Hep C Discussion Forum

Razor Blade · Member

RE: Epcluser's Corner

Canuck · Guru

Phoenix,

Here's that song (anthem) you asked for! ... I'm still looking for (by popular request) Wendy's "doggy mantra kill, KILL, KIIILLL video" ... I just love-that-dog! ... get back to ya soon on it. wink C.

No, no, no - I didn't say "Viral LOAD", ... I saa-id ... "Viral ODE" !! You know, like ... as in ... "Ode to a Virus"??

Begone you vile

wicked thing,

herald my war cry,

it's your death I sing!

Be forewarned,

you'll taste my steel!

Of your innards,

I'll make a meal!

I'll pierce your breast,

crush your head,

slaughter your children,

oooh how, I wish-you-DREAD!

When you're starved and bleeding,

dis-armed, eyes sloughed,

then I'll strangle you thoroughly

'til quite cold enough!

And when your flesh

rots and decays,

I will celebrate,

every day!

I'll dance on your bones,

no grave for thee,

your evil soul to

purga - to -ry!

Your essence will vanish

Into hell's abyss,

dust, washed to nothing,

OH - MY - BLISS!

I tire of you,

you creepy skum,

no right to exist,

YOUR DAYS ARE DONE!

The army has come!

(a velpa war cry!)

Canuck · Guru

Phoenix and Pablo,

You are both right, it IS VERY awesome and VERY exciting around this neck of the woods!

So nice for you Allison!! Congrats on your 4 week results. And soon, the same will follow for Ruby, Phoneix too! Allison, did you mention what your prior VL load/ALT/AST was, to compare to your newly found UND and now "normal" LFT's? Can't wait to hear Ruby's LFT's if they come tomorrow or as soon as they do. Phoneix do you think your LFT's will arrive before your PCR result does?

So much more good news to come for SO many others in the epclusian nation that I soon won't be able to remember all the names!!

I truly believe EVERYONE on these drugs are going to do perfect!

I am bit surprized and disappointed for miandre though - that does not sound right or good to me, (unusual to me), but ... maybe they are just "dis-interested" (as you say) that they did not even pre-arrange ANY blood draws or appointments for you since pre-treatment! Maybe they ARE too cheap? to order bloodwork - I just find that hard to fathom. Most folk are getting 4 week draws (LFT's and PCR). Even if your doc WAS cheap and callous enough to make you wait for bloods as long as EOT+12 weeks, did he not give you a clue that he would NOT be ordering you ANY bloodwork, or would NOT be wanting to see you until AFTER treatment was finished?? THAT situ is just weird (to me)!! I don't like your doc! Not sure if he is a general practitioner, or if he is a hep doc, but if I had seen this coming down the pipeline, I would have pushed you to find any temporary "additional" doc (any port in a storm), even a family doc, a GP, whatever, just somebody, who would have given you lab requisitions to get you "some kind" of bloodwork in the interim (preferably LFT's and PCR at 4 weeks), while you waited to see your doc again in Nov!! Brother, these docs! Don't they get it, that it is a reliefe to see any chnage to the good as you go along?

Everyone is so confident (me included), and justifiably so, that 12 weeks of sof/vel cures us ... but really!!, the stress of NO feedback is hard to take! Not fair to you - you will just have to be satisfied seeing all of us doing so well, and know, that you are too!!

Ahhh, I just looove the smell of that epclusa in the mornin!! smile C.

Phoenix17 · Senior Member

Awesome Allison! Terrific news! You are on your way to SVR!

Pablito · Senior Member

Congrats Alison. Being UND at week 4 correlates nearly 100% with SVR so you are most certainly going to get cured.

Miandre - liver pains during treatment (and after treatment for that matter) are common. I've no evidence to back this up but I think your theory that this is the liver regenerating is true. I had them during treatment and for about a month or so after in exactly the same place, i.e. below the right rib cage.

Such an exciting spot this Ecplupser's Corner at the mo!

Pablo

Allison · Member

Thanks for the support Ruby. I really appreciate it.

Ruby Red · Senior Member

Bravo Allison!!! This is such great news!! I'm so happy for you, it's quite a touching moment really!!

You've got this!!!

