Started Harvoni

[traumanurse]

Hi, new here. I am 60 yrs old, an RN and I worked level one trauma in the 1980s…we didn't even wear gloves then!! (Just glad I dodged the HIV bullet!!)

I have been on Harvoni for 4.5 weeks and I am feeling WONDERFUL!!! The side effects are VERY minimal, just a couple of headaches, some mild diarrhea for a week and some generalized, intermittent  fatigue. I have found that LOTS of water will help the headache, and actually prevent them. Because my chronic fatigue was so overwhelming at times, I quit working full time about 6 months ago, the additional  and mandatory call was too much for me. So I was lucky to be able to say "I would not be available for  12 weeks"…but seriously, I have been working a day or two a week, and feel ready to work more.   That was a very pleasant and welcome surprise.

This is nothing like the Interferon/Riboviren nightmare..I only lasted 2 months, and it took another 6 weeks for my bone marrow to recover.   In comparrison, this is a walk in the park.

I feel VERY lucky to be able to get the RX, my Dr went to bat for me, they refused it initally, but he wrote a letter and I got approved. I have only minimal fibrosis, no elevated Liver tests…just fatigue. I am so grateful he was able to get it approved. I probably had to wait about a month from first office visit to the package in the mail. My insurance is BC/BS..I hear one of the best. He did tell me that in two years he thinks all insurances will be approving  meds…I hope so. NO one should be denied, ever!!!

It seemed SO WRONG that the cirrhosis patients ONLY were getting approval.. who wants to go there if the cure is available to prevent that?

So today I got my blood drawn, PRAYING that the results show ZERO…no virus detected.  This past week I noticed that I am feeling more energetic, rested, and  perky than I have for years. And grateful, very,very thankful, as I know how bad it can be. I am a GI nurse and I worked with Hep C patients every day…soon I can tell them to have hope…the cure is HERE!!!

[waltgaffney]

Great news TN (can I call you TN ?) How's your diet and sleep ?  Those two seem to help a lot if they're somewhat normal. Walt  (also harvoni and ribavirin 5 weeks)

[traumanurse]

The first night i didn't sleep a wink!! I thought OH No! Insomnia! But on hindsight I think it was sheer excitement and joy! Most nights i sleep great…even better than before . I have always struggled a bit with difficulty sleeping…but now i find I can fall asleep easily, as i am tired!

I am VERY careful with my diet, all organic, Grass fed, homemade…I am brewing my own Kombucha and dumping gluten. I just finished "Grain Brain" by Dr Perlmutter. ..and I know he is spot on. I have made my own observations after 40 years in in the medical field and I honesty believe that we would have enough money in the healthcare system if people ate real food, no processed or fast food and 1/10 the sugar they eat now. But i have been saying that for years!! LOL …

And i believe that i have remained so healthy because I have taken the best care i can….yes an occasional glass of red wine, but  I eat well.

Yes you can call me TN! Are you on treatment also?

[Morphin]

Hi TN,

First off,


Thanks for all you do/did for us sickies!! 

Congrats on feeling better, that is so AWESOME!  And very inspiring and exciting.

I started Harvoni 3 days ago, have been feeling noticeably better already - more energy, more alert, overall just feeling more well and thought it was all in my mind due to the fact that I was doing something positive , but after reading your post, beginning to think that this is truly a Harvoni High/miracle!

After a frustrating experience getting my prescription, it is an indescribable experience to actually being able to take steps to finally combat Hep C.

So far, like you, have had very minimal headaches and no other side effects. I take Harvoni before going to bed and the headache appears first thing upon waking, but a morning drink of water takes care of it.  The rest of day just feels so much more productive and well, quite frankly, full of life.

Good luck on your blood draw!  Sending positive vibes that the results bring you the news you want! 

[Anchor]

Excellent news! Glad to hear you are doing so well!

[waltgaffney]

Yes TN your upbeat attitude and positive outlook is an inspiration to all. Keep up the good fight. Walt

[jenna121215]

that sounds like great news TN!! your doctor sounds like he really cares, it's awesome to hear how proactive he was-- does he happen to be in the ny/nj area?

[traumanurse]

Thank you every one..is good to finally be able to talk about it…can you believe I was in the closet about this for over 30 years…so afraid of the stigma. Ashamed to tell co-workers or friends. Anyway, hope to be an advocate soon. A  NOISY one.

