I was simply answering a question about posting etiquette, not scolding. You are more than welcome to use this thread. My apology for any misunderstanding.

I see that you keep talking about the thread thing. I am new and do not mean to do whatever it is that happening. Thanks for the help!

I am just looking forward to the end....brighter days and closer to a normal life

Hi John and Angela,

The reason for having personal threads, is because some members want to discuss something specific about themselves. If another person comes along and wants to change the topic, it's not fair to the original poster (OP). It goes by different names in different forums, but hijack or stepping on are terms we use most often. We have personal and public threads throughout this forum. It's usually easy to recognize them. If another member moves in on an established thread and starts a new topic, we will request they not hijack the thread. If that doesn't stop them, I release the Zombie hoard on them! It's never pretty....

I recommend using refillable containers for water. A gallon jug in the refrigerator and an insulated bottle to carry with you. That helps you monitor the daily consumption and cuts down on all that plastic. Whatever it takes, DRINK YOUR WATER!! 

I was one of those people that suffered with many of the ugly side effects of Interferon and Ribavirin. I didn't have suicide ideations, but there were days I thought being dead would've felt better! Both of those drugs caused terrible side effects. Severe depression and huge mood swings were common. We fondly called it "Riba Rage". No fun at all. Use oursearch function above and read some of those stories. The side effect profile of the earlier treatments often were severe enough that people had to stop treatment.

Sorry to hear about your accident, Angela. Take advantage of the downtime if you can. If you can use it to rest, eat and hydrate properly, your foot will heal faster and treatment will be less of a strain on you. The time will go by faster than you believe possible, right now anyway!

I was helping my grandbaby get off a trampoline. I stepped in a chair and my legs were shaking. It flipped with me. You mean you haven't heard of anyone else havi g the problems I am having with the Zepatier?

Angel, plenty of water, I put 8 bottles out, but usually get through around 10 or 12 a day, it helps with symptoms .

Why did you fall, did you get dizzy, they tell you don't stand too quickly on these meds.

John

Angel, you are welcome, and i don't know really how to work this forum, but through it, it brings me some glimmer of release. I don't know anyone else who has done this with Zepatier, but I do have a network of my friends who have even cleared this back in the days of a much rougher treatment, the interferon and the Rivoban, giving themselves shots in the stomach once or twice during the week.... ugh, not me, i waited until they had a less evasive way of treating this.

So I have had quite a few friends clear this with Harvoni with little to no side effects, and other drugs in the same family as Zepatier, we should not have a problem doing so either.

Lets consider ourself lucky that we did not go through what my earlier friends did, suicide thoughts, couldn't even get out of bed, no energy, to weak to climb out of bed, rashes, serve depression, disoriented thought patterns...... yes many moons ago, but not that many moons.( Interferon-Rivoban) treatments.

Our's is merely a walk in the park, it'll be over soon, so hang in there.

John 

Thank you John. I am glad to hear the stomach issues are better. I do not have any of those. I have a lot going on family wise so my stress level is thru the roof. I am glad I found this forum!

And I am sorry I posted on someone else thread. I am not familiar with how exactly this forum works.

Thank you Tig for replying. I don't know all of that. I know that I am going for bloodwork the 19th to see how the Zepatier is working. I am only tking Zepatier. I don't know if the symptoms I am having is med related or something else. I fell my first week on the medication and fractured my foot. So I have been immobile anyway for the most part. But I haven't been drinking a lot of water. Tea, soda and koolaid mainly.

Tig, Stomach is better of course all for the moment. Yep, 'm interested in seeing some sort of results, in fact I was just reaching out to see if on Friday, which is one day after the 30 day mark of treatment, I could just draw my blood then. Next week, Wednesday, the new Doctor read and visit. Funny life has a way of working itself out.....

I hate to have expectations with anything in life, its kind of like setting yourself up for a disappointment, but me taking these med's were so orchestrated by  God, that I have no worry about what will be. Just have to run the course, that all. 

John

Tig, hey hope your day is going well. Thanks for chiming in. Yeh, sure change the header to whatever makes sense. Enjoy  

Hey John,

Times flying, Brother! I think you'll be very pleased to see the results of your coming tests. The AST/ALT will have plummeted and hopefully the viral load will be either undetected or near to it. Sometimes expecting undetected results at 4 weeks proves to be wishful thinking, but more and more often we're witnessing quick action. Either way, I know there will be marked improvement in many areas. These drugs just work...

