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Post Info TOPIC: First Timer


Guru

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RE: First Timer
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Hey Texas lady, 

Glad you were posting queries I noticed elsewhere in the site, about being on day 21 of epclusa.

I'm glad to hear from you again

You had mentioned ... I have been having a hard time sleeping and consequently a hard time waking up int he morning.  I have also (this week) experienced an achey liver which I never had before treatment.  Wanted to see if you had any experience with either of these things.  

Tig did have some good advice about this for you, but I just wanted to add my 2 cents.

I recall you have a very demanding work scheduale, and what with ALL this new demand being thrust apon you (getting ready for and then starting your HCV treatment) and no let up from normal demands, perhaps this is also part of the reason why sleep does not come easier?

I was the opposite of you - I could have NEVER have been working at a very busy demanding job prior to treatment, and certainly it would have been impossible for me to do so while I was on treatment - (never mind that you are a lovely young thing and that I am as old as dirt and probably only qualified to be unemployable anyway! hee hee) but my energy levels had been spiralling downward and declining for quite some time prior to treatment and I really plummeted with the fatigue as I approached treatment and while on treatment. The only thing that was really helping to keep me going the last 6 months before treatment was my hair-straight-back fear-driven pursuit to get myself into an epclusa/vox trial. I did so much sleeping on treatment due to the fatigue, sometimes I would wake (briefly) in the middle of the night with a kind of weird reverse jet-lag, shoud I be awake, should i be asleep? i would quiz myself, how can a person EVER be so dang tired and sleep so much!! - after this short talk I would just go back to sleep! I did go through a brief period of feeling fatigued AND jittery all at the same time (tired AND wired all at once) - that felt weird too - I was really quite blaming the third drug i did (vox) for this jitteriness, but I have no proof it was the cause of it. The jittery period did pass, the profound fatigue and weird heavy sleeps/accidental frequent day naps took much longer to get over, but, everyone IS different, for maybe many varied good reasons, so, it is hard to compare oneself to another.

Pre-treatment can be a stressful time for most folk, the first weeks on treatment can be too. You are only just over 3 weeks in, this IS the time most folk, if they are going to be feeling the effects of a viral war being waged within them, do. By the time you have received some reasurance that things ARE going well, as they should be, from your doc (after this 4 week check-up) maybe this will help you to feel better about things, maybe you will sleep better? Feeling it is "hard" to get up, after a lack of normal sleep, is normal!, but perhaps too you do have a bit more fatigue than you realize - when we are so used to going a million miles an hour in a demanding job - hard-workers seem to be hard-wired to try to ignore fatigue. I wish you did not HAVE to have quite such a demanding job right now - then it would not be such a problem if you did oversleep some mornings to "catch-up".

I had epigastric tenderness for years (decades) when I was undiagnosed, also had decades of intractable chronic escalating right-sided "backish" pain (that I had always chalked up to be muscuo-skeletal in nature - mild scolioisis), low and behold after I was cured, the back pain has since simply miraculously vanished - doc says NO, not liver related - I will NEVER be convinced of that! Still have some epigastric tenderness but who knows that could be my crunchy pancreas! If you look at the anatomy of the liver and all your guts/organs in there, they are extremely packed in tight quarters, so intrinsically entwined, meshed, piled up there, working in tandem, pain sensations can be hard to discern as far as origin, or exactly why they are felt. I bet my bottom dollar your liver-aching sensation or whatever it is, IS going to pass.

I am sure you will discuss all of how you are feeling, and sleeping, with your doc next week, maybe he wll have some advice for you on sleep, or can suggest some kind of sleep aid if necessary. 

Hope you're eating a healthy diet and managing to push the water despite having to loo a lot while working. You are doing so well to be able to keep pushing through your work. Please keep us posted. Hope you get a good sleep tonight. smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Guru

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Wow, its lucky that Dr tested you. Sorry to hear about the eptopic pregnancy.

As Canuck said, being diagnosed while you are so young is a real blessing. 

