Hep C Discussion Forum

RAGDOLL · Senior Member

RE: New to Viekira Pak

Loopy Lisa · Guru

Way to go Mike, you are kicking some serious viral butt now. Congratulations on becoming UND. I think that is a cause to celebrate!!!

Mike77 · Member

She told me less than 15 which ever I dk but she did say it was all clear! I haven't got the actual paperwork she did it on a phone call

robertsamx · Guru

Hi Mike, YES--<15 is great. It's always nice to see the <15 with the word undetected after it. <15 clear stated by the DR assistant is what you want to hear. Congratulations man,you have cleared the virus and now the rest of your treatment will be stomping out those few little bugs hiding out in your liver. Way to kick ass!!!!! RC

JimmyK · Guru

Mike77 wrote:
Well just got my blood work back today! The assistant at the doctor said I was clear as my blood work stated >15. I don't know what all that means but I think that I am undetected as the test goes down to 15. Right? Whatever I know It is working cause I was at 1.5 million before

Just to be clear. ( No pun intended) do you mean <15?

Either way you are doing fantastic! Just like you to clarify < or > .

Thanks!

JimmyK

Mike77 · Member

Well just got my blood work back today! The assistant at the doctor said I was clear as my blood work stated >15. I don't know what all that means but I think that I am undetected as the test goes down to 15. Right? Whatever I know It is working cause I was at 1.5 million before

JimmyK · Guru

Greetings,

If you are an hour ahead, then you took it an hour early. If you will be there an extended time just stay on the same schedule. An hour early means no chance of losing saturation so not a problem.

JimmyK

wmlj1960 · Moderator

Tig56 wrote:
Now I want you to go stand in the corner and think about this!!

Teacher Tig. You are just too much!

Mike, here is some examples of the pill box / organizer that Teacher Tig is talking about in case you are in doubt. It was extremely useful for me while I was taking my treatment meds, and I still use it for other medicine I take. A good way to determine whether or not you took your dose of medicine without having to count pills. If you already have one then carry on. I know you have a fight with a dragon to win. smile

Pill organizer.jpg

Tig · Admin

Hey Mike,

We've all made the occasional error, that just makes you human! Missing a dose is something you want to avoid, but an hour isn't going to present a problem. Try an alarm on your phone and then a secondary alert if you miss the first. I suggest using a pill box which helps to remind you if you have taken the morning and evening dose.

Since you likely startled yourself, hopefully it'll stick in your memory and be a constant reminder to not do it again! Now I want you to go stand in the corner and think about this!!

biggrin

Mike77 · Member

Well I made a mistake today. I took my meds at the same time that I normally do but I forgot I am a hour ahead of my regular time. Will do it right tomorrow but messed up tonight. I think k it will be ok just once

Tig · Admin

Glad to hear you made it safely to your destination, Mike. Even though you had to stop 7 times! Bladders have a way of controlling your life, especially when you're on the Interstate doing 80, lol! When ya gotta go, you gotta go! Gave you an opportunity to stretch your legs and lighten your liquid level, ha!

We'll be waiting for your lab reports. I guarantee you they will be amazing. Expect a drop in your CBC, anemia is common when you take that much Riba. As long as you can manage the side effects and your doctor is in agreement, keep taking that full dose. They can reduce it a little if your Hemoglobin gets too low. But it sounds like you've got your Dragon by the tail and things are going good! Excellent!

Mike77 · Member

Man you guys are a hoot! Seen this today and got a good laugh. Tig the headaches are finally going away yeah. Today is last day of week 4. 1/3 done Drove 10 hrs yesterday with 7 stops. Looking forward to my Blood work when I get back next week to see my VL. They also want to check for anemia. Now that the headaches are gone treatment is not that bad. My kids did ask why I am taking so many pills as I never took any before. Just told them I am sick right now but I'm getting better without going into to much detail. They are old enough to remember my addiction but Idk just do t want to worry them!

Sydhanrahan · Guru

Wow, all them new fandangled inventions you all got over there in the US of A just never stop surprising me. How do you go in and actually buy Johnny on the Go????? What scenario would you use as an excuse???

