Hi Tig,

Yes he wants me to complete all the Sol/Dak and I will. Only have 11 more days to go. I don't want this stuff back. If it does it won't be because I stopped short on treatment.

Thanks,

Cecil

Thank Canuck,

Will do on the water and the blood work. Here in Arizona we can order our own blood work, don't need a doctor. You just have to pay for it yourself but  it is very affordable. A CMP, Iron and Ferritin along with a CBC is only like 70$ US.

Cecil

Swaz,

Yep - story of our lives ... well at least for a couple more weeks for you anyhow ... popping Daklinza every day, and drinking water about 100 times a day!!

WHAT - a fibroscan costs $1000 to $1500??!! Brother!

Just for your own satisfaction, when they are doing some of your "follow-up" blood work, at some point ask for repeat bloods on any item you saw was "previously" elevated (if they don't automatically do those), likely they already have drawn those or will do so, such as bili's, AFP's, ferritin, etc.  Likely all your bloods will improve (just as you have been seeing them doing so), and keep improving, it is just nice and reasuring to see that they all have and remain so, or decrease even further in future! Small extra rewards. Don't forget to ask him about repeat U/S's going forward.

The important bits right now are your PCR's and liver panels, and yours are brilliant.

Don't let the water intake slide, especially now, and even after you finish. 

You are about to have a lovely spring, being cured!!  Won't be long now.  C.

Hey Cecil,

I hope your doctor also said that you absolutely MUST finish the entire course of medication, even though you are undetected at this point. I'm concerned when people hear they are cured at an early stage of treatment. I have heard too many people over the years think that the initial undetected test indicates finality. These treatments are designed to rapidly decimate the viral load, but it's a matter of a tissue exposure or perfusion to the drugs. Once reduced, there must be adequate exposure over a prescribed period that keeps it that way. The test to confirm success ( SVR) is after 12 weeks from the end of treatment.

Congratulations on the good report! Not long now...

Hello Canuck,

I will have to agree that it seems  water for me is very important. On Sunday and Monday of this week I did not get my gallon and Tuesday was one of the worst days I have felt. I hydrated well on Tuesday and today, Wednesday, all is much better.

I have kept my diet low in protein and Iron, throughout this TX. (only have 12 more days till 84). I did see my  doctor yesterday and he was very happy with the results of my blood work from the 27th of Feb 2017. He feels I'm cured and just wants me to finish the rest of the meds. He said all my other numbers were good. Kidney were working well and that the Ferritin should come down at EOT.   I asked him about a fibroscan and he said that there was no place in Tucson that did them and Phoenix had 2 or 3. Said it was hard to get the Ins to pay for it because of the cost of 1 to 1.5k. And the fact that the Ins company's feel that the  Liver Fibrosis, FibroTest-ActiTest Panel gave us a good indicator of what was going on for me. (I had that test in October 2016.)

He wants me to repeat the RNA, Liver Profile and CBC testing in 2 months. I have a followup visit on May 10th 2017 with the Doctor. 

Thank you,

Cecil

Hey Swaz,

Good to hear from you again.

I knew another 3 who did sof/dac (well-cured by the way, and, with remarkable resolution in the hardness of his liver, 6 months post-treatment I might add) who had his fair share of "feeling stuff" during the treatment as he went through it. For him too, his feelings of bad days, lightened toward the end.

Please do not let yourself fluctuate (meaning, do not lighten up) on the drinking of water (even after you have finished treatment). Your kidneys have lots of work to do dealing with sof, make it easier for them. Cyclical sides (and maybe a few of your labs) may coincide with your water intake dipping too low, maybe being on the dehydrated side and perhaps having a diet too rich in protein. Keep WELL diluted. Lighten up if you are eating an overly-heavy protein diet, especially large amounts of red meat.

I found the water lesson the hardest to learn, I was always suprized how much water it took to actually be "over"-hydrated, THAT rarely happened with me! I tended to make the mistake of being "short" of the mark. Always better to err a little on the side of feeling overwatered, than being underwatered. I learned it the hard way, even though I had been told ad nauseum, and I knew better! I always felt worse when I drank too little, too late, while I was on treatment, and even now, post-treatment, I have truly learned "water iS our friend"!

