Hep C Discussion Forum

It comes down to what works best for you, Mo. I haven't heard any differences regarding the administration time in relation to hydration. The goal is to ensure you meet the fluid intake over a 24 hour period. A large amount over a short period of time will end up in the bowl, not your tissues. Some people will experience some harsh side effects, but that number is low. By harsh I mean unpleasant, not intolerable. Many have found the "headache" to be an indicator that you need to increase your water intake.

These are powerful drugs and over the course of treatment you are likely to realize something is going on, but 98% of the time it's completely tolerable. For the 2%ers, there are things that can be done to make the side effects bearable. 

Morning

You guys bring up good points. I get up all night to pee as it is! There are medications that if they could make you drowsy they tend to hit me hard for some reason so the thought was close to bed time would be best. I still work so really didn't want to take it first thing in the morning without a clear idea of the impact on my body / mind! This gallon of water a day thing is a new wrinkle so I'm now recalculating........

Welcome aboard Mo.  You mentioned taking your Harvoni at night time?  You might rethink that unless you work nights and sleep during the day.  My doc told me to take the med in the morning and keep drinking water throughout the day if I wanted to avoid negative side effects to the treatment.  There's no way I could have kept pouring water on each dose if I was taking it just before bedtime.  It would have been a matter of drinking water, getting up to pee and having another glass just so I could head back to the john to offload and have yet another glass.  A recipe for getting tired of treatment real fast.

My 12 week treatment went pretty smoothly until about half way through when my psoriatic arthritis started reacting to treatment.  My hands and wrists about killed me, but no way was a little pain (little???) going to keep me from ridding myself of the virus.  Wrist and hand pain continued through the last half of treatment and for a few months afterward, but I'm so glad I toughed my way through it because I feel so much better now, 15 months after finishing treatment.

Hang in there, I'm sure you'll be glad you did!

Hi Mo

You are 64, I am 64.

You have been prescribed Harvoni 

Me too.

You are 1B

I " WAS " 1B

The treatment is a piece of cake. 

Not to worry. You will do fine. 

Good job on the sig., Mo! Well done.

I would be surprised if you don't have a fibrosis score (F score). It is always required to determine the correct type and length of treatment. It's important to know the level of liver fibrosis you do or do not have. They may have used a series of blood marker tests to determine it. Not the most reliable but adequate to obtain insurance approval. Just ask next time you speak with your doc or treatment nurse. 

Thanks for the info Guru

i don't have an Fscore nor a fibroscan. I'm hep b immune but not hep A and they were going to give me the vaccine. I'm on lisinopril for HB and low dose aspirin. I have an influenza shot each year and no pneumococcal. I'll include this when I create a sig. line. Thanks again for the great info. 

Glad you will start soon Mo!. 

Thanks for posting your additional labs and info. Good you procured copies from your doc.

Always good for you to have access to your own data for your reference as you go along.

Good nothing significant was noted from your ultrasound. Have you had a fibroscan?

What Fscore have they put you at? Usually determined by biopsy, or more often nowadays, by fibroscan, as well as by various blood level calcuations/determinations.

Knowing whether your Fscore is F0, F1, F2 or F4 is good info to know. 

The data you have provided thus far is really good to add to your "sig. line", for quick reference for questions or conversations that come up that we might be able to assist with - saves scrolling through posts to elicit the data from within a thread, if you create a sig. line.

This is just me ... dotting i's and crossing t's (aside from the Fscore and fibroscan) ... did they test you for your current hep A/B immunity levels (they probably have/should have), and did they recommend any immunization or "re"-immunizations, for either A/B , influenza, or pneumococcal?

Jimmy mentioned an acid-reducing drug consideration when taking HCV treatment drugs, I don't know if you are taking any meds like that, but you did mentioned high BP and stent, so, IF you happen to be on any meds (anti-coagulants/anti-hypertensive drugs) inquire with the pharmacist and the doc, and read the info that comes with your harvoni, in the case that you are on any meds that should be considered for interactions with harvoni. 

I am glad you are getting this opportunity for treatment. Nice you have all that medical knowledge/backing around your house, every bit helps!!  C.

Good to hear Mo, absolutely the right choice.

As to time of day one thing that is in fact important is consistency. Do your absolute best to pick a time that will work for 84 days in a row and stay as close to that time as possible.

Myself, due to a number of factors and the fact I treated the same time as my wife, I chose 5:55am. I would keep the meds on the nightstand, set the alarm, and regardless of the day, it went off at 5:55am 84 times.

Lots of Doctors miss it but if you take Omeprozol you MUST take it at the same time as the Harvoni on an empty stomach. That added to the methodology of 5:55am for me.

Do whatever works for you but whatever time you pick, make sure it is a time you can stick with. For me the alarm helped keep things systematic.