When I was little, which is a long time ago now, my dad used to drive us 450 miles to see my mother's parents once a year. He was a rather impatient driver, who took a lot of pleasure in beating his own record each year. As we were very little there were frequent requests for pee stops, which of course were not conducive to record breaking. So he made my mum take along a pot and even when we had peed, he wouldn't stop to allow mum to empty it. Rather than having it slushing dangerously around her feet, she took to simply opening the window and heaving it out. As the roads were unsealed we would all arrive in Adelaide, very dishevelled, in a very dusty car completely covered with liquid steaks along the passenger side.

it would be late afternoon and we would all sit around the rotary clothes line which had a detachable canvas sun cover, while grandpa opened the Coopers Ale and dad bragged about his newest time.

Syd

ps. Wish I was enough of a car freak to tell you what the make was - it had grey upholstery with red piping. Well before the Chevrolet (best car ever!)

Linuxter · Guru

LOL Lisa,

I'll never be able to say "You Go Girl" with a straight face again. smile

Hey, everybody's gotta go ... one way or another, options are a good thing, right?

Mike77,

Do hope the headaches go away ... wishin' ya the best!

Dave

Loopy Lisa · Guru

Tig56 wrote:
Mike,
Damn dude, that's an expensive price to put on two rounds of liquid relief!! I honestly think the female option might have the potential to be a bit messy. I guess there's no unreasonable price to place on relief when it absolutely, positively has to go somewhere!

Mike77,
Glad those headaches are calming down a little. I hope you're able to relax and get some sleep. Try hot and cold packs on your neck before bed, if they're still nagging you at night. Sleep is vital but elusive sometimes, especially during treatment. Continued luck my friend!

Women can purchase a funnel like thing for travel, so they can pee like a man. I'll stick to the old fashion methods as I am not that hip, but its out there. :P!

Go Girl

-- Edited by wmlj1960 on Thursday 2nd of June 2016 09:04:00 AM

wmlj1960 · Moderator

Tig56 wrote:
I guess there's no unreasonable price to place on relief when it absolutely, positively has to go somewhere!

Tig · Admin

Mike,

Damn dude, that's an expensive price to put on two rounds of liquid relief!! I honestly think the female option might have the potential to be a bit messy. I guess there's no unreasonable price to place on relief when it absolutely, positively has to go somewhere!

wink

Mike77,

Glad those headaches are calming down a little. I hope you're able to relax and get some sleep. Try hot and cold packs on your neck before bed, if they're still nagging you at night. Sleep is vital but elusive sometimes, especially during treatment. Continued luck my friend!

JimmyK · Guru

There ya go then. The voice of experience. wink

wmlj1960 · Moderator

JimmyK wrote:
Mike?

When your missing a leg you learn all the tricks... Just passing it on. wink

JimmyK · Guru

Remember now folks, I posted mine because I saw the movie.

Mike? biggrin

wmlj1960 · Moderator

http://ipsite.org/3ifp biggrin

JimmyK · Guru

I have an idea!

wink

Loopy Lisa · Guru

Mike77 wrote:
Today traveling In a car from OKC to Atlanta. This whole drinking g plenty of water is getting to me. We're never gonna make it if I can't quit stopping to pee. Lol

Hahaha sounds like a wet ride to me ;)

Mike77 · Member

Today traveling In a car from OKC to Atlanta. This whole drinking g plenty of water is getting to me. We're never gonna make it if I can't quit stopping to pee. Lol

Loopy Lisa · Guru

Mike77 wrote:
So the headaches are calming down some still there just not so intense. One thing I have been noticing is I am starting to dream again. I never really remember my dreams. But at about week three of treatment I started having dreams and remembering. They are not wild and crazy dreams just regular but it's cool they are back. I don't know if it's the meds making me dream or the hep c just had my mind so messed up I couldn't remember then. Everything I else is going great just got next month's supply in. Going to Atlanta for a week so won't get to do 4th week test till 5th week.

Hey, that is great news Dave, calming down is good, meaning you are having better days. I love dreams, I am so happy you have them back, nothing like your mind giving you some good things to feel happy about. Keep going you are doing wonderful! :D

Mike77 · Member

So the headaches are calming down some still there just not so intense. One thing I have been noticing is I am starting to dream again. I never really remember my dreams. But at about week three of treatment I started having dreams and remembering. They are not wild and crazy dreams just regular but it's cool they are back. I don't know if it's the meds making me dream or the hep c just had my mind so messed up I couldn't remember then. Everything I else is going great just got next month's supply in. Going to Atlanta for a week so won't get to do 4th week test till 5th week.

