Hep C Discussion Forum

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

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...

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.

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

Thanks Jimmy!

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

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

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.

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

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.

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