Both my wife and myself cleared the virus by the first blood draw and never looked back.

Good stuff!

JimmyK

Welcome to the forum...all I can add is that like you, I had it 35 years undiagnosed, got diagnosis last August and was terrified as I had begun to get really ill. It crept up on me quite fast and through finding this site I was able to source information and knowledge not even my GP knew about. The knowledge helped me get treatment and now ....Im 7 days into a 12 week course of drugs ...I feel like I'm getting my life back. I'm on Epclusa not Harvoni but I will say I have had zero effects cause I took advice and drinking about 4 to 5 litres water a day ....feeling so much better already...i can't believe how good these new drugs are....I hope you take the plunge with treatment before nasty virus reaps havoc in so many ways.

good luck and keep rockin Biker Mo 

Greetings,

It is important to remember some folks are terrified about riding. With your screen name I assume you are not.

Unnecessary fear is something that can really keep one from doing that which needs to be done.

I work for an Airline. My wife and I can fly anywhere in the world for free. But she is afraid to fly so she will NOT get on a plane. I can put her behind me on the bike and head on down the I45 into Houston, no problem, but a plane, no way.

As a result she has missed out on a lot while I have managed to see a good chunk of The World.

Fear can stop you from all sorts of things.

Harvoni, been there done that and it was a breeze. HepC, been there and done that as well and it is GONE. Looking forward now I know someday I will kick the bucket, but it will NOT be as a result of HepC.

I venture to say not only can you treat successfully with little to no side effects, (if you stay hydrated), but treatment also will not stop you from riding during treatment. It is that smooth.

Welcome to the Forum. Been riding since 71' and now I will continue to ride a lot longer, thanks to Harvoni.

JimmyK

Welcome BikerMo,

As Tig mentioned, if you know your genotype and other other info it will help everyone put in our 2 cents. Stay off the internet as you will make yourself crazy reading about HCV. If you stick to forums and message boards and read what people have experienced would be much more beneficial than google. Saying this out of been there done that! 

I was diagnosed at age 28 and and fortunately being sober, my disease did not progress as others have. HCV does progress even if one is clean/sober; just slowly. I did have bouts of feeling poorly from HCV as I had 2 failed treatments with the old medicines. So I know if creeps up on ya. I was ready for Harvoni when it came out and thankfully it did the trick. 

Look forward to hearing more from you and use the search function here and soak up all you can!

wendy

Hi Mo,

You've landed in a good place here for questions, to seek opinions, experience, and to just join in on good "right out loud" thinking.

I think you are required to do even more reading, thinking, before you will feel comfortable making up your mind what the right thing is to do.

I should have known more about HCV before I was diagnosed in 2015, but just did not, I suddenly got propelled into and spent many months (fast and furious) obsessively learning everything I could about it - I realized just how old school and ignorant I was, in quite short order, the more I knew the faster I RAN to treatment, welcomed it with grateful open arms, to rid myself of the HCV I had unknowingly been packing for 40+ years.

It's that "trepidation at the edge of the pool" thing, shallow end?, deep end?, can I?, will I?, when the time is right, jump!

There has been NO better time than today to be treated to be rid of HCV. I was NEVER so glad, nor so rewarded, than to be HCV free! 

Keep poking around here and see what you end up thinking.  C.

Hey Mo,

Welcome to the family! You found a good group and I think you'll enjoy the forum.

If you could tell me a bit more about your case, it will help us offer some better informed opinions. Do you know any of your blood test values? Genotype, viral load, ALT and AST for starters. Most valuable is knowing what your liver fibrosis stage is. Did you have a fibroscan, which is a specialized ultrasound, a biopsy or was it determined with additional blood work? Insurance companies demand it and the VA does too. 

I will never tell you to not seek treatment. I recommend it. There have been very limited problems with these drugs. When we start looking for bad news we always find those references to bad news. Instead, look at the incredible results. The side effect profile is low and the chance you'll have the problems you're concerned with is about 1%. The chance that your liver will get worse without treatment is 100%, whether you're feeling it or not. Make sense?

Depending on those fibrosis scores, you might be able to wait. If you have had this for decades, the damage is there and you may not realize it. The longer you have it, the closer you get to the day that it kicks into high gear and you get the news that your liver health is now in crisis mode. You want to avoid that day. There is always a chance that you'll go from something else, but you don't want to wish you had done something easy like this when you had the opportunity. Some people never get the chance you've been given.

Hep C virus has many ugly hats and they can plague you slowly and one at a time or one day you simply get sick with a myriad of problems. In my opinion, it's far better to turn off the fuel to that engine.

We'll have time to talk as you fill me in on those tests. If you don't have them, ask for them. You have a right to those and I recommend you keep copies for future review. I'm glad you're here!