Hep C Discussion Forum

Hey Liz and Ruby,

Time is going by quickly, 2 down 1 to go! I'm amazed at the effectiveness of this drug combo and the ease of it on the patient, while absolutely destroying the virus. Doesn't seem like it has a chance and that is beyond COOL 

I have faith that the fatigue (desire to find the nearest recliner) will diminish. If you're like me, you'll go from needing a nap to just enjoying one! By curing this disease we give ourselves more quality years to enjoy those naps and anything else we choose! Since it took us years or decades to get to this point, it takes awhile to see the improvements we seek. Things begin to heal, knowing that gives us hope!

Hey Phoenix and Ruby,

Wow - about 3/4 of the way through now! (for the both you you)! Last bottle #3 eh! How time has flown, at least, as it feels for me! You are both nearly there, approaching the finish line (and the winner's circle)!

Sheesh I NEVER even got OFFERED a third bottle! A measely 2 bottles was all I was gunna get - (that "little dab 'il do ya" theory) in my trial, and my short 8 week course worked superbly for this ole 3a! (OK, OK, they evened it out, upped the ante a bit by throwing in that added vox, but still .... I know dang well I was cured long before the 8 weeks was up)!!

You two (I am sure) were cured long ago!! But, the firm rules say, it's "one more round for my friends here", to comply with the "use deadly force" rule and the "shoot to kill" law. 

I still "nap" too, but NOT like before!!, I am evolving out of it, and  it is still evolving - it WAS alarming, the amount of down time I was doing in the past, especially at it's height during treatment! I didn't think it was even humanly possible, to have to sleep that way, unless one had narcolepsy! I am glad that has changed radically for me and is improving.

Nice to hear about that mysterious disappearing act abd. pain thing going on for you Phoenix! I too revel at a couple changes I think I have detected! The longer it goes on, the absence of them, the more convinced I am it is very true, that with my cure, things are starting to right themselves!

I tell ya, us lucky gals, it's worth the waitin', waitin', waitin'!!  C.

Hi Phoenix

So happy to hear your're doing well!!

RR

Hey Pablo,

That's great to hear! I wondered what happened to you this week. Figured you must be out celebrating, ha, ha! Spending time with your family sounds pretty special. I hope you all enjoyed your time together.

I'm pleased to know that you're feeling all these improvements. That's the encouraging news everyone enjoys. So welcome back from your family excursion and we all look forward to your next bit of good news! SVR 24!! Let us know...

Hi Canuck - Thanks for the info! Glad to hear that those things resolved themselves for you! I have had joint pain in various places in the last 5 years or so. I would be ready to go tho the doctor for it, when it would just go away. Of course looking back I believe it was from the hep c. My hep doc said that the ankle problem could be from from the hep. I sure hope so!!! The swelling has gone down, but still having pain. I know losing weight will be a big help too! Working on that as well. 

It is interesting to look back and know a lot of how we were feeling is a result of years of having hep c. For me it is 36. 

How are your kidneys doing now? Better I hope.

I am so thankful to be an this treatment! Hopefully all these things will disappear for good for all of us!

Razor Blade wrote:

---

Hi All,

Quick 7 week update, feeling much better, have increased H2O intake to 3/4 lts a day ( i know, i can hear you all, told you so).
LFT yesterday AST 38 ALT 22 !
Question, my AST is always higher than ALT, i see in most cases its the other way round ! Any ideas?
Also my Doc has told me to get Hep A & B vaccines, is this ok whilst on treatment ?

Thanks and take care.

---

 Hi RB, just doing a spot of catching up here and good to see your update! 

Your liver enzyme levels are looking good and your ALT of 22 is great, and indicates that the level of inflammation in your liver has gone down a lot.  You mentioned on an earlier post that you have compensated cirrhosis and I would say that is the reason why your AST numbers are always higher than your ALT, that`s very usual with cirrhosis. 

I would follow your doctor`s advice about the Hep A and B vaccines, it`s important to get them done. 