I had a lot of trouble getting pregnant with my second child (got HCV in tainted blood delivering my eldest), took over 4 years. I am sure my difficulty was from the HCV. 

Once you are clear of the virus, I hope you and your husband are successful.

Restless and exhausted....I feel for you. I do hope things smooth out soon.

A.        



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



Guru

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Glad you feel a bit better about things. And yes, you (and I, and many other of differing GT's) are very lucky to have epclusa nowadays, it came just in time for use with us GT3's. Fabulous treatment for GT3's, who "used to be" a "harder" GT to cure. No longer, thanks to the likes of epclusa!

I would not use the word "aggressive" per say (exactly) when refering to a GT3, over other GT's, rather, I would say it is true that we used to be known as "harder to cure" (in the past) and that our GT does seem to evidence a higher prediliction to also gaining "fatty livers" as a bonus (steatosis), our GT3 livers "might" become firmer/more fibrotic sometimes faster than other GT's, and sometimes we can progress faster in our fibrosis toward cirrhosis, but not necessarily so

Being that you are so young, and I assume, generally in good health otherwise, and that you have likely been diagnosed "early" in your infection, I anticipate you have not been subjected to the ravages of the disease than can occur to older folk who had to carry this infection for many, many decades, or all their lives, often not knowing they even had HCV. The longer you have it, the longer the inflammation in your liver has been there to contribute to the troubles. I am guessing just based on your tender age, your probable early diagnosis, and that you have epclusa on your side - I think things are going to turn out just fine for you.

The water drinking IS very important, you have to put in the effort to get that gal a day of fluid into you every day, without fail, thus frequent peeing. Hard to work when you have the runs, insomnia and frequent peeing! Can you not try to stay home for a while?

Please do try to create a signature line, with your data and test results when you can - it helps for communications. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Newbie

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Hey All!

I can't tell you all enough how much I appreciate you taking the time to respond to my post. I feel thankful for the opportunity to be cured, and after reading your responses I feel hopeful and relieved.

In January I found out I was pregnant after my husband and I had been trying for a baby for almost 2 years. We were super excited but at our second appointment something wasn't right, my pregnancy was ectopic and we were discussing possible courses of action. During the process my OBGYN decided that MTX (a form of chemo) would be the least invasive but wanted to double check my liver enzymes to make sure I was a good candidate. The results came back slightly elevated and so she said she would just check for everything she possibly could to ensure the safest treatment for the ectopic pregnancy. The tests came back positive for Hep C.

I am 31. I have Genotype 3, which I am aware is the most aggressive. I do not use IV drugs and I have been with my husband exclusively for 9 years, he has been tested 3 times since and has shown negative on all 3 tests.

I haven't had headaches or achey bones and joints. I still just feel like I can't get rest. I am. trying to drink a gallon of water a day, but as I said before, my job is demanding with long days and constant motion and it has been challenging.

I am also definitely super emotional. I am not sure if that is a side effect of the treatment or just a bi-product of being tired and slightly anxious.








__________________

HCV GT3 

No cirrhosis

31 F 

9 days on Epclusa 

 



Guru

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Greetings and welcome.

The taste change thing was an issue during the peg-interferon days.

http://www.catie.ca/en/practical-guides/hepc-in-depth/treatment/managing-side-effects/taste-changes

Again that was some time back and not associated to DAA's necessarily. How many commonalities between the two regiments would perhaps lie more in the effect of HepC treatment. 

At day 5 of treatment a LOT has already taken place. Reproduction of The Virus has been greatly affected already. The virus itself is very short lived so when the process of replication is interfered with the Viral Load takes a huge plunge. At four weeks it is common to be Undetected and that is simply because the blood draw is done at for weeks. Your liver is already getting a rest.

Keep hydrating. You are clearly removing poisons from your system.

Fellow Texan wink

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



Member

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Hey...

Just passed the six week mark for epclusa Tx...halfway home..

