Author Topic: started vp &riba 8 a.m this morning (Read 66813 times)

its time · « **on:** July 09, 2016, 10:54:17 am »

gm ...new on site and after years of a lot of mental back and forth about treatment well just started treatment about 3 hours ago.... very nervous about what sides is possibly to come... I actually find myself waiting for something...uggghh ... I also just started a new position in work and hoping no interruptions there... I have been reading thru posts .... lots of prayers for everyone here that outcome is good...
I am hoping that I can turn to you here for support n that I will be able to b a supporter too... ill b back...

its time · « **Reply #1 on:** July 09, 2016, 11:05:58 am »

what made me especially nervous about this treatment was the statement that" can cause severe liver problems" .....
my dr. wants me to come for first bloodwork 2 2 and a half weeks into treatment... said my hemoglobin was a 15 to start that's good I guess....

KimInTheForest · « **Reply #2 on:** July 09, 2016, 01:06:28 pm »

Welcome its-time! And good luck with your treatment. Best not to anticipate side effects. Self-fulfilling prophecy, and all that. You are lucky to start with high hemoglobin. I started with low hemoglobin, which, of course, only went lower with the ribavirin. (I was on Harvoni+ribavirin for 12 weeks).

Others here may be able to address the "severe liver problems" caution with Viekira. I believe that pertains to people with decompensated cirrhosis but that others are ok. What is status of your liver. What "F" stage are you at? Did you have a fibroscan or fibrosure test pre-treatment to gauge liver fibrosis?

best,
kim

its time · « **Reply #3 on:** July 09, 2016, 01:53:30 pm »

question too..... after completing treatment.....has anyone heard or have had other health issues due to this treatment?

KimInTheForest · « **Reply #4 on:** July 09, 2016, 02:03:37 pm »

Quote from: its time on July 09, 2016, 01:53:30 pm

question too..... after completing treatment.....has anyone heard or have had other health issues due to this treatment?

Some of us do have post-treatment health problems that we did not have pre-treatment and which we believe are connected in some way to the treatment itself or the stresses it places on our bodies. If you go to the main menu and look at the "Post Hepatitis C Treatment" forum here, you will find many threads on that topic.

HOWEVER... the MAJORITY of people who take these new drugs do not seem to have any post-treatment problems. So it is best to assume you won't either. Remember, the postings here on the forums are a bit skewed because those having problems either during or post-treatment are going to post more than those who aren't. So reading the forums doesn't necessarily give you an accurate picture of what percentage of people are having problems. I have more than one friend who did the 12 weeks of treatment, got cured, had no problems during or after treatment, and never once visited these forums because they had no need to. And I think that is a pretty typical pattern.

All the best,
kim

its time · « **Reply #5 on:** July 09, 2016, 04:49:49 pm »

kim thank you for taking the time and talking with me...
you asked what my "f" stage??? meaning thru the liver biopsy???
I had one done when first diagnosed and 5 years ago did again but came back inconclusive... they didn't get enough tissue what they did get was minimal scarring...
I'm looking at my recent bloodwork before treatment there's a section NAFLD Fibrosis score?? are either of these to answer your question???

its time · « **Reply #6 on:** July 09, 2016, 04:56:23 pm »

I know RNA IU/ml is 1.7 mil
QN, PCR 6.24
do these numbers play a roll in response to treatment?

KimInTheForest · « **Reply #7 on:** July 09, 2016, 06:21:15 pm »

I don't think viral load (the numbers you supplied) play a role in determining treatment outcome.

What was the value of your "NAFLD Fibrosis score" ? I think that would give you the way to know your "F" stage. Fibrosis ranges from 0 to 4.

4 = cirrhosis.
And 0 is, by definition, impossible for anyone who has chronic Hep C - at least that is the way the charts list us.

Biopsies are rarely used any more to stage the degree of fibrosis. They have been replaced by non-invasive tests - either fibroscan (a type of ultrasound) or fibrosure (a blood test).

kim

its time · « **Reply #8 on:** July 09, 2016, 07:47:32 pm »

NAFLD fibrosis score -1.759

KimInTheForest · « **Reply #9 on:** July 09, 2016, 08:42:12 pm »

Quote from: its time on July 09, 2016, 07:47:32 pm

NAFLD fibrosis score -1.759

I am hoping someone else will chime in here. I am only familiar with the fibroscan system for measuring liver fibrosis. But I am sure there are other here who will know what this means...

kim

crabby old guy · « **Reply #10 on:** July 09, 2016, 11:41:25 pm »

It's time,

I'm on a 24wk treatment w riba, my opinion is your getting too far ahead of yourself, If you keep worrying about side affects your going to stress yourself out, the riba feeds off that. When I started (3-18) I didn't want to know about any side affects. and I too took a diff position at work 3 day's before starting, then ended up working 60+ hr weeks. It took about 5 wks before I started feeling the sides. I'm done 9-2 but I don't look at what it's like when your done. I just look at how many wks are behind me. Drink Lots of water. Good luck.

its time · « **Reply #11 on:** July 10, 2016, 10:46:53 pm »

crabby old guy....
since sides are affecting you now...are you still able to function at work??? I understand everyone different.... but curious...
I have my calendar marked for countdown...
day 2 done... :}
had my husband go for a walk with me this morning...want to start at least walking every day...
kim too had said drink plenty of water... I don't mean to sound silly but what are you considering plenty of water...are we talking going beyond the standard 8 cups a day??

KimInTheForest · « **Reply #12 on:** July 10, 2016, 11:12:45 pm »

I was drinking 8 cups of water a day on treatment, above and beyond my tea, juice, milk, etc.

Others here have pointed out that if you are drinking so much water that your pee is no longer yellow (pale yellow is ok)... if it has become clear... then you are drinking too much water. So that is one way to gauge it, since we are all living in different climates and are engaged in different amounts of physical exertion daily, different sweat levels, etc.

kim

its time · « **Reply #13 on:** July 11, 2016, 07:38:41 am »

gm kim.... thank you
how are you doing since treatment???

crabby old guy · « **Reply #14 on:** July 11, 2016, 11:34:44 am »

its time,

Right now I'm off work, since 6-16, problem w my leg and some deep veins, waiting to have procedures done. Its a blessing, I'm a lead person in a shipping dept. I saw doc on 7-1 and told her I don't see how I could work right now, she said some of my sides could be because of my liver. ( I say B.S ) The riba could make your red blood cell count drop. The worst part is that virus is undetected since 4-29 My ins company is saying I need 24wks, doc said if I used their pharmacy I would be done. If you want to know what my sides are all do another post.

BillT · « **Reply #15 on:** July 11, 2016, 11:51:10 am »

Hi Its Time and welcome to the forums.I was on the Viekira but without the Ribas,and blew through it with almost no problems at all.What I did have were very,very minor and didn't last very long.As everyone has said don't worry about them until there's something to worry about.If you do there is a lot of good advice on how to deal with them from a lot of great people here.I'm having a 6 month post treatment Fibroscan done on Friday and will post my results.I feel great and really don't think there will be a drastic change one way or the other.We shall see.You're going to do fine so try not to stress about things that haven't happened.

BTW As Kim said the viral load seems to have no impact as far as the cure goes from what we've seen here.The Viekira took me to undetected when I had my first blood work done at 4 weeks,but I think if they had done it at 2 weeks it would have come back the same way.You'll be just fine.

its time · « **Reply #16 on:** July 11, 2016, 09:51:39 pm »

I don't know what I did but I did it.... lol typed to you BillT and Crabby old guy and it disappeared after preview...

I did want to say ... I had a dream last night... a cobra was under the sink cabinet... the cabinet door opened and it was right there in cobra stance... cabinet door closed and then opened again.. it was gone.. fig went thru small whole in back wall and is in the walls of the house still .... woke up after that... didn't see who opened the cabinet door I do know someone else was with me but don't know who....

Day 3 done....
will retype tomorrow all that I don't know where it went lol ..

Pete · « **Reply #17 on:** July 11, 2016, 10:04:56 pm »

Hello It's Time and Welcome. I too started vp and riba (24 weeks) and just finished up 14 days. Try not to think about side effects that haven't occurred yet. I think you'll make yourself crazy, and blame every hint of a headache, chills, fever, gas or whatever on the Riba. Keep up the daily walks, and other physical activity you enjoy. Just take it a day at a time. Also, follow Kim's advice on the water. I still workin' on that, I'm simply not drinking enough, but still feeling ok.

Keep an eye on your hemoglobin. I just read where a drop in >2 g/dL within the first 2 weeks is likely a predictor of anemia at some point during the treatment. Mine has dropped a mere .5 g/dL since baseline, and is 14.8g/dL as of this morning. Not bad, but I wish it would have been higher to begin with, but it is what it is. I think the key is to hang on as long as you can and dose reduce if needed.

Liver Functions- I also noticed that my bilirubin is up a bit elevated to 1.4 mg/dL, which is up from .7 at baseline. That has me a bit concerned as I am Class A cirrhosis. All other liver functions are normal. Oh and one more thing, "step away from the cabinet..." You're not by chance taking Chantix are you?

Hello Crabby - Question... if you've been U/D since April, and are experiencing sx from the riba, perhaps ask your DR if a dose reduction with the Riba makes sense for you. I'd like to hear more about your journey and the side effects that you have encountered along the way.

Good luck everyone and hang in there.

crabby old guy · « **Reply #18 on:** July 11, 2016, 11:27:43 pm »

Pete,
I had the sleep problem within 3 days, sleep 4hrs then wake up and toss and turn, didn't help I took a new position at work w a lot more stress. Brain fog was couple weeks after that but I thought it was because of all the 12hr days I was working but I've been off for 3 weeks and it's still there, then theres the time I put 2 pallets in a trailer and when I scanned the 2ND 1 it said already scanned, I lost 4 seconds somewhere that was scary, I'm a lead person in a shipping dept. If I watch something sad or heart warming on TV I get all teary eyed, And then get pissed because the commercial is so much louder. Doc cut down on the riba 2 wks in because my rbc was to low, still low but acceptable but I feel run down and exhausted all the time. Doc says some of this could b because of the cirrhosis, having cat scan later this month because blood work showed tumor marker crap, but number is going down. The thing that got me really pissed is that my ins changed it from 12 wks to 24 even though it's undetectable on 4-29.

