Hep C Discussion Forum

Hi John!

Merry Christmas, Happy Hanukkah and Happy New Year to you and yours! 2017 was quite a ride, let’s hope 2018 is a blessing for all 

Ah! Splains a lot! Well, that is unfortunate I did not know about you special worry, if I had known I would have commiserated right along with you during your  treatment. You have certainly had your fair share of unwanted and unfair things happen to you as child and young adult!! I am especially very glad then that HCV is no longer one of those things.

Perhaps your kidneys and other various bits of you will very much appeciate no longer being forced to deal with the things HCV can do to us.

So, now that I have a much better picture of your hx, how is your blood pressure BTW and what do they say about your blood sugars (over time, how have they been)? Are you on any other ongoing treatment meds for anything?

I too fretted over my kidneys during treatment (I was on a sof-containing regime), I was not ever seriously worried, no real good reason to be but fretted anyway, just out of habit. You on the other hand had justifiable reason to fret. I was never really followed for my kidney "function" much, of all my life, after a childhood of being very sickly with many things, but mostly chronic unresolved, untreated UTI's and stubborn kidney infections right into early adulthood.

Eventually I found out that I ended up with one of my kidneys scarred, a little wizened up from the wear and tear, calcifications and scar tissue, smaller, detached from it moorings it flops down to pout, slosh and lay somewhere about my lower pelvis, over time and later as an aging adult it was obvious i was still functioning quite OK (renal-wise), even though I had really not been followed much. When my longstanding HCV was finally discovered in 2015, and through HCV work-ups, this was really the first time repeated creatinines and clearances (and many other bloods and U/S's were done on me), it was good my creatinine clearance was never below 58.6 as I got to HCV treatment, they stayed around the 60 mark, good, and now post-tretament are still higher, 78ish I think, and still normal. So, all was and is well. But ... I fretted for my kidney twins anyway.

Buddy's we cradle in our body, like our liver friend, we want the best for them!

Thanks for filling me in - I will be so excited for you if your kidney function starts to improve some now, now that you are free from the sometimes very weird insults HCV can throw at us. C.

PS - yes, one of the labs I have gone to uses the 1.2 mg/dL mark as being the highest end of normal, another uses a completely dif unit of measure and their own ref range.

PPS - oops, forget to explain my "creatinine clearance" of 58.6 properly! Folks won't understand how you could be at a number like 1.7 when we are talking "creatinines", and I had a number like 58.6 talking about creatinine "clearance"! The particular lab (used at the begining of my HCV drug trial) used a method and were doing what is called "CC&G" creatinine and clearance test - where the result is measured in mL/min, (more akin to algorythims used in GFR system and other tests like that) - my weight and sex (and age I assume) were used aside from serum creatinine levels, with the upper end of normal for a creatinine set at 1.14 mg/dL. For a "CC&G creatinine and clearance result" the normal ref. range is between 75 - 115 mL/min. So, my trial CC&G result would look have looked like this on paper ... C&G Crt&clr 58.6 mL/min (ref.75-115.0 mL/min.).

My hep doc actually does not like the CC&G method, or, so I think i heard him say to me once.  

Ah! I didn't recall from your history that you had any pre-existing kidney disease problem. Maybe we never really discussed that. I do recall that increase in your blood sugar worried you a bit while on treatment, so, that's nice for you to see it back to being within normal limits now. But as far as "kidney disease", how long before treatment did you and your doc know you had kidney disease?? What were some of your previous creatinines/GFR's (before treatment)? Until now, when you were listing your "on treatment", and your "post- treatment" creatinines, for comparative purposes, I didn't think you mentioned any other creatinines OR GFR's.

Do you have a current GFR to go with that last creatinine? Would be interesting to me to know more.

So, perhaps your kidney function was one (of many) reason(s) why your doc might have thought Zep a good treatment choice for you, as Zep is more renal sparing. But that might not be the only reason you ended up with Zep. Until your creatinines are really quite high and your GFR's are really quite low do they start to deliberate over which regime to give you.  

