POSITIVE EXPERIENCES??

[Llorona]

Hello everyone,
First time poster, long time lurker here,
I am going into month two of my three month Harvoni treatment.
So far, my experience has been pretty darn good.
The first couple of weeks, I noticed that I was having a bit of a harder time falling asleep and staying asleep. I also noticed that I was having night sweats and would get dizzy when standing up quickly.
However, right around this same time, the pollen and mold count in my city were through the roof. Also, I started my period around this time. I think some of my symptoms were caused, or compounded, by allergies and/or PMS.
I really do believe that, oftentimes, there are other reasons for the way we are feeling and we are far too quick to blame the med.
I know that, when I was a heroin addict, I used to constantly blame every ache and pain and sniffle on "dope sickness" when that probably wasn't necessarily the case.

After that 1st or 2nd week, the night sweats, slight dizziness, and mild insomnia disappeared. Maybe some of those things were a result of the med, maybe not.
However, I have had zero side effects since (and even those brief side effects were completely tolerable).

I actually had to stop reading this forum, and others, for awhile because I seemed to be coming across horror story after horror story. Stories of people developing severe, treatment related arthritis and migraines that never went away post treatment. Stories of extreme fatigue that never let up, even months after treatment. Stories of people's lives being "destroyed" by the treatment and of loved ones dying of liver cancer after treatment. People were even talking about class action lawsuits against Gilead.
I absolutely feel that it is necessary to share our experiences, particularly with how new this medicine is, and I understand that not all of our experiences are going to be the same, but reading these things really freaked me out.. And I was hard pressed to find the happy endings (yes, I found threads where people talked of clearing the virus, but even those people seemed to be dealing with all sorts of long term side effects of the treatment).

I began to wonder if starting treatment had been a huge mistake. I began to wonder if I should have "waited for a better med to come along" as so many people lamented they'd wished they'd done..

But then I started wondering if maybe it's just that the people with less than stellar experiences are more likely to share said experiences than those of us who have had fairly great experiences and have moved on with our lives.

So I am here to share my (so far) positive experience...
I feel that I have more energy now. My loved ones all tell me that I'm glowing. I sleep 8 hours a night, my digestive system seems to be working better than it has in years. I am planning for my future in a way that I haven't in a long time and I feel less depressed than I did before. Maybe this is a psychosomatic result of knowing that I may finally be rid of this virus once and for all, or maybe it really is the result of my treatment. Point, is, things are good so far. Maybe I'll be singing a different tune when all is said and done, but so far, so good.

Here is my regimen that has seemed to keep side effects 100% at bay. Maybe it will help you, too:

In the morning I wake up and I make a smoothie with two bananas, a handful of blackberries, a handful of blueberries, a handful of strawberries, and some water. I drink my smoothie and then I take my pill.

Next, I drink 24 oz of water. I continue to drink water throughout the day. I have a mason jar with measurements on the side. One mason jar is equal to three 8oz glasses. By the end of my day, I have had 4 of these mason jars of water (that means I am drinking 12 8oz glasses of water a day!). I can feel a difference when i skimp on the water, even by a couple of glasses.

I take a b12 supplement every day (my doctor said this is fine and I've actually read that b12 may help the efficacy of Hep C treatment).

I usually have a couple of vegan pupsas for lunch (they are organic black bean and corn pupsas that you can find in the frozen food aisle).

For dinner, I always cook something vegan at home. I'll make rice with steamed veggies. The veggies are really inexpensive if you buy them frozen. Or I'll make a pot of lentils seasoned with Cajun seasonings and eat them with tortillas. The lentils can be purchased from the bulk food aisle. Just one cup of lentils is enough for about 3 servings. Sometimes I'll just make a huge, fresh salad with slivered almonds and strawberries on top.
For an evening snack, I'll usually have a bowl of Muesli cereal with cashew milk. I also usually drink a cup of decaf green tea before bed.
Keep in mind, all the while, I am drinking more water. If I get tired of the water, I'll squeeze a lime into it and that makes it a million times more tolerable.
Water is all I drink. I don't drink soda or juices.
I'm not a teetotaler and I will have the occasional kettle corn popcorn or cookies or maybe a biscuit drizzled in vegan butter , but for the most part, I think I eat a little more healthily than the average American. I do not eat fast food and I do not eat meat or seafood or dairy. I do not drink alcohol.
I do smoke about 3 cigarettes a day, which I know is really terrible. I also haven't been exercising at all because it's been 105 degrees where I live, so I've been pretty sedentary, which I know is also terrible. I could definitely afford to lose 20+ pounds.

