Hi hepcat60,

Glad to hear you agree on the importance of hepc2 (and all of us) drinkin lotsa water! And nice to see a recent post from you too! It's been a while eh?, since we heard from a very experienced vet like you.  How about an update on things on a post-treatment thread? We would be all ears!  C.

Same here.  Cured for 2+ years and have much better hydrating habits than before.  Some things are just good practice.

I agree with you Allison. I never stopped hydrating lol. But living in FL it is an easy thing to do with the heat and humidity. 

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

Some habits are good to keep.

The end is near.....  You can make your final weeks much easier by pounding the water. You don’t have to drown yourself but that one gallon per day goal is a good one to strive for. Hard to believe you’re almost done! 

Drink up!

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

Congrats on the LOVELY ALT/AST drops BTW, nice to see them all there in their VERY nice downward crash glory (knowing your doc made a note of some of your prior/pre-treatment ALT's that ranged from 17 to 40)!

Thanks for posting all your labs, I will just cherry pick some of them, easier to see some particular ones, and their travels, as follows:

(Bold = not within reference range).

June (pre-treatment) 

Albumin      Billirubin      ALT      Creatinine                    AST        HBG                     HCT                           RBC

44 g/L        10 umol/L     17      112 umol/L (high)      15        109 g/L (low)      .3284L/L (low)        3.80x10e12L (low)

Sep

43               6                 10      118 (high)                   11        111 (low)             .339                          3.81 (low)

Oct

37 (low)     5                 10       191 (high)                   9          99 (low)              .302 (low)                3.39 (low) 

Your most recent labs also shows a very slightly decreased potassium. I believe all of your lab work will be returning to more normal levels over time, and you should not be unduly fretting about them (JMO - I'm no doc!).

Your HGB (even tho lower than range), and the same for RBC and HCT, they are not rock bottom, we have no idea what is "normally" normal for you as far as HGB goes, sometimes people can feel a bit punkish with lowered levels, other feel nothing, even tho their levels are markedly lower than these. My partners HGB/bloods might appear a bit puny compared to the norms of other mens levels, but regardless, he IS perfectly healthy, feels well, and his body just normally runs (as-built) on the HGB levels he owns.  Just ask Mallani/wlmj/Tig (and quite a few others around these parts) what a rock bottom really is for HGB and bloods! I believe they should start improving, they do not have far to go to get back to be within the normal reference ranges.

Your creatinine has crept upward some, but they are well aware of it - you will be well followed for that. Your creatinine too may well creep downward again toward being within range over time. Over time, if they remain to see elevated creatinines and consistantly lowering albumins, they will likely do further blood tests to keep surveilling this. Sounds like they are sending you for further follow-up for this anyway.

No fasting blood sugars or A1C tests that they routinely do on you?, only home finger pricks, while you are on metformin?? I am kind of surprised they haven't shown a blood glucose test done on your labs yet during treatment. Would be nice to follow that at bit more more than just finger pricks. They usually do some routine blood glucoses and periodiocally some A1C tests if you have been on metformin. Also, how is your BP status, I cannot recall that info about you, if you have had any hypertension/BP problems? Just curious (and nosey, eh!?)

Just as you are guessing and hoping your "diabetes" may improve/cease after HCV cure (you could be right), many of these other labs could well turn around as well, to improve to be closer to normal levels.

Having a "chronic" illness is hard on a body and it's systems (such as having chronic hepc, for one!), and chronic disease processes can affect more parts of us, sometimes evidenced by much more than say just in our infected liver tissues. Strong treatment drugs too can tax our our already taxed systems, temporarly altering labs as we are in the process of this important cure. 

Maybe some further tests, they have done (or will do for you) if your creatinines persistently continue to elevate and your albumins continue to decrease: urea/BUN to creatinine ratios, GFR's - creatinine to creatinine clearance ratios. Things like that, I would guess.

Albumins can decrease simply in response to being chronically ill, being elderly/infirm, having hepc alone can decrease your albumin - as far as we know this is your first decreased albumin, it would have to be seen if it persists and decreases further, as to why. Next albumin draw might turn out to boringly be within normal limits again!