Tig · Admin

Mike,

Your experience with the doctor is not uncommon either. Some are constrained by treatment guidelines that say periodic liver function and blood count screenings are all that's needed during treatment. Then a RNA viral load at week 12 after you finish. Doctors that are real busy delegate some care onto nurses and PA's, who follow orders. It is frustrating to be left in limbo land, but I expect you to do well in spite of their testing protocol. It can be a anxiety filled period of time, but you should remain confident. These really are amazing times in the treatment of HCV!

Allison · Member

Thanks Tig!

miandre · Newbie

Wow Tig, thank you so much for offering that knowledge.... I am so grateful to hear reassurance.... I was seriously thinking the worst things! I know it may seem odd that I haven't had any blood work done, but to be honest my doctor seemed generally uninterested in my case, just told me he would work to get me on the medicine, and here I am about to get off and his office is apparently booked until the 19th of November. Frustrating!

Tig · Admin

Hey Mike,

The feeling you're experiencing isn't uncommon. Occasionally the supporting structure around the liver is sensitive as the inflammation subsides. The liver itself has no pain receptors. There is also a loop of the large intestine that sits in the exact same area that very often causes some discomfort during treatment. Try increasing your water intake and be sure you are eating a nutritious high fiber diet. Don't worry!

miandre · Newbie

Hi to all in the Epclusa Corner ^_^ !!

I hope everyone here is doing well. However, I came here to ask a question to you all. I've been experiencing pain on my right side, which is the same pain I would get when I actively had Hep C, just a lot more mild, doesn't hurt but is obviously there. I'm almost done my 3rd bottle, about 10 days left, and my treatment will be over. I'm not able to see a doctor until November 19, which will be a few weeks after taking my last Epclusa pill. I was just wondering to you all, has anyone else experienced this "feeling" in your right side? Is it my liver regenerating? I have no idea, I am just scared because I haven't had any blood work since I began the medicine and I'm worried that maybe it didn't work and I may still have it .... I've been freaking myself out pretty bad. I don't know if maybe I have some type of undocumented illness/issue with my body that I have yet to discover... I just want to know if anyone else has been experiencing that "full" feeling on the right hand side of their torso like I have. I feel like maybe it didn't work and they'll tell me sorry but I'm part of the 10% it doesn't work for....Genotype 3... just pretty worried, I appreciate the answers...thank you everyone and may your treatment be successful, in God's hands!!

Sincerely

Mike

Tig · Admin

Hi Allison,

That's excellent! Big congrats go out to you, woot!! This is a sure sign of great days ahead. The now normal LFT's indicate a happy liver that is on the road to recovery. The fatigue while on treatment isn't uncommon and will improve. You have a battle going on inside you and the Dragon is losing ground. Your body requires that extra energy to fight. Do your best to give yourself the extra hydration and nutrition needed to win. Recovery is sure to follow! Good luck smile

Allison · Member

Thank you Razor, I'm looking forward to hearing everyone else's great results as well!

Razor Blade · Member

Excellent news Allison. Well done.

Allison · Member

Hello, My 4 week labs are undetected. All other LFT's within normal range. Feeling tired some days but other than that, ok. Good luck to everyone!

Ruby Red · Senior Member

RB

I'm so happy to hear you're feeling better, that's good news in itself! Yes there are a few of us going for our tests and I must agree, the anticipation does feel like Christmas!! Looking forward to hearing everyone's results smile

Razor Blade · Member

Feeling gr8 again, and its so good to see lots of us waiting for 4 week tests. Rather exciting actually.

Feels like xmas lol.

Canuck · Guru

Phoenix,

Oh ya, the velpa anthem!! I'll find it and post it again, as soon as Wendy posts that mantra dog video again ... kill, KILL, KIIILLLL! wink C.

Phoenix17 · Senior Member

Let us know Allison! Waiting is hard. It seems like we are waiting for something all the time. Where is your waiting song Canuck? smile

Thanks Canuck! It will be awesome to see everyone's results. Love the quote from Apocalypse Now. biggrin

Glad you are feeling great RB.

Allison · Member

Thanks for welcoming me everyone! I'm genotype 2b. My viral load results are in but I cannot view them online until tomorrow morning. I'll let everyone know as soon as I can. Best wishes to everyone.

Canuck · Guru

Razor,

With your prior unrewarding experience with interferon and riba, it is no surprize to feel uncertain.

