Hep C Discussion Forum

robertsamx · Guru

RE: Epcluser's Corner

Lindsmatt52 · Senior Member

Thank you Tig. Please take care of yourself! We're all worried about you and the other Floridians.

Tig · Admin

Senokot and Colace should be fine, Lindsay. It's the Milk of Magnesia (Magnesium) that you have to be cautious with. The natural, vegetable based products and softeners are okay, it's when you get into the chemical based drugs that you have to be careful.

Lindsmatt52 · Senior Member

Hey Lamont- I was reading through some of the posts on Epclusa to see what I could find about constipation and found this thread with you, Tig and Canuck. Love this board because nothing is off limits! Anyhoo-I am suffering from the same malady and wondered if you are still having issues and if not, did you find a solution? Also, this is not a new problem for me and I take a senokot and two colace every day, even before I started treatment. You said something in your comments about them having negative sides. I didn't think they interacted negatively with Epclusa, but not sure after reading that. Can you enlighten me, please? Thanks. So nice to have an Epclusa buddy!

LamontCranston · Senior Member

Canuck, you'd think the ProBiotic thing was total balderdash, but considering the gallons of Prune Juice, fiber supplements, laxatives, and the gallons and gallons of water it is the most consistent thing I have tried.

Too bad the "herbal" and "natural"solutions like senna or aloe have such negative sides, ...and there is something about the taste of American sold Milk of Magnesia. At least in the UK, they have that peppermint flavored stuff. And too bad that Epclusa should not be taken while using Milk of Magnesia. It raises gastric PH and it not "allowed" at least according to the PDA info and 3 Drug Interaction checkers.

This is actually a good tool. I wonder if docs and pharms ever check for interactions?

Oh, and travel is definitely a thing that can upset the perfect balance. You have to eat what is put in front of you, there may not be safe water to drink from a tap, and well, other factors. I was doing great last Spring, then my wife and I went to Europe for a few weeks, then a week after getting home, off to Idaho-Montana-Wyoming to visit the trout. At least up there, we have our own place, with a kitchen and so forth, but the routine is still disrupted, regardless of where you are when you aren't tucked in at home.

-- Edited by LamontCranston on Thursday 3rd of August 2017 11:09:49 AM

Canuck · Guru

Ah, shoulda known. You are a thorough kinda guy. You ARE experienced, tried more things than I ever have. Only had repeated "fleets" one time, for procedural purposes, and some other dreadfully strong pills they gave me once - forget what they were, found them not pleasant, nor did I find anything "strong" pleasant! Tried senna a bit, colace once, and a few you mentioned, didn't stick with them tho. Ya, I think we wandered together before, down the aisles of the prune dept, on another thread. Sigh, it does get hard doesn't it. (oh dear, did i really say that!) I tend to try the softer (oops) measures first, diet and water. For me, if I truly applied myself with consistency (darn it!), dietary and fluid tricks, that would get me by. Right now, probiotics, water, fruits, cereals, small daily dose of probiotics, and periodic small doses of soluable fibre/cellulose keeps me on the right tract (oh dear).

Refreshingly, Tig went old school, which indeedy IS also tried and true, good ole basic mechanics, he's so base at times (hee hee) - the basics do work tho, we can't forget about relying on those too when it comes right down to it. I guess we cannot leave out the lowly gylcerine sup here either (in a pinch). You both note the need to seperate mag from epclusa by at least 4 hours to keep the vel up - could ask the doc about mag use.

The horrible trick is just to keep ahead of the game, with the least amount of pain, wear and tear. I was surprized as well, how bunged up I got while on treatment, I had to just keep undoo-ing it with water and diet. One small to med. daily dose of cellu-fibro-lax for about 3 days, could turn things around, but i was also surprised the water did not keep me going good enough - it HAD to be a LOT of water, EXTRA (just for my gut alone, it seemed) as well as the diet and the fiber, very consistently applied, and I had to do it ALL 3 things plus my probiotic all at the same time. The water was the most critical of the mix. I still do these measures.

Talk about pressure! Regularity IS better (anytime really) but also while on these drugs, as the excretion of metabolised drug waste is partly handled by kidneys and the rest by gastro, and we do not really want to be packin the "job" around for days on end (sorry about all the puns, I just can seem to help myself!) - it won't kill you, as I know, that you know, how not to let it get beyond control (the sluggish uncooperative gut). But it would just be nice, for change, not to have to be working on being regular, wouldn't it! Sigh.

I too am very much hoping and expecting that you are going to have changes to the good, in the near future smile , right after you have lost this virus forever, and gain your new normal. C.

LamontCranston · Senior Member

Canuck
Yeah, I have become a minor sage in the elimination dept over the past 2 years. I have done it all. Fiber, no fiber, Dr Schulzes Intestinal pills, Senna, Colace, Milk of Magnesia, lactulose (yuck!) , Miralax, and all combinations of them with gallons of water, prune juice, pomegranate juice, bran flakes, well......you get the idea.