So is a good, nutricious but "liver light" diet. One that is high in water, and not "too" rich in iron/ferritin/proteins/red meats/fats, also conveniently serves to double as a "kidney light"diet.

Simply being on the "dehydrated side" can account for less than 10:1 BUN/Creatinine ratio.

Kidneys deal with the aftermath of your dietary proteins, don't overload them with a "overly"-heavy protein diet when they are busy with sof too, just a nice normal amount of protein intake within a nice nutritious diet.

Maintain adequate hydration, and dilute EVERYTHING.

Cutting back on red meat (if you eat a lot of it)  is an easy way to kill 2 birds with one stone, being that you also temporarily have an abundance of a small ferritin store. A couple of us here had high or higher ferritin levels, which resolved over time, on their own (among other nice things that resolved for us!).  I made an effort not to add any "extra" ferritin to my bod, until my ferritin levels came down.

I would not fret the ferritin, BUN/Creatinine ratio nor your total protein/globulin, as none of them seem too out of wack. Your concern about those will likely just pale from your memory quite soon enough.

I guess you got to see your doc in the meanwhile (earlier than you had indicated prior?), and that you both decided to leave you on your thyroid meds? Perhaps for the best, being that maybe the bad feelings that you were experiencing may have had not so much to do with the thyroid sup or levels.

The really important "memorable bits" (to savour) was your first crashing 4 week VL and that dramatic ALT/AST drop!! And now, these 8 weeks labs, you got 'er made bud!

Get ready to find out you've been cured!! At your next appointent(s) try to wrangle commitments/plans/requisitions out of him, to give you (preferably all three!) a fibroscan, ultrasound and CAT, and to have them repeated, to follow you going forward for your levels of fibrosis, cirrhosis and other improvements!! 

I feel another party comin on!  C.

Hey, we're here for ya Brother! I know the doubt and anxiety that starts to creep in the closer you get. Do your best to dig through all of that and listen to the voice on the other shoulder. It's all about a positive attitude, and it works!

You sound very committed and that's a good thing! Don't let EOT nerves get to you, you're going to do fine. I haven't had to do this for awhile, haven't had to, but you forced me to dust off the Magic 8 Ball. These new treatments are so effective we haven't had to shake it for ages. For you I'll do it............

See, I told you

Tig,

Thank you for the feedback. 

Yes, I am ready to have this over. I could not believe how bad I have felt until I feel good. Instead of having 1 or 2 days when I have felt good to having four or 5 in a row.  I am not taking any supplements of any kind and plan not to.  The only thing I am taking, since starting treatment, have been the Sovaldi, Daklinza, Warfarin and the Naturethroid.  

Cannot wait for March 20 to say goodbye to the Dak and Sol. I just hope that I clear totally and do not have a relapse. 

Thank you,

Cecil

Cochise, Arizona

Hi Cecil,

I concur, those are good results and that viral load is stellar! The end is near... Woohoo!

I know you're ready to have this behind you and it will. I remember being in your position and that was almost 4 years ago. Let me tell you, the time goes by fast. 

We have had members with elevated ferritin levels. Some had pre existing conditions that caused extreme elevations, into the thousands. Blood letting/phlebotomy reduces it when it becomes real high, but in your case, that's not required. No added iron in your diet or vitamins for the time being. It should correct after treatment is in your rearview mirror.

Keep up the hard work and stay uber hydrated! That doesn't stop til well after the bottles are empty... Good luck!

Thanks Jimmy!

Very good show of numbers! UND the AST and ALT dropping nicely. You are almost there and certain to be victorious!

Ferritin will get right about two weeks EOT forward.

JimmyK

Hello everyone,

Well I've gotten down to only 16 more days of 84 on Sovaldi and Daklinza. My symptoms/side effects have let up and life has been much better in the last week. I had lab work done at the two month 1 day mark and I feel pretty good about the results which I will post here!

***************************************

Hepatitis C Viral RNA, Quant, RealTime

PCR

Hepatitis C Quant RT PCR (IU/mL) <15 Not Detected* <15 Not Detected IU/mL

Hepatitis C Quant RT PCR (LogIU/mL) <1.18 Not Detected <1.18 Not Detected LogIU/mL

*Hepatitis C Quant RT

PCR (IU/mL):

HCV RNA Not Detected.