Concentrate on all the good work you are doing ... you are eating better, drinking LOTS of good water (right?), and you are feeling better (in general) as you mentioned, AND you have this wonderful, irrefutable proof before you - that you are being cured of this HCV!, and many things should now start to improve for you, given a bit of time.  C.

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!!!    

Hi Hepc2. By looking at your numbers I would say your going to make SVR no problem. Did you know that type 2 hcv was the easiest to treat just 5 years ago? Type 2 responded the best out of all geno types to PEG-RIBA. It was a tough treatment but the outcome for geno2 was the best. Your liver with a 6.2 fibroscan and your very low ast-alt make SVR a sure thing. Keep popping those pills (EPCLUSA) and its gonna be over before you know it.      RC

Yup, large drop at week 4 for VL and ALT is very good news, you've had both. (you can't get a larger drop in VL than an UND)!!!!!!!  Those kind of drops you have experienced, we refer to as a "crash" - quick and steep.

Some folk do mosey along, dropping more slowly over their 12 weeks, they too will get cured, it is just nice to see profound drops right off the bat, quite a reward, less fretting waiting for an UND during your 12 weeks, that's all. Sometimes people have slower drops in their ALT's (one of the signs of less inflammation basically) at 4 weeks, but some people do not start out with very high ALT's anyway, so the drop can be less, and/or a person can become UND more slowly during the course of their therapy. But generally, on these new DAA's we are most often seeing people having quite quick and profound telling drops (responses to the drugs) as early as 4 weeks. That is showing you the therapy is working quickly for you indeed. From your past hx of having pre-treatment ALT's between 17 to 40, you have also (comparatively) had a very nice drop at 4 weeks to an ALT of 10! All the excellent signs we want to see happen, and the sooner the better, just so you have nice feedback that therapy is working.

EOT = end of treatment. That is when your 12 weeks of drugs is done. You will likely get another set of bloods then (another VL and ALT/AST, etc.)

The next set of bloods, after the EOT bloods, should be at EOT+12 weeks (for you that will be around Oct 28? I think), SVR (sustained viral response) is generally deemed "official" then, SVR 12 is when you have sustained your UND from EOT through to 12 weeks after you stopped the pills. Bloods are generally re-done/re-confirmed at EOT +12 weeks, and then again at EOT +24 weeks.

So, officially (technically) your biggest UND party should be on EOT +12 weeks, but in my book you can start celebrating right now with a 4 week response like that (it's a done deal).  C.

hepc2,

Almost INVARIABLY, this is what we are seeing with WONDERFUL new DAA's, early crashes of loads, and then they just stay that way.

Congrats - it done deal! 

Stay compliant and all will remain decimated.

You got more celebrations coming up, an EOT UND, then a EOT+12 week UND (technically the "official" SVR), then EOT+24 week UND. Party time and you will be free of it.

Large 4 week crashes in the VL and drops in ALT are VERY telling signs of the successful death-blows dealt to your virus. These herald the best possible news. C.

That is awesome news, Hepc2!!  Gives me hope for my 4-week blood draw on 9/28!  Been on Epclusa now for 2 weeks!!  Congrats!!

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. 

Hepatitis C Virus (HCV) Ribonucleic Acid (RNA) Polymerase Chain Reaction (PCR)

Collection Info: Spec #xxxxxxx: 5 Sep 17 1205
Test Result: Not detected as reported by xxxxx PHL Report #xxxx HCV Viral Load Conversion factor: 1 IU/mL = 2.70 copies/mL.
LIS Order #: xxxx

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

Hi Hepc2 and C- I think I called the pharmacist at my speciality pharmacy, Walgreens, but was not impressed with her.  Got the impression that she wasn't really familiar with Epclusa!  When I picked up my first prescription from my NP's office and asked her who I should call with questions, she told me told me to call her office first but definitely not to call Gilead!  Don't think she has much faith in their ability to answer questions!

HepC2-hopefully, you can get an answer from your doctor's office today.  Good luck!

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

---

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

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.

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.
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. :)

*fixed typo

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. 

Hi Canuck.