Linuxter · Guru

Hi Emily,

Tig has explained a bit on a technical level, all I can tell you is that when I would drink a gallon of water a day I had very few problems with side effects but if I slacked off, even the slightest bit, the side effects would hit me like a ton of bricks.

Can't stress enough how important it is, it makes all the difference with how treatment goes.

In my mind, the water helps keep the meds moving throughout the system, to every nook and cranny (i.e. cells throughout the body where the virus is hiding). The water also carries nutrients to those cells that help the body fight the virus as the meds do their thing.

I feel as though proper nutrition is also very important, especially during treatment ... it's important to do everything you can to help the meds and your system do their job.

In addition to Water & Nutrition, I found that a little exercise really helped keep the side effects at bay and Really helped my mind cope with the meds. (In my case that was 400mg Sovaldi & 1200mg Ribavirin per day). But the same applies to all regimens.

Dave

Tig · Admin

Hi Emily,

These medications can dehydrate you incredibly fast. The old medications did the same thing, and now the new DAA's like you're on, are very skilled at doing so. The way these drugs act down to a micro cellular level (impressive term, eh?) change the way fluids enter and exit the cell. Whatever the heck they do, they demand extra fluids to keep your body hydrated. When you lack adequate hydration, you will begin to suffer some of these mentioned side effects. The one people tend to notice first are the headaches, sometimes crippling and persistent. Don't allow that to start. Your entire body needs the additional fluids, particularly your kidneys. You should be drinking at least a gallon of water per day (4 liters is better). Keep your urine a pale yellow. If you notice it getting darker than that, you're not drinking enough. I know it's difficult for most people to consume that much in the way of additional fluids everyday, but you will be glad you did. I bought some of those little flavored squirt bottles, like Mio, but I bought the store brand. It's cheap and you can change up the flavor of your water easily. I suggest you carry a refillable container and sip on it all the time. Keep it at your bedside and if you wake up, drink. A gallon every 24 hours is doable.

Skimily · Member

Linuxter wrote:
Hi Mike77,
Welcome to the forum!
Can't stress enough to be sure to drink 3 to 4 liters of water per day while on Tx.
Sorry to hear of the headaches, they should taper off as Tx goes on.
You might want to ensure that your electrolytes are maintained, perhaps a Gatorade per day will help and may even help the headaches.

Wishing you Well,
Dave

Hey...Why is the water so important? Is it just because being properly hydrated is making my body super awesome and ready to do work? That is something I really suck at.

Linuxter · Guru

Hi Mike77,

Welcome to the forum!

Can't stress enough to be sure to drink 3 to 4 liters of water per day while on Tx.

Sorry to hear of the headaches, they should taper off as Tx goes on.

You might want to ensure that your electrolytes are maintained, perhaps a Gatorade per day will help and may even help the headaches.

Wishing you Well,

Dave

Sydhanrahan · Guru

Hi Mike,

i just saw on oz news a welter of hurricanes in Oaklahoma. I hope you were a long way from the path of any of them. I finished 12 weeks of riba in March this year and came here daily to read and vent. The fogginess and lack of control over emotions are scarey. Rashes torture. Fatigue debilitating. You are doing the right thing, leaving the house or using your head phones. Drinking lots of h2o and you will be astonished at how fast 12 weeks flies by when its behind you.

all the best,

Syd

JimmyK · Guru

Mike77 wrote:
Yes I am in Moore, OK home of the Tornadoes Lol. El Reno about 45 min away. No the Camp is The Salvation Army Camp. I will do some reading though. Great news I did get this week is my wife got tested and came back negative. I was so worried that I gave it to her. Even though we never used drugs together. But did take a lot of stress off of me.

OMG Moore, really?

My Father in Law passed away May 5th 2013. My wife Carolyn was at her Moms at the time and I was home here just North of Houston.

So I kind of got my things together and rode my Bike up to El Reno. Nice little 7.5 hour ride. That was May 6th. Stayed a few days and I don't have to tell you what May 8th, 2003 brought. F4 cut right through Moore. I remember on the ride back home, somewhere around May 10th / 11th, coming south on the 35, well let's just say compared to riding through not quite a week earlier, Moore was Less.