This test was performed using the COBAS(R) AmpliPrep/COBAS(R) TaqMan(R) HCV Test Kit

(Roche Molecular Systems, Inc.).

Tests Ordered: Hepatitis C Viral RNA, Quant, RealTime

PCR 

*****************

I also had a CBC, Iron and TIBC along with CMP. The CBC had all values withing range!  The Iron and TIBC were good but the Ferritin was high at 467. I found an article that stated that Ferritin levels should return to normal at EOT. Has anyone had experience with their Ferritin levels being high?

The BUN/Creatinine Ratio was 9.4 (low) and Globulin 3.8 (high). ALT = 35, AST = 43.

Feed back on these numbers would be greatly appreciated. 

16 more days till EOT. I do feel much better as of late. Not getting as tired as i was. Don't need a nap most days at 3 in the pm.

Thank you all,

Cecil

Swaz,

Hm, too bad, ever hopeful I have often found myself thinking something is better, only to be rudely reminded again that all is not well, and that I spoke too soon!

So, for you it was a bit better, for a wee while ... until it was not!

March 7 is a long time away. I don't know how your doc's office/facility is set up, and who works there with him, but consider phoning and asking for his "assistant" or his "nurse" who routinely assists him (maybe he doesn't have one and you will only get a receptionist), but do ask reception if he has a nurse or an assistant who works with him, and if could you speak to her/him please.

Whoever you get (even if there is no one but reception), explain your distress and that you would appreciate some advice and intervention to get you through this (as your appointment is so far away), "maybe" you will end up with some help or an earlier appointment, or perhaps doc/reception/assistant may end up not being helpful and suggest no other recourse but for you to see your family doc in the interim. Either way, there is no harm in asking for the assistance, it is justified. The worst that can happen, is that they cannot/will not cooperate, and you will still remain to get to see him on the 7th

But I think ANY advice or oversight at this point would be beneficial for you, worth an attmept, you should not have to suffer right sided pains and ill feelings all by yourself until March 7, nor should you be guessing on whether the thyroid med could be complicating things. An opportunity for a face to face with a doc to articulate the problems, ideally with a little physical exam and some objective assessment on his part, and perhaps an extra trip to the lab if that was called for, is not at all unreasonable.

If nothing goes your way, from your phone contact with your hep docs office, then I would go to my family doc or any general practitioner to at least bump heads with them and elicit their thoughts/advice. You never know, a GP might also be of some good assistance to you.

You won't know unless you try it. Sorry for the crummy day.  C.

By the way, also consider what you may be eating, I hope it is not too heavy/fatty/meaty of meals - it should be "liver light".  

Hi Cecil, That was my grad dads name!  Sounds like you have had a time at it!  I cant comment on the S/X of the combo your on. I have only done sof riba +&- the shots. I haven't done Daclinza. My sof-riba treatment  S/X were insomnia,fatigue,just plane old grumpy. the second T/X they added Interferon, and i felt like i had the flu on top of the other S/X  I mention.   They took my gallbladder this summer and commented that my liver looked like a bag of grapes, it sounds like they had a look at you liver and said the same thing.Sorry about that. You being a 3a with cirrhosis makes a harder case to cure. It would have been nice to see you go UND early in treatment, that's usually a good indication that thing are going well. I"m not saying things aren't going well, but the earlier you go UND the better outcome you have. I"m saying this all through my own experience. i hope your S/X go away as you get further into treatment, it seems that most folks reporting on this forum say they do get better.  RC

Canuck,

Thank you for you're  encouragement and response. I know I'm going beat this Hep-C beast!

I would say that the extra water was a big benefit. I seemed to feel much better yesterday and my stamina was greatly increased. I will keep the water intake to at least 1 gallon per day.  

As far as seeing my Dr soon: I have an appointment on March 7th, 2017. It takes about a month out to get in to see him as it looks like he is quite busy. I will ask him about the fiberscan at that time. 

Thanks,

Cecil

Well so much for feeling better today. It has been one of my worst days so far. Woke up this morning feeling good but the day went south after about an hour.  Have the stick in the side below the ribcage on the right side. When I feel that coming on it seems to become a bad day happening. On days when I don't feel the stick I feel very good. 

Swaz,

Good to know your history. Thanks for sharing it

You are a good historian and articulate it well. The fuller picture tells a lot and helps keep everything in perspective.