What works best for me is senna, but it can cause discoloration in the colon ( i know, weird, eh?) In fact, I was using it regularly until I had my colonoscopy last year, and the gastro reported seeing some of that effect. So I poked around more and found a ProBiotic (Phillips) that works pretty good to keep my system in synch, but it stopped working about a week ago.

I can't believe I am drinking SO much water and am having any constipation, but there it is. Milk of Magnesia is on the list of Moderate Interactions, so even though it is my failsafe when my ProBiotic fails, I am avoiding it as I don't want to mess up the Epclusa treatment.

I did 300 mg of colcace and 2 senna tabs last night and was liberated this AM, but like I said, I want to avoid anything that has other issues. My absolute last resort are Biscodyl butt-rockets, crude but effective, even better than those Fleet Drano Flushes actually. No kidding. My guess is that they are the safest way, since it only operates at the business end of things, bit like orally taken laxatives.

My hope is that once my VL comes down, my liver will start doing it's job like it is supposed to. I even threw in a few Hail Marys last night for good measure.

Tig · Admin

Okay, you two asked for it....... Can I safely assume you are both (get ready) Full of It? wink

I wonder if there is a window of time where Milk of Mag would be a mild enough laxative that wouldn't cause discomfort. I would check that the magnesium could be taken with the Velpa. Post 4 hour admin times, perhaps? Any mild laxative typically draws water into the colon, so increasing fluids would be required. I'm sure that really appeals to you, too.

Now the other favorite and relatively immediate method involves a nozzle and a posterior fluid infusion, if'n you know what I mean? Oil based will grease the path and help things along. A saline based formula just cleans and fluffs up the product a bit. Nothing works better when you absolutely, positively gotta go.

I feel the need to remind you, stay away from the single ply TP...

Canuck · Guru

Lamont,

You are talking to a (historially) chronically dehydrated/constipated person, gee, you may be wondering to yourself, did she not know better, that they can go hand in hand??.

I did know better, even before I knew I had HCV! Perhaps, unknowinly, having HCV for so many decades may also have had some effect on my gut, but still, i know my slow to adopt water intake learning curve did show me, time and time again, I was ALWAYS "better" with more water.

When I was on epclusa and vox (Vosevi), for a while (a short while) I thought I may have lucked out and have loose stools for while as a "side",(my trial people scoffed at me BTW, poo-poo'ed me when i said I thought maybe I was going to be having loose stools) - it WAS listed as a possible side, although that side was shown to be low in Vosevi and lower still in epclusa plain. Yes the wierd the poopy things I hoped for, did not didn't last - some brief temporary upheaval in easy production, and that back to more the norm for me. Water was my only saviour during treatment, that, and sometimes tiny dosings of fibro-lax (psyllium) and fibre/soluable fibre diet (my more raw foods, fruits and veggies and cereals). I did try hard to keep the see-saw of the water/psyllium and other variables in balance - travel, increased activity, hot weather have real influences on my bowel performance, I am still vigilant to force myself to drink enough water and eat like a constipated person should - water has been my very best #1 (haha) best friend in the battle, fibre/diet #2 (haha).

I'm with you on that "sides menu" thing!

I'm craving cupcakes for some reason. wink C.

LamontCranston · Senior Member

Ok, Pill #6 is 14.5 hours ago, and lordy, I was really hoping for that "Loose Caboose" side effect, but instead I am jammed up worse than ever.
I've gurgled down at least 4 quarts of water every day since the 25th of July, and aside from having to pee every 30 minutes, and feeling volcanically pissed off over absolutely nothing at all, the only apparent side is the opposite of what I had expected.

Too bad they don't have a "Sides Menu" for Epclusa. Choose the 3 you can handle and the 3 you can't....

Hoping this will ease up, I had actually settled in to a fairly steady "regularity" after a couple of years battling the back up. Perhaps it is the stress of having expectations etc. We'll see.

-- Edited by LamontCranston on Wednesday 2nd of August 2017 03:00:24 PM

LamontCranston · Senior Member

Canuck, Thanks for the encouragement!

What I am thinking is that is a time of day when I will mostly likely be home etc. Got all my labs done, again and all things considered, you wouldn't think I was sick with anything. ALT/AST normal, and everything else in normal ranges. If I wasn't still fatigued a lot, with an intermittent low grade fever and ongoing digestive problems.

This week was probably "Everybody is off this week" at my HMO (Kaiser NorCal) so I am guessing that I'll get a call this coming week to come in and pick up my meds. (I Hope!)

In the meantime, I have decided to do some semi-serious motorcycle shopping so when treatment is over, I can celebrate by strafing the Shoreline Highway from SF to Oregon, like a retired codger ought to be doing.