Had daily diarrhea bouts for the first month and was never quite sure when those bouts would arrive but, for whatever reason, more water, or its just running its course, I now have fewer and fewer surprises. All my sides, diarrhea, fatigue and the fog stopped quite dramatically in the past week.

Perhaps your relief will come when you've ridden this for a while or you get the results from your first SOT blood draw.
This is a wonderful place to get some reassurance.
Ain't these people great?

Good luck



__________________
66 m asymptomatic for perhaps 45 years GT 2b Dx HCV 2/17 ALT 113 AST 67 VL 551K SOT 5/17 12 weeks Epclusa 4 week blood draw ALT24 AST 22 VL undetected
Tig


Admin

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Hi Sophie,

I can't offer much more in the way of helpful information, you have received a lot of good advice already. The first few weeks are a period of adjustment to these powerful medications. Many drugs cause a taste altering effect, mine did too and they were light years different. I noticed a terrible metallic flavor with everything. 

Welcome to the forum, you'll find some good information and personalities here. As suggested, drink water like it's not going to be available anymore! The one gallon per day rule applies, be sure you follow the recommended intake. It's an absolute game changer!

Call your doctor and get approval for an anti diarrheal medication. There shouldn't be any limitations, but you must clear all additional medication while you take these DAA's (Direct Acting Antivirals). Take a few days off and hopefully the runs will reduce to a crawl... wink



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Guru

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Welcome,

I didn't do the same treatment as you but they are all powerful antivirals so it's not surprising for your body to make some adjustments...

Canuck has given you all the good advice, so I will just say...no matter how nervous you may be or how lousy the treatment makes you feel for a few months (most side effects are transitory) it's totally and completely worth it to get to live a healthy rest of your life free of HCV.  You sure can't live a healthy life with HCV.

Id for sure call the Dr tomorrow and ask if you can take something over the counter to deal with the runs.

Make sure you are hydrating a lot, that really does help with most sides, and with diarrhea it's probably extra important.

A.    

 

By the way, bananas have potassium and magnesium both of which are said to help with sleep (and stage fright apparently) so a banana an hour before sleep might help? 



-- Edited by Observer on Monday 26th of June 2017 04:58:12 AM

__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



Guru

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Hi Texas,

Welcome here.

Congrats on getting epclusa.

Sorry you are having these things happen to you and that you are super nervous about it all. Not nice, and you have my sympathy fer sure.

These are not nice things, but none of the things you have listed sound "extremely" dire nor "very" unusual for being on a strong course of an anti-virals, I am NOT saying that indeed all of these things you are experiencing ARE because of the epclusa, but others have experienced various complaints they attributed to epclusa (and/or to many of the other new DAA regimes people have been on as well).

I am not trying to minimize the discomfort I am sure you are feeling, but we have seen before, during the initial period of taking these DAA's (of which you are in midst of, being on epclusa for only 5 days now) IS the time we see people (if they are going to notice things), notice things. The first few weeks people can sense things, experience things and they find many times these things just reduce as you get used to the drug regime you are on and as they progress through the cure. Feeling blah(malaise), tired/fatigued can happen, but many have degrees of this even before they started their treatment! Headaches seem to be the number one common complaint with epclusians (and other Daa's) and this can be vastly improved/and prevented by striving to drink a gal of water per day. Drinking water is essential on these drugs (we are not kidding), if you have not been doing so, do so! Especially if you have been experiencing the runs.

I was on epcusa and an additional drug in a trial, so I cannot compare directly to you being on epclusa alone - but, everyone IS dif., some feel absolutely nothing on epclusa, others think they have sides from the drugs, for others it is a toss up if other completely seperate issues come into play coincidentally at the same time they are on treatment, or, whether they have draggged some pre-existing things along with them into tretament just to plague and confound us.

Sorry for the runs, extremely not wanted and very inconvenient to say the least, it IS listed as a "possible side" for epclusa, but really, i have not seen it here with many of our epclusians as being a frequently outstanding item, most people reported mild transient GI things, if they did occur - the most common complaint were headaches or blah.

Insomnia is another I have not seen many complain of while on epclusa.