How's the stomach problems coming along? I had sympathy pains for you. Diverticulosis/itis can be so debilitating. It's in my family too, but so far I'm clear. Next year will be time to go in for my next scope, oh joy. It's good to stay on top of it, but it's also easy to put it off! I'm glad you're feeling better today. 

Good luck, we'll be on the edge of our seats waiting to hear your results!

You Zep Heads need to change the title of this thread to something different, you're all way past day 4! I can do that if you want, it's up to you. I find placing a number like that on your posts confusing sometimes due to it's inaccuracy later on. 

Angela,

Welcome to the forum. You discovered a caring bunch of people and I hope we can ease some of your concerns. 

If you can, would you provide us some additional information on your history? Zepatier for genotype 1A for 5 weeks is more than some provide, but information such as your pre treatment viral load, the Liver Profile (ALT, AST, etc.) CBC, and any testing you had to determine your stage of fibrosis, are really helpful when replying. Also, have you ever treated before? If you know them and want to share that with us, place it in your signature line. That's the info you see at the bottom of our posts. There are instructions in red in my signature line that will help you set that up. Often that will help us answer your questions and provide better informed opinions.  

Are you taking Zepatier alone or with Ribavirin? They sometimes prescribe it along with Zep. If you are, that will explain a lot of your symptoms. If not, you may, as John mentioned, be inadequately hydrating. It's vital to drink a gallon of water per day while you take these new drugs. They demand extra fluids and water has proven to be the best. Flavor it or add fruit, but know that sugary, caffeinated drinks don't help much. This is one thing I am absolutely certain about, HYDRATE! 

You're not alone during this, that's for sure. Insomnia is a well known side effect of some of these medications. The irritability and chills can sometimes be medication or HCV related. Have you discussed these issues with your doctor? If not you should. It's possible you could be experiencing something else. Other medication, health and the additional stress/strain of treatment can cause them as well. The insomnia can be terrible and many people experience it. Fatigue, insomnia and headaches are the common complaints with all of these new oral Hep C medications. Most of them can be resolved with adequate water intake and sometimes a sleeping medication can be prescribed by your doctor. Many times it comes and goes, but when it's impacting your life so obviously, it's time to call the doctor for help.

Feel free to continue your conversations here, or introduce yourself in our New Member section with some history. As long as you use the appropriate section, you can start your own treatment thread. We also have several community threads to discuss things as you progress. If you prefer, you can start your own thread to discuss your own individual circumstances and treatment without it being taken off topic or hijacked. 

C, I go to see a new gastro on Wednesday next week, Monday drawing blood work, four weeks of treatment Zepatier is this coming Friday. Can't wait for both the Doctors visit and the results from the blood work. Thank you for being a part of my journey.

John

Angel, you're in the right place. Our time frame for taking the Zepatier is about the same, today is one day short of 4 weeks for me. I'm also Geno type 1a.

As I've mentioned earlier to another nice young lady on this thread, don't look to hard for things you mind will create. My symptoms, are hard to measure but I have experienced slight headaches and yes, a little fatigue, trouble urinating all the water that I drink, although everything medically around is fine. I sleep well, but my sleep is broken, I get up every two hours to relieve myself, but fall quickly back to bed. Ive been trying to get that gallon of water a day in, this seems to help with fatigue that really i only feel in the mornings, and the headaches.

They scream loudly on this site, WATER, WATER, drink plenty of WATER, so I've been trying to do my best and listen to someones who's been there done that.

Insomnia, never had it, I shut my mind off when it hits the pillow, good sleep patterns, like go to bed the same time every night as much as possible, wake up the same time, and do not think once you get in bed, shut it down.

The chills scares me, my Twin....haha...Christine, we started around the same time as well, she is about a week or two in  front of me, right around you, she experienced the same as well, she will probably chime in as well. I never had the chills but had severe problems with my stomach, 2 weeks into treatment, my  Diverticulosis came on me like a vengence. So, not sure if the Zepatier brought it on or me. Who knows' today I'm good.

Hang in there, seek medical advice about the chills, you might be running an infection, and remember this too will pass.

John 

Hi Fran/Meow,

Welcome here! Glad to see you meeting the "family". Don't be scared about treatment, and don't let us nutso's scare you either - we all mean well, and we are all on your side. Congrats on you Zep start!! You will do well. C.

Hey John, 

I thought you were getting an appointment?? (to go and see a "new" gastro person) at the same place (where your prior gastro gal just up and quit on everyone)!

