Hep C Discussion Forum

wendyo · Guru

RE: Anxiety About Starting Harvoni

JimmyK · Guru

Liz you have a family here, and you ARE our sister now.

JimmyK

nightowl · Member

Gosh ... I just logged in tonight to check my post and recieved all of your amazing messages. I feel completely overwhelmed that so many people ... in different parts of the world ... would take the time to read my post and reply to it. I have been sobbing all night ... with gratitude for your kindness and generosity, and relief that I don't feel so alone any more. It's late here in Sydney (1am) so I will reply to you all properly tomorrow ... but I just had to quickly post now to say thank you ... THANK YOU ... from the bottom of my heart. This is exactly where I need to be and I am so so glad I found this group. We have been having wild weather here and my apartment flooded today. My first thought was "oh well, better put off the Harvoni for another week" ... then I imagined all of your responses to that idea!!! ... so it looks like I'm already internalizing the collective group voice here :) With any luck I'll things will settle down and I'll be boarding that train either Wed or Fri. I hope I have the courage to do this. Thanks so much for your kindness and care! Liz

Shadowfax · Guru

Hi Nightowl,

Welcome to the forum and glad you found it! Please believe what everybody has said here

I had much anxiety about taking any medications and I just finished 12 weeks or Harvoni one month ago. I expected the worst (that is my nature and hoped for the best) I knew I had to take it and when the day came as a surprise to myself I did not look at the pill for 7 hours, I picked it up and swallowed it because I knew I had to.

I sad down on my chair and waited for the side fx to kick in... one hour, two, three, hmm.. nothing yet so lets do a few things.

In a nutshell it is so well tolerated and if you have anxiety you probably fear those types of side effects. I had some mild headache on some mornings, possibly 30% that went away after I hydrated and ate breakfast. To tell you how mild it was, I never once even took an aspirin because I never needed it during treatment. There were a few days I was tired buy hey, there have been hundreds of days I felt like that in all the years leading up to this.

Don't over think it. It will help and the worst thing to do is not take it and you will see that from so many peoples responses here and the other threads that are dedicated to Harvoni.

I know it's easier said than done, it was for me as well but just walk up to the bottle, take the pill and swallow it and drink a nice bottle or large glass of water. We all know when you do, you will be posting here saying "Hey, you were all right and now I am on my way to getting rid of this terrible virus"

Be well, take care and hope to see you here soon

Cheers.

Canuck · Guru

Hi nightowl,

A warm welcome from me, I am glad you are here.

You express yourself wonderfully.

You are having a good and important conversation with yourself right now, and with your doc and your psychologist and with us.

It is a good thing to think "out loud" and it is our privilege to be here to echo back thinking - the outer conversations will only help with the inner conversations you have going on. They WILL blend, meld a bit, bounce back and forth, creep in, or echo back at you, you will streamline your own inner conversation, you ARE solidifying your conversation into action, just as I imagine you have done so many times before. Your inner conversation is just about finished and you WILL be able to move on. You are already "saying" this in so many "words", you already know that there is safety in the pills, and it WILL become an easy decision and a HUGE reward for you.

I am excited for you, not only in that you are luckily soon to be rid of your hepc, but that you will get to experience the added bonus of gaining strength just from this conquering of another obstacle that impedes the direction you strive for. It will be nice to see you experience this.

I like it that you have tucked that prized bottle in a "cool, dark corner", sounds a very apt lovely spot for this - your remedy is ready for you, when you are ready, from it's safe quiet calm protective hidi-hole, it is your stored relief and reward, your life-line, soon to be relished and appreciated. I think, perhaps they will prove themselves far more savory than cheese. Perhaps consider them as comforting and nurturing as "mother in a bottle"!

I had trouble as a child in obtaining milestones, markers that other people seemed to commonly experience which helped them with their confidence and direction in later life - you know, stories ... learning to ride a bike, learning how to swim, overcoming the fear of jumping in, etc., etc., the simple memorable positive childhood achievements that help shape a person's life-thinking early on - my lack of it resulted in me having difficulties - I had some psychologically "narrowing impediments" early in life. But thank goodness for me, one nice thing is that you are NEVER too old to gain these important milestones, and further, it did not really matter much in the end at what age they happened for me, I did some of my best growing and learning only this past decade or so!

You will reap much when you "enter in" to start taking the pills, and when you become cured, and with your long and better life, come the opportunities to milestone now, during treatment and long into the future.

You are soon to gain some really nice positive comfort. smile C.

-- Edited by Canuck on Sunday 5th of June 2016 05:05:20 AM

K8 · Member

hi Liz,

Welcome, talking about treatment here certainly helps. I was terrified of starting treatment also. I cried the first few I took medication and when I found out that i had to take RIBA again. I did the Interferon/Riba in 2007 and all I could remember was how hard it was.

