Hep C Discussion Forum

Tig · Admin

RE: New Member - just started Zepatier

Jen · Member

I'm over here in a little place called Oz.

I check in with you guys fairly regular however i do not always have the time to play.

No four week appointment, first blood at 8 weeks three week today Yeah!

I was saying the other day that its like waiting for Christmas or more politically correct the Holiday Season. so excited for the first draw of blood - i sound like a vampire Lol

You guys will wish i went away one day but until then your stuck with me - after all your my Viral family smile

The only side effect that still remains is the tiredness and boy am i tired i just can not get on top of it, i am even sleeping better but sleeping with the mind open if you know what i mean i call it menopause sleep its more of a rest than a body recovery session.

Oh it's so nice to be thought of thank you, i was thinking of you guys over the weekend praying for your safe keeping in the wake of Hurricane Harvey I hope you are all keeping safe and out of flood waters if your in or around the affected areas.

We in Oz as no doubt the rest of the world are watching the disaster take place through our TV screens "Mother Nature" certainly knows how to put on a show...

C - you will be the first point of contact as soon as the bloods are in as i will need some help understanding the lab results as i previously said i am being treated by a general practitioner not a specialist so i don't get a very good understanding of my labs reports..

Have a great day !

Canuck · Guru

OK Jen - where'd ya go??

You had a 4 week appointment - how did it go? How are you doing? Don't go too stealth!

Really hoping you are getting a bit of a break either from how you were feeling or in the demands being made of you.

Did your 4 week appoint. include a blood draw?

Thinkin about ya. C.

Lindsmatt52 · Senior Member

Thanks for the morning giggle, guys! Love the Sonny and Clyde characters!! biggrin

wendyo · Guru

If Clyde is still in the fish tank we will get him a mermaid for a girlfriend.

Tig · Admin

I will briefly introduce you to Sonny and Clyde. Jimmy can tell you all about them, they're from the Rock family, a couple of stone faced troublemakers sometimes. If'n Christine doesn't watch it, they'll have her and her tree rock under the stars. They're a couple of characters to watch out for, just saying keep your eyes open...

You probably thought we were all serious and stuff all the time, huh?? You'll find out! Anywho, here's a picture of those outlaws. Sonny is the biker and Clyde just wears a suit to fool people

Jen · Member

Bring me up to speed please Who is Sonny and Clyde ???

you guys are having a joke and i want in! biggrin

JimmyK · Guru

wendyo wrote:
Tell Sonny if he behaves we may have found him a girlfriend!

That would be cool, but then what do I say to Clyde?

wendyo · Guru

Tell Sonny if he behaves we may have found him a girlfriend!

Tig · Admin

Here we go! You'll have to bring Jen up to speed on Sonny and Clyde, lol! Jen, you're dealing with quite a group here. Now that you're one of us, there's no escaping the fun! wink

JimmyK · Guru

I must confess, somehow I started reading some of this thread aloud. I was reading along the lines about the "pretty rocks" folks are leaving around and then all the sudden Sonny is wanting to know what I am talking about.

Now what do I say?

Canuck · Guru

OH DEAR Jen!! Listen up everyone - I did not make Jen cry! I repeat, - I DID NOT! Nor did I make Syd cry, and that was not me either that had anything to do with anything when Jags fell apart. IT's just some kind of rumour that I am now dreading. It's NOT me, it's the drugs or something!

Don't cry, anybody! - this is outright dangerous on treatment, Conserve all water!

Forgive me Jen, I'm just trying to get you to laugh now, not cry!!

If you are NOT having a blood draw for this 4 week doc appointment, then please ask him for one. A 4 week draw should provide you some good news (I assume a draw IS being done at this 4 week appoint., but you did not actually indicate so). That 4 week result might help bouy and carry you through a little bit as well, even if the improvements are modest, you will be able to see they are going in the right direction. Wait for it! Good for the planned draws at 8 and 12 weeks too. I remember feeling so attached to everyone here that when I was making all those trips to the doc and for those labs, I just dragged all of you right along in there with me for moral support (I still drag you all around with me!). Those tiny cubicles were chock-a-block with my virtual team. I needed the company and support, I think most people do. So, for what we are worth, we are here for you.

