Day 2 Harvoni + Ribavirin

[ricpark]

Been waiting for this day for years, 12 wks treatment on day 2, so far a little fatigue.

[Philadelphia]

All the very best!

[KimInTheForest]

Good luck ricpark! I'm right with you. Started 12-weeks Harvoni+Riba on May 5 - 1 day after you. Am feeling optimistic for both of us, and for everyone else doing this.

Kim

[ricpark]

Good luck to you Kim, so far a little fatigue, I'm drinking alot of water. 11 wks and 1 day to go.

[ricpark]

Day 10, fatigue is better ( had fatigue before from chemo therapy ), no headaches (didn't have them before, you need brains to have headaches, it what my wife tells me)
So first 2 days fatigue with heavy legs and a little brain fog. Only mild fatigue currently.

Kim how are you doing?

[KimInTheForest]

Hi Rich. Thanks for asking. I am on Day 9 and starting to get a few sides in my second week. This morning when I got up, every muscle was trembling from head to toe (a weakness/muscle fatigue thing like when you are getting flu or when you have worked out really hard on weights pushing certain muscles beyond their limit). I thought my legs would not support me as I walked to the kitchen. I took my Harvoni+Riba, and an hour later the trembling & muscle fatigue was gone and I was normal.

A few days ago I was mowing my lawn in the sun and wearing shorts. My thighs (but no other exposed skin) developed bright red dots all over them. These disappeared an hour later after I came inside. My skin was not itchy, just looked weird. Riba Rash, I assume.

I have developed a dry cough and tickle in throat. Have heard others here mention the Harvoni Cough. Only happens occasionally for me. Doesn't produce coughing fits.

On the up side, Harvoni seems to give me an energy boost that kicks in about an hour after I take it and last for maybe four hours. If I use that time wisely, I can really get a lot done! But then a have an energy slump after, need to take a nap for 30-60 min. But am fine after nap.

So really, nothing too problematic so far.

ps. Your wife is funny!

kim

[KimInTheForest]

Day 10 has been a near perfect day. All my sides so far since commencing have been minor and short-lived. No persistent or difficult sides. I puffed a bit on a flat, level walk this afternoon. Am enjoying the morning boost I get from the Harvoni.

Best to you Rich,
kim

[ricpark]

Bad lower leg, foot and toe cramps last night did not get much sleep. Extreme fatigue, no sleep plus drugs equals     

                                                                    sorry fell asleep (just joking)

PS multi vitamin, magnesium, and a banana every day plus water, water, water. I had cramps before treatment, worse during Chemo. Neuropathy in my legs (tingle like they are asleep from Chemo). But I'm going to get thru this and keep my sense of humor.

[KimInTheForest]

But I'm going to get thru this and keep my sense of humor.

That's the spirit, Rich! Hang in there. The goal of being HCV-free makes it all worth it.

kim

[KimInTheForest]

It does seem to be a bit of a roller coaster - at least for me. I couldn't sleep last night at all and had repeated foot cramps in bed. Good energy all day (surprisingly)… until a few moments ago. Big crash.

The one persistent thing that has developed for me is a dry cough. Minor so far, but there every day since Day 5. Am now finishing Day 11.

Making eggplant, mushroom, artichoke heart pasta sauce for din dins tonight.

kim

[dennyhil]

Hi Folks,

I started Harvoni on May 5th as well...  Compared to the interferon / ribaviron treatment I went thru in 06-07, this has been a walk in the park.  I too, seem to get an uplift in energy after taking it, that seems to last about 6 hours, then I crash hard.  I'm taking the doses exactly as prescribed, so the biggest side effect for me is sleep management. Of course, if I don't sleep well, this will exacerbate the disorientation / confusion side effects, which for me, is minimal IF I'm able to sleep.

I'm fortunate in that my employer provides me with the understanding and latitude to take it easy on a couple of the tougher days when I couldn't sleep.  I'm doubly fortunate that this employer also from provides me with incredible insurance. My first month supply cost me a co-pay of $15.00.

My wish is that my fellow stricken human beings could be as fortunate. This virus doesn't care whether you have money or not, it just wants to slowly kill us.  I wish we could find a way to get this drug in the hands of everybody that needs it, my brother being one of them. Here's to the miracle of modern medicine..  I can do this! 

[ricpark]

Thanks
Today seems to be back to normal after yesterdays extreme crash, got some sleep. Day 13 and counting.

rich

[KimInTheForest]

I will say that my insomnia problems (except for night before last) have disappeared since I began taking second dose of ribavirin at 5 pm instead of later, as I had initially been doing. My trial nurse who sees me each week advised me to move it up to 5 pm, said that was no problem at all, said it doesn't really matter when we take our 2nd dose of Riba in the day, Riba is so long-lived in the body that we can group our 2 daily doses more closely together if we need to.

I take my morning Harvoni+Riba at 9 am with a small amount of food (what the nurse recommended).

best of luck to all on this path!
kim

[ricpark]

So far  day 13 seems normal just a little fatigue. Last night with the crash I also had a low fever and nausea plus night sweat, first time.

rich

PS take Harvoni at 5 am fasting with Omeprazole 20 mg, wait 1 hour have coffee then bowl of raisin bran with a banana and the ribavirin.  Second dose of ribavirin at dinner around 6 pm.

[KimInTheForest]

So far  day 13 seems normal just a little fatigue. Last night with the crash I also had a low fever and nausea plus night sweat, first time.

I too have begun having night sweats. Began on Day 10 in my case. I am now on Day 14 (of Harvoni+Riba). While I've had a little of this and a little of that in terms of sides since the beginning, I can't actually say it has disrupted my life in any way. Most of the time I wouldn't even know I am on drugs or that anything is happening in my body. So far it has been an easier ride than I was expecting. (Am knocking on wood very vigorously right now so my last words don't jinx my good fortune.)

How are you doing Rich?

best,
kim

[ricpark]

Kim glad you are doing OK, so am I, other than the big crash on day 13 none of those symptoms have come back. I still have cramps in my legs, feet, toes interrupting my sleep.

best
Rich

[ricpark]

Doctor's office called my May 18 blood work showed slightly anemic. Was taking 600mg ribavirin (3 200mg caps) twice a day, told to drop 1 and take only 400mg twice a day. And to retest blood next Monday the 25th.

How much ribavirin are others taking with havoni? And any body had to drop back?

Ps started to change my diet a little.

[KimInTheForest]

Hi Rich. I am taking 5 ribavirin daily (1,000 mg). I weigh 125 lbs, and the dosage is keyed to body weight.

My hemoglobin & red blood cells have gone down a tiny bit in first week (that is all I have lab results for so far). They will probably go down further. I think doctors have no choice but to dose-reduce the ribavirin if your hemoglobin drops below a certain number.

The incredible good news is that in just the first 7 days my viral load went from 9 million at start to just 130 at end of Week 1 !! And my liver enzymes were NORMAL for the first time in the 20 years I have been monitoring them, since being diagnosed in 1995. I know others are getting results like this too. But I was still astounded to see how quickly these drugs do their thang.

Side effects are still minor - night sweats, slight shortness of breath, and a dry cough. (Nurse says cough is common with ribavirin).

I am having a problem with appetitite suppression. Am losing weight (and I don't have any weight to lose) because a lot of foods don't appeal to me. I just can't eath them. Pasta for example. And that used to be the way I would put weight back on when I needed to. Every day am searching for things I can eat.

Rich, in what ways have you changed your diet?

Best of luck!

kim

[ricpark]

Riba from 1200mg to 800mg. Use to avoid iron (read somewhere hep c love's iron) so I'm increasing green veggies, meat, eggs, fruits. Don't know if its iron or B vitamins that are low, waiting for my labs to be posted by Doctor. I take a multi vitamin and magnesium sup. Magnesium can block iron absorption, so I'm cutting back on it.
rich


From Mayo Clinic

Many types of anemia can't be prevented. However, you can help avoid iron deficiency anemia and vitamin deficiency anemias by choosing a diet that includes a variety of vitamins and nutrients, including:

    Iron. Iron-rich foods include beef and other meats, beans, lentils, iron-fortified cereals, dark green leafy vegetables, and dried fruit.
    Folate. This nutrient, and its synthetic form folic acid, can be found in citrus fruits and juices, bananas, dark green leafy vegetables, legumes, and fortified breads, cereals and pasta.
    Vitamin B-12. This vitamin is found naturally in meat and dairy products. It's also added to some cereals and soy products, such as soy milk.
    Vitamin C. Foods containing vitamin C — such as citrus fruits, melons and berries — help increase iron absorption.

[ricpark]

Found info on ribavirin anemia, diet has no effect.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_anemia.pdf

Treatment
There are two approaches for treating
hemolytic anemia: ribavirin dose reduction
and use of a growth factor hormone
(erythropoietin) to promote red blood cell
production. (It should be noted that HCV
treatment-induced hemolytic anemia cannot
be treated by eating iron rich foods or taking
iron supplements.)
In general, ribavirin dose reduction or
the use of red blood cell growth factors
are recommended when the hemoglobin
level goes below 10 g/dL or if there is a
significant drop in hemoglobin levels over
a short period of time.

[KimInTheForest]

Good work, Rich. thanks!

kim

[saydey]

I'm in the middle of week 6 on Harvoni and ribavirin.   I've had so many side effects,  and found out week 3 that several are due to severe anemia!  Breathlessness, hair loss , digestive issues, exhaustion and more from anemia caused by Ribavirin!   Reduced dose from 1000 to 600 gave some improvement.  Next stop, Procrit. So scared.
The anemia is NOT the type caused by lack of iron, it's another type...who knew? Did I mention forgetful?   (Ed: it's hemolytic anemia)  Today is a rough one, suffering from some incredible stabbing pains in many areas all over my body. Nurse says pain is not a side effect of this tx, wants me in office tomorrow to see what's up with this.
Not giving up,  ever, but it's been rough.

[saydey]

Thanks ricpark, for that great info on anemia!

[ricpark]

sayday they should have been monitoring you blood levels, I was every 2 wks now with anemia every wk.
rich

[RightHere]

Hi all,

I wanted to thank you for this thread so far; it's been very helpful esp. since I'm not finding much about the side effects of Harvoni +Ribavirin combined.

KimInTheForest, my partner may well start the same Harvoni + RBV 12 week trial in the near future. He is genotype 3a with low fibrosis and otherwise healthy. I've been trying to gauge how severe the side effects might be as he will be away from home during the treatment and working for the first 6+ weeks of the trial on a job that requires focus to operate machinery and physical stamina. So this has been helpful and somewhat reassuring. I'm prepared to leave my job so I can go support him if needed, but we'll have to just cross that bridge when and if.

We are concerned about insomnia and work. Do you guys take anything to help sleep when needed? And I would be curious to know where on the scale from irritation to rage one tends to fall when taking RBV? It also sounds like the timing of ribavirin makes a big difference - if your work day started early, would you take the first dose upon waking?

Thanks again for sharing your experiences and any thoughts you might have.

[saydey]

Anemia update, and welcome RightHere. I had the same problem finding info about Harvoni and ribavirin combined. I started 4/11 so now reaching the end of my sixth week.  I've had a lot of problems with severe anemia, which is caused by the riba. Got dosage reduced from 1000 to 600 mg (?) and as of today,  no ribavirin for at least a week depending on results.  Got my first shot of Procrit today, I think this stimulates red blood cell growth.!


RightHere,  will your partner be able to get lab work done at the work location?   My doctors base so much on those blood results,  sometimes I think they don't even need to see me, just my blood. Heehee.  There's even a poster of Dracula in the lab room

[KimInTheForest]

Hi RightHere. And welcome to this thread.

Regarding insomnia and timing of the ribavirin, I have had no insomnia problems (other than my own occasional manageable insomnia) since taking my 2nd dose of ribavirin no later than 5 pm. Most days I take it at 4:30 pm. So that solved that problem for me (since before I had been taking it later).

As you can see from reading these forums, some people have a lot more trouble with side effects than others. In my own case, now at Day 17 of Harvoni+Ribavirin, I have not found it to be interfering with my life in any way. In fact I seem to have more energy for the most part (although I napped all day yesterday and was unable to do anything). I work from home, which gives me some flexibility in this situation.

I may be hit with big fatigue in the weeks ahead because of the hemolytic anemia that seems inevitable with ribavirin.

As for the so-called "riba rage", which seems to actually cover a range of emotions - my trial nurse told me it is more likely to manifest as teariness, crying at commercials with puppies, that sort of thing. And I have experienced some of that (not over TV commercials though). It's been a positive thing. I feel I am experiencing life more deeply and enjoying beauty more - to the point of tears.

One thing I am noticing is that a lot of side effects seems to appear and then disappear after a week or two - as though the body learns how to deal with it or something. The dry cough I had developed seems to be abating. Night sweats may be also.

Your partner will be need to get the regular lab work done as per the trial schedule - and possibly at the trial centre itself. It may not be possible for him to go into another clinic elsewhere because of Gilead's approval process in which they vet every clinic administering one of their trials. I don't think I could go elsewhere for my labs (not that I would want to - I am very happy with the quality of care I am getting in this trial. They really know their stuff!).

