HCV genotype 3A - starting Sofosbuvir/Ribavirin

[kavita]

hi all,

my name is kavita, and i'm grateful for this forum.  thanks for creating and maintaining it.

i'm a 55yo woman living with chronic HCV illness for 37 years.  here's an (too-long) overview, and a couple of questions.

i was exposed to HCV in august 1977 (multivax injection > navy), DX with Non-A Non-B Hepatitis in february 1978 (acute phase). 

several bouts with chronic symptoms since then (not realizing they were hepatitis symptoms, as Non-A Non-B was initially thought to be non-chronic).  symptoms accelerated in 1998, finally tested for HCV and DX with chronic HCV same year.

i was not a candidate for interferon.  tended my liver health with nutrition, acupuncture, homeopathy, supplements, physical/cognitive/emotional/spiritual supports of various kinds, with varying degrees of success.  aspired to co-habit harmoniously with the virus, since interferon was the only game in town until recently.   

the older i've become, the less able i've been able to stabilize symptoms.  menopause (five years ago) accelerated all HCV-related symptoms.

cognitive impairment, emotional lability, psoriasis and fatigue have been most challenging symptoms for me.   assorted other HCV symptoms have seemed almost easy in comparison. 

past three years significant spike in debility.  just went on SSDI.  having worked since i was 15yo, it's deeply humbling to be unable to function well enough to work.  never imagined my 50's would look like this, but life is curious sometimes.  sure appreciate having SSDI benefits.

early october will begin 24 weeks Sofosbuvir / Ribavirin TX.  gastro doc initially recommended Sofosbuvir / Ledipasvir but today said the latest data indicate  "Geno 3 is the new Geno 1" when it comes to the new drug regimens - Ledipasvir seems fairly ineffective with Geno 3 according to his analysis and experience.  i'm not keen on Riba given i live with complex PTSD and HCV-related emotional instability, but it's time to clear the virus - we're not good roommates anymore.

couple questions, if anyone has energy for them:

- for folks who experienced marked HCV-related cognitive decline and have completed treatment:  are you able to function better now that the virus is history?  i read a lot of reports about physical energy returning, but haven't found (maybe just haven't looked far enough) much addressing the brain coming back on-line or the emotions evening out a bit.  would love to hear any input.

- for anyone who has been through Sofosbuvir/Ribavirin combo:  do you have any suggestions, experiences, thoughts about your treatment - ?  i'd so appreciate your insights.

good wishes to all,

kavita
 

[Mike]

Hi Kavita,

I cleared the virus in February and have been virus free since then. I was officially deemed cured in July.

I noticed an immediate lifting of the Hep-C fog once I was virus free. I never realized how the infection impacted my cognition until I cleared the virus.

I'm a lot more sociable, and have what I call clarity of thought.

The fog is gone and I'm firing on all 8 cylinders.

To answer your question: Yes - I came back online and I'm a lot more sociable.

I was treated with SOL+INTF+RIBV x 12 weeks, which was very manageable - especially compared to the 48 week tx in did in 2001.

Best wishes, Mike

[kavita]

thanks, mike ~

congratulations on your treatment success!  good to hear your experience of brain fog lifting, and clarity of thought emerging.  that's inspiring and heartening.

what started as brain fog has expanded into broader global cognitive impairment and neurological deficit, for me.  primary care doc and i are both curious to see if treatment proves the cognitive and neuro issues to be entirely HCV-related, or if there are other concerns as well.

we'll see how it unfolds.

thanks again,

kavita

[lporterrn]

Hi Kavita,
I loved your post - especially your line, " it's time to clear the virus - we're not good roommates anymore."

I have gone through 3 treatments, including 48 weeks of peg + ribavirin. I am 61 and last year went through 12 weeks of sofosbuvir/lediapasvir + ribavirin. (You can read my story here: http://www.hepmag.com/articles/lucinda_porter_2846_11259.shtml)

RE:- for folks who experienced marked HCV-related cognitive decline and have completed treatment:  are you able to function better now that the virus is history?  i read a lot of reports about physical energy returning, but haven't found (maybe just haven't looked far enough) much addressing the brain coming back on-line or the emotions evening out a bit.  would love to hear any input.

Yes, I function better - it took awhile. I sleep better, my mind is sharper. But, I take really good care of myself too.

RE: - for anyone who has been through Sofosbuvir/Ribavirin combo:  do you have any suggestions, experiences, thoughts about your treatment - ?  i'd so appreciate your insights.

I am not a fan of ribavirin, but I am even less of a fan of unnecessary suffering and possibly early death if I can do something about it. In some ways, the last treatment was harder because I thought it would be easier than it was. Also, without interferon to depress me, I felt raw and agitated from ribavirin. Would I do it again? Absolutely.

Tips: - The forum, a low dose benzodiazapine (I took a few ativan in the 12 weeks), and if any rash, get a good antihistamine early in treatment. Atarax helped me sleep, calmed me down, and helped the rash. Without it, I would have needed something for sleep and more ativan. Don't take anything without clearing it with pharmacist. Here;s a good resource: http://www.hep-druginteractions.org/interactions.aspx Also, engage in activities that occupy the mind and body (I dance and walk - it wasn't fast or pretty, but I showed up). It doesn't all happen right away - usually there is slow progression. Many of us have found that the fear before you start was worse than the reality.

Hope this helps. Also, I wrote 2 books to help people with hep C treatment, but you can get a lot of info for free, and I am happy to help. Good luck!

[kavita]

thanks so much for your reply, lucinda. 

most helpful to read your bio as well ~ surely resonate with many aspects.  appreciate your candor and your suggestions. 

most heartening to hear from you (and mike) that newer treatments made it possible to clear the virus ~ congratulations on the start of yet another new life ~ remarkable.

i became notably sensitive and over-reactive to drugs of all sorts - recreational (inc. pot), pharmaceutical, all of it - in my late 20's, after having ingested enough to last a lifetime 'till that point.  just stopped taking drugs of all kinds with the exception of aspirin - not because i think drugs are bad (i don't), but because i could not physically tolerate them without notable downsides - even at reduced dosages.

bit of a stretch to leap into pharmaceuticals now, AND, i completely recognize their usefulness if i wish to (1) remain on the planet, and (2) be here with any measure of good health. 

to that end, your words:  Many of us have found that the fear before you start was worse than the reality.  are both a good reminder and a reassurance. 

<>laughing<>  i've been told more than once that i can be like a dog with a bone when i set my mind to something, so i trust this perseverance will serve me well in this endeavor - along with good self-care and other supports.

another question, if anyone has thoughts or experience:

- loss of appetite - everyone i've known with HCV who treated early on experienced loss of appetite.  i don't have a lot of weight to spare, and i'm wondering if folks who experienced that did something to stimulate their appetites - ?  or any other ways to address this (if i find it happens for me).

looking forward to reading your books, lucinda.  thanks for everyone's input.  i'm glad to be here and appreciate the support.

[Mike]

Hi kavita,

I used protein shakes while on treatment for those days when I didn't have an appetite.

Best wishes, Mike

[rainbowray]

Hi Kavita,
I am 10 weeks into the 24 Week sovaldi/ribavirin combo. The first few weeks will be
not to eventful with symptoms, at least for me it was. I was just excited and anxious to start it. You will feel fatigue and it can then get worse. For me after about the 6Th week I have good days and some not so good, but I am able to drive to work and back, about 35-40 minutes each way, but I am burnt out when I get home, and a 20 minute nap is the agenda. Because you need to eat something with the ribavirin, I get into a habit of a early snack, take my pill before 7am and then eat some more, oatmeal or something. Having something in your stomach is important, so all day snacking on good stuff is ideal, so you will probably gain a few lbs.
I have little itching, no hair loss "yet", I fight the restless nights with no drugs, which is a harder way to go, but I am staying away from sleep drugs as the combo is enough for the liver to process, in my opinion.
Lots and lots of water thru the day, and the symptoms will not get out of hand, OK.  My biggest issue is with the "crabapple" attitude I am getting, I am quick to do a retort with words during this time, and I would rather be by myself most of the time, but I am forcing my way out of this. I also keep busy with projects such as yardwork, building a playhouse for  my grandchildren...etc. I have a yearly subscription to 24 Hour Fitness that is a big assistance, cause the days I go and do some cardio and\or swimming I feel much better. I recommend exercise.
Well, got to get back to work, but for encouragement my blood tests are all at normal now, and the virus undetected at 3-4 weeks, so is working so far. I am Gen 1B, have had Hepc for 43+ years. I NEVER liked the virus as my roomate.

[kavita]

thanks mike ~ that'll be easy to make, too.  appreciate your input, kavita

[kavita]

hi rainbowray, nice to meet you.

wow - such good news the virus was undetected at 3-4 weeks!  so happy for you.  nearly halfway through treatment - congratulations on that, too.

thanks for the simple, practical suggestions and observations.  so helpful to hear what works for you, what you've experience, etc.  will take these things into consideration as i see how treatment plays out for me - and, as i prepare for it. 

question:  do you (and anyone else who'd like to chime in) take Sofosbuvir in the morning, or the evening?  how much time do you leave between Sofosbuvir and Riba?  are you taking Riba twice daily, or three times? 

i've heard a few different approaches, and i will follow my gastro doc's recommendation, but i'd also like to hear what other folks do. 

amazing you can commute, work, work out, participate in projects - all while in treatment and on precious little sleep!  you sure have an amazing reservoir of strength, rainbowray.

however much the virus has wreaked havoc in my life (and it has, in more ways than i can even recall now), HCV has also served several important functions for me in this life.  might sound completely outrageous to say, but i'd likely have been dead long ago if i'd NOT had HCV.  at any rate, i'm ready for it to be gone now, that's for sure. 

thanks again ~ take care ~

[rainbowray]

Hi Kavita,

I was told by the pharmacy it is ok to take the Sovaldi at the same time as the ribavirin or in between doses. My friend takes both in the evening together around 9pm before retiring, then the rib alone at 9am in the morning. I tried that and I could not sleep, so in my trying out I found taking the Rib early, 600mg around 6-7am and then about 30-60 minutes later the sovaldi, then 12 hours later the 600mg ribavirin.
I have a better day, and I sleep better. Still have to take a nap around 6pm.
My friend got undetected in 4 weeks also, he is about 5 months into treatment. He is having a harder time as he has a liver transplant, and has cirrhosis, but he has a good spirit about it.
I was always the type that 5 hours sleep is good, and I am getting that now, just had to acclamate to the drugs I guess.

[kavita]

thanks rainbowray, helpful to hear what works for you.  as an early riser, will likely stagger the timing of the drugs much as you describe in the morning.  sleep is elusive these days, so better that nighttime intake is minimal, i'm guessing.  and ... it's all a mystery 'till i start.

[lporterrn]

One thought to consider Kavita - if the ribavirin gets too hard, perhaps daclatasvir will be approved by then, and you can ask your doc to prescribe it off-label with Sovaldi. Works well with your genotype. However, your doc will have to be savvy and tough to go head-to-head with insurance, but it is worth a gamble. Or, if you live in a metropolitan area, perhaps a clinical trial? However, that would have to be decided while you are still untreated, because they are looking for treatment-naive patients.

[kavita]

thanks, lucinda, for the helpful consideration.

will explore the daclatasvir trials and see what's cooking there. 

my gastro doc seems well-versed in negotiating with insurance companies, from what he describes.  i will propose the idea of off-label daclatasvir w/ sofosbuvir, at least as a consideration.

at this juncture, seems prudent to explore alternatives to 24 weeks of ribavirin-as-adjunct to sofosbuvir treatment.  recognize that many people are well-served by ribavirin.  given my reactivity with substances, if there's a sofosbuvir-adjunct other than riba for geno 3 folks it's worth exploring. 

nothing ventured, nothing gained ~

[Mike]

Hi Kavita,

You have a pretty good attitude and outlook on life.

I'm sure, whatever treatment you decide on, you'll get through it with flying colors!

Thanks for your input in this form. I'm sure your positive outlook has been an inspiration for a lot folks trying to get through this!

Best wishes, Mike

[kavita]

mike, thanks so much for your note.

it arrived at just the right time, just now - for many reasons, on many levels. 

really appreciate you reaching out that way.  a few words can make a big difference!

all good wishes to you, too ~

kavita

[willie g]

HEY RAY, 10 weeks, wow, you were right when you said be glad Willie you have 12 weeks and not the weeks you Have to do. i think of that post now and then with much gratitude.    just, Willie g

[tkflex36]

Hi,
 This is my first post, I am a geno 3a, with the cc var. I've had it for about 15 years and I'm 33 now. I had a biopsy about 5 years ago that showed a stage 1. I just had bloodwork done along with the fibrosure test and the results were bad..66 or F3, and activity score of .73 or very active. Needless to say I am very worried about the state of my liver. I go for an ultrasound in 2 days and see my GI the next day. I was told they want me to start tx with S/R for 24 weeks.  My viral load is low at 51,205 but I know that means very little in the way of damage done. I am curious to know if anyone else has had this fibrosure test and how accurate they are? Also to the OP of this thread I hope your tx is going good, I have heard us geno 3's are the new 1's, but being treatment naive I'm hoping the S/R combo does the trick for me and you! Keep us posted with any results as I will be doing the same once I get started with my tx.

Rich

[kavita]

hi rich,

thanks for your kind wishes for treatment success.  i've actually opted not to take Sofosbuvir/Ribavirin, for a number of reasons.  i'm engaged in a non-traditional protocol to clear the virus.  we'll see if i can become HCV-free in this way. 

yes - you are right - it appears that Harvoni (Sofosbuvir/Ledipasvir) is much less effective when it comes to genotype 3.  however, there are a couple of other Sofosbuvir-based combination treatments moving through trials / testing that show excellent promise for genotype 3.  Sofosbuvir / GS5816 (it will be given a catchier name at some point) is one such treatment.  stay tuned, as it will likely be FDA approved and released within the next year (just my guess).

i am uneducated about fibrosure testing, as i had a biopsy.  there are many people on the forum who will reply with greater knowledge though, so know that your inquiry will receive more responses soon. 

as well, several folks who replied to my initial post on this thread are currently on Sofosbuvir/Ribavirin, so you'll be able to connect with them for updates and support as you move through treatment.  there's lots of great folks here who are happy to share with you.

i wish you the very best with your treatment, ray.  may you be HCV-free by the time summer arrives ~

kavita