Philadelphia · « **Reply #19 on:** July 12, 2016, 02:52:01 am »

Hi Pete, I blogged my treatment with VP + riba in mind numbing detail, and went through many of the things you are talking about, ie I had elevated bili, had a big drop in hemoglobin, dose reduced - but came out at the end with a cure.

it starts here:
https://www.hepmag.com/blog/hepatitis-c-treatment-journa

its time · « **Reply #20 on:** July 12, 2016, 05:50:12 am »

good morning
day 4 starting.... and noticed yesterday but was thinking nahhh but been itching already all over... and woke up this morning and see I have rash??...a lot of red bumps... or hives?? I have to look up to see difference .. think I would know lol

Philadelphia... I feel like I really am not up on my blood work ... just the info I supplied earlier on ... my dr wants me to go for blood work at 2 week marker...have to remember to make the apt... going to look at my base and post the things you were talking about.. although hemoglobin was 15 when I started.. ok .. off to work I go... have a good day everyone .. 1 day closer for all of us...

its time · « **Reply #21 on:** July 12, 2016, 08:21:47 pm »

hi crabby old guy
hope you are having a good day today...
you said you would tell about your experience with this treatment... I'm interested to hear....

KimInTheForest · « **Reply #22 on:** July 12, 2016, 08:47:36 pm »

Quote from: its time on July 12, 2016, 05:50:12 am

day 4 starting.... and noticed yesterday but was thinking nahhh but been itching already all over... and woke up this morning and see I have rash??...a lot of red bumps... or hives?? I have to look up to see difference .. think I would know lol

Good luck with that rash! I had the famous "riba rash" for a couple of weeks on my Harvoni+riba treatment. It wasn't too bad, but I was glad when it went away. Day 4 is pretty early for that to start happening. But anything is possible. We are all different. Or the rash could be something else?

kim

crabby old guy · « **Reply #23 on:** July 12, 2016, 10:08:16 pm »

its time'

My post is #18

its time · « **Reply #24 on:** July 13, 2016, 05:54:01 am »

hi Kim
i will get in touch w dr office today then.. just to pass it by them.. rash is in same spots on upper thighs and still feel itchy pretty much all over..
ohh dr lord hope it is just the meds n nothing else added

AussieRosa · « **Reply #25 on:** July 13, 2016, 06:12:07 am »

Its Time, I found moisturising with a cheap moisturiser (sorbolene) alleviated my riba itch very well. My nurse practitioner recommended keeping it in the fridge to help cool the itch down too. Also, in the first few days of treatment I developed a rash that looked under the skin. This went away after a few days and then the riba itch developed a couple of weeks later.

its time · « **Reply #26 on:** July 13, 2016, 05:01:44 pm »

I called the 1 800 nurse thru vp...
she said to use aveno lotion and up my water intake to 12 glasses of water.. if no change within 3 days to call my dr..

aussieroasa did you have a hard time with treatment???
and congrats on your new life w/o hep
I pray that for all
ps I will put in frige
thank you

AussieRosa · « **Reply #27 on:** July 14, 2016, 01:54:01 am »

hi, Its Time.
I wouldn't say I had a hard time with treatment. Especially compared to some people's experience here. For me the difficult part was the riba irritating my stomach and setting off a dormant helicobacter pylori infection. My stomach issue became so intolerable I reduced my riba by 1 tablet in the morning. Then called my nurse and told her I wasn't coping with the stomach ache and reflux. The ID doc was consulted and approved the dose reduction. That helped quite a bit, but by EOT the issue worsened and I had several weeks of considerable discomfort until the nexium hp7 treatment resolved the infection and my stomach had time to heal.

I developed mild anemia after a few weeks and this resulted in shortness of breath upon exertion, but was not debilitating.

On the advice of my hep c nurse I started moisturising my body daily prior to treatment then daily throughout. This kept skin issues to a minimum.

Post treatment, for a few weeks, I had strange symptoms which have mostly resolved now. Except my hair is still falling out in clumps.

Hope you get through without difficulty. Best of luck for SVR!

its time · « **Reply #28 on:** July 14, 2016, 05:52:10 am »

ps
the nurse said to up the water ... I should b drinking half my body weight... I asked her for swimmies... lol

its time · « **Reply #29 on:** July 14, 2016, 04:36:53 pm »

crabby old guy ... I only see up to #10

its time · « **Reply #30 on:** July 14, 2016, 04:38:12 pm »

aussieRosa
where you exhausted also???

Philadelphia · « **Reply #31 on:** July 14, 2016, 07:18:39 pm »

It's time - I had a period when I was on full ribavirin that I was exhausted. It was largely due to anaemia in my case.

its time · « **Reply #32 on:** July 14, 2016, 09:27:21 pm »

Philadelphia when you state full rib... you mean 1200???
that's what I'm taking.... I go a week from Saturday for 1st bloodwork (will b 2 weeks)

day 6 is put to rest...
drank the 12 cups of 8 ounces today like the nurse suggested...
applied lotion thru out the day for rash and going in the frig... the lotion that is lol
thank you everyone for being here....for responding and for all the post of your own exp. with treatment before during and after ..

crabby old guy · « **Reply #33 on:** July 14, 2016, 09:53:28 pm »

it's time,

You can't find reply #18?? I see it, Don't tell me my eyesight is going too! I get a notice via e mail when a reply is posted on a topic I'm following.

AussieRosa · « **Reply #34 on:** July 14, 2016, 11:08:03 pm »

I wouldn't say I was exhausted. I really only noticed the anaemia upon exertion. Otherwise I felt fine when just sitting around. Now I get occasional heart flutter/palpitations just sitting around. Don't know what that's about, but they're very mild so I'm not concerned.

its time · « **Reply #35 on:** July 16, 2016, 07:34:49 am »

week 2 starts today

have the sweets... started yesterday afternoon at work
took temp this morning 2 different therm.. 1 says 96.9 the other says 99.8 lol
rash hasn't gotten any better or worse.. still drinking 12 glasses of water and using the lotion thru out the day...
going to check in with g.i dr. Monday as that 1800 nurse suggested few days ago if still had rash... just to keep him in the loop..

AussieRosa · « **Reply #36 on:** July 16, 2016, 11:10:08 am »

Let us know what the GI doc says. Hope your temperature stabilises. It's always possible you've picked up a bug and it's not related to the treatment. I'd be suspicious of the meds if it were me though.

Philadelphia · « **Reply #37 on:** July 16, 2016, 06:24:17 pm »

It's time: with riba being weight based in its prescription, I was on 1100 whatevers. Mg or however it's measured. 5 tabs. But they cut me back to 2 a day. I think that was 400 whatevers/day

its time · « **Reply #38 on:** July 16, 2016, 07:14:38 pm »

i will def keep up to date on what dr says Monday...
they have me started on 1200 mg with the riba

I see how everyone has all their info posted ...when started and thru treatment...

geno type 1a
ast 62
alt 80
hcv rna iu/ml 1731263
hcv rna qn pcr 6.24 no clue what that means

nafld fibrosis score 1.759
kim tried to help figure that one out... no clue here either..

KimInTheForest · « **Reply #39 on:** July 16, 2016, 07:22:30 pm »

Hi its time. If you put your info into a sig file, it will attach automatically to the bottom of every message you post. That helps other people converse with you, because they aren't re-inventing the wheel each time by asking you your genotype, treatment history, etc. To create a sig file...

go to "Profile" (menu bar at top),
select "Forum Profile",
then scroll down til you get to "signature" and type in whatever you want.

You can update your sig file whenever your info changes.

cheers,
kim

its time · « **Reply #40 on:** July 16, 2016, 10:39:01 pm »

Kim
thank you for your help

KimInTheForest · « **Reply #41 on:** July 17, 2016, 03:38:37 pm »

Quote from: its time on July 16, 2016, 10:39:01 pm

Kim
thank you for your help

No problemo!

kim

its time · « **Reply #42 on:** July 21, 2016, 09:18:16 pm »

spoke with dr today... wants me to go for the blood work (was going sat regardless... its 2 week blood work... and then most likely chest xray....
I say I have some time of bronchial thing goin on and he's talking as its part of the treatment...
u know your own body...
otherwise the rash on thighs went away... still using the aveno and drinking all the water ... been noticing that I do get the chills at times from inside ...
heart still feels like going to pop out of my chest..
will b back w results...

its time · « **Reply #43 on:** July 22, 2016, 11:30:21 pm »

can I ask....is it normal for your heart/pulse to go haywire so to speak???
its really bothersome and scarey

KimInTheForest · « **Reply #44 on:** July 22, 2016, 11:34:36 pm »

Quote from: its time on July 22, 2016, 11:30:21 pm

can I ask....is it normal for your heart/pulse to go haywire so to speak???
its really bothersome and scarey

I had that quite a bit during treatment and did not like it at all. I have heard others here mention that too, but more with Harvoni (which I took) than with Viekira Pak. I too worried a lot about what was happening to my heart. It was not a problem I had experienced pre-treatment. I am now 1 year post-treatment, and my heart has settled back into its normal patterns. But it took a while. I would say talk to your doctor (although many doctors are not yet acknowledging this as a side effect of these drugs).

kim

its time · « **Reply #45 on:** July 22, 2016, 11:42:49 pm »

I just did some exploring and I seem to have the symtoms of anemia.....
hard to breath... chest pain ...heart racing... etc...

Philadelphia · « **Reply #46 on:** July 23, 2016, 08:18:25 am »

I didnt get chest pain, but I found it hard to pull enough air in - it was like I was breathing through a wet towel sometimes! I had anaemia from about 2 weeks into treatment onwards through the full24 weeks. I'd head to the drs if you continue to get chest pains. My heart beat faster due to the extra work needed to push oxygen round my system I guess.

its time · « **Reply #47 on:** July 23, 2016, 08:58:36 am »

isn't your heart pounding/racing like that not good?

