Hep C Discussion Forum

I still drink a lot of water even though I was cured almost 2 years ago.

Some habits are good to keep.

I would NOT expect them to discontinue your HCV treatment whatsoever, based on a few upward creeping creatinines. Creatinines and other labs can creep all by themselves with really NO direct correlation of the HCV drugs. Do not necessarily fault HCV therapy, (you need to be free of HCV), there may be many reasons/causes for your lab flucutuations. Let them keep following you and investigating your creatinine levels (and all of you) and the causes for same. Can be related to just the fact that you have been carrying chronic hep c for some time, hx of diabetic issues, and/or other undetermined reasons - who knows! (Can you remind me - no chronic BP issues, right?) I think just like we have seen your good VL/ALT/AST crashes, we can expect to see many things improve for you post-treatment, including some of the labs you fret about now.

Keep drinking water! Don't experiment with NOT drinking. Go to your oasis.  C.

Hi hepg2. You gotta love those numbers. Those LFT's are about the lowest I have ever seen.   The treatment is working for sure. Keep up the good work and numbers.  RC

There was a mistake on my file up until 6 or so weeks ago.

Somewhere along the line they had me listed as GenoType 3.

Not certain but am of the belief that had they correctly had me as type 2, I might have started this a couple of years ago.

So led to believe, and again I might be wrong, that Geno Type 3, was the last one put on this drug...?!     

Anyhow, if so, it is what it is and i am here today and doing great, thanks to this wonderful drug!!!

Received a phone call from the pharmacy today, to make an appointment for next Friday to deliver my 3rd month and last.

Cant believe how quickly it has flown by.  Feels as if i just started on this days ago.

Tomorrow, hopefully I will hae time to post all the blood tests to date.

Thanks all!!!    

Hey, hey hepc2!!!!!!!!

Hot off the presses -   UND!

Now were talkin'! And that's just how we and epclusa do it!  Good job - well done. You and Gilead all the way! Happy 4 weeks to you. 

Ah sorry, I answered this elsewhere not realizing it had been answered here.

Yes, Naproxen can be hard on the gut but it isnt for myself.
I use it a couple of times a year if/when I develop a really deep muscle pain or it will stick with me for a month plus.
So i dont personally have any problems with it, and clearly understand Naproxen must always be taken with food.

I phoned the pharmacy here that is contracted to supply me with these drugs.
They were the ones that initially told me I could not take it.
But in all fairness it was a young girl that called, and I suspect they hire many at them at minimum wage to call patients about to start these meds.
Quite a business for the pharmacy :)

It was another young girl that picked up the phone and hadnt a clue so she put me onto the nurse who also didnt have a clue and suggested i call other pharmacies,
who apparently dont even have this drug in stock but she expected they would all know the answer. :)

Short story is that this initial drug store has the contract to dispense this particular drug, making a lot of money doing so but not so on the ball when facts are needed.
I looked everywhere, FDA, etc and all said Naproxen/Ecplusa is fine so going with that

I will double check with the doctor later but i know what the answer is going to be, hence, i moved ahead with it and if worse comes to worse and it's somehow wrong, one dosage wont kill me.

-- Edited by HepCGtype2 on Tuesday 12th of September 2017 12:08:12 PM

Re: your query about Naproxen

I cannot find much, if anything, about Naproxen use at the same time as Epclusa.

Have you already scoured all these?

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf   (section 7)

https://www.drugs.com/interactions-check.php?drug_list=3756-18097,1690-1051

https://www.drugs.com/naproxen.html

Regardless of all we can read, or think - you should always check with your doc/nurse about the wisdom of using any anti-inflammatory, analgesic or drugs (or supplements or any OTC thing). Just wise to do.

Personally, I think anything you take in, any drug, such as using an anti-inflammatory like Naproxen as an analgesic, is just yet another item you are asking your liver, kidneys and gut to have to deal with - and as far as I can recall, I consider that (for some folk) Naproxen can be a little rough on the gut, period.

Stronger anti-inflammatory/analgesic such as Naproxen might be overkill for muscle aches, perhaps your doc would suggest something other than Naproxen to use. I have no idea, maybe your docs office will just tell you to take a Tylenol as an analgesic.

You should not have to be in pain, but all drugs are a burden on your system(s)/body, including the Epclusa you are on.

