Hep C Discussion Forum

Tig · Admin

worried

Dee441325 · Member

Our laugh of the day:

Patient: It's been one month since my last visit and I still feel miserable.

Doctor: Did you follow the instructions on the medicine I gave you?

Patient: I sure did - the bottle said 'keep tightly closed.'

I started my first Harvoni today at 12:38 after lunch and a BIG prayer. I did not keep the lid closed tightly. I'm trusting God to get me through this.

It's now 7:36 and I feel good besides a few stings in the liver and my legs feel like I worked out. See I told you and told you I wasn't worried. HA HA HA

I'm hoping the 12 weeks are all like day one. ????????

bubble · Senior Member

Staying determined and educated is the main ingredient for beating the Dragon. Please stay in touch!

Dee441325 · Member

Beacon:

That's really good new all around. You're doing great! You've come a long way. WTG! I will be there someday soon. Thanks so much for the encouragement. Tomorrow is the first day of my new life without Hep C. Maybe I should wait to say that after the 12 weeks is over.

Have a great night and again thank you.

Dee

Beacon · Senior Member

Dee,
We all are afraid when we step into the unknown and the thought of HCV treatment can rattle the nerves of the best of us. But try not to worry too much as there is a good chance that you won't have any side effects whatsoever. Unlike the treatments of "old" which came with radical side effects, the new drugs can be gentle and I can testify to that because I had zero side effects during 12 wks of Harvoni tx. No headaches, no insomnia, no rashes, no nothing. There are many who have had some pretty strong side effects from Harvoni, but there is an equal chance you will feel little to no changes. The hardest thing for me was trying to figure out when to take the pills, evening or morning and remembering to take them period. I decided on 5pm daily without fail. This worked out great for me as taking the Harvoni pill became like taking an aspirin. Nothing....zip. In less than four wks my viral load was zero and now over 26 wks after the end of my treatment I still feel pretty good. I am in a hiking group of 20 to 30 year olds and we climb and hike 4 to 6 miles up some pretty tough terrain, but I can keep up at 64 years old. Good luck!

Dee441325 · Member

Thanks Fourlocos for the words of encouragement! That's the attitude you have to have to get through every day life with Hep C (just push through it, I like that). I'm going to adapt that into my way of thinking. Thanks!

Dee

fourlocos · Senior Member

Just wanted to wish you the best of luck on your journey. I never had insomnia from Harvoni. The opposite was true. I slept better than I ever will again in my life! I found it relaxed me and made me tired so taking it with dinner worked great for me. Everyone is different. You will find what works for you. And yes I agree that I think I missed one day of work. I had sides for sure but still pushed my way through life.

Dee441325 · Member

Thanks Penny!

Just to be able to go on Harvoni is a blessing in itself then to find this awesome group of people to go through this with, I could not ask for more.

Have a good night!

Dee

Penelope PePod · Senior Member

Welcome, Dee!

You've found a good place to be for going through treatment. Lots of folks here have been through what you're embarking on and lot's of folks are going through it right now. This is the most positive, knowledgeable, supportive group of people I've ever come across, and they've helped me so much. This place is safe and is such a blessing. You're in good hands here!

smile Penny

Dee441325 · Member

Hey Bubble!

Thanks so very much for your comment. I am looking forward to ridding my body of this toxin for good. It's been long over due! I'm very excited to start my new life without hep c. I'm so excited and I can't hide it (I'm singing).

Have a blessed and wonderful day!

Dee

bubble · Senior Member

Dee: I really admire your positive for a newbie. It will go by well and quick. On the train now. Boarrrrrrrrrrrrrrrd !!!!

Dee441325 · Member

Jill:

Thanks so much for your note. I have been reading that thread. It's very informative.

Have a great day!

Dee

Cinnamon Girl · Guru

Hi again, Denise,

I meant to say, we have thread especially for our members on Harvoni treatment, and it`s called the `Harvoni Treatment Train`. Here`s the link, I`m sure you`ll be made very welcome when you board the train and take your seat. smile

http://hepcfriends.activeboard.com/t58762824

Many of us here were also infected by Hep C for decades before we did our treatment, and like you I was about 60 years young when I started my treatment. And I must say I`m feeling even younger now since achieving my SVR!