The most devastating "sides" we experience from treatment could be "fear and doubt".

It is sometimes hard to detect the other overwhelming building sides of "hope and joy". Watch out for those, they're coming! wink C.

Canuck · Guru

Hi Allison,

Glad to see you here! and glad you got epclusa. Wow, 31 days already! What GT are you? We will all be looking forward to hearing more from you, and on your soon to come 4 week VL! smile C.

Phoenix - you go girl!, I can't wait to see your VL, and Ruby's, and the SO MANY lucky folk here who are now on epclusa!!

I LOVE the smell of epclusa in the mornin'!! (as Robert Duvall would have put it in Apocalypse Now)!! Victory! smile C.

Pablito · Senior Member

Alison - welcome to the forum. Everyone seems to be getting Ecplupsa these days, which is great because it its a great drug.

Canuck - I love the phrase 'insult' in relation to alcohol/drugs. That's exactly what they are!

JimmyK · Guru

Razor Blade wrote:
Thanks Guys n gals for all the moral support.
As it happens, whether they're working or not i feel pretty gr8 today, infact the best day since i started.

Well that there is some great news! Glad to hear it and oh yes, it's working. wink

JimmyK

Razor Blade · Member

Thanks Guys n gals for all the moral support.

As it happens, whether they're working or not i feel pretty gr8 today, infact the best day since i started. smile

Phoenix17 · Senior Member

Welcome Allison! Great to meet you. I am starting my 2nd bottle of Epclusa tomorrow. I will be going in tomorrow to have my 4 week labs as well. There are a few of us within a few days of each other that are on treatment with Epclusa. Except for a few headaches in the first few weeks and being tired, I am feeling really good. When you get your labs back, let us know!

Allison · Member

Hello everyone,

I'm very glad to be here, I've been trying to get onto this forum for a few weeks. I am on day 31 of epclusa, waiting on the results of my 4 week labs. I have some good days and some bad days but it's very much worth it. Take care!

Canuck · Guru

Razor,

I concur ++ with Cinnamon Girl and Pablito. It is a fretful time for anyone going through treatment, and especially hard to find reassurances along the way, when you have been forced to do most of the heavy lifting alone! Focus on the obvious good results in front of you. You are doing a good job.

With frequent blood draws, you WILL see more fluctuations (up and down) that most people never have an opportunity to see. As you go along and see the continuing downtrending labs continue (despite any frequent looks at stalls or fluctuations) you will find more and more reassurance.

Don't fret about the constipation episode, just keep on it and prevent it. Lots of water please, for multiple reasons. It only helps everything. Downing drugs or alcohol is a worse insult to your liver in it's compromized position IMHO. Important to treat all body systems with tender, loving care.

Go have a fibroscan for fun. Feed yourself healthily, try to get more rest. Be pleased with your lab responses to the drugs thus far. It will work.

You have had a nice telling ALT/AST drop. I can't recall if you had a prior GGT to compare to, I don't think so?, but at 72, it is not very elevated (if your lab scale is similar to the North American scale of the range being up to 61 U/L for males). Sometimes GGT (never minding HCV) can be up just in response to alcohol or drug insult. You may well see a drop GGT too over time.

Focus on your obvious good response, keep treating yourself well. Your doing it! smile C.

Pablito · Senior Member

Hi Razor

Cinnamon Girl is right: your LFTs wouldn't have come down if the drugs were fake. They've come up a bit but they tend to fluctuate anyway and are still in the normal range, or just slightly above, which is essentially the same as normal.

Doctors feel disempowered when we go the generic route. 12 weeks is the recommended length for Eclupsa even for people with cirrhosis.

Don't panic!

Pablo

Cinnamon Girl · Guru

Hi RB,

I really wouldn`t jump to any conclusions at this point, remember that your liver enzymes have dropped quite significantly from what you posted they were at the outset (AST - 93, ALT - 81), which to me indicates that your meds are genuine and that they are working. It`s actually quite usual for some fluctuation to occur in these numbers and because you`re having such frequent blood tests you are seeing quite a variation. Wait and see what your viral load test is, and if you`re still not UND then please don`t despair!

About the dosage, 12 weeks is standard for Epclusa, so you`re on track with that, and ribavirin is only prescribed with it for those with advanced cirrhosis (decompensated cirrhosis). See this link for the full prescribing info...