I remember seeing the devastation of that Motel right there on the 35 when the F4 ran through it. What a mess! I started looking into it when I got back home and that is when I found out an F5 went through the same place in 1999.

The Hurricanes down here are bad enough, but with generally at least 5 days heads up it is coming. I don't think I could do the Tornado stuff especially in a City that appears to be a magnet for them.

Anyone who can live in Moore has nothing to worry about with treatment.. LOL

Have a great day Mike you are doing fine!

JimmyK

Loopy Lisa · Guru

Hi Mike, are you a coffee drinker? Have you suddenly changed your diet, dropped sugar, alcohols? If you have dropped lots of bad habits suddenly it can give headaches too, a withdrawal. If not, it is probably your body being sensitive to the introduction of these new medications. Have you asked the Doctor for an enemia test? I was anemic after two weeks which is uncommon, but it does happen. Sudden changes can make the body feel very strange indeed. I had panic attacks, and I couldn't sleep like I was on a huge dose of caffine, or buckets of coffee. I don't remember headaches, nor was I moody, more emotional and feeling a bit spaced out. But, I have read headaches occur and are to be expected. Hopefully the symtoms will level off soon, we are all differnet with medications, but generally from what I have read, they level off.

Congratulations on accessing so fast the new meds! I failed the old TX in 2014, and I had to wait another two years to gain access to the new DDA's. In total 3 years. Some people waited over 40. I know it doesn't feel it right now, but you're a lucky man. :D

Tig · Admin

Sounds like you're doing a good job of covering your bases Mike. Unfortunately these medications can impact you like this. The headaches, moodiness and fatigue are common with Ribavirin. It can cause a form of anemia that will just zap your energy. Your 4 week blood tests will provide a good picture of where you stand in that respect. Often the brain fog and fatigue hangs on throughout treatment, but you learn to tolerate it as your body adjusts to the medication. Thankfully the treatment is shorter and more effective now. This will be a done deal soon and you are going to be glad that you did it. Some days you may not think so, but it's all worth it.

Stay compliant, don't miss any doses, even if you're thinking one day doesn't matter. Each day is important and one day closer to the prize. It's time to get as much rest and relaxation as possible. Avoid the stresses that will continue to irritate you. It doesn't take long to figure out what triggers those feelings. You did good by leaving the room and listening to some music when the kids started to get to you. Keep it up when you feel it coming on. I had awful Riba rage during treatment, it's for real... Continue the hydration protocol all the way through. Keep your diet balanced and try to add nutritious smoothies and electrolytes. You'll feel much better as a result. We've got some good recipes in our nutrition section if you need some ideas.

If you have any questions, don't hesitate to ask. We're here to help!

Mike77 · Member

Tig Thanks for the info on the sun I do not want to get rashes. On the water I am drinking way over a gallon a day. I thought the same too the headaches were from not being hydrated but I don't think so. They start as soon as I wake up then go on and off all day on top of the foggy head filling its tough on me but I am pushing on. 1/4th way done. It's worth it to get cured.

Tig · Admin

Hey Mike,

You are definitely experiencing some of the side effects from the Riba. All of the drugs will cause you some degree of side effect, simply because they are so powerful at rearranging just about every aspect of your life right now!

One thing that jumps out at me, is the headaches. Are you adequately hydrating? If you aren't drinking at least a gallon of water per day, you're not drinking enough. I'm dead serious, at least a gallon or more of good filtered water everyday. People that don't, always suffer with headaches, bad ones. So up your intake and try to cut back on the constant use of Tylenol/Advil.

Glad to hear that your wife tested negative, that has to be a good stress relief. It's rare that people in a monogamous relationship, that have had no exposure to the virus, other than being partnered with a chronically infected individual, will test positive. It's still important to find out and now you can put that out of your mind.

Stay safe in the sun with light clothing, use at least a SPF 15 sunscreen, wear a hat and a good pair of UV sunglasses. You will need to limit your exposure to 15-20 minutes if at all possible. The heat and the UV will cause the rash and burns to develop. Ribavirin tore me up in the sun. I learned the hard way more than once. You may be able to tolerate more of it, but you need to find out with brief exposure. The burns can happen in that 15-20 minute time frame, especially on those days when you try to skip the sunscreen! Learn from my mistakes and don't try it! I don't want to worry you, but you're in this to win. Don't let the rash get out of control, it's no fun and hard to clear up once it becomes a problem. We can offer tips and some ways to avoid it, the work is on you to avoid it.