Your lab obviously uses serum creatinine measures (like some Canadian labs do) in "mg/dL's" ... your "on-treatment" creatinine being 1.7 mg/dL and your post-treatment one being 1.4 mg/dL, but of course I don't not know what your lab considers a "normal range of reference". 

Canadian and US labs can vary from one another (even labs within the same country) in what they consider "normal" ranges and what "units" of measure they go by.

In "mg/dL", I have found labs who consider "normal" serum creatinine ranges going from as low as 0.6 up to 1.4 mg/dL (male). So, some labs would not have considered your 1.7 too abnormal.

When pts. have been diagnosed and are firmly known to have had long-standing (chronic) kidney disease (CKD), and docs are choosing HCV treatments for them, they will have generally assessed your kidney function well, especially if your kidney disease has been long-standing and well-watched prior with labs, you would have been "staged" (1-5) in your CKD (at least based by GFR's), and, you can see in the recs (the link Tig sent you), regime choices are not even very restricted until your GFR is downtrending to 30 or less.

I don't know how long or what stage your kidney disease may have been, but it is very correct what Tig tells you, that can be associations with HCV and kidneys. Perhaps, now, not having HCV you will see even more improvements.

I am so glad you did not feel too many negatives for very long after EOT. Funny that the diarrhea lasted for a while (not!), but, you know what i mean. What a relief it is to lose those things eh? - like the fog, and being able to sleep better, those things must feel huge! I'm SO glad you generally feel much better. YAY!

Good you will get an U/S with your 24week check.  C. 

Great news!

we live in a time of miracles 

Hey John,

So good to hear from you, and really glad to hear that you are "feeling back to me". Were we surprised to hear you have been training in the gym? .... no!  Good for you! (Ya, me too Tig, my chin-up would look much much like a melty blob of playdough too I am afraid). I find it easy to hurt myself in the weight room, what with all those 5 lbs weights! Lassitude yoga is a little safer for me. Be careful John, try not to do TOO much, don't strain anything else.

Sorry about your friend. It is hard from the limited info he presented to you to really know what caused his liver Ca (HBV/HCV/or having both), we cannot know whether he had active or "chronic" B, perhaps he just had a "naturally resolved" case HBV?, and if he did have active or chronic B, it might be hard to know over what period, for how long, and whether it was in tandem with the chronic C or not, but it IS well within the realm of possibility that "all of the above" (having single or multiple kinds of hepatitis's) can take tolls on livers with damage progressing on to liver Ca despite being "cured" of either of these viruses. There is quite a high incidence of Ca with HBV. But there are also co-relations between liver Ca and HCV, or, just by owning a damaged liver due to toxins, drugs, alcohol, fatty liver diseases and other causes. Of course, it would not be a good scenario to have had both C and B at the same time, or both within your lifetime, a double insult, stands to reason there could possibly be more increased risk of developing Ca subsequently. People can have many forms of hepatitis, A,B,C,D,E,F and G!, with some of these occuring at the same time. There is an interesting theory that if you pick up C and B at the same time, one may win out for dominance over the other, ie. resolve the C and carry on with chronic B, or resolve the B and carry on with chronic C! 

HBV is a funny complicated disease, but basically you can only be in about 5 states of HBV: either active, chronic, resolved, never been exposed to it, show that you are immune to HBV (either) by successfully being immunized against B, or, by gaining your own immunity (the hard way), by successfully recovering from an acute case of hep B, where you resolved the infection on your own without going on to being chronically infected. For those proven to be chronic Hep B carriers, who then receive successful treatment for it, they too are considered cured of their Hep B.

Generally, if you show positive surface antigens - you likely have an active/and or chronic case of B.

If you show positive surface antibodies/and postive core antibodies - you are likely immune to B (from either havng the HBV infection one time and naturally spontaneously resolving it yourself) or, you could be immune by way of being immunized.

There ARE other variations found in antigen/and antibody states tho which are harder to interpret, like ... if all you show is core antibodies, it might mean you ARE a resolved HBV, not chronic, but ... perhaps not!