Can't wait to check in on my first day of treatment, at 9:00 PM PDT....

Canuck · Guru

Lamont,

Sounds like a plan! (to take it in the evening) - it just all depends on what YOU think is best. Had I not been in a trial (and had to take my added "vox" drug with a meal) I may have opted to take it in the evening like you.

If you think that evening is good time for you, go for it.

Everybody seems to have some considerations that should be taken into account when planning a dose time (normal routines - hours they sleep/work/rise, perhaps taking anti-virals totally separate from any other prescibed meds you are normally taking). For me, my lunchtime dosing only happened to satisfy the requirement of taking the vox component with a meal, and, the other important reason was that my lunchtime was the one meal I could count on getting in me on time, thus my pill (with food) would be on time.

You do NOT have to take your epclusa with a meal, so you have more choice.

Just on principal (when there is NO contraindication) I generally opt to take any med with food, just personal choice. Any drug that might be hard on my stomache, like if I had to take analgesics or anti-inflammatories for example (those are extremely rare occasions BTW), I will usually will try to take them with some food.

If you have a known sensitive stomache and find many drugs bother your stomache then I would reccommend a meal or small snack with your epclusa (AND lots of water of course!), but I do NOT anticipate epclusa will bother your stomache much at all, I had some burgling/gurgling in my stomache after each dose (it was not a distressful sensation at all, NOT nausea, just weird and noticeable at first), eventually the burgling lessened as I progressed further into my treatment (I think it was the vox).

Others, afraid of "sides", thought if they took it at night they might sleep through any sides - maybe - I wouldn't know, maybe you won't feel much of ANYTHING on epclusa, just like others have not. I am betting you will NOT feel much at all.

I did get some headaches, but I am SURE it was because I did not always drink enough water! Ya, ya - lessons learned too late!

I had some pretty profound fatigue BEFORE my treatment, and it did not leave just because I was on treatment, and it took some time after treatment for it to improve, but it did.

Ya, your doc and pharm people will/should consider all meds/or supplements you might be on as far as what not to consume with epclusa. Thus why it is best to preview anything you "might" want to (or need to) take during treatment with them before treatment starts.

I will be very happy for your day one! Soon. smile C.

LamontCranston · Senior Member

RE: Epcluser's Corner (Time of Day/)

Canuck · Guru

RE: Epcluser's Corner

Jaggles · Senior Member

Hahaaa Canuck you are soooo smart...apologies for only mentioning your humour which I absolutely love.....you are all so much more knowledgeable than any doctor I have met since I got this....and now I get what ya saying about the chronic thing...it takes me a while but I understand now. Just hard to believe i didnt get diagnosed MUCH earlier....My graduation is making me feel a little wobbly as I havnt had tests since week 8 and my appointment to discuss end of treatment tests is not until July 11th biggrin

so we will see....I have had a minor chest infection ( contracted from my manager who is terribly unhygienic and shares her filthy germs with us all) I formally complained about her .....she is supposed to be a professIonal....I got a Fit For Work note so if she continues to cough and splutter around the building I will work from home.....Doctor put me on amoxicillan 5 days and I'm ok except now have oral thrush so got to see a doctor tomorrow...apart from that I've been absolutely fine.

I'm so close to the finishing line it's all I can think about .....being Hep C and Epclusa free.!! I've given myself every chance by quitting smoking completely...zero alcohol and eating vast amounts of healthy food so if it all goes Pete Tong it's not because I haven't given it my best...

Canuck and hepc3....our book should be called Hepo-pausal...surviving the anger and frustration you never expected biggrin

ooof....forgot to mention ...grand child due yesterday....Lille monkey still hasn't appeared...any day now

not having to take that pill at 7.50 each day is going to be weird but extremely wonderful.

Thanks again guys ...you have given me your time and encouragement....forever in your debt really xxxxxx love my hep family....if it were possible I would love to meet you all and see faces and buy beers biggrin

Hugs all round... <3

..

-- Edited by Jaggles on Wednesday 21st of June 2017 06:16:09 PM

-- Edited by Jaggles on Wednesday 21st of June 2017 06:17:22 PM

Tig · Admin

Canuck said: "Does that tidbit qualify me for the smart section?? If not, well, I'll keep trying"

That's all it took, you're now a fully vetted and qualified smart people! Or is that person? A gaggle of smarties? I don't know, I might be losing some of those smarts as time goes by. Good thing is, I don't realize it. Especially considering the continual lapses of direction. You know, which way do I go and then what am I doing here when I get there! It's all good, because there are people always telling me where to go! I'm looking for a place called "Get Lost", ever heard of it? Must be a lot of like minded folks there, lol!

We're anxious for your graduation day, Jags! Is that possible already? You have done so well, it's going to be a joyous celebration when you're through. We'll be on the edge of our seats waiting!