You should be seen (for multiple justifiable reasons) but mostly right now, just based on your gut issues - can't they see you? to review your divert/drugs - I would push you, to push them, to be seen, just so I could sleep better!

I worry about our twins (feeling poorly) and wonder WHO makes these decisions!! - WHO chooses cipro/flagyl as the best for you?, and your Sister ... (WHO was it who halfed the antibiotic dose??!! Hope it was all based on only the docs best guesses! 

Been away for apppointments, trying to catch up with ya'll, gone again tomorrow - fingers crossed things ease up a bit for ya. C.

Hey, I resemble that! Here's the new Zep Head logo, lol!

JohnAnton1 wrote:

---

Really, who is actually normal today?

---

 Well I certainly am. It is not my fault no one else is.

The joint discomfort, well thank God, I thought I was getting old moving around like an old man lately. Lower back is sore, my knee's and legs stiff.... oh okay, this will get better too.

You know as others before me have mentioned, this is a walk in the park compared to the initial med's they started treating this with, the Rivo and the interferon. Now these people had things to complain about. I've known I had this for a long time, but kept saying no no treatment until they come out with something non-evasive on the body and mind.

Well, I'm here now.

Christine, hope all is well and the new addition Meow to our little nucleus!

John 

Fran, about the aches. My doctor wants me to take both Advil and Tylenol for my arthritic pain and stiffness. I do, but try to keep it minimal so as not to distract my liver from its business of healing. One thing I've learned here, the hard way, is to give yourself a bit of a break. Maybe there's something that you can let someone else help with? (Very aware of the background snickers. I was reluctant to slow down but am getting the hang of it.)  Also I sleep with seven -count them, seven - pillows. That poofy gang of bedfellows is a treat. Bonus that they don't snore or steal the covers. 

More than 50% of people with Hep C related joint pain get improvement after treatment. Not sure where I read that but it stuck. I'm going to believe that we'll be in the lucky group. 

-- Edited by MyMallards on Wednesday 7th of June 2017 03:10:27 PM

Sitting like a precious little grandma in my recliner screaming "I will KILLLLL!!" Bahahaaa! Too funny Wendy! I feel so comfortable in the company of this just-a-mite-off gang. 

Hope you are all having a killer of a day!

Christine

Really, who is actually normal today? Certainly not me. I know I'm a little off but I actually like myself that way. Let us dance to no ones beat but our own!

For the Zep twins and their younger sister:

https://www.youtube.com/watch?v=THh1pPWEoWs

Canuck - Christine said kill, I had to go there. 

See I am not normal

Hi Fran,

So glad you found us! I'm the Zepatier twin John mentioned, and he's right that I'm nice but wrong that I'm young. Ha! Listen...we could be triplets in treatment if you dare. I need some help keeping an eye on John. 

Just catching up on your posts and hoping the anxiety is lessening with each pill down the hatch. I cradle the pill and give it a little pep talk before swallowing. Kind of a "Go get 'em, killer!" cheer. It works. The Zep is our friend!

You're going to do great. It's a simple smooth treatment compared to what some people here made it through. (Listen to the gurus - they know stuff.) Just think about how healthy we can be on the other side! This too shall pass.

Warmly, 

Christine

The topic-Peeking out of the closet - on Zepatier , has another nice young lady on it, Christina, my Twin....hahaha, just something we toyed with since we both started the Zepatier around the same time. You might want some company, so feel free to jump into that thread too.

I love the support that people give here on the way back to health.

Yeh, I like my cliche as well, worry about what isn't here yet is wasted time, and I've wasted enough time already.

I think today is day 18, welcome. Almost there!

John

"so far no side effects and I'm not looking too hard to find any or imagine things that are not there"

I love what you wrote here John! This is something I swear I'm going to write down on a piece of paper and keep it In my pocket. I just started taking Zepatier today &  The way I am I swear I will take the littlest side effect and it will be blown up into the worst thing imaginable. I mean it's bad enough having panic/anxiety disorder and I always have health/medical anxiety especially starting a new medication and worrying obsessively about side effects. Before I sound like any more of a loon I'm going to end this with a big old thank you. I am looking forward to following your journey to 100% on detectable and I'm glad there is a fellow Zepper here lol 

 Thanks again for this post. Honestly that sentence has help me more than you can ever imagine. 