You have been dealt some unlucky blows, and, in everyone trying to do "their best" to right them, unfortunately other untoward things occurred (namely the victim thryroid), but you ARE lucky for the CAT scan and the GB work-up/surgery, as likely, because of these and an alerted doc taking a closer look at you, came the eventual discovery of cirrhosis, and your HCV testing. I am certainly glad they eventually caught on to it, that you had HCV! I am wondering if some of your past lab tests may have been signalling toward HCV earlier, but, that some abnormal labs may have been chalked up to GB disease, or to other medical issues going on, that may have been plausible explanations for them. 

Our health issues/maladies and systems are so exquisitely intertwined, perhaps there are more subtle woven effects in play that can't be definitively shown, perhaps after your HCV cure, and recovery from HCV, some of your other maladies will also imrpove or stabilize. Something good to hope for, aside from the profound general improvements to your health that you will gain by just being rid of this damaging virus alone! In theory EVERYTHING is better without HCV on it!

I am very glad you will get an 8 week VL. I hope a 12 week one is plannned too. It may still be worth that doc visit, to consult/explore your ill-feelings, whether you can/should withhold your thryoid meds, and a chat about the right sided discomfort. Do you think your doc might be accessible or accommodating in this way? If it were me, and if he was nice, I would! I would also ask about getting a fibroscan done now, so that you have something to compare to later. Fibroscans are so easy to have, and to repeat periodically, to help gauge liver hardness improvements in the future.

As a 3a I might also have done sof/dac, but that regime not easy for me to procure in the "public" BC system, they wished me to flunk sof/riba first, just plain lucky I got my trial of sof/vel/vox instead, otherwise I would have been looking at a trip to Inida to get my own sof/dac! Not so long ago, in 2015 and earlier on, some recommendations were for 24 week durations of sof/dac for 3's, but they have found 3's, especially treatment naive, can respond very well to just 12 weeks of sof/dac (just as you are proving). I think your labs show you got this in the bag, but even in the unlikely case of failure (Jimmy's portrayal of a sudden ten-fold increase) which in all probability will NOT happen to you (you are showing EVERY indication to the exact opposite), by having your VL's done at 8 weeks and 12 weeks, it is not only reassurring but insurance, had they wanted to, they would then have time to extend sof/dac treatment to be of a longer duration in a continuous manner. But, YOU WILL NOT be needing it longer - you are showing your 12 weeks is working very well indeed for you. Indeed, NOT everyone hits "0" exactly at 4 weeks on the dot!!! Many do, but by knowng that, it makes those who still have a couple straggling dying viruses at 4 weeks worry unduly. You've just about dessimated the whole of your viral population already!, all with one measley shell, and you are at the ready, locked and loaded with yet another double barrel load aimed straight at the couple maimed varmits left - it's a done deal.

I was wishing to avoid riba just on comfort principal, and in your case, you were lucky again, that in their wisdom they did not want to subject you to riba, solely based on the "specific" sides that might conflict with the warfarin/INR/PTT reasons.

So, really good, you are going to get a quick 12 week cure, and no riba to contend with either! 

Did upping the water intake help today??  C.

Tig,

No I am not taking Amiodarone at this time. I stopped it in 2000 or so. That drug cost me 2 years of my life. I fought the toxicity of the drug and the side effects for 2 years. When you go into Hyperthyroidism they try to treat it with drugs at first so it was around a year before they get to the I-131 treatment.

Cecil 

Hey Cecil,

Are you still taking the Amiodarone? It's contraindicated while taking Sovaldi. I gathered from your post that you were taking it, but stopped it post ablation. Yes?

I'm going to give you some warning information on the subject. 

Amiodarone Warning

Thank you all for your response. It is very assuring.

I will try to address your questions here. As for the assessment of the liver fibrosis, it was evaluated using the FibroTest-ActiTest Panel. I have never had a liver biopsy, as my Dr feels that this test is just as accurate today as a liver biopsy. This is my first treatment for Hep C. As far as how long I have had it the Dr. feels at least 20 years. I have never done drugs or shared a needle with anyone. I am scheduled for a VL test at the end of 8 weeks and have the script in hand.