Keep us updated and best of luck, you`re well on track! 

Thanks! I'll keep everyone posted.

Also, wanted to drop this link here in case it might be helpful for others. It is a manufacturer co-pay assistance coupon. I am going to attempt to use it and will report back if successful:

www.epclusainfo.com/co-pay-coupon-registration

Hey Eric,

Big congrats on getting the epclusa approval for your GT2! Answer to question about no subtype will be found with your doc. Epclusa is "pan", you can pretty well disregard the importance of being a 2, 2a, 2b (or being any other GT for that matter) when taking epclusa.  C.

Link - http://hcvadvocate.org/hepatitis/factsheets_pdf/genotype.pdf

Razor,

Re: Higher AST than ALT? Likely just part and parcel of you and your HCV. Looked up a reference to higher AST's and only see "alcohol-induced (type) hepatitis", in which you may see AST's signalling twice as high than the ALT's, so, it is likely your enzyme levels are just what your enzymes levels are! - they are normal! THEY ARE GREAT! As great as your VL is! Your ALT and AST both crashed to be within normal limits within the first 3 weeks, and have remained crashed.

Re: A/B immunization - I was advised/helped to ensure i had immunity to A/B ASAP (no one wants to run any risk of any other insult to the liver). Flu and pneumoncoccal immunizations were also recommended as well. The same also applied identically to my partner. I started the "series" of A/B, prior to treatment, and the "series" had to run through my HCV treatment - I was instructed that being on HCV treatment was NO obstacle to being immunized. Rather, the emphasis was put on ensuring we both had sufficient existing A/B immunity titres, or, gained it ASAP, for my own protection. Both of our A/B titres were tested first, then immunization(s) commenced.

Water.  C.

Oh poor Phoenix,

Why did you have to be the example for us, dry swallowing pills, you were probably just trying to be super good and "on time", and most unfortunately had to pay the penalty - another "water, water everywhere" lesson - really too bad, that "worse than a bad taste" in your mouth! Poor thing, but thanks eh, better you than me!!  You did everyone a big favour, !! - never, never take pills without lots and lots of H20 (hear that Razor)?? I learned another good one from Loopy Lisa, never drop your dacla into the toilet, as that may not be the kind of water you would wish for.  C. 

Sheesh, I have to memorize all these lessons, like the good one SF told us " don't do what i did" - waiting, instead of presenting yourself to ER with cardiovascular symptoms.  C.

A piece of advice for Epclusers. Take with water!!! I had to take mine tonight in the car without anything to drink. IT TASTES AWFUL!!! The pill sat in my mouth for longer than I wanted. Yuck, It's a hour later and I swear I can still taste it. 

Don't make the same mistake that I did!  

Just checking in... I am halfway done with treatment, Started week 7 tonight. Still feeling tired a lot, but I am actually getting things done that I have been putting off for a while. Tired, but a little more energy. Hmmm doesn't make sense, but there it is!   Ankle pain and a bit swollen still. The swelling has gotten better since starting Epclusa. That's what brought me to the doctor in the first place. I may have to go to a specialist for that if it doesn't feel better soon. My hep doc said it may be due to the hep c, so I just wanted to wait it out. I have had similar pain in the past in my knee and shoulder that went away, so I am hoping it will resolve itself. Other than that feeling great and ready to handle the next 6 weeks. Not much to handle as it has been a pretty easy ride so far. 

Glad to hear your feeling better RB! The water does help, doesn't it? Although going to the bathroom a billion times a day is a pain. Gladly do it though!

Sanuk-Sanan   I take mine at 7pm every night. I have had very few side effects from it. I do drink water quite a bit at night, and having to get up in the middle of the night to use to bathroom is kind of a pain, but it is working for me. Whenever you decide, drink lot's of water!

Awesome, thank you Jimmy K and Cannuk! I'm not sure I'll sleep through Epclusa, as it's sounding like staying hydrated is important.  I'll see how it goes.