It's one of my favourite topics of interest (and a bone of contention with me), that they stop short of doing further expensive testing on people (like me) who are assumed "spontaneously resolved" but only show core antibodies. (Bore yourself silly reading this thread 'til your eyes cross ... About contracting HBV and HCV at the same time , and there other threads on the site about all the other kinds of hepatitis's too.)

I am sure you (like me, even tho we had a case of HBV in the past), both showed up as having NO surface antigen during our pre-treatment assessments - they check that, which is good, and with a negative surface antigen, that is the end of the pre-assessment testing story for most people awaiting HCV treatment - (unless of course he finds you do not possess enough immunity against HBV, in which case he would have immunized you, or re-immunized you as the case may be, against HBV) - but generally with a negative surface antigen it means you are not active and he can go ahead and safely treat you for your HCV.

It has been extremely rare the cases of HBV reactivation while being treated for HCV, simply because they do make sure you do not have any B surface antigens first. If you had shown surface antigens they would have automatically tested you further, and had you been discovered as having a need for HBV treatament first, they would have done so, and started HBV treatment before or with your HCV treatment.

Not to worry (except about your poor friend), but good you are aware of these things, you can suggest to others you may run into awaiting HCV tretament to be sure they have their HBV status's checked before they enter into HCV treatment. Do keep going (as much as they will allow you and spend money on you) to have your health and liver checks done as frequently as you can get, just good practise to keep following your health and liver health as closely as you can muster. 

It is pretty standard (as a minimum) to have your VL, LFT's (and perhaps some other bloods) repeated at EOT +12 weeks, and then again at EOT + 24 weeks, I would also want them done a year later. You may get repeat ultrasounds and fibroscans (perhaps other imaging) being offered or done to you at the 6 month mark and/or perhaps annually - just depends on how much your doc wants to do (or offers) in the "following" of you. Following is good, I would seek and welcome it.

Glad you checked in, to hear from you again, and that you are doing well. Are the guts behaving better? C.

John - so good to hear from you and that you are doing well other then your self inflicted gym injury. (Takes one to know one)

I will let Tig, RC or C answer your question about the Hep B as I do not for sure. 

Having a cup of coffee as I worked half a day today and then goin to bootcamp!

hugz,

wendy

Jmiff and Coco,

Regarding zep excretion,  http://www.accp1.org/ACCP1/5Publications___News/FDA_Approves_ZEPATIER.aspx - this link is very similar to the info that is already in the Zep drug leaflet.

There will be many sources of info to read (about absorption/excretion/half-lives etc.), of any drugs we happpen to be on, but they still may not provide an answer as to how soon a person may feel "better" after treatment (any treatment). But know that the drugs in Zep ARE a totally dif animal than riba.

What I never read about is a totally unsubstantiated pet theory that I personally harbour ... that doing NS 3/4A's (like grazo) in zep, or the NS3/4A (like vox) in vosevi, may feel (during and after treatment), different for us than those people who are doing doubles comprized of only NS5A's and NS5B's.

Your "Zep double" is comprised of a  NS3/4A (grazo) and a NS5A (elba). My "Vosevi triple" also contained a NS3/4A (vox) as well as a NS5A (vel), and it also contained a NS5B (sof).

My personal (off the wall) theory is that regimes that contain NS3/4A's, although very effective, may feel harsher? It's just a theory - i have found nothing to substantiate it.

Just remember everyone feels differently - how sick (or not) we may have felt before treatment, how we felt on treatment, and so too can each of us feel differently from one another after treatment.

I know from experience that I needed to keep drinking water, treating myself well, and eating well for a lond period after treament.

It is hard to compare ourselves to another person's experience, in how good or bad one should be feeling, on a given timeline - almost impossible to guage, as there are so many personal variables at play. 

Measurable drugs may not be in your body within hours/days/weeks of finishing a course of treatment, it does not necessarily mean you will feel "better" at some certain moment. We all have dif conditions.