This is your time, you`ll soon be on your way to being free from Hep C!

Groupergetter · Guru

Dee441325 wrote:
Cinnamon Girl:
Thanks so much for responding. I look forward to everyone's expertise in this area as I move along with treatment. I'm worried to a point (unknown) but more excited to rid this ugly virus forever! I've lived with this since I was in my late 20's and now I'm 60 years young.
Thanks again Cinnamon Girl! Have a great night.

Hi Dee,
"60 years young" liking the sound of that :) You'll do fine. I took my meds every morning as I got out of bed. Used a daily pill reminder and also marked it on the calendar to make sure I didn't miss a day. The time goes quickly, soon you'll be rid of this nasty virus. Welcome to the forum. Take care.

-- Edited by Groupergetter on Thursday 17th of September 2015 06:31:23 PM

Groupergetter · Guru

Keepa go Judy, your first lab results will put a huge smile to your face :) On the path to SVR.

judeahomestead · Member

Hi Dee, Well it certainly has not been as bad as I "assumed" it would be. I am on day five and am sleeping as sound as ever. No headaches or tiredness as long as I keep a glass of water in my hands! Water seems to be the answer to a lot of the side effects. I have started with a new concern as of yesterday, after I eat a meal and I do eat healthy, I am experiencing a lot of bloating with some pretty bad cramps. Have not heard of anyone else with this complaint so I may start a new thread to ask the community. But.....don't worry, I have not missed a day of work or any social plans. I think this is our answer and I am going full throttle ahead. Keep posting so we can keep up with each other on our journey. Love.

-- Edited by judeahomestead on Thursday 17th of September 2015 02:17:10 AM

wmlj1960 · Moderator

Dee441325 wrote:
Hello all:

I am a newbie to this site.

Well hello there Dee. You've already seen a taste of the helpful members we have and there is more at your disposal. If you see some abbreviations in members post and their signatures that you need a definition for see this thread and scroll down to the original post by mallani. Also, if you would like to create a signature of your own some help on doing that can be found in this thread. Notice the 'search' function that you can use to view previous threads on any particular subject you have questions about. If you don't find an answer that way then start a new thread on the subject.

I'm glad you'll be starting treatment Friday and don't be frightened. These new meds have minimal side effects for most of us and those who have already acheived SVR agree the result is well worth it. Staying well hydrated is proving to be very significant in reducing or even eliminating most side effect for those on treatment. For more about that click on this thread.

So make yourself at home and welcome to the forum! smile

Dee441325 · Member

Cinnamon Girl:

Thanks so much for responding. I look forward to everyone's expertise in this area as I move along with treatment. I'm worried to a point (unknown) but more excited to rid this ugly virus forever! I've lived with this since I was in my late 20's and now I'm 60 years young.

Thanks again Cinnamon Girl! Have a great night.

Cinnamon Girl · Guru

Hello Denise, welcome!

I know your questions were addressed to Judy, but I just wanted to say that not everyone takes their pills at night, some people find it suits them better to take it in the morning. The instructions in the Harvoni patient prescribing information just state that one pill is to be taken daily, with or without food, and if 10 am would suit you best then you should stick with that.

The side effects vary from person to person and not everyone experiences insomnia, although some do.

Very best of luck with your treatment, we`ll be happy to follow your progress and answer any questions you have. If you`d like to start your own new thread in this section then just click on `Start a New Topic` on the top right hand side of the comments.

Try not to be scared, we`re seeing so many people successfully clearing the virus with this treatment, with minimal side effects! smile

Dee441325 · Member

Hello all:

I am a newbie to this site. I've read a lot of the post and find myself scared right alone with you Judy. I realized after reading the discussions on here that I'm fearing the unknown. All the posts in this discussion group are very helpful! They have put my mind at rest.