You definitely don't need this discomfort, and should be relieved of it, if it was me I would pursue what your doc says you can and should take, but your doc needs to guide you on it. It's always good to go over ANY thing you think "might" be in need of or want to take (while you are on HCV treatment) before you start HCV treatment, then you have some "known choices" aforehand. If a unforeseen need arises during treatment then you are supposed to check with the doc first, to be on the safe side, pharmacists can advise (perhaps as far as interactions), but they are not privy to every nuance of your health and other conditions you may have, that likely only your doc knows.

I think it was Lindsmatt (also on epclusa) who located a Gilead nurse to ask a drug interaction question, maybe she still has that phone number for you.  : )

HepCGtype2 wrote:

---

Thanks. Sig added. I never would have figured that out.

Ok, I shall try tomorrow to list all the blood reports, or Tuesday when I have time.
Just assumed they weren't important, nor to be honest do I know what most of them are :P

Chances are there will be many results there that are just plain ordinary normal, but, they are always interesting to some of us here, sometimes it's just interesting to see what one doc chooses for a standard batttery of tests, as opposed to another doc's idea of standard testing, and/or sometimes INR's/billirubins/kidney function tests/blood sugars/cholesterol panels are just interesting things to follow - but don't fret over posting everything, at all, especially if they are normal, it's a lot of work for you - generally, if you know you had some abnormal labs prior to treatment it is nice for you to be able to follow those until you can see they have normalized themselves again, during or after treatment. We here don't necessarily have to know these things, as long as you know them, and you and your doc follow them. It's all about reassurring yourslef that things are resolving.

Hemp Hearts: I eat a spinach salad every day. I put a full spoonful in that. Put 1/5 spoonfuls in the yogurt breakfast thing. The doctor SWORE they had to be used so I honestly can't say if I have noticed them doing anything in particular or not, because i have had too many changes at once.
But they certainly arent hurting me.
I am 5 minutes from a health food store so i am able to buy it in bulk so its very easy for me to add.
She did prescribe it for constipation so, perhaps it does help you and myself in that manner.
It will be some time before I know for sure what is working and what isn't though but if you did notice a boost, I would certainly pick some more up for yourself if you are nearby a store. (Ya, maybe I'll try them again - they are expensive here tho!)

I haven't ever been much of a red meat eater. Not a moral position. I just find steaks, and heavy meats like that hard to digest. I feel heavy afterwards. Can feel my body working to digest it. Me too! (Ya, you sound like you need an easy-to-digest diet.) Over the years, I too had more and more difficulty digested big boluses of heavy red meats, I still am that way, I never did eat tons of red meats anyway, but pre-treatment I was tested for "anemia" due to my complaints, one being fatigue, and it was discovered I had the opposite problem as you, with my iron being too high! Hemochromatosis, it's fancy name. That actually (finally) led, ultimately, to my overdue HCV diagnosis!) My Hgb was high, HCT abnormal, and some other funny RBC's because of that, TIBC's were out of wack, all to do with me and how my HCV was affecting me in my particular ways really. I had been abnormally accumulating too much iron for who knows how long! So, I tried to modify my diet a bit, as best I could, to combat accumulating any more iron, as soon as I found out what my body had been doing! - as I certainly had stored up more than enough iron! Despite anything I may or may not have accomplished with my modified diet, what I did or did not eat or do, my iron load eventually did decrease, quite quickly, to normalize (right along with a lot of those other funny related bloods), after my HCV was cured up. There are quite a few oddball lab blips people get pre-treatment that can normalize, seemingly all by themselves, once HCV is out of the picture.

I have been on a recent kick of bacon though......LOL...no idea where that came from because i never cared for bacon and likely haven't had any in 10 years but the past few weeks, I have enjoyed some.
But that too shall end soon.
Sighs. I have to start eating more chicken soon.
My problem is not eating fatty foods, or binging but being interested at all in food.
I'd be perfectly happy if I could drink 3 glasses of a proper nutritional drink per day and would likely require more than that. :)


Funny you should mention the bacon craving thing ... many, many moons ago, when I was so VERY, VERY ill when I contracted acute Hep B as a teenager (and had also unknowingly picked up Hep C then as well! just nobody knew about the C until 2015!), but back then, I had just "naturally" (spontaneously) resolved my Hep B infection after being very ill with it for some time, it took me quite a while to recover from that, when i could finally eat again, I craved bacon bigtime. Weird eh? I was hooked on bacon, all forms, but especially back bacon, with lots of oozing buttered toast too, and for quite a few years following my HepB recovery too - hm, makes ya wonder alright. 