Generally tho, we tend to read here that people do, fairly quickly, start feeling some relief and improvements not too long after finishing their treatments, and we have also read here that some people did not feel badly before treatment! nor while on treatment! - we are all dif. Riba does seem to take longer to feel better from tho. That is why ongoing/continued feedback from folks cured is invaluable here. C.

Hey Ducky,

Don't go all stealth on us, we'll be in withdrawl around here without your updates and company!

I too am hoping the cryo/rhuemy things will lessen as you go along - maybe?, we can hope, by the time you get that follow-up rheumy appointment, perhaps corners will have already started to turn? That appoint. was supposed to in Sept for the rheumy guy? So, if your EOT was around the end of Jul, maybe by Sept the cryo's might not have been resolving themselves (yet), but maybe your body will and has been trying - we'll see. Be hopeful for that, all my readings have indicated that you do have a very good chance on these things lessening - sometimes completely, and sometimes quickly, but sooner or later all or any improvements we will welcome.

I was glad to hear you were getting a few more winks of sleep since EOT albeit with required help. Without the zep and HCV in the picture, and some time, for more health resolutions/improvements, perhaps you will get back to sleeping better, i hope so.

Let us know how you're feeling about now, we gotta know, ya know!

So your last EOT ALT/AST was about the same as your stellar 4 week one of 15/25?  Wunderbar! So, will your EOT+12 week bloods be coming up around what - the later part of Oct?

Treat yourself with every loving lavish care, like a roman goddess within your temple. : )  C.

You know Robert, the Water was the key along with Coconut water and Gatorade. Lots of it, in fact all that has slowed downed since i cleared the virus I need to pick it back up and drink more water. But drinking the water, ton's of it , saved me from a lot of side effects, TIG and everyone else here were right about the water.

DRINK PLENTY OF WATER PEOPLE! PLENTY!!!

All in all, it was a walk in the park for me. I've known people my brother in law who actually worked while on the old treatment, interferon, so my suggestion is take the meds they worked and worked well. Your energy level all depends on you. Overall, it did not effect me negatively.

Good luck, you'll be fine.

John

JohnAnton1 wrote:

---

Its been almost a month now since the end of my 90 day cycle with Zepatier, it certainly did its job. Knocked the virus out in 30 days.... 90 day lab work great, although high Glucose showing..... the fatigue that I did feel, legs unstable, weak, and low energy has ceased. My legs are getting stronger, body beginning to bounce back, and the best yet is, I joined another gym now!

I love to work out, so I slowly grabbed the weights, ran a routine doing chest , triceps, one day, back and bi's the next day and cycled, body is in shock, but a good shock..... all i know is, taking the Zepatier, I was doubtful that I could work out while taking the drug.

Slowly but surely I am bouncing back, reminds me a song that Robert Cray sang, " I'm finally bouncing back"! I blasted that song repeatedly after my divorce...... 6 years later I have bounced back from that too! This too Shall pass!

Once again, I'd like to thank all who gave me hope and inspiration.

John  

---

 That's good to hear.

I'm probably going to be starting Zepatier soon. I was going to ask how much if would effect work and exercise. Will it make you too weak to have a job where you're on your feet for 30 hours a week? I'm job hunting right now and I've been unemployed for a couple years. I thought having a job might take my mind off side effects if anything.

Its been almost a month now since the end of my 90 day cycle with Zepatier, it certainly did its job. Knocked the virus out in 30 days.... 90 day lab work great, although high Glucose showing..... the fatigue that I did feel, legs unstable, weak, and low energy has ceased. My legs are getting stronger, body beginning to bounce back, and the best yet is, I joined another gym now!

I love to work out, so I slowly grabbed the weights, ran a routine doing chest , triceps, one day, back and bi's the next day and cycled, body is in shock, but a good shock..... all i know is, taking the Zepatier, I was doubtful that I could work out while taking the drug.

Slowly but surely I am bouncing back, reminds me a song that Robert Cray sang, " I'm finally bouncing back"! I blasted that song repeatedly after my divorce...... 6 years later I have bounced back from that too! This too Shall pass!