At night I listen to ASMR whisper videos with my headphones in bed. If you don't know about ASMR, look it up. I def recommend it if you have anxiety or just general trouble falling asleep..My favorite is Gentle Whisperings ASMR on Youtube.

And that is all I do. Pretty simple. I haven't had to take any pain medication and I am not experiencing any of the side effects I keep reading about.
I am still relatively young though. I'll be turning 36 in three months.
I have had Hep C for about 13 years. I have genotype 1a and I contracted it through intravenous drug use.
I was a heroin addict for 10 years.
My viral load when I started treatment was 245,000. I am still waiting on the results of my first month's test. The ultrasound did show fatty liver, but no cirrhosis or fibrosis. I was not given a biopsy.

I would love to hear about other people's successes and positive experiences. Beginning treatment can be daunting and I know I can't be the only one who gets freaked out reading all of the scary stories out there. I feel like I'm one in a million as far as my positive experience is concerned and I know that can't be true.

Thanks for listening!

[Llorona]

Forgot to mention that I also have a cup of coffee with vegan/non dairy milk after my smoothie and my pill. I usually use cashew milk or a sweet, vanilla milk made out of peas that I've just discovered and I love. I know "pea milk" doesn't sound appetizing, but it is so delicious (only if you get the vanilla kind. the plain kind is gross in my opinion). The brand is called Ripple and it tastes like ice cream. I know sugar isn't good, but it beats heavy cream with a ton of sugar! Anyway, thought I'd throw that in. I know lots of us love our coffee!

[gnatcatcher]

. . .But then I started wondering if maybe it's just that the people with less than stellar experiences are more likely to share said experiences than those of us who have had fairly great experiences and have moved on with our lives. . . .

That's generally the case with forums like these. Sorry you found mostly the scary stuff.

Welcome, Llorona, and kudos for doing so many healthy things for yourself.

So many of us had extra energy while taking Harvoni that we nicknamed it the "Harvoni High."

I'm now more than 22 months past the end of treatment. My liver is definitely much healthier, as measured by lab tests and FibroScans. My energy level, while not as high as during treatment, is higher than before Harvoni. I've got an assortment of aches and pains, but they are certainly no worse than before treatment, and I'm a senior citizen who is not getting any younger.

Thank you for sharing your many tips. I have only a few.
Exercise in the heat: A person can still get a lot of brisk walking done inside the house or apartment (if it has A/C) or a mall, and plenty of buildings with A/C have stairs a person can trot up & down looking purposeful.
Satisfying the sweet tooth: Substituting a smaller amount of genuine maple syrup or honey for a larger amount of sugar may satisfy you. I have come to prefer several recipes changed over to maple syrup, and I use less and less of it as time goes on.

Congratulations on surviving heroin. I look forward to congratulating you again when you're cured of HCV.

Gnatty

[Llorona]

Hi there, gnatcatcher, thanks for reaching out! I've read many of your comments throughout this forum . You have always been so positive and helpful to people.

I started playing played softball as a child and played all the way up through high school. I was a catcher, which required playing with some fairly heavy and cumbersome catcher's equipment on. It could get pretty brutal in July and August, especially when playing double headers (two games back to back), so you'd think I'd be less of a baby about exercising in the summer. Really, I think I'm just making excuses.
All that said, getting outside in Texas summers now that they are so much worse (yay, global warming!), and now that I'm a little bit older, is just so dang stifling.
I definitely don't get outside much at all between the months of June and September or so.

My little two bedroom duplex is too small to get a whole lot of steps in while walking to and fro, but you're absolutely right, that's no excuse at all not to find a corner of my living room to do a few minutes of cardio everyday, or to find an air conditioned building with stairs. I'm just being a whiner and I need to step it up.
I've seen my doctor twice since starting Harvoni and have gained 3 pounds between each visit, for a total of 6 pounds. I'm not SUPER tall (5'5") so I'm sure 6 pounds shows.

I try not to eat much sugar, but that sweetened non dairy milk that I mentioned in my original post (what I put in my coffee), while high fructose free, does have 25grams of sugar for every 8oz, which is pretty terrible. Vegans don't eat honey, but maple syrup is definitely an option. I used to use it in my oatmeal, but I haven't eaten oatmeal in a while. I wonder if it would taste good in coffee? Maybe I can just get used to coffee with no sweetener at all.