I was going through a real tough period once (nothing to do with HCV), and a wiser very much older fellow than me (gone now) who had gone through much more than I, said to me (when I was asking him how he got through his tough times) - simply - (much like you said it) ... "what did not kill me made me stronger" ... And fortunately or unfortunately (depending on how one looks at things) I think this is a truth. We keep hearing folks here saying in retrospect what they have gained/learned/grown, from simply having to go through this evolution of killing a virus. What journeys we ride for positives!

If we can't all fit in there to go with you for your appointment, then do let us know how it goes! We'll be waiting on ya. C.

Jen · Member

Hi Canuck

Your right i am being tested with another rough ride but that's OK it will only make me stronger in the end.

It will be four weeks tomorrow for my first doc appointment since going on treatment, blood will be drawn on week 8 and week 12 of my 16 week course, Tomorrow will mark the end of the first four weeks on treatment.

Kiss rule - "Keep it simple stupid" though Wendy came up with another version, keep it simple sweetheart - you choose your favourite.

Markers i will see what i can come up with its pretty hard when the only sibling you have left in the same state is one so much sicker than you and your his rock, Friends, since i took mum on five years ago full time they slowly started disappearing. Your right i can find someone to help out and i will...

Canuck today you have made me cry and laugh but most of all you made me feel along with everyone else here a lot better, i am having a emo day as the demands that people think i put on myself are not always what they seem.

Thank you for being supportive as you guys are it for me.

wendyo · Guru

The kiss rule is keep it simple sweetheart or some say stupid. I'm not gonna call Jen stupid!

Jen as I have told Christine, don't let pride get in the way, ask for help. I know often times that is not easy for me. When I was on interferon, my twins were only 5. Thank God my mom was still alive then. I needed her help as I was a single mom and worked full time as well. We cannot be all things to all people and have to take care of ourselves.

Keeping you in my prayers,

wendy

Canuck · Guru

Hi Jen,

I like your "mainstay" for trying to maintain a positive attitude under duress ... you said ... "My number 1 Positive lifter - I"m on treatment." ...

Hold that thought (and, a constant glass of water in your hand)!

I found much solace in knowing I was doing the very best possible thing for myself/my health, and felt a special relief just getting to treatment and getting that first pill down the gullet. Try to let that carry you.

You are being tested with a rough ride to this point, made harder by no lessening of demands on you.

Call in some markers from friends, family, partner, business associates or anyone appropriate you can think of, who can do something (anything) to lessen even just a few the demands on you, even if it is only for short periods (even if this only equates to the odd help/chore/assistance/favour/errand) - try to figure out who you can delegate what to, who you could ask for what. You may be surprised, that if you ask, people often really do want to help. It's worth a try.

It is hard when you are indespensable!

You DO need more rest, even if you are not sleeping well.

Get something the doc approves of as a sleep aid. When is your next appointment to see him or for blood draws? If you are not due to see him right shortly, I would call his office and ask for what sleep aid he could recommend. Is your skin/hairline/neck rash still bothering you - you coud also ask him for a script for that if it is and if your own local measures have not helped relieveit

BTW - you are fully entitled to either laugh or cry, or do both at the same time when people say to you - just take it easy. If you cry, you'll have to drink more water tho!

I am really happy to hear that treatment has caused you to eat better - another positive amongst the harder stuff.

Keep diluting the ill-feelings with LOTS of water. Really important.

You also said ... "I am keeping it simple or as we like to say Down Under i am using the KISS rule." ... uuuh, sorry, technically I am a Commonwealther, but, duh, what is the kiss rule??

I hope you turn a corner soon and some of these ill feelings lessen. C.

Tig · Admin

Christine,

I just saw a show about those hand painted rocks! It's something that people are doing to brighten someone else's day. Kind of cool, isn't it? Here's a link to the story from Martha Stewart's webpage. You're the first person I've talked to that has found one. I hope life is finding the right path for you my friend. I'm glad to see you still checking in. I'd like to see more of it, too! OR ELSE wink

Hand Painted Rocks

MyMallards · Member

Hi Jen,

I prayed for you tonight while I took a little nature stroll. You have so much going on all at once. I wish we could have escaped together. Or, that I could have sat for you while you stroll ed. I'm pretty good at meeting the needs of others while ignoring my own so I'd probably fit right in over there! Oh girl! Since you couldn't go along, I'll tell you about what we found on the forest trail. On a big rock was prettily perched a small hand painted rock. On it was a scene of 3 pines under a starry sky. Absolutely stunning work that spoke hope to a sleep starved soul. On the back was a note that I could keep it or pass it on. I pass it to you with hope that you will rest better each night. Someone is looking out for us.