Best of luck to you and your partner!

kim

[KimInTheForest]

Hi Saydey. Let us know if you feel any different/better after the ProCrit shot. Hope that does the trick for you.

kim

[ricpark]

Hey sayday, please post results and any sides of ProCrit. Hope it works for you.
Thanks
rich

[saydey]

Thank you Kim and Rich, will do.  Procrit, or Epogen  shot was not so bad to get. I was scared b/c the RN had said "we're going to shoot you in the stomach".  Well, it does go into the fat, more to the side. Very weird feeling, like a blob entering under my skin. Hey we could all make some scary movies with all that goes on! But, After the shot they told me it was a series and this first dose was not going to make me feel any different! Let's do it again next week.  Also they offered to teach me to do it myself...don't want to go there so they'll do it. Only side is a dry metallic taste, still there.
Sorry
Btw, my hemoglobin # was 9.2, down from 10.5 on May 1? I guess I'll post results when I get them.

Thank you all for being here. There's no one I can talk to and I appreciate your shares.  I'm not as alone as I feel.

[ricpark]

sayday thanks for the update, I might be going the same path if reducing ribavirin doesn't bring my RBC back up.
rich

[RightHere]

Thanks for the welcome and all the info in the thread and in response to my post.

saydey and Kim: Yes, my partner will be getting his lab work done at the clinic running the trial which is commutable from his work site and since it's located in a city center, I imagine the care will be good; they do want good results for the study after all, right! The appt. schedule is every week for the first 2 weeks and then every two, but would guess that could change if anemia concerns arise. Unfortunately, neither work or the trial are close to home/me so we'll be navigating this at a distance.

Appreciate the info on anemia; it does seem like the earlier side effects might be unpleasant, but tolerable and that things so can get difficult later on with the ribavirin-induced anemia. We'll be looking out for that and I'm thinking that a support visit later in the trial might be best. Any sense if it's truly inevitable?

Kim, I read my partner your response and he was really appreciative. And I'm glad to hear that riba-emotions need not be in rage form. Some welling up seems appropriate actually.

saydey, hope that procrit shot does the trick and those red blood cells are increasing rapidly.

all best.

[KimInTheForest]

Hello RightHere. My trial nurse told me that some people on Ribavirin (at least with the all-oral treatments) don't ever experience much or any tiredness or fatigue, and so I might not. My hemoglobin and red blood cells are now below normal, but I cannot say I have felt tired or fatigued - just the reverse. I think what is happening is that I have so much more energy and mental clarity than I have had for years, now that the drugs have knocked down the virus to practically nothing and my liver is functioning properly again (enzymes normal for first time in 20 years), that this is offsetting the fatigue that the riba-anemia would otherwise be causing. Just my theory. And I may be in for fatigue and tiredness down the road. I am now at Day 20, so nearly 1/4 done.

Best of luck to you and your partner! It will be worth it in the end.

kim

[RightHere]

Thanks Kim. Day 20 sounds very good to me. Hope that it continues to go well for you. We're definitely going for it if he gets accepted into the trial (knock on wood). It's hard not to get your hopes raised as treatment comes closer. Worth it for sure. cheers

[ricpark]

Day 21, waiting for blood results still from May 18. Only thing I know is anemic from phone call from nurse. E-mailed asking for full results.

Welcome RightHere and your partner, hope everything works out for you two. Didn't know trails were still going on for Harvoni since it was approved. My nurse only recommenced melatonin for sleep. Does not seem to make much difference. But I am sleeping a little better than before ( I seem to have bouts of night cramps in legs that come and go, just as I hope I'm over them they come back).

Best to everyone
rich

[KimInTheForest]

Hi Rich. Harvoni has only been approved for Genotype 1 - at least here in Canada where RightHere and I are located (I think RightHere is in Canada if her partner is going to be part of same trial as I am in). I thought that was the case in US too - Harvoni only approved for Geno 1, but I am not sure of that. In some ways, it is a great time to be Geno 3 because a lot of trials are going on for Geno 3 people right now, which means lots of treatment opportunities for drugs we Geno 3s would otherwise be waiting years for.

kim

[RightHere]

Hi Rich, Thanks for the welcome. I hope you receive more detailed information on your most recent results soon. You've probably seen this, but in case you haven't, I have read in other threads (related to SOF +RBV) that some view anemia as an indicator that the RBV is fully saturating their system and doing its job. I have seen also a reference to reaching "stable anemia" levels during treatment.

As Kim mentioned, this is a trial targeting genotype 3 and we are in Canada, although there are centers for the same trial across the US as well according to clinicaltrials.gov. (still knocking on wood).

[ricpark]

Thanks RightNow I had not seen that, thanks for the info.
rich

[KimInTheForest]

Hi Rich. How are things going for you with the anemia? Is dose-reduction being discussed by your Dr.? I must be anemic by now too, or on my way at Day 23 Harvoni/Riba. Still feeling pretty good, but did have shortness of breath and fatigue yesterday evening for a bit.

Keep on keepin' on

kim

[ricpark]

Hey Kim
Day 24 for me, end of day very tired (I don't think waking up between 2-4am helps) heavy legs, out of breath and some brain fog (mixing up words,forgetting things, driving past destinations). Nurse called me on the 19th told to reduce ribavirin from 600mg twice a day to 400mg twice a day, and to have a additional blood test this Monday (holiday in the states), but I drove to the hospital anyway to find the lab closed. Went back Tue for the test.
Have not yet recieved the results from the 18th blood test so I don't know what my RBC levels were so I could do a comparison  to May 4. I do blood and HCV test on June 1st, and see Doctor on the 8th to discuss. Last time I saw Doctor was in April, I think, really want to know virus levels, started out at 17.5 mil.

[ricpark]

Kim sorry I forgot to wish you the best and to keep on keeping on.

PS Baby sitting for the day 6 year old grand daughter

[ricpark]

Kim, RightHere, sayday, dennyhil How you all doing?

rich

[KimInTheForest]

Hi Rich. I have just finished my 1st 4 weeks of pills. Will be going in tomorrow to get my Week 4 labs done and to find out the results of my Week 2 labs. So far all is good with me. No sides of any significance. For the most part I have noticeably more energy and better mental functioning than when I started treatment.. Sometimes, I seem a little tired and cannot get much done. Not sure if that is the riba-anemia, or just what was my typical state before treatment (and which has largely disappeared during treatment).

How about you, Rich? Has the dose reduction on Riba helped with sides? Results back from the labs you did last week?

best to all of you!
kim

[ricpark]

Finished my 4th wk Sunday, gave blood today for the big test, VL load etc. Symptoms are about the same, a little more energy, sleeping a little better too, some brain fog on and off. Anemia seems to have leveled off I think. Still RBC went down just a little more, but no call from Doctor's office so it must be OK. We have 8 wks to go. Yea

I hope everyone's blood results come back good ( VL load ).
rich

[RightHere]

Hi all,
ricpark, I'm glad to hear the anemia might be stabilizing and a little more sleep sounds like a good thing too.
Kim, I hope your week 4 visit went well.
We've just heard that my partner has been accepted into the trial and Day 1 is coming up very soon. So I'll be on the slightly anxious sidelines for awhile unless side effects require me to travel to him. Here's hoping . . .

[KimInTheForest]

That's wonderful that your partner has been accepted into the Harvoni/Riba trial, RightHere! Congrats on that!

I have been quite tired and low energy last 3 days (beginning of Week 5). This is the first time since starting that I have had a consistent pattern of tiredness. So, probably riba-anemia. But there may be other factors that I can do something about. I continue to have appetite suppression on these drugs. And I have been losing weight because I just cannot eat enough food. So I honestly think some of my tiredness is due to fact that I have not been getting enough calories or fat or nutrition into me. I know - fat seems like a weird and wrong thing to eat if liver is struggling. But what I craved (so I just made it) were some nice juicy chicken drumsticks with potatoes & butter. It was all very good, and I ate a big plateful with chard & onions thrown in for good measure.   If I can do a bit more of that (follow my food cravings when I have them, because I believe the body knows what it needs), I suspect some of my tiredness will lift. I already feel better and peppier - and I just downed all this food a few minutes ago!

Had my Week 4 checkup yesterday. My Week 2 results were in:

VL <15 IU/mL, HCV RNA detected. (Down from 4,000,000 on Day 1)

My ALT & AST were both just a tad above the normal range - but still, way lower than they have been in 20 years of monitoring.

Hemoglobin and Red Blood Cells both low (109 & 3.5 respectively). And they're probably lower now.

Other than that, all is good. I can't believe how much better I feel now after eating that food. Who woulda thunk food was so important… LOL

best to all of us on this path!
kim

[Philadelphia]

I'm on Viekira Pak and riba. I've dose reduced due to anaemia. I was on 1000 whatever's of riba ( three tabs in morning, two in the evening), now I'm on one morning and night. 400 whatever's. I went UND some time between Week 4 and Week 8, despite a dose reduction at the start of week 3.

[ricpark]

Kim, no life without food, we all need some fat in our diet especially kids for brain development. I have sugar cravings. Your numbers look good, I never got anything back yet hope to on the 8th when I see Doctor. Cramps and unable to sleep is back last 2 days, seams to come in cycles.

Philadelphia, they had me on 600mg twice a day for a total of 1200mg of ribavirin. Knocked it down to 400mg twice a day when I became anemic. No calls from doctor so I think I'm stable (weekly blood test) or a level he thinks I can deal with..

[KimInTheForest]

Hi Philadelphia & Rich. With your respective dose reductions on the riba, do you feel better or different as a result?

Gonna go eat some more food. I think this eating thing (or lack thereof) was part of my problem.

best,
kim

[ricpark]

Kim, the same I think it was caught early. I am extremely fatigue today, 2 days no sleep to speak of and stress( wife had breast cancer surgery yesterday, OK and lymph nodes clean).

[KimInTheForest]

Wishing your wife a full recovery, Rich!

kim

[ricpark]

Thanks Kim, my wife is only 57 (I'm 67 she was to take care of me, Life flipped it) in 5 wks time I learned first Frontotemporal dementia(very fast) and 2 wks later Breast cancer. Shit load of bricks hit me while I'm dealing with Harvoni.

But what I told my kids and grandkids life is a struggle for all creatures on this planet, you just have to make the best of it and not let it get you down.

[Philadelphia]

Hi Kiminforext, I feel a million times better. I was nauseated, had trouble finding things I could eat (lost 5 kg in two weeks) and was deeply fatigued.  My hg dropped a lot and quickly. They ran a ribavirin level test on me and I had very high levels - I was absorbing it far too well. That's why they were happy t o reduce my dose.

Now I just get tired by the end of the day

[KimInTheForest]

But what I told my kids and grandkids life is a struggle for all creatures on this planet, you just have to make the best of it and not let it get you down.

Wow! Beautiful attitude and outlook, Rich - especially for someone dealing with such adversity. Your kids & grandkids are lucky to have you in their lives!

@Philadelphia: Glad to hear you are feeling so much better. What was involved in the ribavirin test they ran on you - just another type of blood test to determine how saturated your RBCs were with Riba?

best to both of you,
kim

[ricpark]

Just got home from Doctor's office, finally some good news in my life.
4th week blood test results,
VL undetected
AST normal 29
ALT normal 27
HB 12.2 up from 11.4 (still a little anemic but a little better)

The 50 year old dragon is dying, I wish everybody with Hep C would get cured.
Been waiting for this day for 20 years since I have known that I have it, tried to get in study for harvoni, that's how I found out I had cancer. HCV and lymphoma have a connection, so my chances are better now for cancer not to return (was higher as long as I was infected).

[KimInTheForest]

FANTASTIC to hear this news, Rich!!! I am so happy for you. You are on your way!

My Week 4 results will probably be available at end of this week. Will post.

I hope you are celebrating! non-alocoholicly, of course

kim

[RightHere]

Hi all,
Just wanted to pop in and say how nice it is to see such promising test results for both Kim and Rich.

Rich, you are certainly due some good news; I'm glad you've received some and hope that your wife heals well from surgery.

Glad things are also headed in the right direction for you too Kim. And appreciate the reminder that food is an important factor in maintaining well being during treatment.

My guy is at Day 4 with harvoni+ riba and so far he's had mild issues - the headache, need for lots of water/dehydration, and feeling somewhat unsettled and twitchy (particularly after the evening dose of just ribavirin). He definitely feels like there is something on board.

Glad to hear that you will have your week 4 results sooner than later Kim.

best to all. RH

[Trenz]

I had been approved for 24 wks of harvoni and riba.

They approved the 24 wks because I relapsed about 9 months ago after 12 wks of sovaldi, interferon, riba and being und at 6 wks into treatment.

I just found out from my doc that Caremark disapproved the last 8 wks of harvoni.  Not the doctor or insurance company, some bean counter at the prescription management company.  My docs office has been on the phone for hours yesterday and today trying to get answers.  I may have taken my last harvoni this am and not realized it.  I don't even know what to think

[KimInTheForest]

Hi All. Just reporting in. My week 4 results are in (drumroll please)… UNDETECTED

Of course, reaching SVR12 still undetected is the one that matters. But it is so great to hold these lab results in my hand and read the words on the page.

Liver enzymes both normal (ALT=9, AST=25).

My hemoglobin and red blood cells are both below normal (as is par with ribavirin):

HGB=102 (normal=115-158 g/L)
RBC=3.3 (normal=3.9-5.5 TI/L)

I have not really been having problems with tiredness or fatigue or shortness of breath. Occasionally a late afternoon slump. But I have discovered food fixes that.