Epclusa Prescribing Info

Your WBC count is a little low at 3,700 (normal range is 3,500 - 10,000) but I wouldn`t be too concerned with that either. I can imagine how stressful it must be in your situation but you seem to be staying on top of it, so well done for that.

Good luck with your VL result, try not to stress and make sure you`re drinking plenty of good quality water to help with the side effects... and to keep everything moving along... smile

Razor Blade · Member

sorry, cant upload/ attach. But all other bloodwork ok except GGT 72 and WBC 3700 !

Razor Blade · Member

Day 34 update

Hi All,

Thanks everyone for your concern and support.

After last weeks episode, yesterday and today i feel pretty good again, and with the prunes and bran things are starting to move along nicely.

I saw the Head Hep C Honcho in Thailand Saturday pm, obvisually new his stuff, However, he wasnt impressed with my meds, saying he has a patient who bought meds from Bangladesh and they were duff!

I got their contact through a lady on FB in the UK (geno 3a same as me) who was undetected after 5 weeks using Darvoni (not Harvoni) sofosbuvir and daklatasvir (it was actually the first pan genotype mono therapy available, before Epclusa) . He said quality can vary from batch to batch, i pointed out this was the first batch they had made, and he scoffed again, replying that it could be unreliable. (I enclose their quality control slip, how honest/reliable not sure).

Anyway, he gave me a list of bloods to do, i went this morning and just had some of the results back, a bit pissed of, the ALT and AST have risen quite a lot AST 49 ALT 48, up by 17! :(

see attached. I know we are not doctors, but it dont look good.

Did VL today and should have result Friday, but, you know, i am not to hopeful.

The other thing the Doc said was i should be taking in conjunction with Ribavarin or taking for 24 weeks not 12, so all in all not very positive.

It makes me wonder if last weeks constipation problems have contributed to this. I was in a lot of pain, in the liver area aswell.

Ok guys n gals, let you know when i get VL result.

-- Edited by Razor Blade on Monday 10th of October 2016 09:12:33 AM

-- Edited by Razor Blade on Monday 10th of October 2016 09:14:55 AM

Ruby Red · Senior Member

FYI My meds come in a blister pack as prescribed by my Doctor. At first I was thinking "it's only 1 pill per day" but I have almost forgotten myself. I have set the alarm on my phone for 7pm and with the blister pack I am certain every single day. This helps me :)

Canuck · Guru

Hi again Dave z,

So, you must be at about week 2? Glad you are finding the water is helping some - do keep it up.

I know about the brain fog!!, (before, during and after treatment!) but especially dense it was (for me) during treatment, mind you, my heightened fog on treatment I blamed mostly on the VOX (I think), while on my sof/vel/vox triple. I too "forgot" to take pills, and could have also easily doubled up, as I did not start off using a pill counter box either. I was late one day - I just plain "forgot" to take a pill! (More than once) I had to labouriously empty out my bottle, and count up the pills, to ascertain if indeed I had (or had not ) taken a pill!! I had no excuse for not using a proper pill counter box, as I even had one in the house. I never did double up on a pill though (even though I had to count the entire bottle to make sure one day!!), and, I was only a few hours late one day, but it was a good lesson learned.

It is safer to use a pill counter box - you can tell at a glance what you have taken (or not). (That's assuming I knew what day of the week it was! haha I was known to forget the month, the year, my age, how to drive ... sigh.)

I don't know how many hours apart you took your 2 pills that day, nothing to do about that now, hope you drank some extra extra water, but do mention "that day" you took an extra pill to your doc when you see him, he may or may not want to add one extra pill to the end of your treatment to make up - I kinda doubt it though. Keep flooding yourself with water. smile C.

-- Edited by Canuck on Monday 10th of October 2016 03:24:43 AM

Dave z · Newbie

Things seem to be getting a little better until I had so much brain fog last night I took 2 pills, put the pills in a daily dispenser thing today. Water seems to help the body a lot.

JimmyK · Guru

I took probiotics while on Harvoni but I agree with Wendy ask your Doctor.

That said assuming they say yes forget about the store bought yogurts. The pasteurization process knocks out the probiotics.

WATER! Keep things moving. Hang in there SVR is around the corner!