Dont forget to breathe. Ten big ones work wonders. Three will help. Drink like your health depends on it. But don't breathe deeply while drinking! That results in aspiration and you 'aint got time for that.'

This too shall pass. Sooner than you can imagine.

Christine

rock (3).png

Your photo was too big, had to shrink it a little! Beautiful rock... smile

-- Edited by Tig on Monday 21st of August 2017 09:51:22 AM

Tig · Admin

Hi Jen,

Thanks for the update, you're sounding much better! Glad those headaches are starting to let up, too. Water is liquid gold, especially for us Hep C Warriors. I tend to be a pest when I hear of people missing their recommended daily intake. It's a vital part of treatment and once people understand it's importance and find out we're not kidding, they start to feel better quickly.

You have your hands full at home with your many responsibilities. I hope you can find some time to relax and unwind. I know that's easier said than done, but try to find someone that can give you some time whenever possible. You're a strong person, but even family heros have to take off their capes! You need some "Jen" time, seek it...

That is your lesson for today, Grasshopper. Have a splendid week smile

Jen · Member

Hello Christine

Thank you for your very warm welcome, please excuse my tardiness for not replying earlier but I have got far too much on my plate everyday.

Its funny when i read your response "it's crucial to reduce the demands on myself" i didn't know if i should laugh or cry, i did just stop and laugh and laugh then wished i was born a man. biggrin

Like so many other's i am married with children, i own my own small business and I have a child with Autism who does utilize a lot of my energy, I am also caring for my elderly mother who is nearly 90.

I am with you on No life experience in relaxing, I don't know the word or its meaning LOL!

I have also found my eating habits are changing for the better, Water it's Liquid Gold for us Zepatier Warriors.

The insomnia i will just have to deal with as part of the treatment, if i gets out of hand i will take a natural relaxer.

As i said to Tig you guys are my Dream Team your help, support and guidance has been a blessing for me and i appreciate your kind words and support.

Jen

Jen · Member

Thanks Jimmy

Its been an interesting month getting on top of treatment and finding out what works and what doesn't for me.

Water it works!!!!

Keeping positive and happy even when you feel Shi**y inside, helps me.

My number 1 Positive lifter - I"m on treatment.

I am keeping it simple or as we like to say Down Under i am using the KISS rule..

Jen · Member

Hi Tig

I slowly increased that water intake from 3 litres to 4 over the weekend and it certainly put a stop to the horrid headache i had been experiencing.

You guys are becoming my Dream Team - I have an issue with treatment - you guys have an answer.

I was so worried when i first started treatment - i did not know who i was going to get advise from when i was feeling crappy - then i came across you guys, WOW! what legends - you have all helped make this journey a lot more tolerable, just knowing i have the dream team a click away keeps me at ease.

Thanks you for all the additional information and i will increase the electrolytes from today...

I feel like the student (Grasshopper) and you are my Teacher (Master)

Thanks again for putting me onto the right path, so far treatment gets easier every week.

Tig · Admin

Hi Jen,

The chance that you will experience water poisoning is remote. When people hear that you'll be required to drink all of this water, they may be genuinely concerned but water poisoning or intoxication typically occurs when you drink too much, too fast. The 3-4 liters of water required with these medications isn't more than we should be drinking already. Most healthy people don't drink enough water each day. When you're on treatment, these drugs demand you consume a determined amount. 3-4 liters per day is what the medical profession recommends each day for everyone. We want you to be sure you're consuming enough.

There are some good resources available that explains this and I'll provide one at the bottom. As Jimmy mentioned, you don't want to drink so much you deplete your sodium levels, so it's important to maintain your electrolyes. A good diet, and proper fluid intake should assure you won't deplete your levels.

These medications will dehydrate you over the course of a day. That doesn't mean you'll notice the fluid loss through urination or sweating, treatment turns your metabolism on high and uses it. When people don't drink enough water daily, they will experience side effects as a result. Increased fatigue, muscle ache and headaches, sometimes severe, are most common. We frequently hear from people about these symptoms and when asked about their water intake, they usually haven't been meeting the goal. If your normal intake should be 3 liters per day and you're experiencing side effects like these, you should increase your intake. Most people here notice quick improvements. Remember our recommendation of 3-4 lters is over an entire day.