My glucose level has been consistently high since starting treatment. At Week 4 it was 6.66. (Normal is 3.89-5.55 mmol/L). I have never had high (or low) glucose on any lab results in the 20 years I have been collecting my lab results, and I have no family history of diabetes on either side of family. I think something about the treatment is affecting my glucose levels, or my pancreas's ability to produce insulin, or something. I think that is why I have such rapid recovery from tiredness after eating. (Like within 5 minutes, energy normal again). And I think that is why my legs are shaky when I first get up in the morning, but then fine after about 60 minutes - after my 1st cup of tea with milk.

Cheers!
kim

[RightHere]

KimInTheForest. Yay! Yup, I know its SVR12 that everyone wants in the end, but it sure is great to hear that you've gone undetected so early in the treatment. That's some powerful news!

Interesting info on your glucose levels. We'll have to keep an eye out for that. Are they suggesting any adjustments to your ribavirin dose at this point to address your lower than normal hemoglobin/RBC?

Hope these results help buoy you up when you're trying to find something good to eat for those pm slumps. Thanks for sharing!

Trenz, I hope your doctor is a good advocate and can get the prescription company to move on this surprising decision. They certainly owe you some info on what's going on.

best, RH

[KimInTheForest]

Thanks RH

They have told me right from the beginning that dose reduction of the ribavirin is a possibility if I seem to be having difficulty with the low HGB/RBCs. But they aren't actually recommending it at this point. I think they said it isn't a worry as long as HGB doesn't fall below 100. (Mine is close to that, and may be there now 9 days after those labs were taken.) And even if it does fall below, the question of whether to dose-reduce is still partly dependent on how the patient is responding to it and tolerating it, my trial nurse says. She says some people don't have a big problem with lower levels, while others need to be dose-reduced even when their numbers are still in the normal range because they are feeling so weak and fatigued.

Trenz: Welcome! And I hope your Dr. can get you the rest of your Harvoni. We are hearing far too many stories of all kinds of bean-counters making medical decisions to curtail people's treatment duration in order to save money. Crazy. Will cost everyone more in long run. Good luck to you!

kim

[ricpark]

Congrats Kim, great undetected VL, AST and ALT really look good. My RBC dropped to 3.5, reduced riba 1200mg per day to 800 per day, stable RBC at 3.63.

Trenz keep fighting, took me 6 months for the death panels I mean Ins Co to approve any treatment for me.

[KimInTheForest]

Thanks Rich. Are they going to return you to full dose ribavirin? Or keep you at 800?

kim

[ricpark]

Stay on 800mg as far as I know
rich

[KimInTheForest]

Rich, has your blood glucose been high? Mine has been high since beginning treatment, which has never before happened on any lab results in last 20 years, afaik. Also, zero family history of diabetes.

Just came across this document, for anyone who may be interested in the elevated glucose/harvoni connection: http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/sbd_smd_2015_harvoni_173180-eng.php

Relevant info is under the summaries of the ION-2 and ION-3 Studies for Harvoni (or you can search the document for "glucose" and find the 5 occurrences).

ION-2: "The most common Grade 3 or 4 chemistry laboratory abnormalities across treatment groups were increased serum glucose (all patients had a history of diabetes, were taking diabetic medication, or had glucose intolerance at screening) and increased lipase."

ION-3: "The most common Grade 3 or 4 chemistry laboratory abnormalities across treatment groups were transient levels of increased lipase and increased serum glucose. None of the patients with lipase elevations had an AE [adverse event] of clinical pancreatitis or developed treatment-emergent clinical events of pancreatitis. The patients with Grade 3 or 4 increased serum glucose all had a history of diabetes, were taking diabetic medication, or had glucose intolerance at screening."

I have no history of diabetes. But I am also not Grade 3 or 4 in my abnormal blood glucose - just Grade 1 (at 6.66 mmol/L). So it DOES appear from this Health Canada document and my own experience that Harvoni has a tendancy to elevate blood glucose. I am assuming my own elevated glucose will resolve to normal levels at end of treatment. Just another 6.5 weeks to go!

kim

[Trenz]

Thank you all for your well wishes.  They worked!!  Got word that they approved weeks 17-24.
 This is my third attempt  to slay the dragon with meds and the sides have been the mildest this time.  Big time fatigue, but pretty minor anemia, nausea and headaches this time.  One thing that's new this time around is I have been having some pretty wild swings in blood glucose.  It's been as low as 52, high as 320. Must be the harvoni, it's the new dog in this fight.
I've been und since week 6, the same as when I did the sovaldi,inter, riba last year.   It's gotta work for good this time.  I'm in my 60's and don't think I can wait for another med or stand another round of treatment.
 Wishing the best to everyone in these rooms.  I feel pretty good about our chances of getting cured with the harvoni, even if we have to suffer a little to get there.
 Hang Tuff Y'all

[KimInTheForest]

Hi Trenz. Congrats on getting approved for final leg of treatment! I agree - it's all worth it to get cured.

re: blood glucose… you probably saw my comment right above yours in this thread with a link to a Health Canada report that mentions how Harvoni drives up blood glucose.

best,
kim

[Trenz]

Thanks Kim...I did see your post on blood glucose.  What's strange is I have had more bouts of low sugar than elevated.  It comes on quickly, I start shaking, sweat profusely and get extreme fatigue.  I'd checked my sugar and it would be 50-60. At first I was eating candy and an apple and washing it down with a fully sugar loaded coke.  A few minutes later my level was around 200.  I would pass out for an hour or so and when I woke up felt pretty "normal". My family and friends that are nurses advised peanut butter and crackers and OJ, it would gradually go up instead of spiking.  That has worked out better.  The other strange thing is the glucose has been pretty stable the last 2 weeks.  The body is a very strange piece of work.

[KimInTheForest]

Body is very strange piece of work indeed, trenz! What other foods are recommended for stabilizing blood glucose and preventing spike or plummet? I did not know about peanut butter. will try that.

i think my glucose too is going down as well as up - and in a way it never did before treatment, i.e., outside of the normal range on both ends. my legs are very shaky in morning when i get up. an hour later after first cup of tea and milk they are fine for rest of day until next morning. i suspect i have abnormally low glucose in mornings right now, which corrects just from the tiny bit of lactose in the milk in my tea…

kim

[KimInTheForest]

Was just reading up on foods that are important for stabilizing blood glucose. Good quality fats tops the list, with fats from animal sources being preferred. How interesting that for the last week or 2 I have been craving (and yamming back) chicken drumsticks, eggs, sausage. These are not foods I normally crave. I guess my body was trying to get something in it that would help slow the release of glucose.

kim

[ricpark]

Good news Trenz
Kim my glucose is 84 can only find 1 result posted by doctor. Diabetes runs in my mother's family.

rich

[KimInTheForest]

Hi Rich. What units is your blood glucose measured in?

My high reading of 6.66 is mmol/L. Normal is 3.89-5.55 mmol/L.

I am going to guess that your reading of 84 is using different units…?

kim

[ricpark]

Glucose   84 mg/dL (Better)    Range: 70-100

Captured off web doc

rich

[KimInTheForest]

You seem to be in the normal range for glucose, Rich, if I am reading that correctly. great!

kim

[ricpark]

Kim all the latest good news on my condition is lifting some of the stress off my shoulders. Like I said earlier I wish good news for everyone.

[KimInTheForest]

How are all of us Harvoni+Riba folks doing? RightHere, how is your partner doing?

I was having more trouble with anemia/low hemoglobin last week (Week 6) than I am so far this week (Week 7). I have not dose-reduced my Ribavirin from my starting level of 1000 mg/day.

The dry cough comes and goes. That has been my most persistent side effect. Everything else has sorted itself out (usually after just 7-10 days). So I wouldn't say I am having any real problems or issues. But I WILL be glad when I take my last pills and this leg of the journey is over. Even though you would think that hitting undetectable at Week 4 would have been my biggest cause for celebration, hitting my halfway point 2 days ago was actually a bigger deal. I felt VERY uplifted.

wishing the best for all of us,
kim

[RightHere]

Hello Kim et al,

My guy is almost at end of week 2 and so far, so good. He's been able to continue working at a fairly physical job with long days. Fatigue and headaches, but manageable thus far. We're looking forward to getting the week 1 results. Not so easy to find a balance of hope and expectation while still trying to keep that thicker skin against the need for a longer run at this.

Dry cough has checked in with him as well, although not a concern at this point. I'm thinking that he'll have to have a stash of snacks against that low blood sugar feeling as he mentioned feeling a bit dizzy yesterday which resolved with food.

Cheers to reaching the halfway mark! Glad to hear your spirits are up.

Best to all. RH

[ricpark]

Kim
Just dealing with cramps and fatigue. Never had a cough. We are on the downside (5.5 wks to go), the end of the tunnel is coming into view.

[RightHere]

So . . . my partner (GT 3a, F1, treatment naive) is now at end of week 3 of Harvoni +ribavirin, clinical trial and we just learned that his week 2 results came back undetected! Week 1 result was <15. Lets just say that hopes have definitely been raised.
Best to all.

[KimInTheForest]

Fantastic news, RightHere! What was his viral load at start? Mine was 4 million. At Week 2, I was <15 but still detected. At Week 4 I was undetected.

kim

[RightHere]

His viral load at baseline was fairly low; I believe it was at 1 million.

I was pleased to see your post that suggested high antioxidant foods while on riba. He's been having a blueberry smoothie every morning for months now so maybe that's helping. Wonder if I can convince him to start alternating with a tomato smoothie? 

[KAL]

this is a good thread for those on riba , ...i was concerned about my glucose at week 6 test @ 106......never had any issues with diabetes nor family history.

i have a tip for the dry cough issues ,...it is not medication related dry cough so it may be irrelevant but who knows............anyways,, a few years ago i was having a dry cough issue and mentioned it to a friend (a retired RN) , she asked "do you sleep with with a ceiling fan on" my answer was "yes, full blast"  she explained the the circulating air becomes so dry it messes your throat up..........i was skeptical but tried it and sure enough , no more cough .

[KimInTheForest]

Good tip on the ceiling fan/cough connection, Kal. In this case, the cough actually is a documented and common side effect of Ribavirin. (I got it wrong in my earlier post in this thread where I blamed it on Harvoni.)

Some days I have no cough, then it comes back and I start sucking on Ricola lozenges, which works so long as I don't talk - haha!

kim

[KAL]

ricola stop's one from talking? thats a good side effect , i'll have to get some for my mother in law hehe......
has your glucose changed better ?..........mine was high , never had this issue before.

[KimInTheForest]

Hi Kal. I haven't seen more blood work to know if my glucose has gone back to normal. But I am feeling like it has. Will have more labs taken on Tuesday and will post results here when I get them.

kim

[garyc]

Kim told me about this thread and suggested I might want to chat with you all. Sounded good to me. Just to give you an update on my journey I will just copy and paste to this thread the last post from another thread. I have to say it is great to hear that Harvoni is curing genotype 3 also. I am 1a but HCV torments everyone the same, regardless of genotype.

Just wanted to update everyone on my Harvoni journey. So I contacted my Gastroenterologist and the pharmacy that helped get me on Harvoni and Ribavirin. Although my HCV profile calls for 24 wks of treatment Oregon will not authorize it only 12 wks of Harvoni and Ribavirin and if at 10 wks I still have detected virus in lab work they allow a request for 4 wk ext which would be 16 wks of treatment. But Dr and pharmacy said they have never heard of anyone receiving an ext. But anyway I believe I am going to be cured at 12 wks and have no relapse. Thank God! I took first pill on June 17th and have had very few side effects - more about them later but the amazing thing is I l ready feel 100 % better and everyone notices it. I have 100% more energy, brain fog is lifting (still some way to go but getting better), no pains and just all around feeling great. Now side effects - first day I had about 1 hr of severe acid reflux which I didn't do anything about and it passed.  Then about 3rd day I had 24 hrs of shortness of breath and since then then only side effect is 2 unusual bumps filled with puss on my arm. I broke one open with a sterile pin and then put hydrogen peroxide on it and wash my arm with hibacleanse several times a day. For a little bump loads of puss came out when I broke it open with the pin.  Sorry for being so gross but it is the only way to describe. Other than that everything is great  and that is nothing. I pray everyone else's treatment is going well and we all get SVR and no relapse whatever length of treatment we have. I'd like to know if anyone else felt this good after a week and also I'd like to hear about your side effects and if anyone had strange puss filled bumps.  God bless everyone  garyc

genotype 1a
cirrhosis stage 4
treatment experienced
2010 Interferon and Riba. Failure
VL April 2015 10.5 million
Started Harvoni + Ribavirin for 12 weeks on June 17, 2015
Modify message

[Be Free]

I am new to the forum and new to taking Harvoni.  Thank you everyone for sharing your experiences.  After reading the forums for the first time, I was really scared to start my treatment.  People’s experiences seem to gravitate towards being very ill, with fatigue, headaches and nausea and so I imagined the worst and was afraid to start treatment.  In fact, I had the medication for over a week before I began taking it.  I am genotype 1 and have been on therapy (interferon) three times.  The last time, in 2002, I promised myself I would not try treatment again until a more body friendly medication could be found.  But skeptical if it would be found in my lifetime.  So it was surprising when Harvoni came on the market. 
The first week was rough but only because I am not used to feeling sick.  I felt fatigued and experienced a low grade headache much of the week.  And, I also should mention I have a low pain tolerance.
On day seven it hit so hard I had to lay down and rest.  Something I had been doing all week, but apparently needed more.  This has not been easy on me.  I also wanted to mention this medication might also bring on depression.  I certainly feel down, when I should be feeling happy that I’m going to finally be cured.
Drinking lots of water definitely helps.  I think if it wasn’t for that I’d be in worse shape.  I know the road ahead is going to be rough but I am going to push through and get through this so that I can BE FREE!