I guess it is human nature to base my current experience on previous experiences.

It was easier to start the meds & finally get over the anxiety of staring the meds! My friends who took Harvoni did really well. I felt badly that I was so tired and anxious but folks on the forum had experience. (I am on Solvadi with Ribaviran). I still get a bit anxious when I have to take the riba at night. I take each pill very consciously and think of the millions of people in the world who will never have this luxury of treatment
I take the medicine for my friends who are no longer here and wish they could have taken a treatment like this for cancer, etc

And lastly, I take the 3rd pill for myself to affirm healing and energy.
Yes, I have a bit of a ceremony each evening, it helps and I am 1/2 way thru. Lots of water is helping quite a bit plus my friends say I am "glowing" ( so the upside of tons of water).

Keeping you in good thoughts and peace, the longest journey begins with the first step......here we go

K8

65 yr female.Gt 2 B. Contracted Hep C approx 71,

tested 2007 - vl 10mil RIBA/PEGI in 2007 6 months, undetected EOT, VL 600,00 in 2008

tested in Feb,2016 VL less than 2 mil, SOT 4/25/16 SOL/RIBA for 3 months

Pablito · Senior Member

Also, if the taking the pill in the doctor's office thing doesn't work why don't you ask your friend who recently completed a course of Harvoni to come around and spend the day with you and part of the day is that you agree to take the 1st pill with him/her there to support you through the rest of the day.

Linuxter · Guru

Hi Liz,

Welcome, it's good to see you post ... we're glad to hear from you.

I wanted to give you another thread to look through since Dawn had a similar, very real fear of taking her HCV meds.

http://hepcfriends.activeboard.com/t62038771/starting-viekira-pak-and-ribavirin-in-the-next-two-days/?sort=newestFirst&page=3#comment-62038771

Dawn was on a different regimen but the fear and overcoming that fear was VERY similar. Please read through the thread and note how things changed for her once she started taking it. Note: As mentioned these are different meds than you will be taking. Harvoni alone is much easier to tolerate (very few if any side effects) where the meds Dawn is taking do have a few side effects ... it's the overcoming of her fear that make it similar and makes this an interesting thread to follow.

Not to worry, you'll do just fine, I get anxieties too at times (I think mine are due to low serotonin levels), I've found yoga and controlled breathing help a lot. I think the reason it helps is because it puts me in control of my body, my feelings, my perceptions.

Please know that we will be here every step of the way, we'll help get you through this and on to SVR.

As others have mentioned, it's the HCV that we need to fear, the Dragon is silent and stealthy, we rarely even know he's there, but he can do a lot of damage ... he's the one we should fear. The Dragon is sneaky, he doesn't want you to take the meds ... show him who's boss and take charge ... you can do this Liz ... and we will be right here the whole journey. smile

Wishing you well,

Dave

-- Edited by Linuxter on Saturday 4th of June 2016 02:45:56 PM

Pablito · Senior Member

Hi Liz

Welcome to the forum. I can certainly relate to your concerns. I too suffer from depression and anxiety. Further, having been through interferon/ribavirin I couldn't get my head around HCV without major side effects.

There's no absolute guarantee that you won't get side-effects but you almost certainly will follow the average, which is some very mild side-effects.

I'm just coming to the end of an 8 week course of meds very similar to Harvoni and all I had side-effects-wise was some flu-like symptoms for the first 3 or 4 days. And after that nothing. In fact, real flu would have been 10 times worse than the side-effects I experienced.

And here's the thing: my mood, thinking and levels of anxiety have improved no end; so much so that I've concluded that HCV was contributing significantly to these problems. It wasn't the entire cause, for sure, but it was adding some 30% to the problem.

You've got a PhD in psychology so use some CBT and behavioural techniques on yourself to get you to overcome this block.

Pablo

-- Edited by Pablito on Saturday 4th of June 2016 02:39:05 PM

Tig · Admin

Hi Liz,

Welcome to the forum! I'm happy to hear you've been following the forum for awhile and have a good idea of the journey ahead. It's not a treatment to fear. These new medications, especially those without Ribavirin present almost nothing in the way of side effects. As mentioned, your best friend during treatment is hydration. It makes all the difference in the world. With proper hydration, it's smooth sailing, without it, you can experience increased issues, like headaches and fatigue. These drugs demand more in the way of fluids and a simple increase in water intake can reduce or eliminate the side effects.

We all feel some pre treatment jitters, it's natural. Try to not let the fear immobilize you, turn it into a force to get you started and across the finish line. You'll discover very quickly that the hardest part of this is remembering to take the pill. Of course we've got several ways to help you do that too!