As for other issues with my health I had an AV node ablation in 2001 due to chronic A-Fib. Was on Amiodarone to treat the A-Fib before the ablation and pacemaker install. One of the side effects of Amiodarone is it can make your Thyroid go either Hypo or Hyper. I went Hyperthyroidism and had to have I-131 treatment which is hardly every right on so they over killed the thyroid and have been on thyroid hormone treatment since 2000. I'm still in A-Fib but it does not translate into the high ventricle rate as before the AV-Node ablation. So with being in A-Fib I have need to take a blood thinner, which at this time is Warfarin. Due to trying to keep my INR within range and issues that ribavirin can cause with the blood the Hep C Dr did not want to add ribavirin to the Sovaldi and Daklinza treatment.  

 Had a Cat-Scan in April 2016, Gallbladder removed in June 2016 and Dr informed me of Cirrhosis seen at that time. That's when I started down this path and the Hep-C was detected.   

Cecil

-- Edited by SWAZ on Sunday 5th of February 2017 10:41:05 AM

Hi SWAZ,

Welcome to the forum. Glad to see your good lab responses four weeks into your 12 weeks of sof/dac. You got good advice from Jimmy and Tig, but I will throw in my 2 cents as well.

I see from your bio, your GT and F score, and I assume you were never treated before.

All your labs are crashing downward, as they should be - at week 4 you are "nearly" UND. Your pre-treatment VL at log 4.88 (about 75,000) has now dropped to log 1.46 (aprox. 29)!!!! A great response! Your other LT's are crashing too. Give it a bit more time and you will soon see.

When is your next VL and set of bloods to be drawn?? I am guessing you'll get your next labwork drawn at 8 weeks?? If they have planned only to give you labwork at week 12 (at the end of treatment), then i would go back to the doc and ask if you could please have your labs (incl VL) drawn at 8 weeks, as well as at 12 weeks. This way you would feel reassured, once you see that UND and the labs continuing their downward slide at the 8 week point! Everyone gets anxious waiting for that first UND. Who knows, you may be just a few days away from being UND, or may already BE UND for all we know!! No doubt I guess you will be, at 8 weeks, 12 weeks and beyond!! But Jimmy and Tig are right, some people just take a little longer, and some shorter to get to UND. Your load and ALT has crashed, and that bodes well for and heralds your UND to be!! Your labs are good news!

I am sorry you are having the right sided under the ribcage discomfort. I am guessing that this IS something that is going to go away. But that said, it helps nothing, when you are uncomfortable and likely worried about same. So, 2 things you SHOULD speak of with your doc ... ask for the 8 week VL and bloodwork, and, discuss this right sided pain. Mind you I have heard quite a few other folk complain a bit about feeling right sided discomfort before, during and after treatment. Many have the discomfort resolve with HCV treatment.

Tig is VERY correct, in that you MUST ensure you are drinking at least a gal of water per day, every day! DO NOT slack off on this!! You can find yourself cycling in and out of feeling not too bad, and then on other days feeling worse, just soley depending on your water intake NOT being sufficient! It IS very important. 

Your thyroid med issue, I am afraid, is ANOTHER (3rd item) your should discuss wth your doc - you feel the thyroid med correlates with feeling worse right now, so ask the doc if you can cut back (ask what is the worst that will happen), and whether he will condone you cutting back on the thyroid meds a bit for the next couple months. I have no idea how bad your hypothyroidism was prior to being put on thyroxine, what feelings were being evoked in the first place having untreated hypothyroidism, most people speak of slugishness with untretaed hypothryoidism, and, I have no idea how severe your hypothyroidism is/was, or, how long you have been on thyroid meds, or what the consequences would be (of how you might feel) by cutting back on the thyroid meds. So, it would be wise to discuss the whole thing with your doc and express clearly to him your suspicion that the thyroid meds are making you feel worse at the moment - see what he says, maybe he will not be too reluctant to let you cut back if your hypothyroidism is not too severe, and he thinks it worth letting you explore this. (I have NO idea what he would say). He would have to take more note of your routine bloodwork they do to follow your thyroid function/levels tho.

Another thing worth mentioning here is that many people CAN initially feel the effects of the drugs killing off the virus within - there is a battle going on in there, I did not feel very good through treatment either. But I did not heed the water drinking advice very well in the beginning, I am convinced now (mostly after the fact) that it WAS very important. It did make me feel "not so bad" when my intake was adequate. Additionally, just time helped, after the first few weeks, it was not quite so bad for me, or, I just got more used to the battle being waging within me.