I read with anemia i believe it said can cause enlarged heart or and heart attack...

the not being able to feel like you can take a normal breath stinks. I'm always trying to yawn to get that full breath... and you went 24 weeks Philadelphia with the breathing like that ... ughhh .... how do you feel now???
and I can't believe with so many people that are having this dr's don't acknowledge its a side effect... for them you would think it would b better to know and understand and how to handle and to inform us...
other then feeling like I'm having a 24 /7 panic attack I'm doing ok so far .. went for the blood work this morning and should have results by wed the tech said.. another question is this the riba that is making this happen??? and why do some have to take riba ...what's the dec factor on who and who doesn't?

AussieRosa · « **Reply #48 on:** July 23, 2016, 10:42:23 am »

Hi, It's Time. I had to take riba because that's the recommended treatment for genotype 1a with Viekira Pak. With Harvoni I only know of it being prescribed for those who have considerable liver damage. Most of your breathing troubles sound like what I experienced from the riba induced anaemia. I also had some heart pounding and flutters (and still do), which can be explained by the reduction in hemoglobin from riba. I also experienced occasional chills as well as hot sweats and fevers (still do). I also had terrible agitated anxiety that made the other symptoms really hard to deal with. I would try not to stress too much over these side effects. They are not so unusual. Try to hold on to the knowledge that this will only last a short time and will be worth it in the end. What is your level of liver damage?

KimInTheForest · « **Reply #49 on:** July 23, 2016, 12:54:02 pm »

Hi its time. Doctors do acknowledge anemia as a side effect of ribavirin. In fact, it is probably the primary side effect. I had it from early on in treatment, until the end - and beyond. I am a year post-treatment, and my hemoglobin and red blood cells are still below normal. Prior to treatment, they were normal.

Anemia gives you an elevated resting heart rate. Mine was often 100 beats per minute during treatment when I was just sitting doing nothing, or lying down. I was not happy about that. And I too had chest pains.

Other heart irregularities that some of us here on these forums experienced during treatment are not recognized by doctors yet as side effects - specifically, when you're lying in bed at night and your heart begins racing wildly for no reason and banging madly like it is going to break your ribs. I thought that is what you meant by your "heart/pulse going haywire." In my opinion, that is not due to anemia. (And no, I am not talking about stress or anxiety causing this. This is an electrical phenomenon/aberration that seems to be drug-induced. It stops as suddenly as it starts - and with no rhyme or reason.)

Anemia elevates your heart rate in a steady constant way in order to deliver more blood to your organs since your blood is under-oxygenated with anemia. And yes, it can be serious. That's why it's very important to have regular blood work done when you are taking ribavirin.

good luck!
kim

its time · « **Reply #50 on:** July 23, 2016, 02:06:18 pm »

kim.... you were correct.. that was what I was talking about at first... I too could b laying in bed and my heart/pulse goes haywire, makes me nervous because I think heart attack...

KimInTheForest · « **Reply #51 on:** July 23, 2016, 02:24:46 pm »

Quote from: its time on July 23, 2016, 02:06:18 pm

kim.... you were correct.. that was what I was talking about at first... I too could b laying in bed and my heart/pulse goes haywire, makes me nervous because I think heart attack...

I agree that's very scary. It happened to me throughout treatment. Has now gone away, but I am a year post-treatment. Others here too have mentioned this wild hard thumping and racing of the heart while in bed. It's as though the electrical signalling to our biological pacemaker has gone temporarily haywire. I believe it is a side affect of the drugs.

kim

its time · « **Reply #52 on:** July 23, 2016, 02:26:33 pm »

are they able to lower dosage of riba and would that make a difference with all that.... and anemia???

KimInTheForest · « **Reply #53 on:** July 23, 2016, 02:31:18 pm »

Quote from: its time on July 23, 2016, 02:26:33 pm

are they able to lower dosage of riba and would that make a difference with all that.... and anemia???

Lowering the dosage of riba is indeed what doctors normally do IF they think your anemia is serious enough to warrant it. Mine did not. But if I had it to do over, I would dose reduce myself. I do not believe it would have affected my treatment outcome, and it would have spared my body some serious stress (and potentially other problems). Not saying others should do that - dose-reduce themselves. It has to be a personal choice about what is best for you based on what you feel your body needs. But talk to your doctor first. Perhaps your doctor will agree to dose-reduction. Usually it is done in increments of 200 mg (i.e., one blue ribavirin pill). So a person on 1000 mg/day (5 pills) will be reduced to 800/day (4 pills).

kim

its time · « **Reply #54 on:** July 23, 2016, 02:36:06 pm »

thank you for all your information

i am on 1200 mg
will def talk to him when he calls this week...

KimInTheForest · « **Reply #55 on:** July 23, 2016, 02:38:15 pm »

Quote from: its time on July 23, 2016, 02:36:06 pm

thank you for all your information
i am on 1200 mg
will def talk to him when he calls this week...

Good luck!

Have you had had any blood work done since starting? What is the level of your hemoglobin and red blood cells? That is what your doctor will be looking at on the issue of anemia and possible dose-reduction.

kim

its time · « **Reply #56 on:** July 23, 2016, 04:52:00 pm »

hi kim
i went first thing this morning... today is 2 weeks 1 day ... the tech. said the dr.
should have back by wed..

Philadelphia · « **Reply #57 on:** July 23, 2016, 06:03:08 pm »

Yep, what Kim said. Anaemia is a well recognised and documented side effect of riba. I dose reduced at Drs orders during week 3. My bilirubin shot up to 152 from a starting point of 40 so that played a part in it. People absorb riba differently and tests can show significantly different concentrations in people taking the same dosage.

Talk to your doctor.

Pete · « **Reply #58 on:** July 25, 2016, 10:35:18 pm »

Hemoglobin is starting to head south. I just completed week 4 of 24 VP/Riba with no noticeable sides to report.

Hemoglobin Range 13.4 g/dL - 17.0 g/dL

@ Baseline 15.3
Week One 15.2
Week Two 14.8
Week Four 13.4

For those of you with more experience, can I expect this trend continue or do you level off at some point? In terms of anemia, some have mentioned they hit the wall at about 6 weeks, while others have reported they felt pretty good for the duration of treatment.

I dropped 2 points in one month, not what was hoping for in order to survive 24 weeks. I read one essay that stated if you drop 2 points within the first week, you were toast, and could pretty much guarantee you were going to become anemic soon. While my score thus far isn't that bad, I did clock in today right at the lower limit. I'm not impressed. Next lab draw in two more weeks. No V/L until week 8, frankly I'm not even concerned about that right now. I suspect I'll be UD at 8 weeks and have to ride out the Riba train for another 3 months after that.

Is there anything you can take to avoid becoming anemic as a result of the riba? B-12 shot, vitamin supplements, more water, beer, chocolate? I know... beer is out, but I do love chocolate.

December 12th seems like light years away right now,

Philadelphia - I did start to read your blog and intend to read all of it. Nicely done BTW.

it's time - I replied to your PM...

Mr Crabtree - Appreciate you responding to my inquiry as well, hope you are feeling better and can get back to work soon. Remember the "Mr Crabtree goes fishing" books? Well I'm really dating myself now, better go.

Pete

Philadelphia · « **Reply #59 on:** July 26, 2016, 07:11:41 am »

Quite a few people saw their haemoglobin stabilise after a drop. Others saw it drop, stabilise, then drop and stabilise ad nauseum. When it drops too much your doctors may reduce your ribavirin. Don't be disappointed if that happens. I had a dose reduction early and cleared. I did 24 weeks.

AussieRosa · « **Reply #60 on:** July 26, 2016, 11:37:51 am »

My hemoglobin dropped 15% pretty quickly and stabilised. I dose reduced myself later due to unbearable stomach issues caused by the riba. I contacted my hep c nurse and told her what I'd done. She spoke with the I.D. specialist who ok'd it, and I stayed on that dose for the rest of treatment. I cleared the virus. Not encouraging anyone to reduce their dose without talking to their treating team first, mind you.

Pete · « **Reply #61 on:** July 27, 2016, 02:13:37 am »

Different for everyone seems to be the common theme. My doctor is positive at this point in terms of hemoglobin. That's part of her character though, upbeat, positive, and always looking on the bright side. The real deal. Reassured me when expressed concern about the FDA Warning Regards to VP and cirrhosis. "...remember, I took an oath to do no harm, we'll watch everything closely, you'll be fine,"

By contrast, I had a gastro about 12 years ago. Nice guy but... he shuffled me off to his PA who was not very nice, or friendly. Tried to order me around and tell me how it was gonna be. I used to refer to her as Nurse Hatchet. It was obvious to both of us that we didn't much like each other. I was considering trying a round of PEG-INF/Riba. She was like so mean and bossy, turned me off to whole idea. Weird deal. I started canceling appt's and eventually gave up altogether on the idea until the current round of the current DAA'$ hit the market. Starting to ramble...

Thanks for the feedback, hey congrats Rosa on your SVR!
Pete

crabby old guy · « **Reply #62 on:** July 27, 2016, 03:18:28 pm »

Pete, I just looked at all my blood work and my HGB started at 16.1, a month after tx it went as low as 12.2, riba dose was reduced and after 4 weeks it's been stable at 13.2. Blood work is done every 2 weeks. Doesn't change the fact still feel crappy. Good luck w the rest of your tx.

Pete · « **Reply #63 on:** July 28, 2016, 02:54:17 am »

Hey Crabby, looks like you dropped a point per week right out gate. I bet that was unpleasant. 13.2 seems doable if it hangs in there. I know you've got other health concerns goin' on a the same time. That sucks.

I recall you mentioned that your doc was being pretty firm about you not stopping the riba portion of you tx. I'm sure your doctor has your best interest in mind and sees that as you best shot. By contrast, mine told to me that if the side effects were really making things really tough, (like not being able to work for example), that the riba could be discontinued if absolutely necessary. But also emphasized the importance of staying with the riba for at least 12 weeks, and finishing treatment duration with just the vp. She added the longer you can tolerate the riba the better chance for of SVR.