Canuck · Guru

Ah my lovely irrepressibly happy Jaggles. Who ever said taking drugs couldn't make you feel happier!

How I enjoy your posts!

Now, I sense you were trying to kindly pay me some sort of compliment in that post of yours, but really dear, I already know I am in the funny (as in "odd") catagory, please, why can't you just lump me in with JK and Tig in the smart section!

Ok, now, I am only going tell you this ten more times! "Chronic" is technically (clinically defined) as only 6 months. If you contracted hepc in 1982, then likely by 1983, you were already deemed chronic then, just no one knew.

You just happened to be feeling worse and worse, more and more symptoms and feeling more and more ill from your hepc the longer you were packing it, until you finally got diagnosed - you were already loooooong chronic, way back in '83!

Does that tidbit qualify me for the smart section?? If not, well, I'll keep trying.

Ya, you, me and hepcgt3 should write a book about how not to get daignosed by the ESP method, or by the pre or post menopausal HRT method. I did discover one important telling indicator of having "undiagnosed" HCV, they may repeatedly and periodically offer you anti-depressants! I am still debating whether this is a reliable sign! hee hee

So nice Jaggles, only 7 more sleeps, and your done! biggrin C.

Jaggles · Senior Member

Hi hepcg3 biggrin I was geno 3 but thanks to Epclusa was undetected at 2 weeks. I have 7 days left from tomorrow of 84 day course...it's been a doddle really. I've had the odd headache but just keep taking the water...5 litres a day ...the only side effect really is peeing alot. I too got it about 1982 and went undiagnosed for years ...too many times misdiagnosed and also put down to Menopause ...put on HRT ...the geno 3 Became chronic and that's when I began to get really ill very quick. Joint pain crippled and depressed, emotional , blurred vision , dizzy and chronic fatigue ...it got so bad...they gave me Epclusa just in time and I'm feeling Better than ever....so far so good and have my end of treatment tests a week Thursday .....scared a little but excited....so grateful for all the support I got from here they have all been amazing source of support , humour ( especially Canuck biggrin ) and wisdom (Tig and Jimmy ) you're in good hands here.

good luck ...never fear slaying the dragon...it just gets better x

J

-- Edited by Jaggles on Tuesday 20th of June 2017 02:04:29 PM

JimmyK · Guru

Hello Shelly, we are glad you are part of The Family here.

Many of us share in your frustration with "Modern Medicine", "Pharmaceutical Companies" and "Insurance".

Right now you may want to consider removing the rear view mirror. I cannot tell you how sickened I can become looking into mine. But we have a road ahead of us. In your case, treatment. Using us as your support through it. I remember once telling another Brother here who was having a hard time of things that if he wanted to yell at someone, yell at me. I will listen.

One thing I can tell you that is kind of exciting. You are going to become SVR 12 and beyond. Some of the Doctors or Staff you are frustrated with won't be dealing with you any longer because you WILL be cured.

There are many things just now being discovered. The call for Baby Boomers to be tested is rather new as an example. Not making an excuse for what may anger you but today is Shelly's Day.

We are glad you are here.

JimmyK

HepCGtype2 · Senior Member

Thanks, to the few of you. And a special hi to the other Canuck here lol

Hmmm.
I am presently awaiting an email with my A or B diagnosis. As soon as i receive that I will start a seperate thread.
All I can say at this point is that my body has been breaking down for the past 4-5 years but I was led to believe it was anything but Hep C.
Reading the forum now, I have to question why I did not know any of this before but it is almost as if i was kept in the dark.

I have been fighting really low energy for 4-5 years, low red cell counts, Anemia which has led to the first weight gain of my life,
which then caused other issues. I have, admittedly, been rather stymied wondering why my body was doing these odd things.
Other peculiar little things as well.

I was diagnosed, incorrectly last year with cancer and was told it was likely metastasized and then 2 weeks later, told i had stage 3 kidney disease. ( apparently I dont have that either )
At the time of diagnosis, I instinctively felt something wasn't right for if I were that ill, I thought i would know.
They put me through a ton of tests and I am cancer free and still not sure whose records they were reading instead of mine but my faith in the medical system has been weakened.

So reading these posts the past 2 days, at present i am a little wee bit angry.
For i am now grasping that this was never about aging, or potential pre or postmenopause or anything else they suggested, but all now appears to be Hep C related :P

Got a phone call today and I believe i will be likely starting within the week.
At the moment, admittedly not impressed with doctors :(

-- Edited by HepCGtype3 on Tuesday 13th of June 2017 03:52:41 PM

-- Edited by HepCGtype3 on Tuesday 13th of June 2017 03:53:25 PM

Canuck · Guru

Hi 3!

Welcome here, from an "X"-3, (and another fellow Canuck I note!, yay!). I was cured on epclusa (just like you will be), but I was in an epclusa trial, and i had another drug added - vox.