Water Intoxication

Electrolytes

JimmyK · Guru

Hiya Jen.

Considering your weight, make sure that you add back some electrolytes.

Coconut Water 2/3rds and 1/3 Raw Cranberry Juice.

Mix that into the equation. Other options are also out there. You do NOT want to deplete sodium. That will make you feel lousy.

You can do this.

JimmyK

Jen · Member

Hi Tig

Thanks for your warm welcome to this site I certainly will familiarise myself with the knowledge section.

I am struggling to put more than 3 litres of water in day as I am only 50 kilos and constantly feel like I'm going to bust, my friend is a fitness trainer and she's concerned I will drown myself with too much fluid.

Other than a few side effects all is good on treatment. hmm It Saturday for me, No work day Yeah! biggrin biggrin biggrin It great not having to go to work when you've been awake for half the night.

Tig · Admin

Hi Jen,

The itchy rash isn't uncommon at all. Occasionally from the medication, especially the older drugs, like Ribavirin caused a lot of skin problems. HCV is well known for causing any number of skin maladies. Right now, if this is something new, it's more than likely the Zepatier. If you can't control it with topical lotions or creams, like an OTC hydrocortisone product, calamine or similar, ask your doctor. You should always ask your doctor if you're experiencing anything unpleasant. Be cautious about adding any medications to your treatment plan.

The number you referenced in your signature "47 H" is probably the ALT test. It's one of several tests that are part of the liver profile (CMP or Complete Metabolic Profile). The AST and ALT are two of the liver enzymes that they monitor and are often the first tests that are discovered to be elevated with HCV. The ALT is liver specific and when elevated, indicates ongoing inflammation of the liver. You'll see that drop back into the normal ranges following your next round of blood work.

If you would like to browse through our Knowledge Section, there's a lot you can learn about this disease. You can also use our search function at the top of the page and enter a keyword or two and you'll find discussions we've had here.

Be sure to browse the Nutrition Section as well. For the nausea, you might try this recipe for Homemade Ginger Ale, it's a good one!

Jen · Member

Hi Canuck

I do not know my Fscore however i will certainly ask next time i am at the docs along with please explain the test result in detail, After being on this site, i need to be more educated on the subject of my own illness.

Treatment so far has been ok, i really cant complain, so i had to tolerate - headaches, nausea, rash, no energy, dizziness, tiredness, dehydration, itchy skin and insomnia love the insomnia, it can only get better : )

Thanks again for the kind welcoming...

Jen · Member

Hi Wendy

Thank you for welcoming me, Ginger huh! i will certainly give it a go.

I am getting the water into me just have to keep it within eye sight, at work i have attached the water bottle holder to my computer No Water - No Work is my motto from today.. biggrin

I am 54 yo

I was first diagnosed in 1996 and told life span was 10 - 15 years - If i don't drink alcohol and live a healthy life style, Doctors told me no cure at that time.

Well i got healthy and angry with the docs and decided that i didn't need them or need to feel like i had leprosy.

During the past two years i have watched a family member slowly die from from HCV A, C a - b, D and i didn't want to end up on interferon drugs or suffer the pain I've witness him endure.

So in 2017 went back to the docs and asked for treatment for HCV, a blood test confirmed HCV then we needed to know the Geno type, 1a confirmed (don't know what it actually means).

It was not my GP who requested the 16 week Zepatier treatment but the authorisation body who supplied the meds.

After being on this site i noted most people are on Zepatier for a 12 week cycle I'm a little jealous.

On my signature line i have 42H i understand from my Gp This is my liver function number.

I do not see a Hepatologist, I see my local GP who is easy and has been less judgmental and more supportive than any of the specialist i have come across in this country.

Over the past few days i have noticed a rash come up under my hair line and down my neck which is quite itchy anyone have something similar with the meds - I seem to be the lucky one so far, experiencing as many of the side effects as possible.. If it wasn't so sad : ( it would be funny .

Canuck · Guru

Hi Jen,

Welcome from me too. Glad to meet you. Sorry to hear of the not-so-good (understatement) parts you have been experiencing, but so glad you are on treatment, and well on your way. From your bio I think you have had it for some time? How have you been faring, up to treatment? Have you had abd. ultrasounds/fibroscans? Do you happen to know your Fscore?