I think if I get really ill from this, I might consider a medical leave like you did for you circulation concern. I really want beat this virus this time, might be my last best chance.

Hang in there Mr Crabtree, you should be coming around the last turn about now, this finish line will be in sight soon.

Pete

its time · « **Reply #64 on:** July 28, 2016, 09:45:55 pm »

hi everyone.....
quick pop in will b back thou...
went to dr today because of my heart feeling like going to pop out of my chest, pulse racing etc....
blood pressure is good 125 over 80
and of course I forgot to grab copy of my 2 week blood work..
I do remember him saying my start 1.7 million is now 20 ... i asked 20 what lol ...he said just 20 ...says need that 0 ....
and that my alt ast where in normal range (don't remember) but was 62 and 80 (or close to that-can't remember 100%) i will stop in tomorrow to pu copy...
he did inform me i am on my way to anemia oh joy....
i started 15. something and 2 weeks 12.something...i go back for blood work again in another 2 to 3 weeks
my glucose in april was 109 and now 117 my primary in april did a more detailed reg surger and shows i am not pre diabetic... so what gives g.i dr says lose 10 pounds and you will see the number drop.. idk

Pete · « **Reply #65 on:** July 28, 2016, 11:59:18 pm »

Hello it's time... It's time for you to start paying very close attention to you labs and what they mean. My experience is that some doctors will tend to be vague about results unless understand the numbers and ask the right questions.

If I'm reading your email correctly, your hemoglobin dropped 3+ points in 2 weeks? And that he stated you were going to become anemic. Did you ask him what's the plan if that should occur? Next blood draw not for 2 or 3 weeks? If I experienced an drop of that significance, I would ask for additional lab tests (weekly) to watch that like a hawk. You don't need the V/L or LFT's included. The CBC will include your hemoglobin level and your insurance is less likely to complain.

My NP told me she's had patients who's hgb level dropped into the low 11's and had no trouble, others weren't so lucky and became quite fatigued as a result. She couldn't recall the patients baseline hgb or weight when asked. Symptoms do vary from patient to patient so this can be tough to predicate.

Congrats on the V/L drop to a mere 20 after only 2 weeks, that's impressive! Be well and I hope you end up not only slaying the beast, but tolerating the meds well along the journey.

Regards,
Pete

its time · « **Reply #66 on:** July 29, 2016, 05:40:46 pm »

hi pete
you did read correct regarding hemoglobin
I did ask what is the bottom number before he pursues anything and he said 7....
he had said you go for shot and that should work...otherwise he talked about stem cell and blood transfusion..... which honestly that all sounds a bit much... I pray it doesn't get to that
he had also mention that the companys are trying to see if they can shorten the time of treatment... he had one person that stoped at 8 weeks and had a flair up..:{
he said I need to follow thru for the 12 weeks...
I'm starting to feel lil tired now... I usually am running around crazy and head don't hit the pillow till close to 12 now its btwn 9 and 10 I didn't have time at lunch to run and pu copy of my labs.. tomorrow will b 1 week since first blood work.. and today is 21days on treatment...

did anyone respond to your is there anything u can do to try and prolong the drops
I to like the chocolate lol

KimInTheForest · « **Reply #67 on:** July 29, 2016, 06:38:23 pm »

Quote from: its time on July 29, 2016, 05:40:46 pm

hi pete
you did read correct regarding hemoglobin
I did ask what is the bottom number before he pursues anything and he said 7....
he had said you go for shot and that should work...otherwise he talked about stem cell and blood transfusion..... which honestly that all sounds a bit much... I pray it doesn't get to that
he had also mention that the companys are trying to see if they can shorten the time of treatment... he had one person that stoped at 8 weeks and had a flair up..:{
he said I need to follow thru for the 12 weeks...
I'm starting to feel lil tired now... I usually am running around crazy and head don't hit the pillow till close to 12 now its btwn 9 and 10 I didn't have time at lunch to run and pu copy of my labs.. tomorrow will b 1 week since first blood work.. and today is 21days on treatment...

did anyone respond to your is there anything u can do to try and prolong the drops
I to like the chocolate lol

Hi its time. A doctor should pursue dose-reduction of the ribavirin BEFORE any talk of epo shots or stem cells or blood transfusion for the hemolytic anemia induced by ribavirin, and certainly before discussion about shortening treatment time! Dose reduction is common for people on ribavirin. It is only the riba that is reduced - not the Viekira Pak drugs. If your doctor isn't familiar with this (the fact that dose reduction should be the first line of action in addressing the riba anemia) then consider seeing another doctor.

kim

its time · « **Reply #68 on:** July 29, 2016, 07:38:08 pm »

kim at what point is it a thought to reduce???

Pete · « **Reply #69 on:** July 29, 2016, 09:50:47 pm »

Here's one on vitamin D3 potential

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4211774/

If your like me and find your eyes glazing over reading this data, cut right to the end.

In conclusion, we suggest that RBV could induce normocytic normochromic anaemia by decreasing endogenous EPO at the kidney and serum levels and subsequently suppressing erythropoiesis. Supplementation with vitamin D3 could protect against the associated anaemia with ribavirin by stimulating the production of endogenous EPO. Further studies are needed to illustrate the clinical value of vitamin D supplementation in the treatment of hepatitis C virus and the prevention of the associated anaemia.

crabby old guy · « **Reply #70 on:** July 29, 2016, 09:53:01 pm »

It's time, What kind of doc are you seeing, reg one, GI or some other kind? Sounds kind of drastic talking about B-12 and stem cells. After 2 weeks my rbc dropped to low (3.61) and the docs nurse called 3 days later and lowered my riba from 1200 to 800 it still is flagged as low but just a little, last one is 4.13. I don't see why he would wait till your hgb hit 7 before doing anything, ask him about lowering the riba. As far as your blood sugar goes, mine goes all over the place even though I drink and eat the same thing before going. It's been as low as 59 and as high as 180.

crabby old guy · « **Reply #71 on:** July 29, 2016, 09:58:18 pm »

In my case I was already taking 4000mg of D3 for the last 3 years and I still dropped.

its time · « **Reply #72 on:** July 29, 2016, 10:06:41 pm »

crabby old guy I am seeing a G.I
so you would think he would now say to reduce from 1200

I will call office next week to inquire.. are they doing anything else for you since yours is very low??
and pete I'm going to read article now... thank you for sharing

KimInTheForest · « **Reply #73 on:** July 29, 2016, 10:12:24 pm »

Quote from: its time on July 29, 2016, 07:38:08 pm

kim at what point is it a thought to reduce???

opinions seem to vary between doctors. in the old days, when riba was combined with interferon, I believe a hemoglobin of 10 was what triggered ribavirin reduction. however with the new drugs, many (but not all) doctors let it fall lower than 10 and seem to feel it is still 'safe'. Mine fell to 9.5 and I felt terrible, I could barely move or do anything or go anywhere, I was quite worried about my heart. But my doctor said i wasn't in danger unless it fell to 7. So I was not dose-reduced. but if I had it to do over, i would have dose-reduced myself and kept my hgb at or above 10 throughout treatment. I do not believe it would have affected my treatment outcome.

Also, that 7 number only pertains to people with no pre-existing heart condition. If there is any history of heart issues, then a person should not be allowed to fall that low. I personally don't think anyone should be allowed to fall to 7 hgb when a dose reduction of ribavirin would prevent that.

And then there is the fact that some people feel terrible even when their hgb is still within normal range, while others drop below normal and don't feel all that bad. So everyone is different, and doctors need to take that into consideration but most don't.

kim

crabby old guy · « **Reply #74 on:** July 29, 2016, 10:30:07 pm »

it's time, I would call the the doc on Monday and ask him about it, tell him about the shitty side affects, what is your red blood cell count? he should be monitoring your blood results. I was told by the hep-c pharmacist that they should be treating the whole person not just the disease. My HGB is stable at 13.2 and rbc at 4.13 both a little low but its 34 more days and I'm done so I'm dealing with it. I got shitty w my doc and asked if anyone was even looking at my results with all the stuff flagged high or low and not hearing anything. Now when I get my results I get a message from her explaining things.

Pete · « **Reply #75 on:** July 29, 2016, 11:42:55 pm »

Quote

My HGB is stable at 13.2 and rbc at 4.13

That's just about where I'm at after 4 weeks. Here's a bit of good news, I did end up getting my first V/L test and the result shows significant drop down to 25 iu/ml from 4.5 million iu/ml. Not undected, but a much better number than Harvoni after the same period.

I'm now on a 4 week interval for labs, I put in a request to increase the CBC to every 2 weeks. By the time I get my next full set of test results Crab will likely be finished up altogether and for good I bet!

Quote

I was already taking 4000mg of D3 for the last 3 years and I still dropped.

I going to up my vitamin D3 to 5000 iu twice daily just for sport, can't hurt anything.

Have a great weekend everyone, Pete

crabby old guy · « **Reply #76 on:** July 30, 2016, 01:05:24 am »

Pete, when I started a nurse told me bloodwork is done every 2 weeks because of the riba. need to watch the HMG and rbc, which turned out good cause they caught the drops right away.

BillT · « **Reply #77 on:** July 30, 2016, 11:05:51 am »

The only blood works that counts is the EOT.The anemia and everything else can be dealt with.

Pete · « **Reply #78 on:** July 30, 2016, 10:27:54 pm »

Point taken BillT.

its time · « **Reply #79 on:** July 31, 2016, 08:53:58 am »

billt I understand what your saying...
I don't want to b THAT person to b doing nothing but complaining
last night at movies with my family I found It hard to concentrate on the movie because I couldn't get full breath in and my heart was racing.... I tried to shake it off but just wasn't happening... and started to get myself upset .. which didn't help.. mentally I'm normal as normal can be but afraid this will drive me bonkers if I don't figure how to deal with it..

its time · « **Reply #80 on:** August 06, 2016, 10:46:39 am »

gm...
went for 1 month lab work this morning ... dr's apt this week ..thur I believe..
will post results of both ...

busted open second box of meds this morning, good feel knowing only to order 1 more..