Once again, I'd like to thank all who gave me hope and inspiration.

John  

Another one bites the dust. That Merck combo is potent!!    Start the party.  RC

I'm unable to find any specific reference about Zepatier and dysgeusia. Aside from the first hand experiences from patients, like you and John, I have one impression regarding the topic. When I was on treatment, back when King George was ruling the Dragon empire, one of the drugs I took, Victrelis, caused the absolutely worst dysgeusia (altered taste). I noticed everything took on a horrid metallic taste. I took Peg Interferon and Ribavirin for 4 weeks, then they introduced the Victrelis for the remaining 24 weeks. It was after I started the Vic that the noticeable taste changes occurred.

You may wonder where I'm going with this, and here it is... While there is no mention of Zepatier causing this change in taste, consider this. Victrelis (now discontinued) was one of the two original NS3/4A protease inhibitors. Zepatier is a combination of two drugs, Elbasvir, a NS5A inhibitor and Grazoprevir (drum-roll) a NS3/4A protease inhibitor. Is there a connection between this drug class and dysgeusia? Perhaps...

Be sure you tell your doctor about this. They need to know about these little nuances! My taste returned after stopping the drugs, so understanding it's temporary will hopefully make it a little more tolerable. It was hard to get used to it, but we'll always know what flavor an aluminum can is if someone asks!

Well Jmiff,

A very, very happy EOT to you!!!!!!!!(tomorrow?) Celebrate with having that blood draw, and then do something special for yourself , you deserve it. A long haul, and finally, you are finshed now.

Congrats!

So, we already know how stellar your 4 weeks labs were with that beauty UND, and your ALT/AST's crashing from 99/46 to be in the 20's!! Like that didn't tell us how well this was all going to end. But we will relish right along with you in hearing those lovely numbers again with these labs too.

Please do let us know as soon as you know. 

I cannot speak to Zep trench mouth, I only knew vosevi breath. But seems to me we did have some talking here about taste distortion (dysgeusia/ageusia).

Sorry to hear the insomniac tendecies that stuck with you through treatment, did you ever try any of those "natural" remedies (if your doc had let you)?

I can wait to hear you are echoing that UND again. Are you feeling quite proud of yourself - you should be! EOT is a very good day. C.

John!,

Oh so lovely! Thought we might not get this info until the end of the month, so glad you got it and shared it with us now! 

What a long haul, but boy you sure did a good job of killin' it, right from the start and proven at week 4! Now, you thought just getting to EOT was sweet, more rewards to come, like re-confirming stellar results like these.

2 weeks free of those dang blister paks must feel like a reprieve, slowly and surely now, you will start reaping the benefits of ridding yourself of this health sucking virus. Celebrate every nuance you start to pick up on.

They are lovely numbers, to be VERY happy over. You dun it bro! Our zeppers are doin' it, doin' it!  C.  

Thanks TIG

Another fine VICTORY here in The Family.

Christine, yes my legs too feel less shakey when I walk, slowly regaining my strength . TIG, Canuck, Wendy, words of wisdom in the process, grateful about the half life as well.

Well I'm headed into the city now, putting on my happy face and going to meet some clients at a trade show, happy, happy! Fake it until you make is words that ring out loud to me on a daily basis. Thank God, I say it all the time, people who lived like I used to shouldnt be here, so I am grateful to have been given another chance at life.

I go see my Doctor on the 30th, for results, I fear not.

John

This is the official statement on Zepatier half life/elimination. You'll be clear in just a few days at most.

Elimination

The geometric mean apparent terminal half-life for elbasvir (50 mg) and grazoprevir (100 mg) is approximately 24 and 31 hours, respectively, in HCV-infected subjects.

Metabolism

Elbasvir and grazoprevir are partially eliminated by oxidative metabolism, primarily by CYP3A. No circulating metabolites of either elbasvir or grazoprevir were detected in human plasma.

Excretion

The primary route of elimination of elbasvir and grazoprevir is through feces with almost all (greater than 90%) of radiolabeled dose recovered in feces compared to less than 1% in urine.