I am glad to see you, as a Canadian, getting epclusa (I assume) by "regular" prescription in our country! Because the roll-out of epclusa was so painfully slow in this country (as compared to the US or even the UK) and as it seems still hampered by differing provincial approvals, I am really wondering how many of us Canadians have actually recieved epclusa (by prescription)! It is a great drug and sorely needed, especially for us GT3's! You are very lucky to be offered this regime.

I learned, as a GT3a, that there is a very strong co-relation between GT3's and fatty livers (steatosis), and that this is a very marked co-relation, versus any other GT.

That's great (for you and your liver) that you have never been a drinker. It is good you have been followed with bi-annual labs since 1982, that you have had some fibroscans?, and that you believe your "numbers" are low (I assume you mean low or lowish LFT's or fibroscores). Have you also been having abdominal ultrasounds too?? Certain fibroscan machines are equipped with special measuremnt capabilities which can also provide a "number" helping to indicate levels of "fatty" liver (a CAP score), and not just how "stiff" your liver may be with fibrosis (measurement expressed in a kPa Fscore). Ultrasounds are also very telling as far a fatty livers (and other liver abnomalities). If you have not been having U/S's all along or if you have not yet had a pre-treatment U/S, if it were me, I would ask for one. What method(s) have they been using to assess your fatty liver for these last 4 or 5 years other than bloods or fibroscan? BTW, do they also do cholesterol panels on you?

Tig posted a good reference from Veterans Affairs today - in it, it reminds us that quite serious liver dysfunctions can be occuring while still holding normal or fairly normal LFT blood levels, this is another good reason for a myriad of differing tests to be done and the whole of the results compiled for a good guess at how and what your liver is doing, and where it is at in response to the HCV. One cannot guess soley by how they feel.

If your docs have watched you this long, and they are now inviting you to be treated, especially with a very excellent drug such as epclusa, do it. Your fatty liver could well be part and parcel of your HCV, you could consider that (alone) a major sign of your HCV, but you are right, without HCV everything in your body has a better chance to sort itself into good or better health.

I did not know I have been packing HCV from the '70's until 2015. At my 2015 diagnosis my fibroscan was 12 kPa's (F3), and my U/S showed "diffuse steatosis". Within only 6 months, my next fibroscan had advanced to 12.6 kP's (F4). Once treated, my kPa's started to drop, down to 11.8 (F3) and then to 4.7 (F0)!!! And, my post-treatment U/S made NO mention any steatosis, and a post-treatment CAT refered to my liver as "normal"!

You do need to be treated, and you are fortunate to be able to be offered epclusa. Any day, without HCV on it, is a very good day! smile C.

Tig · Admin

If you have no other reason or history of fatty liver (steatosis), then it's very likely the genotype 3 HCV that caused it. Treatment will stop the virus in it's tracks. That allows you a chance to regain some lost ground and improve your health. Nothing happens overnight, but it happens...

Stay in touch!

HepCGtype2 · Senior Member

Thank you.

I will do so as soon as i have the necessary information.

I am starting the treatment in about 4 weeks.

TBH, perhaps naive, I am not sure yet but its the fatty liver that concerned me more than the HepC so..one thing at a time.

Yes, started developing fatty liver about 4-5 years ago, out of the blue but they didnt focus upon it, only the HEP c.

-- Edited by HepCGtype3 on Monday 12th of June 2017 04:04:40 PM

JimmyK · Guru

Greetings,

If one has HepC it is important that person seek treatment. It does not get better. It does not go away. It is a Virus that needs to be eradicated. As long as you have it, you can spread it placing another at risk. Hep C kills. It killed my Brother in Law as well as my closest riding brother. Regardless of what some may say, it does not kill suddenly nor silently. It slowly erodes you. Lousy word "erode" when talking about your health.

The treatments today are simple, extremely effective, and generally without significant side effects. The folks before us went through Hell with treatment and generally failed.

If you are blessed with the ability to treat, you need to accept that blessing for what it is.

Welcome.

JimmyK

Tig · Admin

Hi Shelly,

Welcome to the group! We've got some good people and information, too. I think we'll be able to answer some of your questions and when you decide to start treatment, we will be here to cheer you on.

Genotype 3, do you know if it's subtype A or B? There are some differences in how the genotype behaves, if you don't know now, ask when you see your docs. Fatty liver is one of the unfortunate issues surrounding genotype 3. Considering the somewhat sure fact that you've had this since 82, have geno 3 and diagnosed with fatty liver already, you're going to witness increasing ill effects from the disease, simply based on time. Doesn't matter that you feel okay, it's tearing your system down. This geno tends to show a faster progression to cirrhosis, so my recommendation is YES, by all means, if you can obtain treatment with Epclusa, do it! It is as easy as they say, believe it!

Feel free to start a new thread in the New Members section and introduce yourself. I'm glad you found us!