The veganism is something I got into about 2 years ago for ethical reasons, but I really do think it may possibly be helping in terms of keeping the Harvoni side effects at bay. Really though, I think the insane amount of water I drink is the real key.
I did completely forget to mention that I think I may be having one side effect: I've been breaking out a bit. I haven't changed my face wash or moisturizer or laundry detergent, so I don't think it's any of those things. I wash my face every morning and night and I wash my sheets and pillowcases often. While I've had the occasional breakout in the past, this is something totally new. So, I guess acne may be a side effect, but I'll take breaking out over having Hep C any day. I wonder if it's my body purging itself of toxins or something? It didn't seem to start happening until I'd been on the medication for a few weeks.

I had one woman (in a different forum) insist that the terrible and debilitating permanent effects of Harvoni didn't start for her until after she completed treatment. That was pretty scary to hear. When I asked if she thought that maybe she had those problems because of her age or other factors, she insisted that people even younger and healthier than I were all having the same issues as her. She said that people should just wait for better medications to come on the market. That is the point at which I just stopped reading stuff online.

I think I would have put off treatment for another 10 years if my mother had not pushed me into it. She was diagnosed with stage 4 breast cancer nine months ago and she told me that the one thing she wanted me to do before she dies was to try to clear this virus. My mom is a social worker (She's pretty incredible. She's still working full time in spite of being 69 and having cancer pretty much everywhere in her body), and she helped get me into a program where I am now getting my medication for free. It is a program that the current administration is trying very hard to do away with, so I've been told I got in just in the nick of time.

Anyway, sorry to talk your ear off. Thanks again for welcoming me and thank you for all you do here!

-Christina

[andrew j]

I think your mum was absolutely right, Christina.

Many of us were in a bad place health-wise with Hep C, and so had no hesitation in going for the new treatments.
They are relatively new treatments, however - and I don't think a lot is really known about the way they work yet ...

This is a support forum (as well as being a place for the sharing and dissemination of information) - so I guess it's not surprising that those experiencing difficulties would come here.
Like Gnat - I'm a bit older than you - and some of us around or older than 60 have had, or had the virus for so long it created, or exacerbated other conditions.
People want and need to share what they are going through - so yes - there are perhaps a disproportionate number of posts here expressing or discussing health concerns.

Skin irritations / acne etc. are a known side-effect of Harvoni.

Best wishes - and best of luck with the rest of yr. treatment!

A.

[gnatcatcher]

Christina, it sounds like you have an amazing mom. Cancer takes on some of the nicest people. I'm sorry she, and you, have that to deal with.

And then zits get thrown into the equation   I started to have a smattering of 'em (I forget if they appeared when I was on Harvoni or only after) -- I thought I had entered my second adolescence, in which case I'm already into my second childhood, because the acne phase seems pretty much over now

Andrew has a good point about HCV creating or exacerbating other conditions, a fact called extrahepatic manifestations (EHMs) of HCV. That's another area the experts are only in the early stages of understanding. What are/aren't Harvoni side effects is another largely gray area.

I did spend one summer in Arizona, where a heat wave kept the temperature up in the high one-teens for a stretch. Even though spouse and I were young then, it was brutal. We'd rented a place with A/C, not knowing that in that climate, having A/C meant living in a perpetual sauna and what we needed was called refrigeration. I realize that your even getting to a cool building with stairs can mean running the gauntlet. All these decades later, I remember needing to use oven mitts to touch the steering wheel when I got into the car.

I gained weight on Harvoni, because along with the Harvoni High came a voracious appetite. Then when treatment was over and much of the extra energy went away but the voracious appetite stuck around, I gained even a few more pounds before I realized what was happening. Summon your willpower now if you can.

Since you mentioned oatmeal, if you have an hour to spare on the weekend, making up a week's worth out of steel cut oat groats so that you can just microwave some the other six days of the week is the tastiest and healthiest way I've found. Cooked in just water, it's vegan. Adding some cinnamon and/or maple syrup for flavor (plus any berries you have around, and/or seeds -- the variations are endless) makes for a tasty, filling dish that provides healthy fiber and energy.

I enjoy your sharing and hope you continue to find this a comfy place. Looking forward to when you report your first undetected lab result.

Gnatty

[FutureThinker]

Posts: 706
Onward and upward!
 
 
Hi Llorona and welcome to the forum!!  I imagine you've come across some of my posts, I was pretty active on this wonderful forum while on Harvoni treatment.  I wanted to share a post of mine recently that I think will lead us, eventually, to why some people do very well on DAAs and others have a bad time.  We have to remember we are all individuals, w/ very different genetic makeups and life experiences that contribute to how we respond to medications.  The post below was placed in the HCV Research category if you can't access it from here.