[KimInTheForest]

Welcome to this thread Gary!

And welcome to the forums, Be Free! Good luck with your Harvoni journey, both of you.

Be Free: Even though parts of it may be tough, if you don't have Riba added to yours (which many of us here do), then at least you don't have that added issue to worry about.

I am almost done with 8 weeks out of 12 of Harvoni+Riba, and am feeling pretty darn good! As I have posted a few times before, side effects have not been much of an issue for me - nothing that has caused me discomfort. My primary side effect has been a dry cough (although even that has disappeared in last 2 days).

I find the Harvoni gives me a lift in both energy and mood - euphoric and omnipotent at times. But these things are all so individual. I know that some people have reported problems with anxiety while on Harvoni. And of course the Ribavirin can do a variety of things to one emotionally, different for each person.

Just keep your eyes on the prize. All of us will, in all likelihood, be rid of Hepatitis C by the time we are are done with a few weeks of these pills. And that's worth it.

Wellness to all,
kim

[ricpark]

garyc
I have small bumps show up on my arms, no puss but they itch like crazy. They seem to come and go.

[Be Free]

Kim,

Thank you for your kind reply.   I really appreciate your kind words.  I didn't realize the riba was a factor for some.  That does explain to me the side effects people have. Everyone is stronger than I even thought.   No I am not on riba.  I don't know if it has to do with lower numbers or what.  My numbers have never really been very high.  And sometimes I even had to remind myself I have he c. I do not say that with any pride.  I take care of myself the best way that I can. I try to eat healthy,  I try to drink lots of water and I try to exercise, and prayers help.  I am determined to see this through and will not give up. Thank you again for your encouraging words. 

[KimInTheForest]

Here is my progress report, everyone:

On Tuesday I started Week 9 (of 12) of Harvoni+Riba. And I had my blood work collected for my Week 8 labs that same day. My hemoglobin, which had earlier dropped below normal to 10.2 (or 102) at Week 4, has now dropped further to 9.8 (980). The clinic I am doing this through says so long as I am not having problems and can keep it above 9.5 (950), we are OK. But I will have my hemoglobin checked weekly at this point.

I have been VERY tired the last couple of days. Basically napping a lot, and then feeling like I am waking from a coma when I get up. Legs shaky. But it is also extremely hot right now, so I had initially just thought it was the heat causing my enervation. It is probably a combo of hot weather and low hemoglobin.

I also had 7 days of diarrhea, which finally stopped yesterday once I figured out what I needed to do dietarily to get back to normal in that department. The BRAT diet really works for this, as others on these forums have said: Bananas, Rice, Applesauce, Toast… must be white rice and white toast, no whole grains.

So it occurs to me that my 7 days of diarrhea (which felt very positive and cleansing and cathartic and like part of the healing process for the first 3 days) may have deprived my body of a lot of nutrients needed for building red blood cells, since you do not absorb properly when you have diarrhea. I am hoping that now that I am absorbing once again, maybe my hemoglobin will go back up a bit… We shall see.

An interesting side note about my diarrhea - I think I actually induced it myself by doing some lymphatic self-massage. My lymph nodes had swollen enormously (especially one under my jaw). And the lymph nodes are involved in straining out all of the crap and garbage in this drug-fueled virus massacre we are engaged in, which then exits through the bowel - all the dead virus, drugs, exploded red blood cells, exploded liver cells, etc. And so it felt (and looked) like my lymph nodes had gotten horribly congested and clogged with all this stuff and were not draining properly. So last Wednesday, I did quite a bit of lymphatic self-massage, plus some spinal breathing Qigong (which stimulates thymus gland in chest), plus took a long hot bath with more lymphatic massage work. The next morning my lymph nodes had really reduced in size (especially one under jaw, which has been size of golf ball)… And I had massive diarrhea, which continued for 7 days until I started the BRAT diet yesterday to turn off the tap so to speak. haha Maybe more than you wanted to know, but there it is!

I also had a whole lot of decontextualized emotions coming out at the same time - as part of the purge related to the lymphatic stimulation (diarrhea and emotional release are both documented outcomes of lymphatic massage because you are releasing a lot garbage that had gotten stuck in the body). I was experiencing crazed laughter followed by sobbing followed by rage, all with no context, just there and spewing forth. It actually was really positive. By the end of 3 days of this I felt super light and alert and reborn. I have never felt such a rapid transformation before. But then the diarrhea wouldn't stop. So I finally read up on diet and seem to have it under control.

best,
kim

[KAL]

hi Kim ,  were in week 9 !!! you & ric can see the light at the end of the tunnel now , im past half way with 16 week treatment and feeling good about it.
sounds like your doing all the right stuff , i think diet is very important , iv'e been very militant about what i eat since starting tx .
iv'e been cruising along quite well ,....but i hear you on the mood thing , thru the course of the day it can shift around a lot sometimes.
i would bet the harvoni/riba is a little tougher than the sovaldi/riba that im on (geno2  ) ...the sovaldi is just 400mg sofosbuvir with out the 90mg of ledipasvir.

keep fighting Kim , the trophy is within sight !

K

[KimInTheForest]

Thank you Kal for the encouragement!

kim

[ricpark]

Kim
Have you received your 8 wk results yet? I see my Dr tomorrow for my results. 21 days left.

[Be Free]

It's end of week two on Harvoni.  At first I was taking it at night, and having trouble sleeping.  Then I remembered reading one of the blogs that said this medication can cause insomnia.  So I changed it to right when I get home from work, which is around 6:00.  This helped me sleep better at night.  That Harvoni high that I also read about must take place for me in the afternoons.  I feel so tired when I first wake up, and only start to feel clear headed half way through the morning.  I'm also a bag of emotions.  I notice I do feel better if I drink lots of water.  I think I mentioned this before.  It really does help.  Coffee has been hard to give up.  I've been weaning myself off.  It's only for 12 weeks, right?  I think I can do it.  Being on this medication makes me feel depressed.  But I am trying to stay focused and positive.  What's bumming me out besides all the symptoms from taking the medication is also I just started working out more intensely and really feeling good, then taking this medication has set me back somewhat to where I was before.  But I tell myself I'll get there again.  Prayers for everyone and keep the fight. 

[ricpark]

BeFree
I take  Harvoni first thing in the morning fasting (with Omeprazole 20mg for heartburn), wait 1 hour morning coffee (Dr said ok) 1more hour ribavirin with food, then ribavirin at dinner. I get leg cramps and take magnesium 2 or 3 times a day. Was told to balance out my water intake so I don't flush out the magnesium (what ever that means). If you don't get cramps water, water ,water. You will start to feel better very slowly (possible ups and downs on the way, everybody is different).

[KimInTheForest]

Kim
Have you received your 8 wk results yet? I see my Dr tomorrow for my results. 21 days left.

Hi Rich. All I was told by phone about my Week 8 results is that my hemoglobin now down to 980 (9.8 ). Which is pretty low. Will be getting my hemoglobin (and other hematology work) checked weekly from now on. They are not dose-reducing me yet, but we shall see. I have not yet asked for the rest of my Week 8 results. Will do that next week when I am checking up on my hemoglobin.

I actually feel pretty good despite the very low hemoglobin. But very glad I just have 22 days left!

Be Free: As far as I know, there is no problem with drinking coffee while on Harvoni. I have not heard any mention of that before. Most people keep right on drinking their morning joe as usual.

how are our other harvoni/riba people here doing? Trenz? RightHere? Saydey? GaryC? and the rest of you

best to all,
kim

[KAL]

thought i'd share this , i've been eating so healthy since i started treatment i've substituted unhealthy snacks for healthy ones (rice crackers with almond butter, yum )

http://healthyeating.sfgate.com/advantages-almond-butter-compared-peanut-butter-6541.html

Opting for almond butter over peanut butter also proves advantageous due to almond butter's higher iron content. Iron promotes healthy oxygen transport -- it helps you make hemoglobin and myoglobin, two proteins that oxygenate your tissues. Like vitamin E, iron protects your cells from oxidative damage by helping to activate antioxidant enzymes in your cells. A tablespoon of almond butter contains 0.6 milligrams of iron, compared to 0.3 milligrams in a tablespoon of peanut butter. Each tablespoon of almond butter provides 8 percent of the daily iron requirements for men, according to the Linus Pauling Institute, and 3 percent for women.
Making H

K

[ricpark]

8th wk results

Red Blood Cell Count   3.47 MIL/uL (Below low threshold)   Range: 4.31-5.84
Hemoglobin   11.4 g/dL (Below low threshold)   Range: 13.0-17.0
Hematocrit   37 % (Below low threshold)   Range: 40-50
Mean Corpuscular Volume   107 fL (Above high threshold)   Range: 80-99
Mean Corpuscular Hgb   33 pg (Better)   Range: 27-34
Mean Corpuscular Hgb Conc   31 % (Below low threshold)   Range: 32-36
Red Cell Distribution Width   15.9 % (Above high threshold
Hemoglobin down a little (12.2 to 11.4)

Alanine Aminotransferase   33 IU/L (Better)   Range: 13-69
Aspartate Aminotransferase   30 IU/L (Better)   Range: 15-46
AST and ALT a little higher but still normal

[ricpark]

Kim hows your cough?

no VL test 8th wk, Ins won't pay, next VL at 12th wk

[Be Free]

Ricpark and Kim, thank you for the information.  Kal, I discovered almond butter quite a while ago and love it.  I didn't know about the extra iron.  Good info.

Healing for all,
Marilyn

[ricpark]

I don't know about iron either, was told years ago to limit iron intake, that the virus needs it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716881/

[KimInTheForest]

re: IRON - It is my understanding that increasing dietary iron while on ribavirin is NOT a good idea. It can put you into an iron overload position in your blood, which then ends up as excess iron in your liver where it will do some damage. The reason is that this is not iron-deficient anemia we have. Increasing iron intake for anemia is only useful if it is iron-deficient anemia, not any other type of anemia.

We actually have a surplus of iron right now in our bodies/blood because we don't have enough red blood cells to lug it around as hemoglobin. Increasing our iron intake through diet or supplements right now just increases our serum iron since it literally has nowhere to go - insufficient red blood cells to convert it to hemoglobin and carry it around for oxygen transport. I have repeatedly read to not take iron supplements during ribavirin treatment for this reason. I suspect dietary iron does not give us as great a quantity of iron as supplements would, so perhaps not as dangerous. But I am not going out of my way to eat high-iron foods right now.

Rich: My cough has subsided substantially, for which I am very glad.

best to all,
kim

[KAL]

be free was responding to a post i left earlier (#97) regarding iron/ hemoglobin

K

[KimInTheForest]

be free was responding to a post i left earlier (#97) regarding iron/ hemoglobin

Yes, I know. And as far as I am aware, it is NOT a good idea to try to increase one's iron while on ribavirin, for the reasons I stated. A lot of people make the assumption that because they are anemic they must need more iron. Yet sometimes more iron is damaging. And I believe riba-anemia is one of those situations.

best,
kim

[KAL]

thanks Kim for the response  , the last thing i want to do here is spread bad information , i need to study more on this subject .

K

[KimInTheForest]

That's just the way I have come to understand it, Kal, from my own reading. (Also HCV  doctors and nurses I have spoken to have been pretty clear about not trying to increase one's iron intake while on ribavirin). If you find something different, let us know.

The reason our hemoglobin is low while we are on ribavirin isn't because we lack the building blocks to make hemoglobin, but because we lack the red blood cells to transport the hemoglobin. So the angle I would focus on is what can we do through diet, exercise, massage, epsom salt baths, sauna, etc. to support our red blood cells, protect them from oxidative stress of ribavirin, or give our body the building blocks that help build red blood cells. I think B12 is useful for that. I have been taking a B-complex vitamin that includes B12. But I usually forget to take it daily…

best,
kim

[Philadelphia]

I was told what you were told Kim.

[mcphe66]

Kal, I am a junk food junkie but will try the rice crackers with almond butter. I am taking Harvoni but no Ribavirin. Can you tell my why your doctor prescribe both? I have been taking the Harvoni for 2 weeks now and will go in for my first blood work tomorrow. So far the side affects are at a minimal. I take it between 5:00 and 6:00 in the evening and sleep well at night. I have high energy from morning until 5:00 or so. I am praying for all of you to have success with the medication. Also, say a prayer for me. God bless

[RightHere]

Hi all,

Thought I would send out an update. My partner is at 5.5 weeks of 12 weeks of Harvoni +riba (clinical trial for genotype 3). There hasn't been much to report since the week 2 results (undetected) since his side effects have been pretty mild. He's still working away from home on a physically demanding job. However, in the past few days, he's had a difficult time with draining fatigue. We thought it likely that it related to a drop in hemoglobin, but we got his week 4 test results and his hemoglobin and platelets haven't really changed since week 2 results and are still at the low end of normal at 142; he started with a level of about 160.

Mind you these results are a week and a half out of date so it may have changed. I would be curious to know if anyone has experience with sudden fatigue on treatment that cannot be directly attributed to a drop in hemoglobin? Also welcome would be any thoughts or mental techniques on pushing through about another week+ of work with fatigue and related frustrations. He's on a job site, so there's no getting away from it all for now.

I know some folks have the end of treatment within sight which is fantastic. Hope everyone is doing well.

cheers RH

[KimInTheForest]

Hi RightHere. Thanks for the update. have been wondering how your partner is doing on same trial as I am on.

Re: his sudden fatigue - look at his glucose levels. I found that in the early weeks (between 2 and 5, I think) I was definitely experiencing glucose fluctuations, revealed both by my labs and by what my body was telling me. I would become exhausted to the point of hardly being able to move, and a sudden depression would overcome me (something I never experience). Then I would eat something, and within 5 minutes that would disappear. And there were just various things happening in my body that made me think glucose imbalance, or inadequate insulin or something. labs showed my glucose being above normal for a while, but never below. But I think it was swinging both ways - above and below normal. My labs were always collected in the morning.

Also re: the fatigue - I have not experienced any fatigue from the Harvoni. Iin fact just the opposite - it gives me a big energy boost each day for about 6 hours. (My riba-anemia has cut my stamina. But it doesn't sound like your partner is there yet on the riba effects.) However, I have seen a number of people on these forums who are on Harvoni only, and are experiencing extreme almost debilitating fatigue. So maybe that is a side effect of Harvoni for some people.

Good luck! 5.5 weeks is very close to the halfway point. And things feel a whole lot better and more tolerable after you pass the halfway point.

kim

[KAL]

hi Kim , i saw your post on the lymph nodes , has it gotten better ? ,,,,,,,
i noticed last nite swollen under my right jaw like yours ,,,reading your post put me at ease , sounds like were all just getting the toxins out,,,, just curious how your doing on that .
i started week 11 yesterday along with Ric , you started today ! yay !


all the best to you and the rest !........K

[KimInTheForest]

hi kal. yes, my lymph nodes have gone way down - i think as a result of all that lymphatic self-massage i did. but i am still aware of some swelling - especially in neck and under right jaw. i do very much think it is a sign of our bodies (and specifically our lymph nodes) working hard to clear out all the crap. So I view it as a sign of healing. But anything we can do to help our lymphatic system at this time would probably help reduce lymph node swelling. Could be as simple as walking or those rebound trampolines from walmart.

really nice to be looking at my last 13 days! hope everyone else is hanging in.

wellness to all,
kim

[KimInTheForest]

Here is a link to the best online tutorial I could find for lymphatic self-massage:

http://www.massagetoday.com/mpacms/mt/article.php?id=14639

Very clear photographs, very short simple explanations of what to do for each lymph node.

This is what I followed when I started having serious lymph node swelling 3 weeks ago, and I could tell they just were not able to move all the dead crud out of my body. The following day, my week-long purge of diarrhea and emotional release began. But it was worth it!

kim

[KAL]

great information !   i will start doing this and continue this long term ,  i had no clue what lymph nodes role is ...........thanks!

[KimInTheForest]

Great, kal. Good luck with it. It is my intention to also add it long-term to my health care routines. But knowing me, I will probably only haul it out when I become aware of a problem. haha! always the way

kim

[RightHere]

Hey Kim,

Thanks for your message. I also look for your updates; it IS nice to have some company on this clinical trial ride.    We'll definitely look to see how food and glucose levels might impact how he's feeling; I know he did perk up a bit after dinner yesterday.

Halfways sounds pretty good although I have to admit that I find myself looking ahead to that next peak of post-treatment SVR. However his current fatigue reminds us both to tackle first things first.

We'll be celebrating your EOT in no time. Sounds like you're doing really well and I hope it stays that way.

all best,
RH

[KimInTheForest]

How's everyone doing? I for one am very glad I just have 7 more days left.

Note to self: Riba Rage + Facebook = Bad Combo

haha! (but it wasn't funny at the time)

kim

[ricpark]

Kim
It's 4:00 am and I just took a Harvoni pill, only 5 to go. The light is getting very bright at the end of the tunnel, my wife finished her radiation treatment for cancer last week, feels like the load is easing up on me. Still dealing with cramps in my legs no matter what I do but I'm feeling better over all.
rich

[KimInTheForest]

You must have taken your last pills today, Rich. I bet that's a nice feeling! And I hope your wife's radiation treatments went well (as well as those things can go) and that they did the trick for her.

I take my last pills tomorrow (Monday). I'lll have my EOT labs drawn on Tuesday, and I'll know the results about a week later. Then comes the long wait for 12 weeks post-tx (although I will also have labs done at 4 weeks post-tx).

I hope everyone else is doing alright. Any news from anyone? Hang in there, all!

kim

[Philadelphia]

Hard to believe it's the end of this particular journey for you guys, Kim and Ric! I'm still slogging away. 6 weeks left. It's not hard, it just "is".

[ricpark]

Kim I was waiting till morning to congratulate you, but you beat me to it. Yes last Harvoni this morning and Ribavirin this evening, it felt great getting thru it. Tomorrow I have a double header, labs for my liver doctor and ct scan for my cancer doctor (you know you can get liver cancer  or Lymphoma cancer from Hep C, that why we all must beat this dragon).
Julie is done with her radiation it went OK, no chemo, doc wanted Tamoxifen to lessen the chance of recurrence. But with her Frontotemporal Dementia and bad side effects from any drug that messes with hormones we are going to skip it. I want the time she has left to be the best I can make it.

Hang in there Philadelphia and every one else.

I will post my 12 wk labs and then my 12 wk post labs.
Rich

[KimInTheForest]

Hard to believe it's the end of this particular journey for you guys, Kim and Ric! I'm still slogging away. 6 weeks left. It's not hard, it just "is".

I know, I can hardly believe it myself. I made an 84-day wall chart (personal calendar thing) at start of treatment and have been drawing a big red X through each day as I went along. It really helped me visualize my journey and see my progress as the thing became more and more filled with red Xs.

Hang in there, Philadelphia. I think you're doing great! And I so admire the TV interview you gave and the courage that took to out yourself to your community and beyond.

best,
kim

[ricpark]

Just had my EOT labs, Will not get results till 8/26 when I see Doc.

[KAL]

CONGRAT'S RIC ! on completing the journey , ...downing those last riba's must have been a bitter sweet experience , ....all the best to you going forward , my thoughts and prayer's to you and your wife.

CONGRAT'S KIM ! i know in a couple hours you'll poping the last of those nasty but life saving riba's ,.....i bet your in a good mood !

you guys keep us posted going forward on how you feel and clearing the riba out of the system .

PHILADELPHIA , hang in there with 6 weeks to , sounds like your doing well , i still have 4 to go , .........we'll make it !!!!!!!

K

[ricpark]

Thanks Kal, very tired today can't keep my eyes open, It might be due to not much sleep last night (went to a picnic yesterday very hot and humid sweated a lot tried to keep up with water intake) either way bad leg and foot cramps. If I take a nap I'll be up all night. Other than that no systems of withdrawal from Harvoni + Ribavirin.
Rich

[RightHere]

Happy Belated EOT to Rich and Kim! It's great to see you guys move through to that next train.

Kim, love the image of your wall calendar.When you take a thing on, you really take it on. I must applaud!

Rich, I hope those leg cramps ease up. I'm trying to remember, have you tried taking magnesium for that? I hope the best for you and your wife.

My guy is just about to finish week 8 of 12 on harvoni+riba and is flying home from one coast to another after more than 3 months away. Philadelphia's comment about a slog that just "is" is about right for him as well. He's tired, real tired, not surprisingly, but getting through. Now that his job has done, he's started to have some trouble sleeping in the past few days. Ah, change.

Best to all,
RH

[KimInTheForest]

Thanks Kal & RightHere. I am feeling noticeably better, stronger, and more "like myself" post-tx, even though it is just my 2nd day post-tx. So for me, the burden of the ribavirin seems to be lifting pretty quickly.

Good luck on rest of your treatment, Kal. And good luck to your partner, RightHere.

kim

[KimInTheForest]

Kim, love the image of your wall calendar.When you take a thing on, you really take it on. I must applaud!

I am quintessential Virgo - master (or mistress) of wall charts, filing cabinet organization, efficiency diagrams, labeling, alphabetizing… I know - sounds boring to others. But Virgos cannot help themselves. haha!

kim

[ricpark]

Good news don't have to wait till 8/26/15 for 12 wk results, searched patient portal found lab results (Doctor wanted to be the one to tell me of the results, could not wait, will have to fake not knowing)

From records for 7/27/15 12 wk labs

HCV RNA Hepatitis C Pcr Quant      
   HCV PCR QT LIN   Not Detected IU/mL (Better)   Range: Not Detected

   HCV PCR QT LOG   Not Detected LOG (Better)   Range: Not Detected

   Alanine Aminotransferase   25 IU/L (Better)   Range: 13-69

   Aspartate Aminotransferase   29 IU/L (Better)   Range: 15-46

still anemic
Red Blood Cell Count   3.22 MIL/uL (Below low threshold)   Range: 4.31-5.84
   Hemoglobin   11.2 g/dL (Below low threshold)   Range: 13.0-17.0

   Hematocrit   35 % (Below low threshold)   Range: 40-50

   Mean Corpuscular Volume   107 fL (Above high threshold)   Range: 80-99

   Mean Corpuscular Hgb   35 pg (Above high threshold)   Range: 27-34

   Mean Corpuscular Hgb Conc   33 % (Better)   Range: 32-36

   Red Cell Distribution Width   15.4 % (Above high threshold) Range: 9.0-14.5

   Platelet Count   395 TH/uL (Better)   Range: 140-400

   Mean Platelet Volume   9.9 fL (Better)   Range: 9.4-12.3

[KimInTheForest]

FANTASTIC NEWS RICH!!

kim 

[ricpark]

http://www.healio.com/hepatology/cirrhosis-liver-failure/news/online/%7B242c60a7-02b1-4e29-a952-2ac8797760dc%7D/debilitating-muscle-cramps-common-among-patients-with-cirrhosis

Bad cramps the last 3 night again (no sleep), wondering if my cirrhosis is worse then f3. During the 6 months of chemo therapy the immune system is suppressed, my VL doubled (7.9 to 17.5 mil). Thinking of starting a new thread in "living with Hep c" for what has helped anyone else.

Kin post your results when you get them.

rich

[sickpuppy]

http://www.healio.com/hepatology/cirrhosis-liver-failure/news/online/%7B242c60a7-02b1-4e29-a952-2ac8797760dc%7D/debilitating-muscle-cramps-common-among-patients-with-cirrhosis

Bad cramps the last 3 night again (no sleep), wondering if my cirrhosis is worse then f3. During the 6 months of chemo therapy the immune system is suppressed, my VL doubled (7.9 to 17.5 mil). Thinking of starting a new thread in "living with Hep c" for what has helped anyone else.

Kin post your results when you get them.

rich

rich, you're not worse than F3. Trust me, I'm F4 (mildy decompensated) and have had cramps at F2, not F4. Seriously, that's the way it goes. Cramps actually go away the worse you get. Your right side gets.... stiff, feel bloated, and just... numb.

Also, with regards to your chemotherapy, it might actually have helped you with your HCV too. Here's the thing:

I've went from 0 to decompensated in a span of... maybe a few years, if even that. I was basically discovered at age 11 or 12 when I started to bleed out. The cramps were at age 9, infection was probably at age 6 when I distinctly remember picking up a syringe from the pavement which I found while playing outside, and sticking myself with it on purpose. I was a kid. I had no idea what I was doing, but I wanted to see how sharp the needle was. It was sharp enough, and what I thought it was a one second sting turned out to be... years and years of pain.

In any case, where am I going with this?

I have this theory, that the higher your VL, the less is your liver under assault. Why? Because you get cirrhosis, mainly, because of your immune system. You see, it cannot destroy the virus directly, so it destroys the hepatic cells which are compromised. In time, this progresses to scarring due to so many dead cells, and cirrhosis.

I'm testament to this. I've always had a strong (and I do mean strong) immune system, so my VL was always quite low, for years, under 100,000. However, my liver went from healthy to devastated in a very short time.

So, think about this way: if it wasn't for the chemo and immune suppression, you would probably actually, really be F4 by now, or worse.

But it's just a theory.

[dragonslayer]

Pup,

>> You see, it cannot destroy the virus directly, so it destroys the hepatic cells which are compromised. In time, this progresses to scarring due to so many dead cells, and cirrhosis.<<

Where can we read that the immune system destroys liver cells instead of virions directly?   Or is this the 'theory' part?

[KimInTheForest]

An excellent 2-minute video of a Saskatoon Hepatitis C nurse explaining the real way that the body's immune system responds to the hepatitis C virus to cause liver scarring and the problems arising from that is here, embedded in this newspaper story. I found this video explanation very helpful for my own understanding:

http://www.thestarphoenix.com/health/Warning+baby+boomers+tested/11247147/story.html

As far as i know, there is no evidence of the immune system destroying liver cells (although the replicating virus itself certainly does that in order to spread the virus further). So I think that is perhaps inaccurate conjecture on your part, sickpuppy. But happy to be proved wrong if you can offer a link to a paper saying otherwise.

best,
kim

[sickpuppy]

Pup,

>> You see, it cannot destroy the virus directly, so it destroys the hepatic cells which are compromised. In time, this progresses to scarring due to so many dead cells, and cirrhosis.<<

Where can we read that the immune system destroys liver cells instead of virions directly?   Or is this the 'theory' part?

It's not as much as the immune system destroying the cells, but more of a "normal cell behaviour".

That's how a cell behaves when compromised by any virus. You can find loads of documentaries and articles on the subject. The general way it goes is: Virus tricks the cell and gets inside > The motor proteins drag the virus towards the cell nucleus > Once close to the nucleus, it releases the RNA and gets absorbed in the nucleus > The nucleus is compromised and starts copying the virus RNA, instead of our own RNA > The cell is overwhelmed and does not stop producing these new RNA copies until it is absolutely packed.

In the same time, in another part of the cell, the virus "coating" is being mass-produced and injected with the previously produced virus RNA in the nucelus.

Once the cell is full and ready to go, its membrane is devoured and releases thousands of new virus copies in and around the other cells, and the process repeats itself. In time, this leads to cirrhosis.

Here's a study: http://www.ncbi.nlm.nih.gov/pubmed/22430873 (read first sentence of the abstract)
Here's a short animation specific to HCV: https://www.youtube.com/watch?v=mQ9Tb_ifCGo (you can see how the virus is carried to the nucleus by the motor proteins I mentioned at 1:33, but watch all of it).

And here's a study to answer your direct question: http://www.ncbi.nlm.nih.gov/pubmed/17199558

"HCV (hepatitis C virus) has a high propensity to persist and to cause chronic hepatitis C, eventually leading to cirrhosis. Since HCV itself is not cytopathic, liver damage in chronic hepatitis C is commonly attributed to immune-mediated mechanisms."

[KimInTheForest]

We are all in agreement then, sickpuppy, since you now agree that your original assertion that the immune system destroys liver cells was not correct. That is all we were responding to - that particular faulty assertion. We know how viruses replicate in cells.

best,
kim

[sickpuppy]

We are all in agreement then, sickpuppy, since you now agree that your original assertion that the immune system destroys liver cells was not correct. That is all we were responding to - that particular faulty assertion. We know how viruses replicate in cells.

best,
kim

Yes Kim, that's what I knew too but on further examination (based on the studies I posted) it would seem that would not be enough to cause cirrhosis, at least not in a lifetime - the real culprit seems to be the immune-mediated response (look at the last study, it's particularly interesting).

That's basically how I formed my theory about a weaker (but not completely compromised) immune system slows cirrhosis progression. I'm sure it's not that simple, and not actually correct, otherwise we would all be on immune-suppressants

[KimInTheForest]

Got the results of my EOT labs today:

Virus undetected (and has been since Week 4)
ALT 12
AST 30

Hemoglobin 99 (normal=115-158 g/L)
Red Blood Cells 3.1 (normal=3.9-5.5 TI/L)

Everything else within normal ranges. I'll spare you the full 30 pages of my lab results. The above is what I am tracking the most closely.

So I am still feeling the effects of the ribavirin-induced anemia, with my Hgb and RBCs being below normal.

I still get winded easily and do not have the great mental clarity and energy that I had during my early weeks of treatment when the virus had been eradicated but the anemia had not yet kicked in. Still, those early weeks of treatment gave me a glimpse of the life I can look forward to once my body rebounds from the hemolytic anemia.

I'll be tested again at 4 weeks EOT, and again at 12 weeks, then 24 weeks, and finally at 1 year.

How is everyone else here doing? Any news? Lab results? Feeling better? Worse?

Good luck to all,
kim

[KAL]

Kim , happy to hear "still undetected" ! ....all other #'s good too !........the hgb & rbc's should work their way back to normal , , are these new #'s (hgb/rbc) an improvement from your last test ?

i've noticed a little loss in clarity and stamina the last couple weeks , im at 13 1/2 weeks with 2 1/2 to go..........all in all , feeling great !....much better than before treatment ,, all the side effects from cirrhosis are gone !

speaking of cirrhosis and,or, fibrosis , portal hypertension , insulin resistance and all the damage from hep c to the liver ,  i have found some good articles/ study's on fibrosis resolution and even cirrhosis resolution post svr ......also , i have found lot's of post's from other site's from svr patients who have reported almost complete fibrosis resolution and even cirrhosis resolution 6 month's to a year after svr .
have you or anyone else read or posted anything on this ?  if so , iv'e missed it.....i don't see much talk on this subject around here , im surprised , it's like the pot of gold at the end of the rainbow.

K

[ricpark]

Congrats Kim, I knew you would be undetected and on your blood work. I'm still anemic on last test (don't test again till 12 wks post) 10 days ago. Hope your energy levels increase.
Best
rich

[KimInTheForest]

Thanks Kal & Rich.

Kal, my hemoglobin and red blood cells at EOT (Week 12) are about the same as they were at Week 8. So I guess we have to see how quickly those levels recover now that I have stopped taking ribavirin. I know Lynn K on these forums said her Hgb was back  to normal (or back in normal range) in just 10 days. I would love to be so lucky. But for others it has taken a month or even longer. Still - it's a minor and temporary price to pay for getting CURED for the rest of my life.

Yes, I too have read quite a bit about the complete resolution of fibrosis (F1-F3) that is possible post-cure. Did not know it could occur as quickly as 6 months. But that is great to hear. And I had also read that even cirrhosis can reduce/improve/reverse to some degree once virus is gone. It isn't just that new healthy liver tissue is growing, but that the connective tissue that creates fibrosis (a scar tissue) actually starts to unravel and disintegrate once virus is eliminated.

I have seen a small amount of posting about this on these forums but not a lot considering how significant that piece of information is for all of us. We really can have a fresh start and may end up with healthier livers than most non-HepC people around us, because we have gotten in the habit of eating right to protect our liver.

kim

[KimInTheForest]

How are my post-treatment pals on this thread doing? I am now 16 days post-treatment and am not gaining ground as quickly as I had hoped. Although I appear to be virus-free so far, so that is the important thing! Some minor sides that arose during treatment have worsened since ending treatment.

My low hemoglobin from 12 weeks of ribavirin is part of the issue. But my hgb is improving daily, while my health in some ways is worsening post-tx.  I am sure it will sort itself out in time. But I had assumed that each day post-tx would be better than the last, as our bodies clear the drugs and regain their new healthier virus-free balance. Not so for me right now.

The following issues, which developed as drug side effects during treatment and were just minor annoyances during treatment, have now started to increase  post-treatment: insomnia, oral lichen planus (including mouth sores), muscle cramps in calves and feet, persistent dry cough and breathing difficulties - asthmatic almost, yet I have never had asthma or allergies.

These are all carryovers from treatment. I think there is nothing to do but be patient and let my body restore its natural balance, or find a new balance. Not complaining, since this is a small price to pay for being FREE (in all likelihood) of Hep C after 45 years! But also not the steady upward ascent I had expected post-tx. How are the rest of you post-tx?

kim

[ricpark]

Kim, yes insomnia on and off (3:30 am writing this), lower leg cramps and some breathing and coughing. The cramps bother me the most.

http://hepatitiscnewdrugs.blogspot.com/2013/11/articles-in-press-muscle-cramps-in.html

Interesting article, I have just started to try Taurine and Branched-chain amino acids (listed as no side affects). Printed the article and will talk to Doctor when I see him on the 26 of this month.
Best
rich

[KimInTheForest]

Thanks for that link, Rich. That sounds interesting, Taurine and branch-chain amino acids. Be curious to know what your doctor says.

kim

[KAL]

hi Kim and Rich ,   sounds like clearing out the powerful med's take's awhile , maybe part is due to the body hard at work "resetting" it self back to normal range..............you've got all my wishing/hoping/ praying things get better soon .
......Rich , my thought's to your wife too .

i've got a little over a week to go of the 16 , im feeling a little bit saturated with the riba. but hanging in pretty well. .....this past week iv'e been getting these crazy riba attitudes , when someone crosses me wrong ,  within an instant im in full attack mode like a pit bull , then i settle down and laugh like i just won a nascar race ,,,,,strange,,,,, i think i better lock myself in the house for the next week lol !

good luck to all ! let the healing continue !..............K

[KimInTheForest]

Thanks Kal! I hear ya on the attack-mode stuff. Same happening here. Probably lost or alienated some friends in recent weeks. I deactivated my facebook account a month ago because I was just going berserk.

Also wanted to say that a while back you mentioned ceiling fan in bedroom as possible cause of cough. I didn't pay too much attention at the time, but I now think that is a factor. Had my worst coughing spree of all time yesterday (about 2 hours of coughing) after sleeping (or rather lying awake in bed all night) with my window fan going to cool the room down. I notice on other HepC forums, people are saying humidifiers in the bedroom really help them with the riba cough thing.

Great that you are so close to the end, Kal! Good luck to all of us.

kim

[KimInTheForest]

For anyone interested in the reason for the riba-cough, ribavirin temporarily "enhances cough reflex sensitivity", according to this 2010 study on INF/Riba treatment (but it is the riba that is responsible for the cough, so it will affect us as well):

http://www.ncbi.nlm.nih.gov/pubmed/21545621

Cough resolves within 2-6 weeks after completion of therapy.

Also, I took a Benadryl last night (25mg) and got a proper night's sleep for practically first time since EOT 18 days ago. It also suppressed my cough, which I had read that it might do. But it did take me 2-3 hours to fall asleep even though I was dead tired when I hit the sack around 9 pm. Also, my nasal passages got completely blocked for a few hours after the Benadryl. (It felt like what happened was my immune system rebelled against the antihistamine with a needless production of histamine, swelling the tissue in my nasal passages.) But I fell asleep around midnight and slept quite well all through the night. Don't feel groggy this morning.

kim

[KimInTheForest]

My theory about the post-tx problems that some of us experience - problems greater than what we experienced during tx - is that some of those post-tx problems are a result of a temporarily overactive immune system producing various temporary autoimmune issues.

-Oral lichen planus is an autoimmune thing, and it got worse for me post-tx (although it's better today).
-Rheumatoid arthritis, which many people are experiencing post-tx but often not during or prior to tx, is autoimmune thing. (No RA for me, thank goodness, but there are  threads on these forums devoted to the problem of post-tx RA.)
-Asthmatic shortness of breath when there is no allergen present and patient has no history of asthma or allergies suggests overactive immune system, when viewed as part of the larger pattern.

Makes sense when I think about it. For 45 years my immune system has had a full-time job chasing the Hep C virus. Overnight it's unemployed. All dressed up with nowhere to go. Where's it gonna turn? Nothing else left to attack and defend against except the patient's own tissue post-tx. I think it just takes a little time for the immune system to settle down and locate its new balance (its new thermostat setting, one might say) now that less is required of it. Also, I expect I will improve considerably once my hemoglobin and red blood cells are back in normal range.

So far, today has been a better day for me.

kim

[ricpark]

20 days post treatment

slight asthmatic feeling in chest and coughing when stopping Riba, but now almost gone.

main problem "CRAMPS", day 5 in my experiment, 5 nights in a row very little (morning when waking up) or NONE.
Mag-Tab SR 12 hr release magnesium 1 tablet morning and night
Taurine 500mg morning and night total 1000mg (bottle says on empty stomach with water)
Supplement Facts

Serving Size 1 Veggie Capsule
     Amount Per Serving    
AjiPure® PharmaceuticalGrade Taurine    500 mg    

Branched-chain amino acids 3 caps at dinner (dose is 3 before meal)
Supplement Facts

Serving Size 3 Veggie Capsules

Servings Per Container 30
     Amount Per Serving    
Vitamin B-6 USP(as pyridoxine HCl)    7.5 mg    
AjiPure® Pharmaceutical GradeL-Leucine    1,026 mg
AjiPure® Pharmaceutical GradeL-Isoleucine    513 mg
AjiPure® Pharmaceutical GradeL-Valine    513 mg

Study recommended
http://hepatitiscnewdrugs.blogspot.com/2013/11/articles-in-press-muscle-cramps-in.html
Taurine 3g (I'm taking 1G)
Branched-chain amino acids 4g 3 times daily ( I'm taking alot less)

Hoping with the latest studies showing a regression in fibrosis and cirrhosis over years when SVR12 is reached the cramps will go away.
http://www.annalsofhepatology.com/revista/numeros/2014/HP144-03-Long%20%28changes%29%20%28F_060614V%29_PROTEGIDO.pdf

[KimInTheForest]

Thanks for the update, Rich. Gives me hope to hear that your cough and asthmatic breathing are almost gone. And thanks for the details on your experiment to deal with muscle cramps. Great that is working too.

kim

[maneman]

Hello Everyone,

I have been avidly reading this particular thread with great interest and the reason why is that I have just started my 12 week course of Harvoni + Ribavirin.

Allow me to introduce myself - I am in England and have HCV type 1a, F4 cirrhosis early compensated, fibroscan mean 24, ultrasound shows no real nasties but obviously liver is not good. The usual blood elevations but I don't have all the the latest figures to hand. Never been treated prior to now though have alleviated problems in the past with sylimarin and dandelion root, cannot recommend highly enough. Stopped taking them now due to lack of interaction data on doctors advice.

Fortunately I am one of the early NHS approved patients as we generally have no health insurance here. Been waiting for over a year to avoid the dreaded interferon regimen.

Well it's day 4 for me Harvoni at 8am then 200mg Ribavirin and 400mg at 9pm with blood tests every week. They are looking to increasing my Ribavirin depending on blood results.
So far so good, definitely feel as though something is happening, quite a strange feeling really not unpleasant at all. More energy for sure and my sore red palmed, hard cracked skin hands that tended to itching at times and tingling are improving quickly.
Currently I am still working full-time and my doctor has approved this as there is no reason at this stage that I should not do so.
I was concerned at being prescribed Ribavirin because of the adverse effects, however, there is evidence to show that with cirrhosis it could aid and help in a permanent cure. I did post a thread initially questioning this and many thanks to sickpuppy for his help and input.

So I feel fortunate to be on treatment at last, optimistic in view of others results and hopeful for those who are still waiting to be treated. I know that at my hospital they are only starting 2-3 new patients per week and they told me that I am the second patient they have started since the green light for patients that are not suffering decompensated cirrhosis as only those were being treated and then after failing with Interferon.

If you wish I will continue to post my progress through this journey in my life and share with you all my experiences. As one contributor said gnatcatcher I think, we are all beta testers to borrow a phrase from the IT world, for this wonderful new Harvoni and the DAA treatments that have become available to help us fight the dreaded HCV.

Good luck to all of you and congratulations to those who have been successful in achieving freedom from HCV.
 

[KimInTheForest]

Hi Maneman! Congrats on starting the harvoni journey, and welcome to the forums and to this thread! By all means continue to post your progress here.

I too found treatment quite easy for the most part. (last 3 weeks of treatment were really wearing me down with riba anemia and emotional moods.) But big downturn occurred for me immediately post-tx. I got much worse. But I think that is finally lifting today. I am now 3 weeks post-treatment.

I too felt big increase in energy beginning in the first week of treatment. The new DAAs work very quickly so I think that is our new virus-free bodies we are experiencing when we feel that energy increase. Then the riba-anemia slowly takes that away in latter half of treatment - at least it did for me. But I was on 1,000 mg/day (weighing 120 lbs). So quite a bit more riba in my case. I have heard that 600 mg/day is not enough to induce anemia. But cirrhosis may change that equation - I don't know.

Good luck, and keep us posted!

kim

[RightHere]

Hello all,

Ric, I'm glad you have found something to try for the leg cramps. Kim, thanks for the post about facebook; it helps remind me to be patient during this chemically induced ride. Interesting thoughts about taxed immune systems post-tx.

A report from mid-week 11 of 12 of Harvoni+riba for my partner (GT3 clinical trial). Its been relatively smooth going until about week 10 when sleep issues seemed to take a big hold. Deep sleep seems elusive and he keeps finding himself wide awake very early in the morning. We're going to look into something to help him sleep this week.

And hello to emotional fluctuations - not sure if we call it sleep deprivation or riba-rage, but its real and exhausting too. He says that its one thing to try and be rational, but he's not sure what is rational. Needless to say, entry into a new chaotic, crazy-on-its-own-merits job at the same is proving challenging. Where's the riba-vacation?

Since we are all looking at the impact of riba on hemoglobin, I thought I would mention that his seems to be holding steady. It dropped from a baseline of 163 to 142 by week 2, but has remained just about 140 for both week 4 and week 8 tests. So at least numerically he seems to be steering clear of anemia.

Looking forward to the end of the beast.

Best to all,
RH

[KimInTheForest]

Thanks for the update on your partner, RH. I was wondering how he was doing. Great that his hgb has remained so high.

Good luck with the final week and a half, and of course with the results beyond!

kim

[maneman]

Thanks Kim for your kind post.

Well it's now day 8 and first blood test has been done (waiting for results).

I do feel better for sure and Harvoni it feels like its doing something as I have more energy, liver feels uncomfortable (a good sign I think as something is happening) and head is clearer.
The second dosing of Ribavirin in the evening is double the amount of the morning dose and I've increasingly noticed difficulty in going to sleep plus increase in random itching all over but this itching is not the same as the HCV itching, when you scratch it escalates the severity of the itching in that same area. The Ribavirin induced itching is more like normal itching, scratch and it goes but this doesn't stop an itch elsewhere.
Hence, I'm a little wary of the dosage of Ribavirin being increased and at this stage I'm unsure as to any other side effects associated with treatment or specifically Ribavirin.
To cope with the sleeping issue, I have started taking the evening dose much earlier around 6-7pm.

I had a difficult very stressful event earlier this week caused by a family member that I found more difficult to cope with and became very upset. The person concerned should have known better but I'm worried that this may or could affect my treatment and chances of success because I know stress is very bad for illness and especially liver problems.

Anyhow I plough on regardless in the hope for a successful overall outcome as I enter into week 2 of my treatment. Work has not been a problem so far in relation to this treatment that is good news as I feel more than able to perform my tasks with no issues. One still needs to earn to pay the bills.

Hope others are well and wishing all of you success.

[KimInTheForest]

YAY! My labs just came back and I am still UNDETECTED 4 weeks post-treatment! 

I had been worried because I developed a mystery malaise shortly after finishing treatment. It had me in bed with fever and fatigue for at least 2 weeks, and I have been weak and pretty much dysfunctional the rest of the time. (Had no such problems during treatment.) But at least it is not Hep C. That’s the important thing!   

The other good news is that, whatever my mystery malaise was, it is finally lifting and is substantially gone now. I have an appointment with my GP today, but there is not much for her to do or check at this point. I am 5 weeks post-tx as of today.

I think my main problem was that I got very depleted during treatment. I did not have much problem with side effects in terms of any physical discomfort – no headaches, no nausea, no aches or pains. And I was going around leading my normal life while on treatment. But I could hardly eat, I lost 10 pounds, I never once got a proper night’s sleep, and my hemoglobin was below 100 g/L from Week 4 until very recently. Last week it crawled back up to 104, but that is still below normal.

In retrospect, I would urge anyone else having severe problems eating while on treatment to go out and find a high quality protein shake, or try medical marijuana for appetite recovery, or anything else that works to get some nutrients in you.

So glad to still be on the road to being cured! Keep the faith, everyone. You can do it!

kim 

[RightHere]

Yay Kim! - I've been looking for this fantastic news! So glad to see it. Good to know you have that very lovely bit of hope and reassurance in place now. I'm also glad to hear that you are feeling better from some of the post treatment symptoms.

My guy has finished treatment (Harvoni +riba, 12 wks for gt3 clinical trial) FYI for others, we found that sleep meds did help in the last couple weeks of treatment; it seems like at least some upheaval was due to sleep deprivation. I think there was more sleep disruption than he was even aware of and it was taking quite a toll. Plus his hemoglobin at EOT had dropped to a low level (130) if not anemic.

Now 4 days post-EOT and he's feeling pretty crappy in a way that is new in the last couple of days - very weak and nauseated. No way to tell what's going on of course but there does seem to be a bit of a theme with post-tx blech. So we'll just keep rolling on.

Hope all are doing well and taking good care.
RH

[KimInTheForest]

Glad to hear your partner is done with treatment, RH. But yes, it is a let-down when you end up feeling worse post-tx than during treatment. I was not prepared for that psychologically. I didn't have hemoglobin as high as 130 even when I started. haha! It fell to about 95 and was in that zone pretty constantly for last 3 weeks.

I would have probably benefitted from sleep meds. I am just so freakishly anti-pill that I couldn't bring myself to ask.

I hope your partner starts to improve soon, RH. And I hope he doesn't fall into a mysterious illness pit like I did for 4 weeks (although that is virtually gone now). It's tough, but we all have to stay focused on what this is really all about - getting rid of Hep C.

Rich, have you received results from your 4-week post-tx labs yet? Or did you get labs done at that time?

best to all on this journey,

kim

[slats1056]

 KiminTheClear is more like it!!! You go girl. Happy , Happy , Happy for You !!!!

[KimInTheForest]

Thanks Tommy!

kim

[maneman]

Hello again,

Haven't posted recently as nothing to add really but now things are different.

Just completed week 3 and side-effects not really an issue as far as I can ascertain, itching has virtually stopped completely despite taking 1000mg Ribavirin a day now and just feeling so much better. Energy levels are best they've been in years, thinking more clearly, skin is better, urine is more normal in colour now, any grazes or cuts to skin heal much quicker and my libido has improved significantly.
The best comes last as my viral load at start was 3,279,765 now from week 2 results it's down to 33!! Amazing!! I'm so pleased and so are the medics at the hospital. They are very pleased with my progress to date and are very optimistic for my future.
So far treatment hasn't affected my working life and I am more than encouraged to complete the course of treatment (not that I wouldn't). Now hoping things continue to progress favourably to the ultimate outcome that we all desire - freedom from the virus and a return to a more normal disease free life with every possibility of my liver improving and reversing some or much of the damage it's suffered.

Here's wishing you all the very best on your respective journey's in defeating HCV.

Maneman 

[KimInTheForest]

Great news, Maneman! It's phenomenal to see those numbers drop so quickly. Harvoni really doesn't waste any time routing the virus.

best,
kim

[KimInTheForest]

i've got a little over a week to go of the 16 , im feeling a little bit saturated with the riba. but hanging in pretty well. .....this past week iv'e been getting these crazy riba attitudes , when someone crosses me wrong ,  within an instant im in full attack mode like a pit bull , then i settle down and laugh like i just won a nascar race ,,,,,strange,,,,, i think i better lock myself in the house for the next week lol !

Hi Kal. How are you doing post-treatment? I think you finished 10 days ago? Did you have much problem with anemia during treatment? I did, and it looks like I will need B12 and iron supplements and/or shots to get my hemoglobin and RBCs back into the normal range, judging by my blood tests that showed me to be low in both B12 and iron. At least I am finally feeling better. All problems and post-tx issues gone now except for low energy from low hemoglobin.

Good luck to you and to everyone else on this journey.

kim

[RightHere]

Hi all,

Thought it right to post positive developments so folks get a balanced view. My partner is now just about 2 weeks post treatment (Harvoni +riba, 12 wks for gt3 clinical trial). I had posted that he didn't feel well shortly after the end of treatment; the sudden blech included nausea, some vertigo and bed spins, feeling drained and generally not well and quite sleep deprived. The folks at the clinical trial treatment centre said that they considered these symptoms to be the result of withdrawal which was a helpful way to think about it or at least better than worrying about some kind of damage. In any case, at two weeks post EOT he is noticeably improved from that sudden dip. Nausea and dizziness is gone and while sleep isn't perfect, it's better. So hoping for even better days ahead.

cheers,
RH

[KimInTheForest]

That's great to hear, RH! It gives me hope. I had a similar post-tx "dip" in health but more prolonged. And although I had finally climbed out of it last week, I seem to be back in it this week. Maybe from B12 injection, which sent me to bed immediately. Or maybe a recurrence of the mystery infection/fever/malaise that left me bedridden for 2-3 weeks last month when I came off tx.

Very interesting that his treatment team describes it as "withdrawal". I had wondered something similar. These are powerful drugs, and they are affecting our bodies in more ways than just the one we are so focused on - the elimination of HCV.

I hope he keeps on improving!

kim

[KimInTheForest]

How are all my treatment buddies on this thread doing? Rich, Kal, Right Here, Maneman… ?

I had difficulties post-treatment but seem to now be pulling out of it. No longer sick, feverish and bedridden as I was for first 6 weeks(!!) post-tx. But still pretty low energy.  Will find out my latest hemoglobin, RBCs and iron levels next week. Turned out I was low in iron, B12 and Vit D, so am now taking daily oral supplements for all 3, plus B-complex and C for good measure.

best to all of you!
kim

[spirit]

 First Post, Thank you all for being such a Gift  I really felt alone out there. I am 70 yrs old. have has hep C 45 years and until a call from VA Infect-us deases Dr saying I needed Treatment the hep C was last thing on my mind.

I am being treated by the VA  Today end of first Two weeks  Harvoni and Riba 1200 mgs.

I gave blood yesterday and will see my Dr tomorrow . first visit after Tx started. I haver very little info as of yet. No Numbers little info, except the dr saying my Ultra sound was Normal but my Blood work showed Advanced liver Disease . The reason for the added Ribavirin.

Hopefully I will have the needed Info to be able to Post as you all do, with the Needed info. Until then   Thank you all, for sharing your TX Good and not so Good info. Been a Great Help
I will post when I have the needed Numbers so I can Share my TX also.

[KimInTheForest]

First Post, Thank you all for being such a Gift  I really felt alone out there. I am 70 yrs old. have has hep C 45 years and until a call from VA Infect-us deases Dr saying I needed Treatment the hep C was last thing on my mind.

I am being treated by the VA  Today end of first Two weeks  Harvoni and Riba 1200 mgs.

I gave blood yesterday and will see my Dr tomorrow . first visit after Tx started. I haver very little info as of yet. No Numbers little info, except the dr saying my Ultra sound was Normal but my Blood work showed Advanced liver Disease . The reason for the added Ribavirin.

Hopefully I will have the needed Info to be able to Post as you all do, with the Needed info. Until then   Thank you all, for sharing your TX Good and not so Good info. Been a Great Help
I will post when I have the needed Numbers so I can Share my TX also.