I had a couple weeks of upper GI "gut burgling" episodes after each pill, tht would last for a couple hours after each dose - just odd, not nausea and not distressful, just odd. I had a hx of constipation, so, I actually got a little hopeful when I had some minor softer/looser stools about 2 weeks into my treatment, but that did not last, AT ALL! I was back to my usual bowel routine in no time, but I did learn a valuable lesson (while trying to make sure I increased my water intake to a gal per day) while on these drugs, i learned the water was VERY beneficial in many ways, not only is it very important to do so for the treatment (flushing your body and kidneys and carrying away the metabolized drugs, preventing sides and headaches), but it also had the added benefit in helping to keep my bowels working more freely, and in your case, it is all the more important to replace any excess fluids you are losing with loose stools. Do NOT allow yourself to become dehydrated.

I did experience some taste "distortion", (dysgeusia) for a short period when I was on epclusa, maybe a matter of days, and I think that was in the first week or so. It did not last. Dysgeusia I have experienced before though, a couple times! (unluckily, in a very marked way), once when I was very ill with hep B and another time for no known reason (but on epclusa I had nothing but a fleeting mild spell of dysgeusia). My earlier episodes were very profound and longer-lasting than what people can normally experience, say, when you have dysgeusia with a bad bout of flu. I am guessing your dysgeusia will be fleeting and will pass. 

I really wish you did not have to work (a lot, as you say, or AT ALL) while you are having the runs and feeling stressed. Is there not some way you could stay closer to home for the first while, until you are feeling better and more confident about things??

I am guessing, you are going through an adjustment period, that these things WILL dissipate and lessen in a fairly short time. I have no idea if you have ever had a hx of bowel issues/conditions before, so it hard to guess whether it's you, a coincidental bug, or the drugs. Regardless of cause, I am hopeful it will stop soon. No fevers, no excrutiating abdominal pain?? Right??

When is your next doc appointment?, I would be relaying these experiences to him and his nurse, for his advice, if you are not seeing him soon - do not let the diarrhea continue too much longer without someone assessing what you should do for it.

Soft, bland diet, easy to digest meals, rice and applesauce, low fat and meat, no junk food, small regular meals, lots of fluids.

Would be nice if you did not have to work during this initial stressful period. Stress/expending much energy, only makes everything worse when you got things going on that you have no choice but to deal with. The insomnia and diarrhea alone are not condusive to work - rest and being at home with as much comfort as possible, would perhaps be very helpful.

I don't know what kind of work you do, but can you not call in some markers and get some time off work for a bit?

Fire away for questions, or to fill in details.

You could try to write up a signature line, which spells out: your genotype (GT), some of your liver function blood tests (ALT/AST), your viral load (VL) what your (Fscore) is (usually determined from having a fibroscan done, or other blood tests), whether you have had an abdominal ultrasound done (U/S), and what kind of condition your liver is in. How long ago you were diagnoses (Dx), and how long you might have had hepc. Start of treatment (SOT) date and end of treatment date (EOT), how many weeks of epclusa you will be on. These are helpful basic bits of info that will assist our conversations. 

Fire away for questions, or to fill in details. We will all try to help as much as we are able. smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Newbie

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Posts: 3
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Hi all.  First time on the forums.  I have been on Epclusa for 5 days.  I wanted to know if anyone has experienced sever changes in taste.  Things that I am accustomed to eating and drinking taste dramatically different and unappetizing.  

I am also experiencing some gnarly diahrrea and wondered if anyone has any experience with a way to manage that.  I work A LOT and with the nature of my work, it's hard to know where I'll be when it hits!

I also have been having a hard time sleeping which is difficult with long, high-stress work days.  Any suggestions or advice would be of help.

I am honestly super nervous about all of this, my husband thinks I should feel relieved that I am on medication and being treated but I am more nervous now than I was before I started treatment.

Thank you for reading!

 

 



__________________

HCV GT3 

No cirrhosis

31 F 

9 days on Epclusa 

 

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