The doctor that conducted the colonoscopy suggested the RestorLAX 2 weeks prior to the surgery on the initial consultation interview, before i began this treatment.

I had the colonoscopy 5 days into treatment, so the 3r-5th day doesn't count as I as on meds to empty my system out beforehand.
I had started using RestorLAX about 10 days before the first pill given for Hep C.
It worked like a charm so the drugs here, at least at that point cannot be held accountable.
For the first 2 weeks afterwards, I was using RestorLAX but it was almost too much.
It was almost not safe to be further than 2 mins from a washroom so I stopped using it, assuming i would start again the following week. I did and the same happened.
I stopped using it again and now it's been a week. So obviously the drugs here are causing some but the RestorLAX for me works well but the two together as time on the drugs have progressed, is a bit too much.


Still waiting for my full blood report. Was told it would take about 10 days so expecting word perhaps on Mon/Tues as to whether the Hep C is still active in my system or not.
Received all the other blood reports that same afternoon but just posted the ones asked for.

I eat spinach salads daily. Would have thought that alone woudl have kept my iron higher. Guess not.
I was told specifically not to take iron without a specific iron test for it first.
She said to take iron supplements, unless I register as being iron deficient becomes much harder on the kidneys as it needs to expel what isn't needed.
Next doctors appt I will get a requisition to have it tested.

As for the signature line, what is common to you to understand is still Latin to me.
I have been relying on some of you here to make sense of the numbers for me.
Not even sure I could put together that signature yet without making 1-2 mistakes.
But waiting for the latest results I suppose, first that let me know if the virus is still active.

-- Edited by HepCGtype2 on Sunday 10th of September 2017 11:18:21 AM

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

Good to hear you will be continuing treatment! I'm glad you got to speak with your nurse. Your previous doctor that did all the misdiagnosing should retire... That's terrible! 

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   :)

Hey hep2,

Out of town, just got back and read about your musings/second thoughts about taking your next epclusa pill just based on not knowing what an upward blip in one of your creatinine tests means? ... (IMHO), keep taking the pills, pursue further kidney function tests, and drink more water.

Your water intake is low (also IMHO) at 5 X 500 ml bottles per day - that only equals 10 cups or about 80 oz. per day.

8 X 500 ml bottles per day = about a gal (aprox) 4 litres = around 16 cups/ or 128 oz. (A fair difference between 5 or 8 -500 ml bottles). Besides you noted the water was quite helpful to the bowel regularity.

BTW - are you still on Metformin, and how have your blood sugars and A1C's been? Just curious.

Any doc (not just your hep doc), your GP for instance, can requisition you a repeat creatinine and other kidney function tests. But I would talk to your hepc nurse first just as you planned to, perhaps you could ask her if they would just phone in a repeat creatinine lab order for you, and then you could just more easily go directly to the lab for it. Just a thought.

I would not be trying to "flood myself" with water to hopefully skew a lab, rather I would be drinking an increased amount of water (all the time/every day), period, because it is best for your body while on HCV drugs and good for your bowels. It would be too bad to cut back on water because you find your "too" regular, if you thought that was happening. Also, did your GI doc leave you any instructions as to any dosage decreases in your 3-day-in-a-row use of Restoralax in the event that you are regular or "more than" regular? Just curious.

BTW - I think Tig interpreted your surgical report from the coloscopy correctly, that one of your polyps was located at the 25cm mark (up) the colon, not that the polyp was necessarily 25 cm in size. Regardless of the sizes of a polyps (just ask my friend!) she had two tiny ones and they created NOTHING but extreme intermittent havoc and distress for her while she had them, improvement was like night and day as soon as she had them out!

Regardless of how the re-boot is occurring, I am glad you are feeling some of that! Good your hemoglobin is up a tweek. You very well could be right (about how maybe your "re-boot" is a bit of this and bit of that) HCV drugs working, no more polyps, cleaned out, more regular, perhaps your new diet and a happier bowel all contribute. C.

Unless you have pre existing kidney problems, 148 doesn't warrant the consideration of stopping treatment by itself. My opinion of course, but the trials specifically stated the Creatine elevations that brought continuance into question were considerably higher. Another question, are you reading the information on Creatinine or Creatine? Creatinine is produced from Creatine and while similar are different when diagnosing levels. 