BTW, you have in your sig. line (behind your GT) the number/letter "42H", indicating ... ? Wondering why you doc chose a 16 week length of Zep for you.

You have met and received some very good advice from the folk here already. I too hope the "ill-feelings" will lessen. Experiment with trying these things, up the water, for sure! Hang in there. Keep posting, we want to see you feeling better (and cured of course)! smile C.

MyMallards · Member

Welcome, Jen! You're in the right place.

I finished my 12 weeks of Zepatier last month. All I have to offer is my own experience but you did a great job there of describing how I felt. I hit a wall about 2 weeks in. Fatigue and weakness alternated for my attention. I learned the hard way that it was critical to reduce the demands on myself. I claim very little life experience with relaxing. It was one of the good gifts of going through treatment.

My eating habits morphed into something healthier because I just couldn't stomach much junk food. I found that my appetite improved when I started each day's intake slowly - usually with fruit and yogurt smoothie. I'd toss in some protein powder because our healing livers love it. When I just couldn't stand the thought of anything else I'd snack on hard boiled eggs. What I've been told here is that we'll feel better if we drink a ton of water. I was a skeptic until it worked!

Insomnia is a real bugger. Ugh! So feel you, poor girl! That two hour sleep makes for a long night. I tried several different sleeping prescription. There was no magic for me but it made me feel more relaxed while I laid awake. Try to keep some reading material at hand to pass the time. It's better than watching the clock and getting more frustrated. It is what it is but it's not forever. I am getting more sleep now that the Zep is flushing out.

You're among friends here. We understand. Praying that your path smooths out.

Christine

Tig · Admin

Hi Jen,

You seem to be experiencing similar issues with treatment shared by many others. The first 2-3 weeks take some serious adjustments to these medications. The good news is, it should begin to improve. I can't tell you these issues will disappear next week, but I hope you'll start to witness improvements.

Wendy mentioned the use of Ginger for nausea. Try it! It really helps, but avoid added sugar to anything you try. We have some good recipes in our nutrition section, the homemade ginger ale is particularly good. Take a look through the many ideas there and you should find some good ideas. You may find a milder diet will help with the cramping.

You mentioned drinking 3 liters of water daily. That may not be adequate. Try increasing it to 4 liters. These drugs demand more fluids. The cramps you're feeling may be due in part to dehydration. Your bowel draws water out of your body, if you're not adequately hydrated you may be cramping up as a result. Give it a try.

Ginger, milder diet, more water/fluids and an easier exercise regimen during treatment may be your ticket to comfort...

wendyo · Guru

Hi Jen - you have to drink water. Carry it with you everywhere. For the nausea you can do ginger. Ginger ale, ginger tea, tablets. Put ginger in anything! I suffer from nausea and take one ginger capsule every morn and drink ginger tea after breakfast and it helps lots. Eat some yogurt. This will help with your stomach as well as giving you some energy. You may be dizzy due to lack of food. Talk to your doctor about the insomnia and they may either prescribe something or there are plenty of natural things to take as well.

Others will be along to make more suggestions.........

Please let us know more about you and add a signature when you get a chance.

http://hepcfriends.activeboard.com/t58862021/how-to-create-your-signature-forum-abbreviation-definitions/

Jen · Member

Hello

I started Zepatier three weeks ago after being diagnosed with HCV 1a, I was quite nervous about starting treatment as i was unsure how it was going to affect me after hearing about the possible side effects.

First week - Feeling positive - i exercised for 30 - 45 minutes daily, i had horrid stomach cramps during the day and suffered with dizziness most mornings, i visited this forum for the first time and took note on drinking plenty of water.

Second week - Still positive about the Meds but the stomach cramps have increased and my appetite has decreased, the dizziness is still here and i feel nauseated quite a bit, Drinking about 3 liters of water a day, Thanks you for the Heads up!

Third week - Positiveness has been replaced by tiredness, i am struggling to find the energy to exercise as i am not sleeping, if i am lucky i might get 2 hours sleep otherwise its toss and turn for 7 hours, I no longer have the stomach cramps but i still have the dizziness and i am getting quite a few headaches as well.

Water seems to be the blessing with Zepatier, i just have to remember to drink it...

First blood test due in 5 weeks - I am hoping some of these side effects will have diminished by then.

Hep C Discussion Forum

Legal Disclaimer: