Author Topic: started vp &riba 8 a.m this morning (Read 72678 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.

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