Sounds like you are on your path to a bright future!!  All the best, FT


Maybe some answers are coming re: HCV drugs
« on: June 29, 2017, 10:55:38 AM »

Quote
http://www.nbcnews.com/health/health-news/your-medication-helping-or-hurting-dna-tests-may-be-guide-n777836

Wanted to share this story from the news last night about the new field of pharmacogenomics.  Lucinda has mentioned this research in other posts as to why some of us respond so well to HCV treatment and others do not.

[Llorona]

Hi, Future Thinker.
Thanks for the article! I really hope that sometime in the near future they are able to determine correct dosages that are catered to each individual.
It seems pretty crazy that there is a one size fits all treatment for those of us with Hep C.
I know that treatments can be tweaked to a certain extent (adding Ribavirin, for instance), but it does seem pretty crazy that we are all given the same dosage for more or less the same amount of time.
The old adage about the treatment being worse than the disease is oftentimes pretty accurate.
For example, my mother was receiving treatment for her cancer and they found that the treatment was causing heart failure and all kinds of other problems she'd never had prior to starting treatment. So, they took her off of the treatment until her heart could get strong again and then they put her back on the treatment. All they can do now is watch her heart and hope it continues to function at a reasonable level.
Meanwhile, there were weeks where she was receiving no treatment at all and she felt better than she had in a long time. It was nice to see her feeling so good, but we all held our breath waiting for the cancer to come back stronger than ever. So far, news has been (relatively). She's back on the treatment, which makes her feel not that great, but it's the only thing keeping the cancer from growing. She was given a 2 year life expectancy (tops) and that was 9 months ago, so that is always hanging over our heads.
The whole experience has taught me that 1) no one can predict the future 2) doctors are only human and they're not all necessarily brilliant 3) everyone responds to illnesses, as well as treatments, differently.
The doctors are pretty shocked that my mother is up and moving, much less still driving her car and working full time.
When she was diagnosed 9 months ago, they found cancer in her breast, clavicle, lymph nodes, ribs, leg bones, vertebrae, spine's bone marrow, and, most terrifyingly, her brain.
They immediately checked her into the ER and then into the palliative/hospice ward. They said she'd been one wrong move away from paralysis because the tumors in her spine were about to sever her vertebrae. A couple of weeks before she got this news, she'd been rear ended and I shudder to think what would have happened had she been hit harder.
When we saw her scans and all the cancer, my sister and stepfather and I thought she had only a couple of months left, at most. From the looks on the doctors' faces, I imagine they did, too.
But, here she is, 9 months later.
I'd consider myself to be atheist, maybe agnostic, but I now believe that our bodies abilities to keep on going is nothing short of miraculous.

[Llorona]

Hi Gnatty!
Man! You're no kidding! That Arizona heat is bad, too. My sister lives in Tucson. Everyone says that it's a "dry heat", but 100+ degrees is pretty terrible, no matter the moisture content haha.
The steering wheel is definitely a problem. I have to ever so delicately use the very tips of my fingers to steer until it cools down. Oven mitts aren't a bad idea.
I will definitely try that with the oats!

-Christina

[Llorona]

Hi, Andrew J.
You're absolutely right, the best way to work out the kinks with a new medication is for people to vocal about their experiences. I suppose I just wanted to start a thread for people to share some of their positive experiences, only because I'd read some pretty scary stuff online and, when I asked one woman if perhaps the treatment was only exacerbating pre existing issues for her, or if she thought it may have anything to do with age, etc, she became a bit abrasive.
So, I started  to think, "Geez, I wonder who else this person has terrified?" (It was in the comments section of an article about Harvoni, not here).
I'm still not out of the woods (only 1 month into a 3 month treatment), so who knows what could come up for me down the line.
I've only had the virus for (I think) approximately 13 to 16 years, so I know I've had it for a far shorter amount of time than many.
I was seriously considering Interferon when I was first diagnosed (13 years ago), but I held off hoping for something with fewer side effects.
It breaks my heart to think of those who have waited for a "miracle cure", only to take Harvoni and experience a terrible, adverse reaction.
I don't know why I don't have side effects (yet) other than the breakouts on my face. I don't know if it is my age or the relatively short amount of time I've had the virus, or if it's that I've felt so foggy and lethargic for so long that anything seems like a step up at this point.
I just hope that someone out there who is thinking of refusing treatment because they've encountered someone like that woman I met in the comments section of an article, who insisted that I would definitely have debilitating effects at some point down the line, no matter my age or health status, may find this thread and decide to give treatment a shot.
-Christina

[andrew j]

Hi Christina,

I don't think there's any need to fear something going wrong now.

