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. 

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

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

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.

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 

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.

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.

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. 

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

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

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.

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 

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"!  =>

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.

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

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

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

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. 

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.

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

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

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

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.

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

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!

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    .  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