1 day at a time ... 1 day closer to EOT...

its time · « **Reply #81 on:** August 07, 2016, 07:51:38 am »

Pete (since on same tx) or if anyone knows...

NAFLD fibrosis score -1.759 what does that mean?

that was my pre -treatment blood work..

its time · « **Reply #82 on:** August 09, 2016, 05:38:12 am »

noticed at night feel bit nauseous lately and in the morning upper part of stomach feels like its irritated little ....

hope everyone is doing ok...

1 day at a time...1 day closer to EOT

crabby old guy · « **Reply #83 on:** August 09, 2016, 04:40:14 pm »

its time, I had the stomach stuff going on too, are you taking your meds w food? its a must w riba, I would eat a pudding cup then take the meds, I hate yogurt but I would get the gogourt an eat a couple a day.

its time · « **Reply #84 on:** August 10, 2016, 05:52:17 am »

gm :} crabby old guy....
yes I do eat something before taking... and this still happens..
its in the evening when feel nauseous after taking pm and literally when I wake up have that irritated feel in upper part of stomach (before taking the a.m)

its time · « **Reply #85 on:** August 11, 2016, 05:07:37 pm »

Dr's office called me today ... gave me results of my 4 WEEK bloodwork over phone don't want to see me till end of august... VL UNDETECTED

I did run over at lunch to pu 2 week lab and 4 week lab work
does anyone know what RDW means??? I'm 15.7 range is 11.0 15.0%

next bloodwork not till 8 weeks

I remember it being said those on riba should get checked at least every two weeks?? so I am going to get my primary to do reg bloodwork...

thank you for all your knowledge... your journeys you share... and your support...

hummingbird57 · « **Reply #86 on:** August 11, 2016, 06:20:38 pm »

Hey Its Time -

You must feel great - don't know about the RDW but sure someone will be following up soon.

So happy for you! Shout out to our other "July tx time starter" - Flutterby

crabby old guy · « **Reply #87 on:** August 11, 2016, 09:10:31 pm »

its time, the RDW is a test of the red blood cells. I wouldn't worry about it, As far as the stomach thing goes I'm reliesing with me stress has a lot to do with it, I've been off work since 6/16 and dealing with 2 ins company's screwing me over. Things finally started falling into place and I actually felt half way human and actually slept good for 2 nights and no stomach issues. But then the disability ins closed my claim and had me blocked from getting through on the phone, stomach crap back right away.

Seeing as I'm typing here's my update, Had a liver CT end of July, on the 3rd my doc called and said theres 2 small cysts and 2 other little thingamajigs but nothing to worry about, liver looks better than when I started, then because of the sides she had me stop the riba. Had the surgery on my leg on the 10Th, Went in through my upper thigh with a cathader into a big vein all the way to my foot and seared the vein closed as they backed it out, then 8 small incisions to remove some surface ones. Think I've been through enough stuff for the year. 22 more days to go!

Pete · « **Reply #88 on:** August 13, 2016, 10:33:40 pm »

Holy smokes Crabby, I'm thinkin' you're way overdue for some good news this year. How about SVR for starters, that should help you turn the corner.

Congrats on the UD V/L It's Time !!

Think I'll crawl back into my hole for few weeks. I'll be 1/3 done by next weekend, still feelin purty good... Check in later.

Pete

its time · « **Reply #89 on:** August 14, 2016, 10:30:15 am »

crabby old guy.... want to start with my husband loves that name...

enough for a year??? I would say longer then that... holy cow... it rains it poors
but one step at a time you are coming out on top!!! :} as pete pretty much said your ready for some good news and with 19 days to go for you now.. its rigt there!!

hope you are feeling better...

pete .. thank you :}

hummingbird57 - thank you ... weird because as much as I feel I should be relieved by results... I don't feel that yet ?? don't get me wrong I'm VERY happy it came back undetected... I think after treatment done and all the follow up bloodwork and praying it still all comes back undetected I think that's when I will feel the weight lifted??? idk 1 day at a time 1 day closer to EOT

its time · « **Reply #90 on:** August 22, 2016, 05:55:56 am »

well ive had mention prior started to feel alittle nauseous in the evening right before it was time to take the meds .... now its really kicking in .. :[ and waking up to it too...

its time · « **Reply #91 on:** August 26, 2016, 06:08:07 am »

hope everyone is doing best as can be....

going to dr Monday for 2 month visit..will pu script for bloodwork

its 7 weeks today.. wow

the 1 800 nurse called yesterday to chk in on me... glad they do that and you have access to them and their pharmacist all the time..

1 day at a time 1 day closer to EOT

its time · « **Reply #92 on:** August 31, 2016, 10:08:12 pm »

went to dr's Monday.... not much to report till after I go for bloodwork Saturday..
otherwise he told me to not drink as much... I was drinking 12 8 ounces a day... going back to the 8 - 10 will see how I am
cough seems to have days where its around to let me know and there are days its nothing much..
hope everyone is doing their best.... positive thinking works wonders!!!

1 day at a time ... 1 day closer to EOT will be 2 months Friday... not that I haven't been counting but now so close to the finish line with the treatment.... then count down till 12 weeks after treatment... God willing all will be good... .. as I pray for all it will be..

Brendan813 · « **Reply #93 on:** September 01, 2016, 09:44:59 am »

YO yo yo, lol, what's up? Congrats on startIng treatment. As noted before, dont think too much. SIde effects, for me, are weakness, fatigue, and most annoying is nausea, also low grads fevers and headache.I had to go up on my Methadone.
Oh, ViEkra and ribavirin, 12 week therapy which I started 5 weeks ago. I dont have the paper but my viral load was well over, 10 million. Now, its undected. I was fucking shocmed (so was El Doctoro, his eyes were wide open)
My advIce, what has worked for me, is rest. Going to bed and waking up at the same time. No drinking and drugging obviously. Also, trying to eat every 2 to 3 hours, protein packed snacks. And Frosted Mini Wheats!
I am bipolar and have chronjc pain so I take a lot of meds,
Prozac, Lamictal, Gabapentin, Trazadone, Zanaflex, and the Methadone I mentioned. For nausea, I take prilosec and occasional Zofran when its bad. I try my best not to mess with Tylenol or NSAIDS, but sometimes I will take an Excedrin. The caffeine seems to really help.
Everybody and every mind is different, remember that. Do what works for you. Good luck and God Speed.
Brendan
Addiction Soldier
5 months clean,
Tampa FL

Brendan813 · « **Reply #94 on:** September 01, 2016, 09:52:05 am »

Also, a big shot out Thank You to The Pharmacuetical Co. And Accredo Health Group in Orlando and Memphis.

hummingbird57 · « **Reply #95 on:** September 01, 2016, 01:21:41 pm »

Quote from: its time on August 31, 2016, 10:08:12 pm

went to dr's Monday.... not much to report till after I go for bloodwork Saturday..
otherwise he told me to not drink as much... I was drinking 12 8 ounces a day... going back to the 8 - 10 will see how I am
cough seems to have days where its around to let me know and there are days its nothing much..
hope everyone is doing their best.... positive thinking works wonders!!!

1 day at a time ... 1 day closer to EOT will be 2 months Friday... not that I haven't been counting but now so close to the finish line with the treatment.... then count down till 12 weeks after treatment... God willing all will be good... .. as I pray for all it will be..

Hi everyone -

Its Time - good to hear from you and that you're doing well. Week 9 and grateful for the science but hurting for those having a rough time of it. I hope that your doc is wanting you to reduce H2O and not brews

Brendan - I'm shouting out as well but to Australian generics! Sounds like you've got a plan. Good luck!

B-

its time · « **Reply #96 on:** September 03, 2016, 10:07:04 am »

question:

how important is it to take these meds same time every day.... I started off good 8 am but during the week with my schedule at work... sometimes its anywhere btwn 8 and 830... hope it isn't a big thing :|

hummingbird57 I take it you are doing well with the trtment??? I hope so :}
how is flutterby doing...haven't seen any posts...

Brendan...that's awesome news for you ... keep powering thru..and keep on posting .
hope you guys are doing ok out there in flr..

its time · « **Reply #97 on:** September 03, 2016, 10:58:51 am »

another question..... has anyone gone the 12 weeks @ the 1200 mg w riba?

hummingbird57 · « **Reply #98 on:** September 03, 2016, 05:34:15 pm »

Quote from: its time on September 03, 2016, 10:07:04 am

question:

how important is it to take these meds same time every day.... I started off good 8 am but during the week with my schedule at work... sometimes its anywhere btwn 8 and 830... hope it isn't a big thing :|

hummingbird57 I take it you are doing well with the trtment??? I hope so :}
how is flutterby doing...haven't seen any posts...

Brendan...that's awesome news for you ... keep powering thru..and keep on posting .
hope you guys are doing ok out there in flr..

Its Time - doing well and week 10 starting - then first EOT bloodwork. Thanks for checking in on me.

Flutterby! How's it going with you?
Best to everyone !

LightBeingAtLast · « **Reply #99 on:** September 03, 2016, 06:01:40 pm »

I started my treatment this morning as well. I'm on Harvoni for 12 weeks. Stage 4 liver disease = fibrosis. Fibrosure blood test said 3, but ultrasound said 4 so I'm taking the plunge. I too, have a lot of hesitation about taking these meds. They are still pretty new and have great results but these isn't long term data available. Guess we will be part of that. I had breast cancer 5 years ago...whew...that was life changing and these feels like as big a decision as that treatment. I agree with Kim, most people who have no side effects or minimal ones aren't the ones who will be posting on this site. It makes sense to me.

Less than 12 hours into it I am having some GI rumbling and sort of a spacey feeling in my head. I am drinking lots of water. I've had hepC for 40+ years, I'm 64 and in above average health, I think. For me I have chosen to be positive and heal from that perspective. I don't expect big problems with this treatment but will just deal with them as they come along. Naïve, probably. Hang in there. I'm going to be on here often. It helps me to share my experience with others who have already been there. Thanks for any info from anyone. Blessings of love and light.

Philadelphia · « **Reply #100 on:** September 03, 2016, 07:41:14 pm »

It's Time - I was always within an hour or so of talking the meds and I cleared just fine. I also dropped to 400mg of riba after three weeks and stayed on that dosage for the remaining 21 weeks.

LightBeingAtLast · « **Reply #101 on:** September 05, 2016, 05:52:37 pm »

Thanks! Time...isn't most of life about timing!

its time · « **Reply #102 on:** September 12, 2016, 09:23:41 pm »

picked up 2 month lab work
says hbg 11.9 which is teetering on low end normal ... id say its drop since blookwork done on 9/3 ..I feel a big difference ..even more tired now... still out of breath easily which I hope that will change after treatment done...
I want to ask dr after treatment if they can do a full chk up ...heart kidneys etc...think that's crazy?? also started today a pain .. left side but close to upper center... hope that made sense..
hope everyone is doing best they can....

1 day at a time 1 day closer to EOT ( 18 to go )

flutterby, pete and hummingbird57 we are just about there... hope to hear from ya's

its time · « **Reply #103 on:** September 17, 2016, 12:03:50 pm »

13 days to go.... can't come soon enough....

the nausea is really kicking in ....happens more thru out the day now where it was just later in the evening... was trying not to take anything but going to call the 1800 nurse/pharmacy and see what I can and if there any special instructions on when etc...

1 day at a time 1 day closer to EOT...

Philadelphia · « **Reply #104 on:** September 17, 2016, 06:30:24 pm »

I found the last two weeks the worst. More because I was so close to finishing and yet still had two weeks left ...
Hang in there. You are nearly done.

crabby old guy · « **Reply #105 on:** September 17, 2016, 10:06:49 pm »

EOT was 9-1, went for blood work on 9-2 and then got a voicemail a week later that was all broken up and could only make out that they forgot to run 1 test, DUH- the most important one! Left a mess with the nurse and never got a return call. Gotta say the depression is no better, I know there was some before starting and having to put 1 of my cats to sleep in June and my other 2 weeks ago doesn't help, the way I see it is I will not go through treatment again so I'm just going to wait for12 weeks call the doc and get the blood work done and get meds for the depression if it's not better.

Hang in there everyone!

Philadelphia · « **Reply #106 on:** September 18, 2016, 06:40:00 am »

Your EOT blood test tells you nothing of any importance in regards to SVR. Just wait for the 12 week one.

I get the sadness of losing a pet - our old dog is 17 and I dread the day we have to make that decision. I know it's coming, but it's not here yet.

In terms of depression - why not see a dr now about it? you might feel better.

Lynn K · « **Reply #107 on:** September 18, 2016, 11:22:28 am »

Hi it's time

I started treatment for 24 weeks of Harvoni alone. Had a discussion with my doctor about adding ribavirin due to my cirrhosis and prior treatment history. She agreed so at 9 weeks in I started taking 1200 mg ribavirin. At my weight I was just over the 1000 mg / 1200 mg decision line. I had also developed anemia the 2 prior times I had treated with ribavirin.

Anyway after 6 weeks of ribavirin my hemoglobin (HGB) fell below 10 so my doctor dose reduced to 100mg at that point. Had I not become anemic I am sure I would have stayed on the 1200 mg.

I took ribavirin 1200 mg for 6 weeks and 1000 mg for 9 weeks after for a total treatment 24 weeks of Harvoni 6 weeks of ribavirin 1200 mg then 9 weeks of 1000mg ribavirin (15 weeks total of ribavirin)

But there are many people who do not develop serious anemia and have taken the full 1200 mg dose for 12 weeks and even longer. For those that did the old interferon treatments they had a shot a week of interferon and 1200 mg ribavirin daily treatment duration of 6 months

lporterrn · « **Reply #108 on:** September 18, 2016, 11:48:43 am »

It's a good day to start treatment! I had a similar reaction, but it got better on day 2.
Wishing you a safe, successful journey.

Lynn K · « **Reply #109 on:** September 18, 2016, 12:14:43 pm »

Oh hey crabby sorry I missed when you said you had lost your little kitty friends

Sending you a hug

lporterrn · « **Reply #110 on:** September 18, 2016, 12:35:57 pm »

Ooops! I thought I was replying to LightBeing...didn't see page 2. Crabby - my reply wasn't to your message. You hang in there too!

AussieRosa · « **Reply #111 on:** September 19, 2016, 12:17:54 pm »

Quote from: crabby old guy on September 17, 2016, 10:06:49 pm

EOT was 9-1, went for blood work on 9-2 and then got a voicemail a week later that was all broken up and could only make out that they forgot to run 1 test, DUH- the most important one! Left a mess with the nurse and never got a return call. Gotta say the depression is no better, I know there was some before starting and having to put 1 of my cats to sleep in June and my other 2 weeks ago doesn't help, the way I see it is I will not go through treatment again so I'm just going to wait for12 weeks call the doc and get the blood work done and get meds for the depression if it's not better.

Hang in there everyone!

Hi Crabby.
Glad to hear you made it through treatment. I've got 2 kitties, so understand how attached we get to them. They're both getting along in years now and the thought of losing them is just too much to bear. That and depression to boot is a tough combination. Getting some antidepressants soon might provide a lot of relief. Wishing you all the best with everything.

its time · « **Reply #112 on:** September 24, 2016, 08:38:13 am »

crabby old guy please go see the dr. about depression... you shouldn't have to suffer with it... have two cats myself understand completely how you feel... they are family

I can't believe I'm at this point.... including today I have 7 more days to go... three months have gone by so fast... can say that now... I'm glad I did this and hope and pray that the end of December.(will be 12 weeks after treatment) I will have great news and then actually feel FREE, nervous at same time because what if I'm that one that it fails I'm sure everyones fear. however positive thinking does wonders for the mind and body. also hope all the sides have lessen if not gone away... I'm still going to ask about getting a full work up heart lungs etc...
to anyone that browses ... thinking about treatment everyone is afraid of the unknown... how will the sides affect me etc... you don't know and you can start upping your water before treatment and keep going thru out and after that can help if you do have sides theres something to do to try and help with it... and this site... all the people the support to help get u thru it... very thankful for them... 1 day at a time 1 day closer to EOT

its time · « **Reply #113 on:** September 24, 2016, 01:25:01 pm »

continued:

of course under your dr's care they instruct what to and how to handle

Tlk60 · « **Reply #114 on:** September 30, 2016, 12:44:05 pm »

Hello all...I am new to this site...got dx in late July of type 1a...first gastro appointment was Aug. 23...had ultrasounds and MRI and returned to doctor on Sept. 23...was prescribed VP and Riba...I have BC/BS of Florida insurance and am in the waiting stage for approval/denial for meds. THe office visit claim and blood work claims for that date have been processed and paid by insurance but the pharmacy claim for the meds is not showing up on my insurance website yet. Can anyone fill me in on this process and how long it will take before I can get started kicking this virus' butt?

Lynn K · « **Reply #115 on:** September 30, 2016, 04:11:19 pm »

Hi Tlk60 and welcome

As I recall it took about 2 weeks to get my initial denial then another week or so for my appeal. Do you have to use express scripts? They have a contact number that was how I got help to get approved. I was required to receive my meds from them they sent them Fed Ex or UPS had to get one month at a time and could not order until I had less than 1 weeks on hand nerve-racking to say the least.

But from what I understand approval is more likely now than it was 2 years ago.

Good luck

its time · « **Reply #116 on:** September 30, 2016, 09:02:04 pm »

july 9th I sat at my kitchen table and starred at the 6 pills that I was going to start taking for the next 12 weeks in the a.m bunch of thoughts ran thru my head and knowing that once I started there was no turning back... I finally did take them...and instantly wondered what i was in for and was I really ready... and here I am 12 weeks later and about an hour ago just took my LAST batch of meds... once again starred at them but this time thought about that first day and all the days up to today.... said a prayer of thanks.... and took the last 4... go for my 12 week bloodwork tomorrow morning.... now I am very happy that bloodwork prior shows undetected and pray for that again tomorrow however the waiting for the true test in another 12 weeks ( end of December ) ohhh boy.... hope and pray will start off 2017 undetected... and then will actually feel like I am free... weight lifted... cause I still do feel a heaviness carried... thank you to those who took the time to talk with me thru this... will keep posting 1 day at a time ...

its time · « **Reply #117 on:** September 30, 2016, 09:16:55 pm »

TIK60 WELCOME!!!
it took about a month for it all to get squared away... my dr put in for harvoni.. I laugh cause I hear him in my head saying ohh its no big deal.. just 1 pill a day etc... well it was denied which I didn't know till I got letter in mail and then stating they would cover the vpak and riba... which I then rec'd phone call from express scripts waiting for confirmation to send 1st shipment... they were good.. they would call to sched again by mid 3rd week and I would have within 2 days.. went back to dr and said so much for the 1 pill a day ... now 10 pills a day either way... very thankful for them... have now completed my 12 weeks as of tonight...
keep us posted how things are going and when you start... good luck

Tlk60 · « **Reply #118 on:** October 01, 2016, 02:23:50 pm »

Thanks so much...so I hope I only have 2 more weeks before I can start treatment...just like everyone else...I have a lot to live for and four precious small grandchildren that I must watch grow up! I just need to learn patience.

I walk 4 miles a day trying to get myself healthy for treatment and pray side effects aren't too bad.

its time · « **Reply #119 on:** October 01, 2016, 08:26:00 pm »

TIK60
that's great that your already active... keep that going...but also if you get tired listen to your body.... I was told when I first started by others water, water water... it helped I feel too...if you look on the first page there is a couple spots where water was talked about... i'd give dr call..and ask thou of rec amount he suggest for you..

have to say it felt weird not taking meds today after 12 weeks... i'll adjust real quick thou lol
lots of prayers that end of dec I will b blessed with "cured" ... so mentally nerve racking .. what if... ugggg but still staying positive... goes a long way ...

Tlk60 · « **Reply #120 on:** October 04, 2016, 06:41:12 am »

Well got up at 4:30 am to take my morning 3 mile walk and noticed mail on the counter. Opened it to find that my insurance had sent my request for V Pak and Riba to Prime Therapeutics to provide "pharmacy drug benefit management services." After reading page upon page of gibberish I find that I have been denied Riba and the reason section was blank....on to the next letter....same as above but for V Pak...denial reason...."You have not been prescribed Harvoni...you do not have an FDA labeled contraindication to this drug, you do not have severe renal impairment or end stage renal disease" The explanation of me not having a contraindication for the drug states that I do not have a health condition or risk factor that may cause harm if I take the drug?

Soooo needless to say I continued on with my walk and only got 1 mile in before I fell apart and came back home. I am so frustrated!!! So I am not sick enough? I have to wait until my kidneys and liver are damaged beyond repair? How in the world is this okay for someone to work really hard, pay into insurance only to be denied life saving therapy? I really need some encouragement right now and some direction on which way to go.

Philadelphia · « **Reply #121 on:** October 04, 2016, 08:40:11 am »

Tlk I'm not from the US so not overly familiar with your insurance companies but it appears that sometimes you have to appeal their decisions. Those that do seem to get their drugs - it just takes a little longer. I believe there are patient advocates that can help the process along and I'm sure someone will chip in with lots more info for you.

Keep your chin up, you'll get there.

its time · « **Reply #122 on:** October 04, 2016, 08:55:13 am »

TIK60
I'm sorry to hear such a hard time ....beyond frustrating..
have to get in touch with your dr I know mine before process started had said it will most likely b rejected and then he would have to write an appeal in regards and how patient needed this treatment...
and if its past that ask your dr whats the next step...
good luck TIK60 it will all work out...

Tlk60 · « **Reply #123 on:** October 04, 2016, 09:59:01 am »

Thanks guys. I have pealed myself from the ceiling...hahahaha...now I am mad! I have a call into my doctor's office and am trying to be patient and wait to see what they have to say. (whether they file an appeal or if I need to) It has already been almost 3 months from the time of diagnosis to this first denial from insurance. I have had numerous blood tests and ultrasounds. I was reading that my insurance settled a class action law suit earlier this year for denying patients exactly like they did me. I guess that law suit didn't do much good. Now I just have to try to manage the stress because that isn't good for my health either. I will keep you all posted.

Tlk60 · « **Reply #124 on:** October 04, 2016, 10:01:41 am »

It's Time...I am so happy for you that you finished your treatment!!!! I will of course pray that you get the much wanted "Cured" in December!

Lynn K · « **Reply #125 on:** October 04, 2016, 02:20:45 pm »

Hi Tlk

Looking at what you wrote "denial reason...."You have not been prescribed Harvoni" and not seeing your entire letter is it possible you insurance prefers you be prescribed Harvoni and not Viekira Pak with ribavirin?

If this is the case the solution maybe to have your doctor prescribe Harvoni for you instead.

Is there a reason your doctor wanted to prescribe Viekira instead of Harvoni for you? There is probably a phone number you can call for information on the letter but if your pharmacy benefit manager is anything like mine express scripts bring patience to the call and expect to be routed to different people (some who can't pronounce the drug names) but eventually you might be able to get an answer of what they do want you to do to get treated.

Best of luck to you

Lynn K · « **Reply #126 on:** October 04, 2016, 02:29:18 pm »

"The explanation of me not having a contraindication for the drug states that I do not have a health condition or risk factor that may cause harm if I take the drug?

"

I believe that is correct that you could only be prescribed Vikira Pak instead of Harvoni if you have a contraindication against Harvoni and that if Harvoni is not contraindicated that is their preferred drug at least that is what I am reading from what you posted from the letter you received.

Personally I would prefer to take Harvoni if that is the situation here. One pill a day for 12 weeks and no ribavirin just as effective and no risk of ribavirin side effects

Tlk60 · « **Reply #127 on:** October 04, 2016, 08:26:33 pm »

Thanks Lynn K...spoke to my dr office today and they said the reason the prescribed V Pak and ribo is that it was in my ins formulary. Apparently my version of BCBS is different and Harvoni is the preferred drug. seems as if it was a misunderstanding of my coverage by my doctor. Ugh... they have now submitted a request for Harvoni....so waiting again to see if that will be approved.

Tlk60 · « **Reply #128 on:** October 04, 2016, 08:36:09 pm »

Also Lynn K I believe I am relieved that I may be able to take 1 pill a day and no ribavirin because from what I have read...it comes with pretty severe side effects.

Lynn K · « **Reply #129 on:** October 04, 2016, 10:13:58 pm »

Well some people have more trouble with ribavirin then others do. I took ribavirin for 15 weeks. I did become anemic while in treatment and that is a very common side effect but it doesn't affect everyone. Some people have an easy time with ribavirin but it is great to be able to avoid it if you can.

its time · « **Reply #130 on:** October 05, 2016, 11:38:28 pm »

tik60 glad to hear that its figured out

u should be on your way to starting in no time..
the riba as lynn k stated everyone is different as some people have reaction to the harvoni too as I have read... less likely but have read some... and if don't have to take riba that's great....
I just rec'd my EOT bloodwork and did not become anemic which really shocked me ... I thought for sure was happening as each time my bloodwork was done my hemoglob. would keep dropping BUT news today it actually went up

I'm happy with that and still UNDETECTED .... although again don't feel that weight lifted yet ..staying positive thou... not that I am rushing to December but I kinda am lol praying for that CURED..
the worst for me on vp & riba i'd have to say was the heart racing / pulse felt like going to pop out of skin... but that wasn't for the whole treatment although when happening felt like and eternity.... and I have the riba couph which dr on Monday gave me antibiotics says bronchial... going back tomorrow for re check
Keep us posted tik60 one day at a time... drink water and stay positive especially if you feel things are hard that day... does the body wonders

Tlk60 · « **Reply #131 on:** October 06, 2016, 04:08:01 pm »

Another frustrating day...got a call from a doctor's office to schedule a liver biopsy...

....I had spoken to my doctor and we had decided IF my insurance company required a biopsy I would prefer to have the fibroscan...so image my surprise when I got a call from a doctor I did not know telling me my doctor had referred me for a biopsy?

I went ahead and let her schedule it for next week on the off chance that my insurance insisted on it. I called my doctor's office and was told "We didn't order that." Well who did?? I didn't.

Of course my doctor was out of the office so the lady on the phone said she would send my doc a message and see what she wanted to do. As far as I know, my insurance has not requested anything..the specialty pharmacy has denied coverage for VPak and Ribo because I haven't tried Harvoni yet so a new order for Harvoni was submitted on Tuesday? I am just left shaking my head. Enough already...please just let me start my treatment! I know others have waited longer than 3 months to get started but I am beginning to wonder if I am ever going to get going with treatment!

its time · « **Reply #132 on:** October 08, 2016, 09:47:05 am »

posted 12 wk EOT bloodwork.....question reg ast & alt does that usually fluctuate??? meaning even within range anytime you go for bloodwork will it always b different or should it b the same... since treatment it had gone down but this last one went up a couple.... should I start to worry?

went to dr mon for sinus and cough (riba couph) gave 5 day antibiotic says sounds bronchial...went back on wed head feeling better but not the cough .. gave me cough med now and said sounds like bronchitis ughhh its Saturday I finished the 5 day pak but still feel off in my chest

Lynn K · « **Reply #133 on:** October 08, 2016, 11:50:18 am »

ALT and AST vary all the time. Normal range is normal range no worries.

its time · « **Reply #134 on:** October 08, 2016, 12:11:53 pm »

Lynn K THAAAAAANK U

its time · « **Reply #135 on:** October 15, 2016, 09:23:20 am »

ok another question.... after treatment finished.... is it 12 weeks or 44 weeks or even a year from treatment that you are able to say cured (praying every day that that will be the news)

its time · « **Reply #136 on:** October 15, 2016, 09:33:34 am »

not going to lie .. although keeping a positive vibes...it is nerve wracking that there is that possibility of falling into that 3% that doesn't

I still have that weight hanging on me...

Lynn K · « **Reply #137 on:** October 15, 2016, 12:30:25 pm »

The old standard with interferon based treatment was 6 months post to say cured. But with these new medicines the odds of cure at 12 weeks post not detected (SVR12) is 99.8% which many doctors are now calling cured. Some doctors are more conservative and prefer to wait until 24 weeks post to say cured.

I tested at 44 weeks at my annual regular blood testing just for addituonal peace of mind especially because of my prior treatment history and having cirrhosis. Really that test was not needed I just wanted to be sure.

I totally understand your concern been there myself. I think your odds are better than 97% but anyway anything but 100% and we all are afraid we will be on the wrong side of the numbers. All we can do is wait and hope for the best but really the odds are very much in your favor

Good luck!

FutureThinker · « **Reply #138 on:** October 15, 2016, 12:41:14 pm »

Hi Its time -- The term "cured" is given when your VL is still undetected at 12 weeks after your last pill. There is a tiny chance, and I stress TINY, that one can relapse, I believe it's < 1%, up to what appears to be 24 weeks. However, I want to stress it is a very small chance!!

The thing is, there isn't anything you can do to change this --- it's whether you carry a variant or not. You have no control over it and it's either there or not. I, too, have given lots of thought to all of this and my advise is not to worry about it and get on with your new life! Lynn K has a great saying that may help:

"Don't borrow worry and disappointment from a tomorrow that may never come"

So have a great day!! FT

its time · « **Reply #139 on:** October 24, 2016, 12:24:52 am »

love that quote!!!
thank you for that....

have a couple more questions... hopefully not answering the one myself...
cooking with alcohol... ok

not oK??? it evaporates...

the other ... I know there isn't a def time but about how long till meds are out of your system???

Lynn K · « **Reply #140 on:** October 24, 2016, 12:33:35 am »

Cooking with alcohol removes the alcohol content if not all is cooked off and you can taste the alcohol this should be avoided if you have F3 fibrosis or F4 cirrhosis.

