. LOL Its not funny I aged about 10-12 yrs .  Michaele

 



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Gracie


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My vision hasn't been affected. Just dry eyes, but that's been going on for awhile and I believe is a symptom of hep c. I wear glasses, and the prescription is the same.



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
wendyo


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This thread scares me. Just finished tx 3 weeks ago. I never had to get cleared by an eye doctor or have a vision screening for interferon or harvoni. I wear glasses for distance, have not noticed a change yet. My eyes are red alot from strain/computer and I use artificial tears. I also have what they call Pterygium"surfers eye" from living in FL my whole life. 

OK...something to keep my eye on lol 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Tig


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That's a good question Scruffy. I think from just sitting back and listening to people here and elsewhere, the answer will be no. As you mentioned, the Interferon protocols all required vision screening, or were supposed to, before treatment. Our member Tim (Hrsetrdr) had to stop the old treatment because of retina problems. Fortunately that old poison destroyed his dragon too, even after his shortened course of tx. 

If anyone has the first inkling or a question about whether or not their vision has been adversely affected by HCV or the treatment to cure it, let your eye and liver specialist know about it.

4L, sorry about your eye and skin problems. Please let us know what you find out. You always handled any adversity during treatment like a fighter, I know this will be no different. If you need help twisting Gilead's arm for that Spa make over, just let me know. Truth be told though, I think you look "maaahvelous"!  =>



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Scruffy


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A little curious here. Did you Harvoni people have to get cleared by an eye Doctor before you got treated?? I was on the old inter. based triple an I had to get cleared by an eye doctor first. My close up vision is getting worse also be it could just be age.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
fourlocos


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I will be at my EOT on Harvoni anniversary in a couple months.  I noticed you mentioned vision degrading fast and facial aging as well.  Well add me to that list please.  I can't see squat anymore.  I have a referral for the eye specialists but haven't had time to deal with that yet.  But since I ended treatment I have triple wrinkles under my eyes.  As well as others on my face.  I felt like I was being very vain to even mention it but I look 8 years older at least.  I didn't have a wrinkle when I started!  And that bothers me more than the other problems I was left with!!  I mean you might feel like crap but you want to look marvelous!  Someone I know on a post treatment group posted that it can be something to do with fat cells decreasing around the eyes from certain drug treatments.  They can elsewhere but the eyes are the most noticeable.  I think Gilead should pay for me to get some cosmetic surgery don't you?  LOL



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!
Michaele


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Hey Grouper , Glad to hear from you . Im still a bit foggy myself , and getting blind,  too .  But , Im still standing . LOL Have a Happy Holiday time, and keep praying .    Michaele

 



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Michaele


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Hi Mallini, handsome as always, how's that beautiful wife and grandchild? I called the Harvoni people and they do want everyone who was treated with Harvoni and suffering vision problem post Tx to call and report it. Seems not to be uncommon . Cheers and Happy Holidays Michaele



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Groupergetter


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Hi Michaele, good to hear you are doing well.  We all seem to have our struggles.  My skin is also improving, now if the brain fog would only clear :)   Merry Christmas to you.  It's good that so many of us can celebrate a hepC free New Year.   Hoping and praying for those on tx, and those about to start that SVR is in their future. 



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
mallani


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Hi Michaele,

Great to hear from you and particularly wonderful to hear your pancreatic mass has gone.

I understand the vision bit- I've started using a yellow golf ball until I can get some prescription sunglasses.

Have a great Christmas. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Michaele


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Hi Matt ,  Glad to hear from you .  I still think its the Harvoni . I already had the start of  cataracts and was borderline for glaucoma , but nothing like this . I can hardly read print wearing 2.75 readers . Thats up from 1.50 in less than a year. My cataracts are not visable to the naked eye , and the eye pressure has gone down , but the vision is fading fast. Good luck.   Michaele



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Michaele


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Hi wmlj , I wonder if we are suppose to report the vision problems to the Harvoni people . I didnt  , but it makes sense; if that many people are noticing changes. Glad to hear your doing better.   Michaele



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Matt Chris


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Hey Michaele

Great news about your updated CT scan, its amazing how our bodies can take care of other issues once the dragon is vanquished.

My vision has somewhat also degraded but I attribute it to more to aging than "Harvoni".  

But I think "Harvoni" has caused some changes within my body that will take some time to sort out.   

Keep that good news coming 

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
wmlj1960


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That's really good news about your pancreatic mass. My vision is also failing at an alarming rate but there seems to be no 1 thing to blame it on. I still have 22 more Harvoni pills until I'm through but my innerds are feeling better already. That's the parts that really count anyway. 12 years alcohol free - that's awesome! It's good to hear from you Michaele. smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Michaele


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Hey Tig , nice to hear from you . I do think the Harvoni is causing increased vision problems , also noted facial aging increase . Skin texture on hand smoother but facial aging is off the chart . Now that my innerds are better , my outers looks like heck. LOL   Michaele

 



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Tig


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Hi Michaele,

So good to see you again! What wonderful news regarding the pancreatic mass. What a scare that must've been. I can't imagine the shock and joy you must be feeling after finding out it disappeared! That's a Christmas miracle indeed!

My vision has gotten far worse too. I don't know why it has happened faster than expected and neither do the doctors. I've started showing signs of Glaucoma, cataracts and I just can't see! Old age? Probably a lot to do with it, but I have to wonder. At least my liver is in a better place, the rest of me is just getting old, lol!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Michaele


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Hi  everyone ,   its been a year since I had to have the pancreatic mass tested before treatment. I had my  1 year follow up CT scan , and the mass is gone, resolved, history ! So a Christmas Miracle for me .  The doctor seemed dumbfounded, as it wasn't a pseudo- cyst   confuse .  He asked me if I had been drinking last year , I haven't had  drink in over 12 years. And that seemed like a dumb question, as the mass was discovered years before. He doesn't think the Harvoni had anything to do with it  resolving . Personally, I became so sick after that test; I had to go to the ED , where they did an Ultrasound and said,  "It got bigger." ; could be from hematoma from biopsy. Well, maybe it burst or reabsorbed with the hematoma , but its gone after 4yrs or more . I have notice my vision is a lot poorer since treatment . .          Merry Christmas and Happy Holidays to all. Still praying for all of you    Michaele



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