HepCGtype2 · Senior Member

Hi. Hep C Geno Type 3 here.

Cant tell you my pertinent info as i do not have it in front of me nor shall for 1-2 weeks.
Do suspect I have had Hep C since about 1982.

Never been a drinker. Do know that my numbers are very low and as far as I know, I have not had any symptoms of Hep C to date.
Am going through a highly recognised set of Liver specialists.

Only concern otherwise at this point is Fatty Liver but diet/exercise/etc under way recently and i should be able to lose some extra weight which I imagine might help eradicate it thus be a healthier liver?!

Sure, I have heard what the doctors say but am more interested in hearing from patients as to whether or not this treatment is as easy as they suggest and/or at all unnecessary?
Have been ignored up until now for the most part, other than bi yearly blood tests and fibre scans, since my numbers were so low and not covered.
I was never advised to go under any other treatment before this due to such low numbers when it was not urgent that i be treated and undergo a bigger risk in it not being effective in the end.

Thats all I can tell you, so far.
Hence, curious for feedback.

Thanks.

Canuck · Guru

Hey Razor,

You PM'd me and I did PM you a note back.

Re: some of these labs ... "normal reference ranges" can vary (of course) from country to country and lab to lab, but your lab should provide you with their "normal reference range" that you should go by (usually right on the same page, right beside the result) - at a glance you can see yourself how elevated or out of wack they appear, but it's your doc who needs to properly interpret them and their significance for you.

In Canada some of the CBC stuff we do here is expressed completely dif. scales of measure.

Your "Total" chol was 203?- I read chol is not considered a "borderline" high until it is between 201 and 239 mg/dl. Did they do a complete lipid profile on you, showing ratio of "good to bad" chol?

Your "Total" bili was 1.6? - I've read of "norm" being <1.5 mg/dl . Another lab lists "norm" as between 0.3 - 1.9 mg/dl.

Your "Direct" bili was 0.8? - I've read of "norm" being <0.4 mg/dl. Another lab lists "norm" as between 0 - 0.3 mg/dl.

Was that you that told us you had a GB stone hx one time? Just a thought.

Wish you felt better than you have been feeling, and I hope you will feel better sooner, but, you have not been that long cured, it is still early days yet, lots of time and breathing room now to watch for improvements to your health going forward with your liver regenerating and regaining it's health and balances. I am just so very glad you were so well-cured on epclusa. I hope you are still taking really good care of yourself as far a diet and rest, us GT3s deserve that kind of tender loving re-coup care! biggrin C.

Tig · Admin

I have seen frequent bili elevations on these new drugs. It seems transient and corrects after treatment. If your doctor isn't worried about it, just monitor it. These drugs affect everything and you're going to see things fluctuating.

Razor Blade · Member

Razor Blade wrote:
Well, i had lots of bloods done. Most in range but Total chol 203, Total Bilurubin 1.6, Direct Bilurubin 0.8
GGT 54
PMN 85
LYM 10

Any ideas ?

Bit concerned about Bilurubin being high !!

JanAlive · Newbie

Great news. Rock-on!!!

Razor Blade · Member

Well, i had lots of bloods done. Most in range but Total chol 203, Total Bilurubin 1.6, Direct Bilurubin 0.8

GGT 54

PMN 85

LYM 10

Any ideas ?

Razor Blade · Member

Razor Blade wrote:
How can i upload my blood work ?

oh, i have just seen it, no attachments :(

Razor Blade · Member

How can i upload my blood work ?

Tig · Admin

That's music to my ears, Ian! You have dialed the number to success and the only busy signal you'll get from now on, is your Liver telling that Dragon:

"Nobody here, recovery in process"...

Ruby Red · Senior Member

Razor

Whoohoo!!! Fabulous new!!

Canuck · Guru

Razor Blade wrote:
Post 5 months....UNDETECTED....YIPEEE.....
KEEP THE FAITH !

Great big super HUGE congrats Razor!! biggrin Keep the faith is right! I expect you'll feel a little better about things with this 5 month SVR under your belt! And I hope that you (like me) will see the very welcome physical improvements still to come. Without scrolling to search for it ... with no labs done on you (since Dec?) does that mean we missed a 12 week SVR for you, and we can take this 5 months one as a slightly early 24 week SVR celebration?? Darn, did we miss a party?! Not to worry, I am often to early or too late for many things, including parties - things have a way of working out in the end. smile

I did post to you below, but ignore all my endless questions - today I just celebrate your VERY good news!

Good going guy!

Hey, here's my favourite Happy Dance I like to do at SVR parties! wink C. https://www.youtube.com/watch?v=JE2osIWmtLw

Razor Blade · Member

Angel223 wrote:
Hi Everyone, I'm new to this site & HepC. I was devasted when diagnosed with HepC 2n, but got thru that first battle. Now I'm on Eclupsa for day 2 of 90. I have to agree it makes me sick & all but I know the outcome will be better in the long run & healthier. I'm using these 12 weeks to reboot mylife & body with a positive mindset. I do agree it's no fun, but better than dying from liver cancer later. I'm gonna hang in there & stay positive. All of us HepC peeps will remain in my Prayers to help you heal quickly! ðð¼

Lots of water...and then some...