 

 *fixed typo

-- Edited by HepCGtype2 on Sunday 10th of September 2017 10:21:51 PM

---

Hi hepc2,

Oh that's good - I just wasn't clear on the bit about the "continuing" Restorlax use after colonoscopy, she had suggested a specific ongoing regime for you with it, so, I had also hoped she had also made provisions for not using it, if it was not needed. Good you modified it's use, on your own, based on how "loose" things were for you, I would have hated to think you were still valiantly trying to follow her original instructions to the letter despite becoming too loose.

Rest assurred, they will watch your bloods/iron/creatinine, and all, going forward. 

Ya, sig lines are hard, at least i found them so!

If this helps at all, try something like this?:

F. 58. Canada. GT2, likely since 1982.

Pre-treatment: VL ____, ALT 17 (to 40), AST 15, Fscore F0-1, Fibroscan 6.2kPa's, Abnormal Hb, RBC, HCT, Creatinine.

12 weeks Epclusa - SOT Aug 5/17, EOT Oct 21/17.

Week 4 - VL ____, ALT 10, AST 11.

Gram for gram red meat is probably the highest iron-content packed food, unfortunately for some, red meat is sometimes not a great part of their diet, but not to worry too much about your iron tho until they keep assessing things further for you, your Hgb has already come up a bit from prior. Just concentrate on a good gentle all-round nutritious diet that you can tolerate (and of course lots of water)!

If you have more labs to share (aside from the VL that we are ALL awaiting and looking forward to), and want to share them, please do, we would be all ears!  : ) 

PS - forgot to tell you about my experience with hemp hearts! I am in the habit of having a very late-night snack, it is usually always a high-fibre whole grains cereal combo of varied sorts and lots of milk, I sleep like a baby after and it helps me with my tendency to chronic constipation. I started adding hemp hearts to my cereal, experimental-like, as I had been hearing/reading such good things about them and their nutritional properties/benefits. By the third night I felt such a nice boost of energy! Too bad tho that I was in midst of going to bed/trying to sleep - I did not feel tired, AT ALL! Ha!, so much so, I was was nice and wide awake! Needless to say I had to move the hemp hearts to morning feeding hours! After some weeks, I just kinda gave up on them after I ran out, but i had noticed they did seem to give me extra energy - prolly good fer a person in many ways! - I dunno. 

Hepc2,

Good updates and reports you do - and great news that you are more and more feeling sure about blaming the epclusa for feeling better/stronger, etc. These things are most certainly a wonderful bonus to realize!

So, (prior) you said you would be getting bloods at 4 weeks, 8 weeks and at EOT 12 weeks - so for this first set of 4 week bloods you just had, it did included a VL and you are still just waiting for that to come in?? And, will you also be getting VL's done with your bloods at 8 weeks and 12 weeks? I assume you will, at least at the EOT 12 week mark.

So, your 4 weeks bloods show a nice drop from your pre-treatment ALT 17/AST 15 to (now) ALT 10/AST 11!

The bowel regularity thing ... I have a question I am confused about, you had mentioned (earlier) your GI doc (after your polyp nip and tuck colonoscopy) had instructed you on diet AND a "certain" laxative regime .... are you still taking the Restoralax regime, as outlined prior?? (You said something like ... only for first 2 weeks out of a month, AND then, only 3 days on and 4 days off?) Or ... no Restorlax, and your regularity is only being influenced by your water/diet/excercise and perhaps epclusa? If you can be regular without Restorolax I would think that would be best, did your GI doc leave you with instructions/provisions for the abilty to not take Restoralax?

Don't worry about your labs through treatment, little blips may happen, like your creatinine, believe me they would be contacting you if they were truly alarmed about anything - anything that was concern enough they would ever thnik about aborting/abandoning a therapy for you that was so obviously working so well for you. You hgb. is not very low, and it will likely rise in time all on it's own, with good diet, over time, and after therapy, or perhaps with iron sup (if it remains on the low side and is called for). It is already a little higher now than it was earlier in the summer?

My partner had a low-ish iron issue, he was watched and followed for it over a long period of time, on account of some gut issues he had going on and on meds, they wished he did not take iron sups, (besides, some people find iron supplementation can be a bit hard on the stomache/gut and/or a bit constipating, so we just we took measures to tweek his diet a bit, a bit more iron rich food.  Over time his hgb. went up a tad, and later on we were able to try an added regime of occasional (not frequent, but regular) supplementation with iron "pills" - very small iron doses, taken with Vit C to enhance heme iron absorbtion, and only at the main meal of the day which contained the most naturally iron-laden meal of the day (usually a meal that contained meat). After a year his hgb came up a bit more - we have deduced his hgb just naturally runs on the lower end of the scale, he always felt OK, and not much dif, even when we managed to get his hgb up a couple points. 