 I will share my first opportunity!!! I called Ocupational Health Department  to get my Hep A vaccine, because my DR advised it. Of course as a health care worker I have titers for Hep B from my previous vaccinations, but not Hep A. All of us with Hep C  should be vaccinated for Hep A and B, as we have compromised livers and these diseases could be lethal to us. I ASSUMED that the hospital would provide that free of charge like they do for Hep B…and they FORCE us to get the Flu vaccine every year…or we are fired. Ok, the flu vaccine was 9% efective this year and the Hep A vaccine is 99% effective.

 Can you believe they REFUSED to give it to me free…it would cost me $90!! Apparently only Somora Quest (LAB)  off campus people get it free because they handle specimens.  HA!!!!! WHO COLLECTS SPECIMENS ON A DAILY BASIS?  We do pediatrics also so WHO CHANGES DIAPERS ON 3RD WORLD BABIES, fresh  from across the border?? I work in a GI LAB…My first thought was "ARE YOU KIDDING ME?? My second thought was "hell no, I put my life on the line every day I work for you-which was in my case 25 years- and you WILL make my work environment as safe as you can.

So I made a HUGE stink, and now they are making that $8 dollar vaccine (x 2) available to me, and when I am finished I hope to make sure that every health care worker in our system who wants it can get it too. I don't care what the CDC recommendations are for the USA. In Australia all health care workers get it….for me personally it could be a life or death issue.

It was NOT about the money,but the principle…maybe in America Hep A  is "almost eradicated", but we take care of a LOT of immigrants from countries that still have  outbreaks. I have been quiet too long…

No Jenna,  I live in the SW…and worked with this Dr for 8 years before I had the courage to come forward.  He is a liver specialist, and during endoscopies and endoscopic ultrasounds we diagnosed a LOT of liver cancer, cirrhosis complications and esophogeal varices from Hep C  over the years.  That scared the -you know what- out of me….

 I knew Harvoni was approved in October, but I figured I would wait a few months for the dust to settle, and see what insurance companies were going to do. And yes he was my advocate, I have thanked him so many times…he really went the extra mile, and I am forever grateful. FREE for the first time in 3o years!!!

[waltgaffney]

Hey TN, I was concerned with HEP-C infection of my CNS and how it would react to the Harvoni. Any feedback ? Walt

[traumanurse]

Nothing in the literature that I have read about Harvoni, Walt ----and nothing personally.  I am so glad that we FINALLY have antiviral drugs out there now with minimal side effects…

However, after reading Grain Brain, by Dr Perlmutter the CNS effects of gluten astound me. He sites study after study after study about the effects of Gluten and the brain. IMHO…recommended reading for anyone who desires to get healthier

[traumanurse]

Walt-also I see that you are on Ribovirin…that was a rough med for me. I remember  that they INSISTED I start an antidepressant- when I started that peg and ribo.  I was in a double blind research study for Telapriver, (turned out I got the placebo)-so  actually was just conventional therapy.

 But that Ribovirin dropped  ALL my blood counts WAY LOW..and because it was a research study I could not get the shots to help the bone marrow get back to work. My stomach felt like I swallowed glass shards and I lost 10 lbs in 2 months…I was nauseated 24/7.  Insomnia, fatigue…UGH

Of the two drugs you are on, the Ribo is the one with more side effects.. That was the sickest I ever felt in my entire life, and it took 2 months to get back to baseline…BUT I would do it again WITH Harvoni, because the timeframe is shorter, and the cure rate is 99-100%, instead of the old dismal 52 weeks and 65% cure.
Just gotta hang in there…one day at a time. 24 weeks, I assume. There is a light at the end of your tunnel!!!

[waltgaffney]

Yea TN, When I started treatment 5 weeks ago I was doing 1200 MG's of the Ribavirin per day and after the first blood panel they dropped me to 800. I was like one of those zombies on the walking dead. ( tired but still wanting to rip some ones head off ), something about a build up on my red blood cells causing anemia. It's a little heady trying to understand this stuff not having any medical background but all the reading I do makes me tired and helps me to sleep. LOL Thanks for the listen TN Have a great night. Walt