Razor Blade · Member

Post 5 months....UNDETECTED....YIPEEE.....

KEEP THE FAITH !

Angel223 · Newbie

Hi Everyone, I'm new to this site & HepC. I was devasted when diagnosed with HepC 2n, but got thru that first battle. Now I'm on Eclupsa for day 2 of 90. I have to agree it makes me sick & all but I know the outcome will be better in the long run & healthier. I'm using these 12 weeks to reboot mylife & body with a positive mindset. I do agree it's no fun, but better than dying from liver cancer later. I'm gonna hang in there & stay positive. All of us HepC peeps will remain in my Prayers to help you heal quickly! ðð¼

Tig · Admin

Hi Mary,

I'm sorry you had to stop treatment. Can you supply any information or additional resources on the international studies you spoke of? I'm unaware of any association between Epclusa and hypertension. Without knowing more, it's difficult to make that connection. Things like other conditions, medications and potential interactions would have to be addressed first. If Epclusa causes hypertensive episodes in some patients, it's not a common reaction to my knowledge. We'll have to follow that topic.

There are additional treatment medications that you can consider. Genotype 2 responds well in most cases. Since you stopped treatment, you will need to have RAS testing performed to determine the best approach. The HCV virus typically mutates following non effective treatments. Any future drug must be able to defeat those resistant strains if they occur. How you respond to other medications is unknown until you try. Reading your history of headaches, previous blood pressure issues and failed Interferon/Riba treatment, you need to find a specialist that can address all of these potential problems before starting again. There are cardiac medications that are contraindicated before starting some treatments. I also believe all herbal supplements should be stopped during treatment. That has been a rule before starting these therapies for years. Be sure to discuss that with your liver doctor if you are still meeting with your homeopathic doctor for headaches.

Good luck to you. smile

JimmyK · Guru

Greetings. I am sorry things did not work out the first time. Attached is some good information regarding Geno Type 2.

JimmyK

Dalila · Member

Hi everyone! I stoped Epclusa after my bloodpresure went up to a 198/100. I thought that I would die. The doctor I went to at that moment told me that i would always have high bloodpresure and gave three different pills to me wich I did not take. Now after about two weeks not takeing Epclusa I feel very good. I have been controling my bloodpresure and it is totally normal without pills 125/75 average! Anyway I am having an appointment with another doctor next week talking about a therapy! I do not know if I could take Epclusa ever again since I am really afraid of getting this terrible high bloodpresure again. I have genotyp 2b and it seems that there is no other treatment. A lady from an office called hepatitishelp told me the their are some i ternational studys which proofe that Epclusa can lead to high bloodpresure. Anyway I am very afraid of Epclusa now since I thought that I really would die. I just wanted to inform you about my situation. thank you for your help. Mary

Canuck · Guru

Razor Blade wrote:
Hi, Well been a bit of a pussy. Finished treatment about 3rd December, my 87 yr old mother flew in on the 7th and it sort of went downhill from there on in.
Cut a long story short, i was worse off the Epclusa (generic) than on, and i didnt have a good time on it.
I convinced myself i was sick again and bottled going for bloods.
Anyway i went Friday and did basic LFT and viral load. AST 25 and ALT 27, one week wait for VL.

Hey Razor,

Thanks for the update. I too had vacillations during and after treatment, still do, but it is steady onward and upward progress I am finding. In some ways some of my improvements have been astounding, in other ways ... "pending". I agree with Tig whole-heartedly, about another undoubtedly UND for you!, and about how liver is a fickle creature and takes it's own good time (to not pout, perform as it should, it makes it's own rules and we are just along for the ride) - I am betting things ARE improving in many ways for you and will continue to do so, feeling "good" would be nice, sometimes we cannot really feel the dif between an AST of 93 and an AST of 25!! (for example) - but we know it is a vital/critical change for the good. I think that is your lowest AST yet??!! Did you have any other bloods draw aside from ALT/AST and VL? - GGT?, bili, AFP, other chemistry, lipid panel - are you going to have an abd. ultrasound and a fibroscan? You should check on all things, just for your own reassurance.

Mother's mean well (mostly), some are good at mopping a fevered brow, but it does not mean they cannot be a burden and a blessing all at the same time, now that mine is gone, I am not sure mine understood how much I did appreciate her, in her many, many ways. But we both knew - it's unconditional, just like the liver is in the driver's seat, it's on "automatic".

So, you've been in a kind of "feeling unwell and worry purgatory" - not had any bloods draw since ... when? Dec?