Peace

JohnAnton1 wrote:

---

Well, Day-4 of taking the medication, so far no side effects and I'm not looking too hard to find any or imagine things that are not there. Although, in the past I have had 2 herniated disks in my lower back and it never really laid me out on my back. Once in a while I get stiffness in my lower back and have difficulty walking without being hunched over. It usually works it way out in a few days. Not sure if this is aggravated by my mattress or not enough walking to keep the muscles strong enough to support the injury.Or the medication is aggravating something in my lower back?

That being said, two days after the meds, my lower back is in extreme discomfort and tight, its around or below my love handles,.... hoping this goes away..... wondering if I should call my Doctor and ask about it..... have not taken an Advil until I ask if i can take them while doing the meds. I don't want to take anything until I ask my Doctor.

John

 

 

---

Ah! Got it now. Fox-1! Thought it was an Fscoring test system that I was not aware of, heehee

AWaaaay! Was what my bombardier friend said, laying on his stomache in the cold nose of his Halifax peering below through the "perspex". Miss him and all the experiences he shared.

Less tech back then, but necessary hard work still aplies today. C.

Good morning my new found friend. Hope all is well with you today, me so far, so good. Day-6-thank God.

FOX-1 = Pilot jargon for radar guided missle being released. 

Hi Christine, thanks for jumping in here. I am day 6 of taking just Zepatier, so far no side effects, accept as I have said I can feel it in my body and a funny taste in my mouth but not bad, bad enough however to make smoking a cigarette more repulsive than the habit really is already. That will be my next cleansing for my body, one thing at a time though.

Enjoy

Hey John,

Thanks for the kind words about Canucks - I guess we could be considered (by some) to be non-confrontational, or friendly, but WARM? .... hardly!, well ... maybe half the year if Spring comes early! heehee

Yes, it's hard to say, isn't it ... why now! (thanks a lot, bad back acting up right now!) but, you could be quite right that it is a bit of Murphy's law, changes in muscular strength, bad hydraton, bad bed, bad shoes, bad stress, bad back, bad timing, bad luck, and about a dozen other good reasons for it all "adding" to the equation just now - and that leaves MORE than a bad taste in one's mouth! I just hope your back stops hurting soon, not wanted, not needed just now!

I am a bit familiar with OTC drugs, and some script drugs, I just wondered if you ever had to rely on anything other than Advil for back pain relief, that perhaps you may already have some script analgesia at home (that you know has worked in the past) that you could run by the doc for an OK - but really good if you already know Advil should work well enough for you, and, that you had the foresight to double-check with your pharmacist. Good thinking, and good resourses those pharmacists.

Sorry, you made me giggle (the picture in my mind) - us, cruelly encouraging you to drink so much, and you having to race to the bathroom to pee so frequently, hurrying, in hunched-over slow-mo ginger baby steps with your bad back - keep spare pants in the bathroom. Especially glad (as you mentioned) that you don't have the "runs" as well! Not that that is a side many have had much trouble with anyway. Whew!

You possess a good attitude, you will do well.

We will look forward to your week 4 blood draw, right along with you.  C.

Forgot to ask you to clarify  ... biopsy 10 years ago - "mild" fibrosis, "recent" U/S - "nothing unusual", and no current fibroscan - so, have they ever expressed to you your current Fscore?? ie F,1,2,3,4? Perhaps determined by a blood test method? And, what does Fox-1 in your sig. line mean? 

Hi Christine,

Welcome to the group! Please start a new thread in this section (On Treatment), that way you can introduce yourself and we won't hijack John's thread. What do you know about your genotype, fibrosis stage and blood work? That will help when replying. It takes a day or two to navigate the place. If you need any help, let me know.

I'm not aware of anyone experiencing those symptoms, but that doesn't mean it can't be responsible. Are you taking Ribavirin, too? How long will you be treating? 12 or 16 weeks? These are powerful medications that affect every part of you. There are going to be times you don't feel right. It's not uncommon, but overall, side effects are light. Provided you are drinking at least a gallon of water per day. This is very important. A combination of healthy, sugar free fluids daily! Water is best when possible. These drugs dehydrate you like a squished sponge and you don't realize it until you start to feel lousy or a bit off. Fatigue and headache are typical signs of improper hydration.

Here's the manufacturers monograph if you don't have it. Informative.

Zepatier Monograph

C, I love Canadian people, warm , friendly, and truly non-confrontational. 

Thanks for reaching out to me. No, besides the lower back, I feel the drug in me, a funny taste in my mouth, but feel no signs of discomfort at all. Advil, is an anti inflammatory over the counter drug, like Tylenol but different. I called my pharmacist and they said no problem, so this might have been one off and my back sore as it is, fine as we go forward.