JimmyK

wendyo · Guru

R - when you talk to your doc, also ask if you can take a probiotic.

HYDRATE

Ruby Red · Senior Member

Hi RB

You have been through so much to say the least and you have managed each and every step. Epclusa seems to have little hurdles to jump and yes the digestive system seems to be one of them. Everyone is different so it only makes sense that we would experience the sides to different degrees. I have to say although I had a bit of a crummy day today, each day is different and for me has been quite manageable. I have been on treatment (interferon/riba 2010) and the side effects were horrendous so for me what I'm experiencing is quite easy. I do drink water, lots of water yet it seems I have a thirst that can't be quenched lol so I keep drinking water lol

There is a battle going on within us, a battle that is being won so we must keep our eyes on the prize!

You're doing great!!

Phoenix17 · Senior Member

Sorry you are feeling yucky RB. I haven't had constipation, I drink a gallon of water a day and it helps! Hope you are feeling better. I know it's a awful feeling. bleh

I am feeling better. I don't think it had anything to do with Epclusa. I think with my Dad's passing and all the emotional stuff, it just wore me out. Life does that to you sometimes. I need to take better care of myself. More Naps!

Poo talk is ok. biggrin I work with little kids, so I talk about it on a daily basis.

Thanks Canuck. You are right. We are on powerful drugs, and have to realize that sometimes the body just feels it. Most of this past month I have been feeling really good, so a few days of feeling tired and out of sorts is not too bad. Even people without hep c feel like this sometimes. I think we notice it more. I do feel better than before treatment though!

Pablito · Senior Member

Well Razor, you've had quite the week. There are more GI side-effects with Ecplupsa than the other DAAs. Constipation is the enemy for people with HCV...our livers already struggle to clear toxins from the body so if we're, ah-hm, bunged up too then the toxins overload can feel awful.

Are you drinking loads of water? It helps constipation and is generally a good thing whilst on DAAs.

Canuck · Guru

Hi Phoenix and Razor,

Sorry you are feeling crumby, both in your own ways.

I am actually a little bit surprized, NOT a lot surprized, but .... just a little.

Mostly, just because I had hoped you would both breeze through this, feeling not "too" bad, at all! Or, that you might notice things, less, as you continued on. Perhaps this will still happen, a "lessening". tkflex36 and webtomass (and I think oombant) said they did really had no discernible sides!! I wish some of our other epclusians would check in pretty soon for feedback on how they are experiencing it now. You can always ring some of their doorbells to inquire of CandaceV or Ivery maybe, and I wonder how miandre is feeling as I recall they are all further along in their courses than you two. Ruby has reported some yuk too but seems to be truckin.

But everyone IS dif!! You have been and ARE sick, you ARE on strong meds, and it IS a very mighty war being waged inside your body. How you feel may simply be a reflection of how a poor body has to deal with it all, the toxicity of the virus actually being killed off within you and the aftermath clean-up your body is being required to deal with, and may not just sides from the drugs.

Warning! - Razor - poo talk coming! I too had constipation troubles, you NEED to pound down the water, perhaps MUCH more than you may think!! How much are you drinking?? REALLY important, in many ways, for multiple reasons. Be "pro-active" with your water and fiber, prevent constipation with water and dietary measures. "After the fact" actions do not help much, as you found out, just makes it harder (sorry, no pun intended). Back log will, no doubt, make you feel only more yucky. Do everything you can via water and diet-wise to keep on it, control it. Your back log may indeed be telling you that you have NOT had an adequate water intake.

I know, for a fact!!, that adequate water helped me reduce my headaches, constipation and some of the yuk feelings. I REALLY regretted not drinking much more, sooner!! It is very easy to not want to drink more water, to think you ARE getting enough, you may be surprized that when you do increase it, it does help.

I can't help you in sorting out if you have "sides" due only to vel/sof, as I took sof/vel/vox, and I am convinced (so far) in retrospect, that my yuk feeling through treatment was because of pre-existing conditions, the VOX, not drinking enough water, and how my body just had it's particular way of dealing with the inner war going on. Headaches are listed as common side affect of sof (and vel) and most daa's for that matter. I had a tough time with fatigue and other symptoms, but so I did before treatment too.