Still no word on the drug delivery (though it might be at home waiting for me) or blood draws or any other dr visits. Unfortunately I don't even know who to call .  My Gas/hep-ologist's office isn't real communicative.  Not at all like my oncologist. It's a little frustrating, though I expect that the gastro/hep-ologist's office is more "normal" and my Onc's office is extraordinary!  

After the drugs arrive I'm to call my onc's office as the clock to begin a clinical starts then. I'll call the Gast/hep-ologist's office then, too.  Unfortunately I've blown through all the FDA approved meds for melanoma and yet I still have melanoma.  So a clinical trial is the only way to access any kind of systemic treatment.  But I have to be out of any treatment to start any trial, so the 12 weeks of Epclusa become a bit of a timed hold in the process.  After the 12 weeks, then we'll see where the melanoma trail world is (it might have changed!) and go from there. Fortunately, my lung tumor seems to be growing very slowly, so far.  We'll check again in Dec. and make sure it's still there and hasn't been joined by any friends.

Yes, I only found out about HCV because of joining a clinical trial (maybe this saves my life?). I was tested for all the Heps as a part of the bench marking / application process to get in the trial.  It wasn't happy news, getting kicked out of the trial and finding out I had HCV, but it seems like in the end it may turn out for the best.  I'm grateful.

Thanks again for all your help and advice!

Jen

You asked  - "... in the evening and then "slept" through the more miserable parts of the side effects.  Is this a good strategy for Epclusa?..."  

I think so ... why not?, you tried to make this work for you before (taking "other" meds in evening to sleep through any possible sides), so, no harm in trying to take epclusa in evening either, for same "preventative" reasoning, but, you might not get ANY or many sides with it (some have not detected ANY sides whatsoever, others have) - so, no harm trying to sleep through "possible sides" that may or may not materialze.

Taking them at the same time every day is important tho, and keeping yourself well hydrated with adequate water will be key. 

What LFT's and VL draws have been set up for you for while you are on epclusa? 

Hope you get the drugs delivered soon! Did you phone somebody to check up on it?  C.

Hey Ivery,

Glad for your update. I trust you will soon be back to your "controlled" diet again, after all that stellar wgt. loss and work on your physique you did prior! Once you got all nice and svelte like that, I am sure without the HCV, you will be back to working on good health in every way! 

Tell me something ... how long do you think it took you, to completely stop feeling the effects of that month of riba (once you got switched over to the epclusa) , just curious.

So ... what VL's and LFT's were planned for you then, just one at EOT?, and then perhaps EOT+12 weeks, and then EOT +24 weeks?  - I hope so.

I am kind of disappointed they did not do a 4 week VL and LFT's on you. But, as you can see, everyone on epclusa is doing just great! Only 3 weeks to go! Nice.  C.

It is a good reminder Jimmyk. You are right. I am working on cutting sugar from my diet. It's hard, but it can be done. 

Thanks Tig, makes sense i suppose !

Canuck's description of logs is more accurate than mine, mathematically-speaking.  

Thanks Pablito! You have made me feel A LOT better on how things are going.

Thanks Ruby, those little guys are so cute!

Hey Liz, 

Don't sweat the 36, there are people that are detected at EOT and still achieve SVR. The days of old when an RVR was important have passed. It's nice to see it on paper but it doesn't change the high rates of success if it takes a little longer. I'll go so far as to say that were you to have the test repeated on Monday, it would be undetected. 36 is nothing... You should be celebrating and riding high on this great news! I'm thrilled for you!!!!! 

Thanks Ruby! It is a huge drop, but I guess my expectations were high, so it frustrates me a little. Thanks for the encouragement! I needed that today. 

You are right, there is a battle being won!!!

RB - That is a plain old 36. Not 36,000,000 (Thank goodness!)

Hi Phoenix,

With such a high starting point, i think it looks good, but is your current VL 36 0r 36,000,000.

Your going in the right direction !