Judy, your a week into your treatment now, how are you feeling? Are you able to continue with your work? Can you sleep? I have so many questions for you Judy. I begin my treatment (new life w/o Hep C) on Friday, September 18, 2015. I am very hopeful that this drug WILL work after living with this for over 30 year's.

I did notice that most people take their pill at night, why? I've read that you get insomnia from taking Harvoni, which I already have had for many year's so I thought I'd take it at 10:00 in the morning. Does anyone have any thoughts on that? I'm home alone in the morning so if I do get irritable I only have myself to get irritable with. LOL

I also wanted to say thank you to all people on here. I look forward to walking through this new beginning of my life with all of you by my side. Let's go get this 12 weeks over with and begin!

Take care all. I look forward to chatting with all of you.

wmlj1960 · Moderator

Hi again Judith.

Wow, I'm so sorry to hear about your husband. I'm sure you are still devastated by that being only 1 year later. And I know being alone, having only yourself to depend on, is why your are so worried about possible side effects when you start treatment. But please believe what all 10 members that have replied so far have said about Harvoni causing minimal side effects. And there are many more experienced members on this forum that will agree. Your memories of the Interferon side effects are what's fueling your fear but once you are taking Harvoni you'll be relieved. 12 easy weeks of Harvoni will go by much faster than your past 48 hard weeks did.

I remember my start of Hep C treatment last year when I received my first bottle of medicine. I opened it like a bomb technician would open a package containing a bomb. Full of fear. But once I had been taking the medicine for a few weeks I remember thinking about that and laughing at myself. I actually started feeling better when taking the medicine because the symptoms from the Hep C virus itself had been making me feel so fatigued for so long. The medicine was doing it's job. This is not uncommon with these new DAA medicines like Harvoni. You should expect to have an undetectable HCV viral load within a few weeks of starting treatment and you may also feel better too. Not everyone does, but many do. You should be able to continue to work without any big problem. Just remember to take care of yourself by getting some rest when not at work, not eating too much junk food or extra salty food, and drink plenty of good water. Try not to worry. You will do fine. smile

judeahomestead · Member

Thank you.....I start in two days. Praying I do not experience bad side effects. I really have to keep my employment of three days a week. I am on my feet the whole time. Lost my husband a year ago in a motorcycle accident so I am now alone. If I get sick there is no one to help me so I am worried. I will post my progress. Thanks to all for the support.

scotu · Member

Hey Judith,

I think, make that I know you will do fine! We've come a long way and I know there are/were worse treatments.

Harvoni was not bad at all for me, and I've been through a few. The forum will help.

Best wishes and best of luck.

Scot

Jaded · Senior Member

You will see many posts about hydration. i always had proper hydration so I didn't have any concerns about that. I started having side effects around week 8. After a few weeks of fatigue I decided to see what happens if I add a couple of extra litres of water daily as I was beginning to understand it not really about dehydration but flushing out toxins. Sure enough...things greatly improved when I did and I'm doing pretty good now. I'm starting week 18 tomorrow of 24...only 7 weeks to go. I think you will be fine...this is nothing like interferon at all.

oneriana · Newbie

what medication are u on?

judeahomestead · Member

Thank you

judeahomestead · Member

Thank you.

judeahomestead · Member

Thank you.

coolheat · Senior Member

Welcome Judith, It seems to effect differently with different people. You'll know what to do. I didn't really have anything bother me until wk. 4. And at that time it wasn't much at all. Relax and take a seat, many others like us to chat with. Marsha

tomyboy · Senior Member

welcome Judith,

My husband finished his 24 weeks of treatment in August and it was his sixth attempt at treatment. He is a geno type 1. The harvoni treatment gave him minimal side effects compared to the others and hopefully you will breeze through it. I am sure it will be much easier than your last attempt. His viral count is still 0 and we go for a one month blood work on the 10th. Keeping our fingers crossed. This forum has been a god send and a wealth of information. Everyone here is encouraging and knowledgable. Best of luck to you on your journey. Hopefully you will finish hep c free.