Oh well, you've done them now - you need the good feeback, and, some of the other tests I mentioned too. As a 3, I would want all my bloods done (some of which you have just now) but including all those i mentioned, such as lipids, etc, and a fibroscan and an abd. ultrasound by the 6 month post-treatment mark - we are looking for more good feedback, and us 3's need to know their lipids are behaving.

Not "pussy", more like Tiger, may i remind you ... WHO got you to treatment under the hardest of circumstances, WHO was the best driver behind the wheel of taking care of what needed to be done - YOU Mr. - you have done a fine job, I am very proud of your efforts. Wish your rewards were more tangible for you, sooner, they will come. smile C.

Tig · Admin

With LFT's like that you haven't got anything going on. Those are perfect. It takes a while to get your metabolism back on track post Epclusa. Just like every treatment, you adjust up and then adjust down. While uncommon with the new DAA's, it could take 6-12 months. Liver repair comes on it's on terms and timetable. There are others that felt a bit rough after treatment but improvement followed.

I hope things are going well with the visit! Let us know what the VL results are when you get them. Undetected is my bet! Keep hydrating, that's still important.

Razor Blade · Member

Hi, Well been a bit of a pussy. Finished treatment about 3rd December, my 87 yr old mother flew in on the 7th and it sort of went downhill from there on in.

Cut a long story short, i was worse off the Epclusa (generic) than on, and i didnt have a good time on it.

I convinced myself i was sick again and bottled going for bloods.

Anyway i went Friday and did basic LFT and viral load. AST 25 and ALT 27, one week wait for VL.

Canuck · Guru

Hey Razor!!

Yup, isn't it lovely about Phoenix's cure! And all the rest of us too!.

All us 3's AND 2's (and more) are JES KILLIN' IT, with this mighty fine epclusa!!!!!!!!

How ya been? Fill us in when you can. Glad for a post from ya.

Thnaks very much BTW, for the pm to that ques. I had for you. biggrin C.

Tig · Admin

Mary,

I'm sorry you had to stop treatment. It sounds like your doctors need to concentrate on your problem with headaches before trying another course of treatment.

Now that you have started and failed to complete two courses of care, you will need additional testing for drug resistance before trying again. Each time you start and stop one of these drugs, the virus can mutate and become resistant to them. These variants (mutations) are both short and long term in nature and will be important going forward. Be sure to mention this to your next doctor.

Wishing you the best!

Razor Blade · Member

Phoenix17 wrote:
Hello ! It has been awhile since I have been on here. Spent most of the last few months with upper respiratory problems. Getting over Bronchitis which I had to take a few days off from work, (which I never do) I hope everyone is well!
Oh ya,one more thing. Had my 12 week post treatment on Tuesday. UNDETECTED!!!!! How sweet it is!

Well done, congratulations !!!

Razor Blade · Member

Well done girl !!!

Canuck · Guru

Hey thanks Dalila,

I appreciate the additional information - about your prior treatment, your history, all of your other data helps a lot with our ability to understand. I was relieved you clarified that you knew that this 4 days of treatment had no benefit to you the minute it was stopped.

What were your 3 labs PRIOR to the epclusa then?, (just for comparative purposes), or what have they been running at over the years - I was not clear (in your other thread) that the SGPT (ALT) of 38, SGOT (AST) of 25, and your GGT of 29 were actually the results on day 4 of epclusa, I mistakenly thought the ones you listed were pre-treatment values.

I am very sorry for your past experience and for what has happened now with this current attempt.

I am very glad you are going to consult with this cardiologist, and that you relaize that whatever hep doc you end up with in future, you both will very obviously NEED to do some VERY serious pre-planning, before another attempt can be made.

You know well, the investment into treatment is not to be taken lightly, and what the ramifications may be in failed attempts, this start and stop only complicates things, so next time around you and your doc are going to have to get it right, to find ways to ensure you successfully complete an entire course to prevent the added burdens that can occur with unsuccessful treatment.

I know you and your next hep doc will figure out some ways, and ultimately you will be able to complete a course the next time, without fail, when you are properly prepared. It is just such a shame you could not have done it this time, as (1) failed attempts are NEVER a good thing, and (2) you got the best (in my opinion) in getting epclusa. Subsequent to this stopped course, you may require some extra testing now, perhaps a time delay might be required, and perhaps some "possible" changes/tweeking to your next drug regime might be inevitable. Maybe not - it' will be hard to say, until you start consulting (very carefully) with your new hep doc.

Yes, of course you are right, in likely contributing relationships between pain and BP's, but as well, I will have a look at what herbals you mentioned and look for any contraindications with epclusa.

I am glad you are trying so hard. I know you will beat this HCV, you have to, for your future health. Keep us posted, if I come up with anything else for you, I'll post it here or pm you.

Fire away if you have any questions you think we might be able to help with. C.

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