As a general rule the majority of any medication will clear the system in 5 to 6 half-lives. For Harvoni, with a half-life of approximately 48 hours, that means 10-14 days or so. At 14 days < 1% of a medication with a half-life of 48 hours will remain. Understand this is not an exact science.

At 48 hours/2 days after stopping Harvoni, 50% remains, at 4 days, the second half-life, half of 50% or 25% remains, 6 days 12.5%, 8 days 6.25%, 10 days half of 6.25% and so on. Every 48 hours half of the remaining medication is cleared/eliminated.

its time · « **Reply #141 on:** October 24, 2016, 06:00:53 am »

Lynn K
Do you think vp & riba are about the same time frame???

thank you for such a quick response...

another I think about.... my husband ... he gets tested (been together almost 10 years ) ... but what are the chances he could b infected and come out later in years and if I'm cleared (God willing that I can be blessed with that news end of December) then I could b at risk again too ...would b like a ping pong going back n forth???

Lynn K · « **Reply #142 on:** October 24, 2016, 02:03:34 pm »

Found this from the FDA

ribavirin has a multiple dose half-life of 12 days, and it may persist in non- plasma compartments for as long as 6 months.

The reason they are commenting about persisting in non plasma components is because of the high risk of birth defects to babies born to mothers who are taking ribavirin that they want women who took ribavirin to wait at least 6 months post treatment to become pregnant. But otherwise the half life in blood is 12 days.
I know for me my red blood cell count had returned to normal 10 days after I stopped taking ribavirin.

I didn't research Viekira Pak but expect it would be similar.
Hep c is not considered by the CDC to be a sexually transmitted illness. While there is a somewhat higher risk for those who have multiple partners, engage in rough sex practices or in the presence of HIV the CDC does not suggest the use of protection in long term monogamous couples. There are many here who can attest to the fact that while they have hep c their significant other does not.

I totally understand your concern but you will both be fine he hasn't gotten hep c previously he won't now

Good luck

its time · « **Reply #143 on:** November 11, 2016, 10:50:19 pm »

lynn thank you for all your information....very helpful...

went to my primary dr last week ... he did ekg and heart sounds good... does want me back in 3 months may still do a stress test etc...
still have couph but is not like it was than goodness...have lots of energy best part...
hope everyone is doing best they can....
will be back soon

its time · « **Reply #144 on:** November 27, 2016, 12:49:12 am »

well the riba cough is officially gone... thank goodness... can breath with no shortness... just over all feel a lot better... and still on count down till I go back for the 12 week bloodwork... end of December...
hope everyone is doing best can be...

its time · « **Reply #145 on:** December 12, 2016, 10:26:12 pm »

on count down .... 12 days till I go for 12 week bloodwork....nervous as anything!! but it is what its going to be.. and just praying for a good outcome...
feeling pretty good... happy to say...
hope everyone is doing best they can...

its time · « **Reply #146 on:** December 12, 2016, 10:40:09 pm »

was just thinking...all this time I never knew what stage I was / am....
looong ago had a liver biopsy done came back mild years after that had another came back inconclusive because they didn't get enough tissue but what they did say of what they did get was mild?? which that still didn't make sense not enough but could say mild.....
question then ... before I go for bloodwork should I b asking my dr for script to see what ..where I am???

Pete · « **Reply #147 on:** December 13, 2016, 02:01:24 am »

Hello again It's Time - I forgot that you would be closing in on 12 week SVR about the time I would be ending treatment.

About your question regards to your fibrosis staging. I think everyone should have a definitive score in that regard. Actually, I'm surprised you weren't required to have your liver checked for fibrosis staging prior to treatment. Perhaps speak to your Dr about something less invasion than a biopsy, like a fibroscan or fibrosure testing. No need to rush to have it done at this point. Try to relax for now, your almost to the finish line. Ask your doc to set something up a little ways down the road so you'll have a baseline to work with going forward. Everyone is praying for your SVR 12!

My best,
pete

its time · « **Reply #148 on:** December 22, 2016, 11:35:07 pm »

pete how have you been doing / feeling

you must be finished with treatment any day now???
thank you so much for the prayers.... been doing a lot of that myself.. I go Saturday morning at 7 am for bloodwork... will keep posting.... when I talk to doc about results I will ask him about the fibroscan....
thank you
one day at a time ....

Pete · « **Reply #149 on:** December 24, 2016, 12:20:52 am »

Hello there Time, I am now finished and waiting to see how things work out. I'm doing reasonably well, thanks for asking. You seem in pretty upbeat. I recall you had a rather significant drop in your hmg early on. Happy to hear all that worked itself out.

All my best and keep us posted,

Pete

its time · « **Reply #150 on:** December 29, 2016, 11:58:40 pm »

pete
when do you go for your bloodwork???

I do have a question for anyone that may know.... I just noticed tonight that the top of one foot is bruised and the top of the other foot in a section has some discolor?

anything possible??? I know I did not bang the tops of both my feet ... and the day before twice in the morning once before I even got outta bed was just turning and the room was not stable and then happen again when I finally did get out of the bed...didn't get up to fast ...that was my first thought... of course anything that goes on I'm going to think its all tied into the meds... the after affects...
I did go for my 12 week bloodwork Saturday wasn't to be sent out till tues ... now just counting the days till my phone rings with the results..... I pray lots every day..

Lynn K · « **Reply #151 on:** December 30, 2016, 12:07:04 am »

Just thinking it looks like you are a little anemic from the ribavirin.

Web md says
Symptoms common to many types of anemia include the following:

Easy fatigue and loss of energy
Unusually rapid heart beat, particularly with exercise
Shortness of breath and headache, particularly with exercise
Difficulty concentrating
Dizziness
Pale skin
Leg cramps
Insomnia

Also mentioned bruisingas a possible symptom but you should ask your doctor about this.

its time · « **Reply #152 on:** December 30, 2016, 12:45:13 am »

lynn k I def. will touch base with my dr....thank you for the information...
I'm curious thou... right before I finished treatment my hemoglobin was at 12 it actually went up slight .... and have been feeling pretty good.
but again I will def talk to my dr tomorrow...

Lynn K · « **Reply #153 on:** December 30, 2016, 12:50:01 am »

Ok didn't realize you were almost 12 weeks post.

Do you know your pre treatment HGB? I got down to below 10 (9. 8 ) and had to dose reduce from 1200 to 1000mg and then stabilized at 10.1 for the rest of my treatment. But my HGB returned to almost pre treatment levels within 10 days EOT

its time · « **Reply #154 on:** January 01, 2017, 03:58:27 pm »

hi lynn
when I started treatment my hgb was 15.4 ...when I finished it was 12 and I guess that's why I was never reduced from 1200 ... although going thru treatment I did feel the drop .. I was tired ... but September 30 was my last day of treatment and since had been feeling pretty good...

I will be talking with my primary this week and I know I will hear from my g.i by end of week with my 12 week post treatment results...
I did get some results back and did see that my ALT & AST are within normal range but I also know that doesn't mean anything... counting down the days ....

its time · « **Reply #155 on:** January 03, 2017, 10:38:17 pm »

have a question in addition to the prior post...

I see that some people get 6 month post bloodwork and some 3 months ... does it matter

if all is ok at 3 months is there possibility that at 6 months a change??

Lynn K · « **Reply #156 on:** January 03, 2017, 10:57:01 pm »

I have seen odds of cure at 12 weeks post is 99.8% I personally haven't heard of any relapse after 12 week SVR.

I asked to be tested at 6 months and again at 1 year but I was a 3 time null responder to interferon based treatment and relapsed after 12 weeks of sovaldi and olysio so really just wanted to test for my own peace of mind. At 18 months post treatment last September I only had my normal blood testing done no viral load. ALT and AST were still in normal range. Just had my blood testing today in preperation for my annual liver specialist visit. I will be 2 years post EOT in May.

To answer your question most doctors consider 12 weeks SVR enough to say cured but under the old interferon treatment days people had to wait for 24 weeks to say cured. Some doctors are just hanging onto the old interferon day standard of cured.

its time · « **Reply #157 on:** January 05, 2017, 06:28:57 pm »

result is in ..12 week post treatment..... I AM FREEEEEEEE !!!!!
when I was on hold it was a crazy feeling knowing I was going to hear my results at any second.... when the receptionist told me was negative ... I didn't get it lol I said nothing ...she then said no trace of hep c and told me to go out to eat w my hubby and daughter and celebrate n if she could come too... (she has been amazing thru all this with me.. the receptionist ) .... I just couldn't believe what I was hearing.... IT'S DONE... GONE . THE MEDS WORKED ..THANK GOD TO THE HANDS THAT CREATED THEM.. it doesn't feel real yet. for me when I have to fill out paperwork asking if any trouble with and check which apply I will have a big smile...
I will ask to b tested again at 24 weeks also mental thing...

THANK U ...everyone on this board.... couldn't of done it without you...even thou I could talk to my husband he really didn't get it...
running out to eat ...will be back

I pray for all to have the same ....

andrew j · « **Reply #158 on:** January 05, 2017, 08:33:37 pm »

Fantastic news, Its Time!
Congrats!

I can really feel how happy you are - like I was!

Best wishes,

A.

Lynn K · « **Reply #159 on:** January 06, 2017, 02:10:43 am »

All right it's time great news. Enjoy your dinner, Happy New Year and Happy New life!

Clare2222 · « **Reply #160 on:** January 07, 2017, 03:29:31 pm »

Hello all, I'm new here. I don't live in the USA but there are no forums like this where I live and I don't know anyone on treatment so hope its ok to get involved here. I've found it a great help reading your posts while on treatment myself. I've got about ten days to go on vp & riba.

andrew j · « **Reply #161 on:** January 08, 2017, 01:15:33 am »

Hi Clare ... and Welcome!

... Of course it's OK to get involved here!

Pete · « **Reply #162 on:** January 08, 2017, 01:59:27 am »

Hello there it's time.. I just read you 12 week results. Good for you! Surely a Happy New Year for you and your family.

Best,
Pete

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