Laura and Tom

wmlj1960 · Moderator

Hi Judith.

This forum is a great source of information and support for anyone who is dealing with Hepatitis C so I'm glad you found us. Have a look around the site. The 'search' function is useful for finding answers to any particular topic you have questions about. If you don't find an answer that way you can simply start a new thread in the appropriate section. Also, if you need a definition for any of the abbreviations you'll see, there is a list posted in this "Forum Abbreviations" thread. The signature lines you see at the bottom of each members post are useful for quick reference to each individuals particular information. If you choose to create your own signature, some information on doing that can be found here.

This time your treatment should be much easier and with a much better chance for achieving SVR. So make yourself at home + Welcome to the forum! smile

G Man · Member

A walk in the park compared to the interferon. Good luck and God bless.

G

Gracie · Guru

Hi Judith,

I just started week 9 yesterday and haven't missed a day of work. I'm even planning a trip to Chicago this month.

Yes, there is some side effects, headache, achy hands and feet, a bit tired, but nothing bad enough to keep me home or in bed.

You will find this way easier than the old stuff.

Welcome aboard!

PS - on days I don't drink my water, I get headaches

Groupergetter · Guru

Welcome Judith,

As Jill said, the Harvoni is a relatively easy protocol. Nothing like the early interferon/riba. The most common side effect seems to be headaches which subside as treatment progresses Some have had insomnia. Some seem to breeze through treatment with few problems. You are fortunate to get started on these meds. The SVR rate is very high. For me, remembering to take the meds was sometimes a challenge. :) I used a daily pill container and X'd my calendar to make sure I'd taken my meds.

You'll do fine. I was able to continue working while on tx and thank God just made SVR in August (as you see in my signature line). Lot's of great info here, and wonderful, caring people. Be well.

Tig · Admin

Hi Judith,

I'm happy to hear you're preparing for round two. This time should be far easier than the first. There are some varied side effects being mentioned by our Harvoni warriors here, but as Jill said, it's not going to be close to what you experienced before. The whole thought of treatment can be ominous at first, but it will fall into place fairly quickly. I'm glad you found us and the advice from others will be helpful I'm sure.

I'd like to provide you a link as well. It stresses the importance of hydration that Jill mentioned. Pay close attention to it and any side effects you might have will be far more tolerable.

http://hcvadvocate.org/hepatitis/factsheets_pdf/SEM_water.pdf

Please feel free to share your genotype, viral load and any current lab tests you may have. It helps us understand your own set of circumstances before starting treatment. I think you'll do very well, but do take time out of your busy schedule to care for number one! Twelve weeks of TLC isn't too much to give yourself as you enter into battle for the last time. You want to give yourself every opportunity to succeed and treating your body right just makes sense.

If we can be of assistance at any time, just let us know. We're here to see you through this, and I'm sure this will be everything you hope it will be. Good luck!!

Cinnamon Girl · Guru

Welcome to the forum, Judith!

We have many people here who have experience of Harvoni and the degree of side effects varies from person to person, although most people find it a relatively easy treatment. I should think there`s a good chance you`ll be able to continue working although you may find you`ll need to to take extra rest, but it will be nothing like how you felt last time around. To minimise any potential side effects it`s best to keep yourself well hydrated by drinking plenty of water every day, eat well, get enough sleep and generally look after yourself.

Doing that 48 week stretch with Peg/riba must have been a real ordeal for you and you must be glad to have the chance to retreat at last with such a powerful `all oral` treatment!

I`m giving you a link to the `Harvoni Treatment Train` thread, do feel free to join in....

http://hepcfriends.activeboard.com/t58762824

You`ve found a very helpful and friendly group here and I`m sure more people will be along to reply in a while.

Wishing you all the best of luck!!

judeahomestead · Member

On Friday Sept. 11th I will start the Harvoni treatment for 12 weeks. I am 72 years old and am worried about the side effects. I still work 3 days a week and am worried I may be too sick to continue. Was on the 48 week program about 7 years ago with interferon and it kicked my butt. Any good news to tell me?

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