Questions ... how long do you think you have had HCV, and what method did they use to come up with your estimated F score? Have you had a "fibroSCAN"? Have you also had any imaging such as ultrasound, Cat scan or a liver biopsy?? Just wondering all the ways they are assessing your levels of fibrosis/cirrhosis/conditions of your liver. Do you have any other health issues going on aside from the hypothyroidism, how long have you had that and when did they first put you on thyroxine?

I hope your doc is easily assessible to you, and willing to go over these questions with you - that would be nice. As it is not nice to not feel good and have questions/doubts and worries on top of it. First things first tho, trying flooding yourself with more water immediately and see if it does not indeed help matters.

Hang in there, it will all be worth it to get rid of this virus, but in the meanwhile do see if you can't get your doc to nicely try to help you address these issues. You shouldn't be feeling alone on this. That is what your doc should be doing for you, and we are here for you too.  C.

Hi Cecil,

I had to do some research to respond to your question regarding the thyroid. There are some complaints from people on your regimen, but there are complaints across all treatment regimens. There used to be a lot more discussion on thyroid dysfunction with the Interferon and Ribavirin treatments. Another thing you have to figure out is how your cirrhosis is impacting your thyroid levels. Treatment could be adding some problems that should be discussed with your doctor. If you're stopping your thyroid meds and feel better, you might want to find out why. 

It's not uncommon to feel fatigue and weakness on these drugs. If you were taking Ribavirin with your Sov/Dak, you would have a few more side effects to deal with. Did your doctors discuss any treatments besides Sov/Dak? I read your Bio and you don't mention being treated before. Anything in the past? If you put your Bio info in your Signature, it gives us a quick reference. You will see that in most of ours. Think about it!

Jimmy mentioned the viral load issue. We have had people that cleared at 4 weeks and one that was detected at the end of treatment, but was clear at week +12 and stayed that way. There is no specific time, but typically you'll see clearance between weeks 4-8. Once you do, you should stay that way, provided you follow all the expectations. Never miss a dose, plenty of water each day. You should be drinking AT LEAST 1 GALLON of water every single day! If you don't, you will feel poorly. I'm serious. Many people here simply increased their water intake and felt brand new. Try to up your intake and see if it helps. The rest of your labs are headed in the right direction.

Welcome and we look forward to following your progress.

Greetings and welcome.

I can't speak to the thyroid issues. Shoot most Thyroid Doctors are clueless.

That said, I am not sure how you would feel with or without DAA treatment or what your normal is. That to be honest is the key here. It is far less a matter of how you feel as how the blood draws are looking and in your case, the numbers are in line with expectations.

Mind you there is many more factors that would be helpful if you disclosed.

Geno Type?

Treatment first time? Second third?

We have folks here that did not clear until 12 weeks AFTER treatment. No worries unless you see a 10x fold increase in VL between blood draws.

Again welcome and no worries, you will be victorious.

JImmyK

I started treatment on Dec 26, 2016 with Daklinza and Sovaldi. There are days when I get this pain under the rib cage on the right side and my day goes downhill from there. I'm new to all this and I guess I'm looking for answers to a few questions. Is it normal to feel really terrible while on these drugs?   I'm also on Thyroid Meds for Hypothyroidism. I've read that these drugs can effect the thyroid! Any fact to this? It seems that if I skip a few days of the thyroid meds I have about 3 to 4 days where I feel normal like I have not felt in years. Then after taking the thyroid meds for 3 to 4 days I'm right back feeling bad.

After taking Daklinza and Sovaldi for 29 days my blood work showed I was not clear but came way down. Pretreatment ALT 64, AST 66, Bilirubin 1.6 VL 75000, Log 4.88. After 29 days ALT 45, AST 52 Bilirubin 1.4, VL 29 Log 1.46. Doctor said that they expect one to be clear after first month. Is there anyone else out there that was not clear of the Virus in the first month but was so after the second or third month? 

So is it normal to feel good for 3 or 4 days then not for 3 or 4? 

Any feed back would be appreciated. All I want to do is get rid of this Hep C and feel good again. 

Thank You,