Welcome, Spirit. And thank you for sharing your story. We look forward to hearing your details and lab results as you get them. If you have any problems or questions about side effects or whatever, you've come to the right place. We've all been there. So ask away.

best,
kim

[ricpark]

Welcome sprint,
 I went thru the same treatment at 67 years old and had the virus for 50 years. I say had because so far I'm undetected and will have my final blood test on the 19th. 1200mgs is what I started out with, but had it reduced to 800mg because of anemia. You need to watch your blood levels.
rich

[spirit]

Thank you both for your Posts

I just was almost finished with a post and it disappeared  I think I was writing to much?
oK short version

Geno-1-a
VL pre treatment 1.44 no info of the two week load
AST 32
ALT-33   Dr said both were significantly Lower
Cirrhosis Likely  F3-F-4
Glucose  level 103

I have become more Anemic as many of you, she lowered the Riba from 1200
to 1000  and if con't to be a problem 800 and then No more Ribavirin, no matter how much I am Willing to deal w/ side effects   it is not about that  ""it's the Anemea

I was worried if I can't tolerate the Riba  maybe the 8 weeks left with Harvoni alone
would not be long enough?

As she spoke I fought back Tears  She the Dr said " if you cannot tolerate the Riba

I already got Approval for 6 Months of Harvoni alone    WE are here to Give you all
the best treatments available no matter what the cost" You will leave here CURED"
NOT the VA from 1966   I have to get back to work  I will write latter about other tx.
Issues
I am so Grateful for this Chance  I buried my Two best Friends  past 10 years from
intolerance to interferon Tx.  I have the chance they never had.

Talk soon THANK YOU ALL
Russell

[KimInTheForest]

Spirit, are you getting copies of your lab results so that you can see for yourself what your hemoglobin and red blood cells have fallen to with the hemolytic anemia caused by the ribavirin? If so, maybe you could post those numbers for us.

I mention this because different doctors have very different standards about when to reduce a patient's ribavirin. Some will reduce ribavirin as soon as a patient's hemoglobin falls below 10.0 g/dL (100 g/L). Others will let them fall much lower. My hep doctor told me I wouldn't have been at risk unless I fell to 7.0 g/dL (70 g/L). I only fell to 9.5 (95), so I was never dose-reduced on my ribavirin.

Part of the difference in protocols among doctors is due to the fact that with old interferon-based treatments, patients needed to be monitored much more closely for anemia and dose-reduced on ribavirin more aggressively because not only was the ribavirin blowing up red blood cells, but the interferon was suppressing the bone marrow from manufacturing new ones. So a patient could really get into trouble.

With the new direct-actiing antivirals that we are all on, this is not the case. The bone marrow (in theory) is still working just fine and manufacturing new red blood cells at the normal rate. So one is only contending with the effect of the ribavirin on the red blood cells.

I think the more "up to date" doctors know this and are not so quick to dose-reduce on the new drugs. But other doctors are still abiding by "old school" rules about when to dose reduce.

Also there can be other factors. If you have any heart issues (arrhythmia, palpitations, congestive heart failure, etc.), then doctors will be more cautious about not letting your hemoglobin drop too low.

best,
kim

[spirit]

Kim Thank You

I don't have any Treatment results, other then what I posted. I tried to mention this Forum to the DR, she was Not Aware of it.
I will contact the VA and ask for all Records that have to do with My Hep C Results
before TX. and all afterwords.
I am not feeling to well, it seems as the few days First week that had a feeling of Wellbeing and Energy has  stopped. It was nice, I forgot what  it felt like  to FEEL GOOD. 

I am committed to except and deal with any side effects that have to be tolerated

The Issue will be the Anemia and ability to Stay with the Ribavirin. I try to keep
the Gift of this treatment in perspective, it's only been 18 days.

Nothing has helped More then the reading that is available on this forum  All your experiences  during Tx.
 Also the  thought that I will be able to be treated Longer on just the Harvoni if I can't con't
with the Ribavirin.

I learned yesterday  That being out when it is HOT  did make things Worse.
Thank you all have a Nice weekend.
Russell

[KimInTheForest]

Hi Russell. I think a lot of people here on treatment have commented that hot weather was intolerable and increased problems - particularly skin problems if ribavirin is involved.

Also, the general thinking is that the worst of the riba-anemia occurs in the first 4 weeks and then the body adjusts, learns to cope, maybe starts building more red bloods cells - I don't know really. But the idea is that your falling hemoglobin will stabilize after 4 weeks. This was NOT the case with me. My hemoglobin kept falling right to the end of treatment. But for many people, it is just the first 4 weeks that are the main problem.

It is important to make arrangements to get a copy of your lab results every time your blood is drawn. Some people get photocopies from their doctor's office. Other people get their results emailed to them. Others download them online from a portal where you get a user ID and password. It isn't enough to let a doctor tell you you are anemic. You need to see the numbers for yourself to know what's up and how serious it is.

Good luck!

kim

[spirit]

Kim
There is a way Called "My Vet" a way to get all Test Results emailed as soon as available.
I will activate this VA Option "Join My Vet" and have all the Needed Results so I can
post them Here, and not have to depend on the Drs as it is they are very short staffed
and I can do My Part during my Tx.
Just in the past year  Relating to Back Issues  I have 75 Pages and three Cds of MRI, nerve conduction tests etc, from  Neurology and Neurosurgeons  I just had to ask.

Thank you for Pointing out the importance of having every record in My hands.
 BTW the Neurologist was Open to the Possibility of the Hep C being part of the Pain
and effects on my back and was looking forward  to Following this Tx. How nice.
Thanks again
Russell

[RightHere]

Hello all and welcome Spirit,

My partner is now just over 6 weeks post treatment (harvoni +riba, 12 weeks gt3 clinical trial, F1).

Kim, it's been too long since my last update, but I wanted to let you know that your clinical trial shadow is doing well. SVR 4 no problem - yes! Such relief.

As for the post details - Somewhere 2ish weeks post-EOT, the glaring withdrawal (flu-like nausea and dizzyness) stopped, but flagging energy and insomnia has stuck around somewhat longer. The 4 week post-EOT labs tell us that his hemoglobin is back in normal range and we're told that the labs did not show any other levels of concerns. Now in the 7th week post-EOT, we've noticed that he's sleeping better in the past few days and we're hoping he will soon have more reliable energy.That would be nice. It's been a bit strange feeling like he has mono, but nothing specific to tie it to. Ah well. We'll get there.

Hope by any and all of your measures that you are all feeling better each day.
best, RH

[KimInTheForest]

Great to hear the news, RH. Thanks for letting us know how your partner is doing. And congrats on his SVR4. He is virtually guaranteed to make SVR12. I'll get my SVR12 labs done next week, and I guess Rich will too.

My own health is much better. I think my profound iron deficiency was behind my very slow recovery from the riba-anemia. So I have been pounding back a daily regimen of supplements since Sept 1: iron, B-12, B-complex, D, C. And I am feeling much better energy-wise. I will know after Oct. 20 where my hemoglobin and RBC's are at. And on Nov. 1, I'll have my iron level checked. (Am checking my serum ferritin monthly while taking the iron supplement to make sure I don't get too high, but there seems little likelihood of that.)

My post-treatment malaise also felt like mono. I even had my doctor check me for mono, but I tested negative. I literally was bedridden for weeks post-treatment with fever, sweats, severe fatigue and a quasi-delerium - like flu but it never developed into flu. However, that has all passed. I am eating normally, walking daily, in good spirits, feeling healthy, and actually getting some work done at last!

I still have the insomnia. I think anemia itself can be a cause of insomnia. Maybe that's why your partner is sleeping better - his hemoglobin is back in normal range. Mine probably is not. But getting there!

Best to all of you,
kim

[ricpark]

Great news Kim, glad you are feeling better and yes watch your iron intake.
rich

[KimInTheForest]

Got my results - I reached SVR12! No virus remaining in this bod after 40+ years of co-existing with the dang thing!!! 

Health-wise I'm pretty much back to normal. Have recovered from my post-tx mystery malaise. On Nov 2, I'll know my latest hemoglobin and red blood cell levels. But I feel like the riba-anemia is gone or almost gone. Am still taking iron daily though. I was quite low. Will have that checked as well Nov 1.

How are the rest of you doing?

I'm gonna go celebrate!

kim

[ricpark]

congrats, go celebrate.
rich

[spirit]

Congratulation Kim  It was your Turn.You give back so much.

I Received some bad  news Yesterday .I saw Hematology  They did a Bone marrow
Biopsy  Apparently  I have Cancer in my Bone marrow.

It was a nasty test  and the little I know  It does not look Good. I saw the other Vets
sitting down Hooked up to the Chemo Lines and Knew I would not go through the Chemo, Radiation and Stem cell replacement, and the side effects that even if Cured
it really takes a couple of Years to recover from and It's not what I would Want.

It makes it easier  having no Family  I just buried my best Friend on the 23rd he lost a Hand in Vietnam and fought 3-4 kinds of Cancer past 14 years family was the reason he went through it all.

I will know what stage and all the info soon, as well as how the Tx has been doing
although I can,t understand why Con't???

What I don't understand is Why my Hep C Dr in wanting to cont with the Harvoni
I an scheduled to see her in a week I will be out of harvoni that day..

She came down to see me as I waited for the procedure   It was the hep C dr that
was Terrey eyed saying I'm so sorry.... and then said i'm not an oncologist so
I am limited and I will see you next week.

They were able to get enough of a Sample of my marrow   And apparently the back pain I have felt  and delt with  was due to more then just four Disks  Herniated It also seems
to be a Effect of marrow Cancer??
I know so little  but I do know  no matter what stage it is  I will never chose the treatments available.

Life is Precious as we all Know, but Quality of Life is also meaningful  I just turned 70
w/o Drama  I really have been on borrowed time since 1964 
Bladder cancer 8-9 yrs ago  One surgery and BCG and TCM keep me Free and gave me all these years and I keep my Bladder.

I just need to know WHY She still wants to treat me Harvoni  $$$$$
Why waist all that $ when that Bottle or Bottles of harvoni  Could save another Life??

I am sure she will have her reasons? I will make my decision after I talk with her.

I am still trying to Digest is all It appears the Biopsy will tell much more.

I still feel Joy reading how most of you are all Doing well, putting up /w side effect for this GIFT of Harvoni and the other New Drugs that will Cure you.
I just wanted to write to Bill and Beto and all of you
I told Bill I would let it be know  How things went yesterday  AS hep C was not on my mind  when I was Offered the harvoni  Bone cancer was not on my mind Yesterday .

I will try to stay positive  and the THOUGHT of  I have the Chance to Go out on my Terms when and how  To me that is the Greatest Gift

MY Father Died in 1977 at the Brooklyn VA Hospital  he was only 57  The VA seems
to be part of my Family heritage   He was at peace and I will hope to be as he was when it's my Time.
Thank you all for such caring ways  it has and I'm sure will con,t to be a Place where
I can Share parts of my Journey
Russell

[spirit]

Sorry I posted this in the wrong Post?? my head iS a bit Off  at the moment
This should have been posted under

Gratitude and Frustration Riba and Harvoni...  I am not the Sharpest pencil in the box
when it comes to Computer Ability.

[KimInTheForest]

Hi Russell. So sorry to hear about your test results showing you have cancer of the bone marrow.

I understand where you're coming from in not wanting to be hooked up to tubes and go through chemo or radiation. Even so, I do think it makes sense to complete your Hep C treatment, and I can understand why your doctor wants to do that. You never know what new treatments and breakthroughs medical science may come up with for anything, including possibly bone marrow cancer. Until you have met with the oncologist and gone over all treatment options, do you really know what you are facing there? Even if you don't want chemo or radiation, maybe there is a clinical trial going that uses a totally different approach. Or maybe you could research online and find alternative treatments for the bone marrow cancer - involving TCM or other health perspectives.

I'm just saying: fix the thing you can fix (the Hep C) so you will be in a position to take advantage of any good option you may discover for the bone marrow cancer.

do keep us posted!
kim

[spirit]

Kim Thank you

I do hear what you are saying  And your Right about Who knows ? what may be
on the horizon  I thought about that for a Min, looking at the Harvoni Compared to Interferon etc  I do also believe  even if I don't live to see it  A Cure is coming For
many if not all Cancers.

How many of you are or have been treated by being one of the Test groups Many I think.

I will go to my TCM Dr  H Hann . I know he can Help .

It was just so unexpected  I thought it was about Getting a Fibro Scan or something
to do with my Anemia 

Same thing happened /w the Bladder Cancer  Found by mistake in Pre Surgery Blood work for my Back.

The only thing I can think about Concerning my Thoughts  When I was younger
and would hear Someone was looking for me  The Fear would be so great I just had
to go find the person and get it over with it was easer that way.
I guess old ways die slowly
I know I will have a chance to sit w/ drs and hear what they have to say I usually
don't go to Worst case Scenarios   For some reason I did this time.  I would think i's
about Fear.

There must be a Sound reason for Continuing Tx maybe Curing the Hep C will give
me a better Quality of Life 
I will know soon enough
Thank you all
Russell

[ricpark]

 
Just got results 24 week post SRV24 Undetected
Best to everyone
rich

[KimInTheForest]

Just got results 24 week post SRV24 Undetected
Best to everyone
rich

WAY TO GO, RICH !!!

I'm right behind you. Should be getting the results of my SVR24 viral load test any moment.

kim

[KimInTheForest]

Just got my SVR24 results today!! And my book about my Hep C journey also came out today!! I feel like the Universe is carrying me along in its magnificent current right now.

I wrote my book during my 12 weeks of treatment, and posted about that here: http://forums.hepmag.com/index.php?topic=3853.msg37829#msg37829

Good health to all!
kim

[ricpark]

Congrats
rich

will read your book