I have learned tho, that water DOES help on treatment, dilution is one solution to the pollution.

I hope during yuk periods you folk are able to knock off work and sleep/rest as the body directs. Fuel, coddle and water yourselves well. There is a nice reward coming. smile C.

Razor Blade · Member

Hi All,

Interesting Pheonix, After a crummy start and then week 3 and 4 feeling almost human, i have been terrible this week. Monday pm started to feel tired, Tuesday i had to go to work but was back in my pit by 2pm and the same for Wednesday, except Wednesday also saw an onslaught of excessive stomach and abdomen (below RHS rib cage) pains, also tuesday onwards the fatigue and fog was intense with those muzzy headaches aswell. Wednesday midnight i went shopping as i decided i was constipated, found the prunes and bran section and went home to feast ! Thursday a.m. i was in agony, so also took laxative tabs, by the afternoon i thought i was dying, i could hardly move with the pain. I nearly didn't take my meds as i feared something was askew. I managed some movements (dont like pooh talk) and went to bed 8pm, (first ever for me) and didnt wake up properly till 12.30pm today ! I had to go to work for an hour but it was difficult, kept making mistakes, and i wasnt comfortable driving. I am at home now 11.20 pm and feeling better than i have all week, tummy a bit sore. Really stange this, constipation was something i was not expecting ! the opposite if anything.

Found a top Hepatologist (Teerha Piratvisuth) in BKK, but he only works Saturdays, so i have requested an appointment, it will be good to talk to a proper Doc.

Good luck everyone.

Phoenix17 · Senior Member

Thanks friends! Time does go by way too fast. I find that the older you get the faster the years seem to fly.

It will be exciting to see those levels fall! Bye Bye dragon. biggrin

Very tired and kind of out of it today. Not sure whats up. i think I need more sleep. it could be that people I work with have either coughs or tummy issues. I haven't felt this way since before treatment. Just have to roll with it. yawn Sleep is good!

(yes I drank a gallon of water today!)

Pablito · Senior Member

How time flies! Yes, your week 4 VLs should be UND or <15 IU/ml, but if they aren't don't fret. This happens to some people, like me. As long as there is a very substantial drop a few hundred stragglers at week 4 is not something to stress about.

Ruby Red · Senior Member

Phoenix17, It's amazing how these 3 weeks have flown by...Week four whoohoo! I'm envisioning our results to read UNDETECTED! I'm feeling good about all of our brother and sisters who are in treatment too :)

ps I know the brain fog is part and parcel of all of this but I just don't want to give that rotten virus any more credit for anything, anymore

Thanks Canuck for being excited for us

Canuck · Guru

And me too!, waiting right along with you for your 4 week PCR results!! They will be grand, I am sure.

With all the "fears" that come with this un-nerving territory we find ourselves in, we are "pre-loaded", the tests are fraught with anticipation, doubt, mixed with titillating hope that all will be OK again. Nothing we can do about the angst waiting, except, maybe practice, as Ruby did, in tasting that sweetest nectarine ever - I know your tests will give you some "like" sweet relief, each one of my PCR's did. Wishing you all marked crashes to buoy you on your way! smile C.

Phoenix17 · Senior Member

Hi Ruby - The brain fog could be due to my age too! biggrin It's hard to tell sometimes. part of it is from the hep c though. I should get my labs back pretty quick. I will probably see the results before my doc. I get a email message when they are ready to view. I can look at all my test results right away. I knew I had hep c before my regular doc did.

This month has gone by very fast. I will be waiting for results with you!

Ruby Red · Senior Member

Hi Liz

Aww sorry to hear that crummy brain fog is still hanging around :( I'm sure it will pass soon...I blame mine on my age lol

I can't believe how quick this time is going. Week four starts Wednesday for me, next Wednesday I go for my blood work. Unfortunately here the results take up to 2 weeks or more, as it is sent out of town to one of the government labs. (the health board keeps track of all results here) My next doctor's appointment is October 31st and the results will be revealed smile Of course unless I get too impatient and call earlier lol

Phoenix17 · Senior Member

Thanks Tig and Ruby. It is an exciting time! I know the brain fog will lift, but i am not exactly the patient type.

Miandre - Like Canuck said you should of had your 4 week blood work. How did it go?

Keep on going friends! Thanks for the support.

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