It's unfortunate that these meds affect some people badly - but thankfully not many are affected this way, and the vast majority find Tx relatively straight-forward.

My Tx was like yours:

I was really unwell when I had Hep C - and I started feeling better almost immediately (like - within a couple of days!).
... It was like 'Thank you Lord!' (and still is, in a way) ...

... It was like lights slowly coming back on.

Amazing! ...

[Mugwump]

Like your handle! I play variations of that great old Mexican melody on classical guitar.

I am one of the ones who had little choice, either take a cure now or most likely progress to liver failure. My bilirubin was beginning to spike before treatment and there were signs that the virus was winning the battle eating what little was left of my liver. So for me the med could very well have been a life saver. As we know the *%(^&% disease HCV is a real PITA and it may very well have backed down for a while and left me a drooling idiot the way it has some who develop hepatic encephalopathy and advancing cirrhosis.

So as far as having more quality time tacked on to my 64 plus years so far I have to say I have had a positive experience.

Before treatment I was severely brain fogged to the point that I took myself off the road. I would drive anywhere and be distracted to the point where I was becoming a real road hazard. Since treatment the brain fog and loss of mental clarity is completely gone. I am working 10 hour shifts cooking for 80 seniors, before treatment in early 2015 I could not have kept my focus long enough to even think about working. HCV had put me out of work in 2012 and any job I tried I had to give up. I had lost interest in playing classical guitar because I could not concentrate long enough to learn new music off the paper.

Certainly I am no longer a spring chicken but at least what I have achieved by removing HCV from the equation is a much better quality of life than I would have had if I had waited and not taken Harvoni.

Cheers and I hope you find treatment as wonderful a renewal as I have!

Eric

[Lynn K]

Hi Christina and welcome!

I had hep c for 37 years and previously treated 3 times each time for 6 months with interferon based treatment back in the day (first round was in 1995) but to no avail I did not respond to treatment with no decrease in my viral load. Over the next 30 years of infection my liver damage eventually reach F4 (cirrhosis) on my 4th liver biopsy.

I next treated with Sovaldi and olysio for 12 weeks when those meds were newly approved but unfortunately I was found to have relapsed 12 weeks post treatment. One month after Harvoni was approved I started a 24 weeks treatment with that and we later added ribavirin for the remaining 15 weeks of my treatment.

I am now 26 months post Harvoni and am cured although I still have liver cirrhosis now for 9.5 years.

So that is my history. The interferon treatments were tough but I only took 2 weeks off from work due to anemia from the ribavirin. The new treatments for me were a walk in the park I had nothing in the way of sides except some anemia again from the ribavirin.

So no sides and no post treatment concerns. On the up side my doctor has said I can have upper endoscopies at 3 years instead of 1 year intervals now and except for a low (but now improved) platelet count all my tests are normal and I feel fine at 59 years old.

Good luck on treatment and wishing you good health

Lynn

[KY]

I am on day 19 of an 8 week treatment plan of Harvoni. So far, things are great. I take the pill in the morning after some oatmeal. This is followed by a lot of energy while I work out at a gym for about 40 minutes. In the afternoon I get really tired and need a nap. So far I have not had a headache. Every day I am thankful because I know I am getting healing from a virus I have had since ~1973. Right before I take each pill, I thank the Lord for healing and believe all is going as planned. Blessings to all.

[Llorona]

So great to hear of all these positive long term experiences! Can't even begin to tell you what it means!

Mugwump, thanks! I'm Latina (my mother is Mexican American) and I remember being so creeped out by the tale of La Llorona when I was a kid.
The song is beautiful. I love the version that is sung by Chavela Vargas.

Thanks you for sharing your stories with me Lynn, Andrew, and Mugwump!

KY, it's great to hear you're doing well so far. I'm going into week 6 and so far, so good. Keep it up!

[sapphire101]

Positivity + Gratitude LLorona!
Read my signature for my story.
Every day I wake up free and even if there are side effects they wont be transmitted to others. That is the huge weight off my shoulders. Any problems I have are my own.

This stuff works. You are supported here.
Stick with it because you got this.
Love to your mama she is one awesome advocate.