My blood work is to be drawn after one month of taking Zepatier, I just have to remember to schedule it, I will as I am anxious to see if the drug is doing what it should be doing.

Water, well I am trying to drink a gallon a day, going to the bathroom like a race horse, but inching along here.

I'm going to call the Doctor today and ask if I can take Viatim D that was prescribed to me, although I don't usually take vitamins all the time, once in awhile.

Okay, day -5, here we go, trying to get plenty of rest, I don't feel tired, headache, no runs, thank God I guess I feel okay.   

Hey John,

Nice to see part of your orignal thread now over here in "On Treatment"! And good bio by the way.

In the past when you needed to take something for your back pain - was it always Advil?? - what has worked best for you in the past? You should be able to take something, when you are needing it for pain relief for your back, so, as Tig wisely advises DO keep up the water intake (it is important), but as well, DO phone ASAP and confirm what your doc will recommend for you for some back pain relief. Until you can get some OK on what analgesic you can take, are there any tactics you can employ, that you know helped before, moist heat, etc. like Tig mentioned? I am sorry you are having that back pain right now. Try any other pain management tactics you know of, that you know helped in the past, in the meantime while waiting to get your docs opinion/OK on analgesic.

Other than the back pain, how are you feeling otherwise? I hope you have some nice person at hand to help with things in a pinch when your back is acting up.

Some people like water, others detest it, most of us seem to find it a little daunting to keep the sought for "gal per day" up. Tactics - try "mixing it up a little" (if a gal of plain water per day seems hard to do) - if it makes it easier to get the "volume" in - JK has a good recipe for a cranberry/coconut water drink (and there are other mostly water-based drinks that "count" and will do), you can drink a few of those per day too, just for a change,  instead of only ALL water ALL day. Tig has mentioned those "mio"-like flavour drops for water. Some people cannot live without their coffee and tea everyday (some people I know, all day long!) - those do count to a degree too, BUT not as much as water does. Plain ole water is ideal for "the flushing" and the hydration your body needs while on these drugs, but there is no reason why one cannot "mix it up a bit".

So, your first week (almost done)!  Have you had your "on treatment" blood draw schedule fixed yet - what weeks do you go back now for blood tests?

Hang in there. C.

Will do, thanks

John,

I can almost guarantee that's part of the problem. These drugs demand water. They seem to accelerate dehydration and that increases muscle fatigue and a proven increase in side effects such as headaches. Do not fall short of the one gallon per day rule! 

If you follow the other posts in this section, you'll see that we constantly harp on keeping up with that most important daily task, hydration. You'll experience far fewer, if any, side effects by following that recommendation.

Tig, oh, the water I have fallen a little short on this, why is the bench mark of a gallon real important ? 

Tig, thanks for moving the post where it should be. I'm pretty computer literate but it takes me awhile to understand where and how to. Yeh, I will call my Doctor later, but I think over all what my friends went through with early treatment, this should be a walk in the park. Your great my friend, thank you for walking me through this.

John

Hi John,

The first couple of weeks take some adjustment. It's not uncommon to hear about increased fatigue and muscle ache on all of these new treatments during the first 2-3 weeks. I would call your doctor and get the okay on the OTC anti inflammatory. Things like Tylenol and Ibuprofen are usually okay to take as directed. Are you drinking enough water? Remember, that gallon of water per day is a requirement! 

As a fellow sufferer of back problems, seems like "nothing" can set it off. If you're experiencing some tightness related to starting treatment, I'm hopeful that it will relax once you have adjusted to it. Try some moist heat and call the doc for advice on something for inflammation. Good luck!

I moved this post to the On Treatment section.

Well, Day-4 of taking the medication, so far no side effects and I'm not looking too hard to find any or imagine things that are not there. Although, in the past I have had 2 herniated disks in my lower back and it never really laid me out on my back. Once in a while I get stiffness in my lower back and have difficulty walking without being hunched over. It usually works it way out in a few days. Not sure if this is aggravated by my mattress or not enough walking to keep the muscles strong enough to support the injury.Or the medication is aggravating something in my lower back?

That being said, two days after the meds, my lower back is in extreme discomfort and tight, its around or below my love handles,.... hoping this goes away..... wondering if I should call my Doctor and ask about it..... have not taken an Advil until I ask if i can take them while doing the meds. I don't want to take anything until I ask my Doctor.

John