If you aren't hydrating properly, it could be a reason and I can't begin to tell you how important that is. These drugs dehydrate you, unlike your normal dehydration, you don't recognize this similarly. If you are dehydrated, your Creatinine can elevate substantially. You can't ignore the need to drink 3-4 liters of water each day, without fail. 

Hopefully you'll get a chance to discuss this with your nurse or doctor. I hope you don't stop treatment over this. Stopping these medications make future treatment more complicated because you will develop mutations that can take years to resolve. I would get some advice from Gilead as well. If your doctors aren't well versed in these new medications and how they act on the metabolism in general. Things fluctuate, that's the nature of these drugs and their action on your system. 

Start by hydrating properly, now and let your nurse or doctor know that you haven't been drinking enough fluids recently. I would assure you're properly hydrated and retest in a week or two before considering stopping this incredibly effective treatment. Good luck and let us know what you find out.

Hi Shelly,

Continue treatment! My first question is, are you hydrating enough? Have you taken anything like Ibuprofen, or any other NSAID just before your test or on a regular basis? They can cause an elevation, as can Epclusa, but 148, while elevated, is not a reason to discontinue treatment. The elevations that they referred to that were reason enough to discontinue treatment were instances when it rose 3 times or more than the upper limit of normal. You're not even close. 

Can you call your doctor and just let them know you're concerned? There should be a number you can call for questions or concerns. I saw you mentioned not having an appointment with your liver specialist until January?? Why the delay in that?

Regardless, the elevation isn't high enough to start worrying about. If your healthcare team has any concerns about it, you'll hear from them. These medications will cause unusual fluctuations in some of these levels, it's not uncommon. Stay the course!

Ah, sorry, forgot that part.   These numbers and terminology all still gobbledygook to me.   

These were taken in June 2017, 6 weeks before i began treatment 

Alanine Transaminase (ALT)

VALUE

17 U/L

Normal

Aspartate Aminotransferase (AST)

VALUE

15 U/L

Normal

Can you confirm or dispel this idea that my Creatinine at 148 is not a problem?

From 112 in June to 148 today?

Dont know how to tell if the virus is still detected or not?

I wont be seeing that nurse again for one month, nor the liver doctor until Jan   

-- Edited by HepCGtype2 on Tuesday 5th of September 2017 05:35:55 PM

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

Ok, just got home and see my blood tests are already online.
Hmmm. Not sure this is good news :(

The nurse spoke of Creatinine, for one test, that i had to specifically ask for. I think she said in my case, aside from knowing the numbers, it wouldnt be helpful as my numbers were so low to begin with, I assumed Low meaning as close to healthy as possible, compared to others.
I seem to recall beforehand, her saying, something to the effect that his is kidney related and if the numbers above 120, there is a problem, alluding to something, not exactly sure what but with definite negative undertones.
Normal range shows between 50-98             ( 112 I believe in June but now raised to 148?)
VALUE
148 umol/L
Abnormal

Alanine Transaminase (ALT)
VALUE
10 U/L
Normal

Aspartate Aminotransferase (AST)
VALUE
11 U/L
Normal


My HemoGlobin on the CBC ( it was 109 in June)

Hemoglobin (Hb)
VALUE
111 g/L
Abnormal

Red Blood Cells (RBC)   3.81   (3.80 in June)
VALUE
3.81 x10e12/L
Abnormal



If there is anything else I need to copy/paste let me know.

-- Edited by HepCGtype2 on Tuesday 5th of September 2017 02:00:55 PM

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

They told me the same thing, but I took the Interferon treatment, twice. Failed the first in 96 and successful the second time. It was an awful treatment and long..... The last took 28 weeks and about killed me! Powerful stuff, especially when combined with the other drugs. They didn't know how bad it was to begin with and when they did, they kept promising how something better was coming out soon. Well, soon turned out to be decades for many of us. My liver fibrosis was progressing fast and my doctor said I had to try. I'm glad I did. 

The CBC will tell you what your Hemoglobin is. Just make sure they do that. I think you'll be pleased with your results!