If we can offer you any advice or assistance, please feel free to ask. I want to point out our search function at the top center of each page. If you use a keyword or two, it will provide you with discussions we've had here on the subject. Enter "Fear" into it and there you'll see that you aren't alone. People are always apprehensive, but soon find ways to embrace the fear and use it as a platform to jump right in! Let us be your flotation device...

wendyo · Guru

Hi Liz,

A double jaw reconstruction? This will be a walk in the park compared to that.

Please read the link Jimmy sent as there was a fellow traveler on this journey going through the same thing. I think you will find it beneficial.

I did Harvoni for 12 weeks and it was quite tolerable. The key is to keep hydrated. And we have all kinds of great suggestions besides plain ole water....putting fruit in the water, infuser bottles and smoothies.

FEAR stands for false evidence appearing real or F everything and run. PLEASE walk thru your fear, try to get out of your head and start this journey so that you can be free of this disease. You deserve it.

wendy

JimmyK · Guru

Hello Liz, welcome to the Family here.

There are several folks here that went through the same anxiety with regard to starting treatment with Harvoni.

http://hepcfriends.activeboard.com/t61865391/harvoni/

The above link if to one of our brothers here, Mike. He finally after much distress started treatment, 05/11/16 and he is doing fine. Go ahead and read through his and know you are not alone, we understand, and will help to support you.

My wife just finished 12 weeks 8 days ago and she also was very VERY scared to start. Once she did she could not believe how extremely simple treatment was and how fast 12 weeks went by. The only concern is keeping proper hydration throughout treatment. Do that and there is absolutely nothing to fear.

I am on day 51 as of this writing and I have another 117 days to go due to the fact my protocol calls for 24 weeks of Harvoni.

My side affects consist of... well.... nothing. Zip, NADA. This treatment option is absolutely the best out there and if you stay hydrated you won't know you are on it other than the fact of how proud you are to have started.

You already know the "side affects" of Hep-C. Fear those, not this.

We will be here for you no worries. Use this place and you will be amazed how quickly 8 weeks will pass.

Regards

JimmyK

-- Edited by JimmyK on Saturday 4th of June 2016 09:52:37 AM

nightowl · Member

Hi everyone. I have been lurking these message boards for a few months now as I wait to begin my eight weeks of treatment on Harvoni. You all seem like lovely folk and I could sure use some emotional support right now as I'm a bit of a mess. I picked up my bottle of Harvoni two days ago, and it is sitting ... unopened ... in a cool, dark cupboard in the corner of my room. My problem is that I am too scared to take it as I am COMPLETELY TERRIFIED of side-effects! I am already prone to anxiety and depression, and I have worked hard in my life to get myself to a point where I cope reasonably well with life. In my teens I was completely agoraphobic and housebound. Since then I have worked hard to recover, did a PhD in psychology and I live alone and function quite well in the world. My fear is that we know so little about these new drugs and that taking it might result in a setback for me in terms of my anxiety symptoms and ruin my life. In addition, I have a phobia of taking new medication - all medication - from vitamin tablets to antibiotics, painkillers and anything in between. If I have a chest infection, I will wait until I am on deaths door before swallowing a new antibiotic, and that will only happen after staring at the box for a day and working myself into a bit of a mess. However, my other fear (which is equally strong) is that - having lived with HCV for almost 30 years now - that I may be close to becoming ill and eventually losing my life to this virus. Thus I am in this impossible bind - I must overcome the fear of the drug, or place my health in serious danger. My gastroenterologist assures me there are absolutely NO side-effects other than a little nausea, headache and insomnia, that serious side-effects are rare, and that I would be completely MAD not to take the treatment. He is very pro-treatment because he wants me to be well. I so desperately want to be well too! My rational side knows he is right, but my fear is overwhelming sometimes. My psychologist believes I can get through this as I recently went through a double jaw reconstruction six months ago and managed to survive that! Perhaps I underestimate my resilience ... I'm not sure? Is there anyone else here with a history of anxiety that has successfully made it through treatment? Does anyone have any suggestions for how to approach this ... I would so love to be brave and be able to join you all on this journey, and not spend the rest of my life worrying about my health and feeling too anxious to take the next step. A friend of mine who has taken Harvoni said he had no problems and that the doctors are treating like a simple course of antibiotics. My gastroenterologist has even offered for me to take my first tablet next Wednesday in his office, so that he is there if I don't handle it well (he's lovely). I know I will work up the courage to take it eventually, but any positive reinforcement or support would be so greatly appreciated. My apologies for the long post. On a lighter note, I told a friend I was about to start taking Harvoni and he asked me if Harvoni was a cheese (I am part-Italian).

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