One of these days you will have to add some more stuff to your sig line (before and afters) VL's/ALT's/AST etc.

Good luck GP hunting, I hope you find a good and really nice one. C.

Interestingly that doctor just announced her retirement, one week ago.
On the hunt now for a new one.
She seemed to be really good for about 15 years, and either changed the past 5, or put to more challenges, was unable to produce.
Not sure which, to be honest, but in the past now.

Still doing great.
1 week into my 2nd month now.

Only side effect I have noticed is very soft stools, on the verge of diarrhea.
I thought at first it was all the spinach salad i was eating. lol but 3 days without and its still happening.]
So, guess it must be the drug.

After having been rather blocked the past couple of years, this is a delight, so noooooooooooooo complaints.
I might miss this drug at the end indeed :)

One last plus as well, it "appears" I have dropped weight quickly.

But it doesn't appear to be weight, although people keep remarking i have but I was bloated believing it was weight.

Again, I had been mentioning this to my doctor for it appeared I had had, what woudl have appeared to have been about a 40 pound weight gain,

but i really couldn't see where it was coming from, so i just put it down to getting older, crossing that line, so to speak.

I felt i looked pregnant from below the breast but was told it was fatty liver.

But since i have had this colonoscopy, it's all gone away, completely, and suddenly my pants are falling down  ( slight exaggeration) but I need a belt now, my face looks thinner. Just overall I seem smaller.

But not dangerously so. I have not lost weight, but just the appearance of such.  Whether that is just the colonoscopy results and/or the Epclusa, with my HEp C getting better, I haven't any way of being sure of.

But my diet is the same as before, other than 1-2 less pastas a week or 1-2 bagels.  Was on salads,etc for a few years now.

-- Edited by HepCGtype2 on Saturday 9th of September 2017 09:12:58 PM

Canuck:

Just heard from my nurse and all is ok. PHEW!!
They noticed the change but so far all is fine and to keep going.

The first 2-3 weeks on this drug, I drank about 8 bottles of water daily.
Before and after the colonoscopy.
Afterwards I noticed such a change in how I felt, dramatically so, I wanted to be sure it wasn't just the higher water intake.
So I deliberately drank less water these past 7-10 days, supplemented with smoothies, a shake, chocolate milk and other fatty type drinks.
I noticed a definite change when doing so, hence, understanding that water, more than anything else almost, seems to have the biggest effect on me positively.
Just introducing, and eliminating new things to see what works and what doesn't.

So far I am still on the Metformin but recent blood tests show me as in the normal range.
Daily tests sometimes show me under so careful sometimes when I stand quickly.
I dont want to make any changes at the moment until these 3 months are up, successfully.
In the process of looking for a new family doctor and at the end of this, I will repeat another full test as i believe I am no longer diabetic.
My numbers only seem to jump up if i eat pasta, eat breads/bagels or the odd time I give in to Haagen Daz ice cream. Hell, that Hagen Daz shoots it through the stratosphere :)
Otherwise, just below normal and i have also gone several days without the pills, testing all along to see if I jump, but i dont.

25cm makes sense that it was the distance rather than the size but will double check when I see that doctor in January, as well.
I haven't been called by anyone since, but have just accessed the reports online so left to understand them myself.

My test that determines if the virus is still present or not, I am told takes up to 10 days to receive.
I shall report back at that time with the answer.

I was also told low hemoglobin rising can be a sign of the polyps being removed, and shall increase more.
Low blood cells, need to have an iron test to see if i am low and if so, to supplement but not to do so unless a test accurate states i am otherwise the extra iron is hard on the liver.
So, all is peachy for now :)

Thx all!!!

Edit: Oh and yes, I have taken note already about your friends polyps removal and ending chaos.

Think you are right   :)

Shelly, your alt and ast look GOOD.  There so low- what were they before treatment?  R

They told me the same thing . Thats part of the reason why I diden't get treatment. Nobody mentioned the fact that left untreated it would turn into cirrhosis, and ultimately Liver Transplantation . Armed with that info I may have made better choices concerning treatment. And they also told me that type 3 was the easeyer geno type to treat??  I dont think they knew much about  how damaging HCV was.     RC