Mike77 · Member

Yes I am in Moore, OK home of the Tornadoes Lol. El Reno about 45 min away. No the Camp is The Salvation Army Camp. I will do some reading though. Great news I did get this week is my wife got tested and came back negative. I was so worried that I gave it to her. Even though we never used drugs together. But did take a lot of stress off of me.

JimmyK · Guru

Mike77 wrote:
JimmyK I live in Oklahoma so it gets real baking hot in the summer. I don't work outside anymore so that is a plus but I do have to go to summer camp for a week. I work for the church so I got to take kids. Is there any suggestions on the sun as I am going to have to be in it. Will sun scream work or is it the heat that does it?

Is that by any chance the Sooner Camp?

If you have the time, use the search function and search Rash. There are posts back to 2012 worth reading and considering what those before us have gone through and what they did about it. Again, when you can spare some time to read.

You anywhere near El Reno? I have a Mother in Law and a little Chihuahua living there. That is another story all together but nicely related to Ribovirin. LOL wink

JimmyK

Mike77 · Member

JimmyK I live in Oklahoma so it gets real baking hot in the summer. I don't work outside anymore so that is a plus but I do have to go to summer camp for a week. I work for the church so I got to take kids. Is there any suggestions on the sun as I am going to have to be in it. Will sun scream work or is it the heat that does it?

Pablito · Senior Member

Hi Mike

I was on a different regime but my experience of the DAAs is that the headaches only lasted a few days. As for ribavirin, I was on that 10 years or so ago. I don't remember headaches from it...but do remember the tiredness and breathlessness.

Hang on in there.

Pablo

JimmyK · Guru

Sorry to hear that Mike. Everyone is different and each has their own side effects. Your attitude for the most part will be one of the important keys and yours seems to be pretty good under the circumstances.

Keep your eyes on the goal and believe it or not time flies by.

Tunes helped me a lot.

Not sure where you live but you need to be careful regarding direct sunlight. You don't want to rash up and go into the summer like that so do avoid the Sun. I know that's a bummer but nothing about this lasts forever except the cure. ;)

JimmyK

Mike77 · Member

Headaches are still here doctor said to alternate between Tylenol and Advil. But the last couple of days my head has felt really groggy and my kids last night were being loud in the house. It was nothing new they are always loud but I felt like I was about to freak out on everyone. So from reading the post of others help me know what was happening so I just put some tunes on my phone and went outside by myself so I didn't blow up. Man today is the end of the 3rd week 9 more to go. These headaches suck though.

Tig · Admin

Hi Mike,

Yes, it's very common and particularly during the first few weeks of treatment. Often as your body adjusts to the treatment drugs, the side effects tend to level out. Jimmy's right, when you think you've had enough water, drink some more and then a little more after that. Does the term "Enough to float a boat" sound familiar? Do it... I would speak to your doctor and see if s/he has a recommendation for the discomfort. Tylenol is generally more recommended for us liver folks than Ibuprofen or Naproxen, at least on a regular basis. Try some ice packs on the back of your neck, that helps and so does applying a heating pad on low. Do your best to just rest and pound the water.

JimmyK · Guru

Mike77 wrote:
Day four of viekira plus 1200mg riba and my head is pounding. Had to come ho.e from work. I am drinking water and talk to the pharmacy said to take Advil but only two. So did anyone else have this problem? The pharmacy said it should go away after about a week.

Yep it goes with the treatment in some but not all cases. It is supposed to subside after a week or so. Cannot stress not simply to drink water, but a LOT of water. 3.5 to 4 liters a day. Anything less than that and you will be seeking out the Advil.

It's all worth it, you are slaying a Dragon and they don't go easy.

JimmyK

Mike77 · Member

Day four of viekira plus 1200mg riba and my head is pounding. Had to come ho.e from work. I am drinking water and talk to the pharmacy said to take Advil but only two. So did anyone else have this problem? The pharmacy said it should go away after about a week.

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