Hep C Discussion Forum

mallani · Guru

Hello

Huey · Guru

Hi MzM. I noted in your Post that you are working, I too have had to work wile on treatment,. Let me tell you, Even though i was Not on Peg-Inf. The Rivavirin alone was "narley", {a metaphor used by American Suffers, Meaning big wave}.

I had signed up for FMLA at my workplace and I thought at the time this was just a precaution, This is not just a precaution, it is vary necessary and I strongly suggest you do the same.

If you read the post I have posted on this you will see that I have had to back DHL "My employer" against the wall with the threat of a lawsuit just to keep my job,. You can not get this protection form the Government unless you jump through all these hoops.

We are all in this together Keep your stick on the Ice. 'Red Green Show'

MzmiffY · Veteran Member

Hi there good people,

I am so pleasantly surprised to feel the open minds and arms of strangers.

I had prepared myself for judgement in the way of an absence of replies, im heartened by the effort and honesty of all of you.

Im feeling tired today! Maybe it's more apparent because it's my only day off work.

My fortnightly GI appt is next week. I cant help but feel I have to choose my words carefully with her. I can only hope she will be reasonable and not defensive.

My GP feels I only have mild anaemia, as written by him. I have only seen him for a year and get the feeling he is pretty useless.

I see another GP tomorrow after work. I have a longer history with this one but he is more preoccupied with wanting to know if I'm pregnant or if there is anyone "special" in my life.

anyhow, will ask about procrit and transfusion.

would love to continue writing, must go for now.

Again thanks so much to all of you, you are really quite amazing!

xx

RonH · Veteran Member

MzmiffY wrote:
Hello everyone, hoping today is a good day for you.
This is my first attempt to reach out and be part of a support community.
I have had hep c 1a for 9 years. I am almost 5 months into treatment (boceprevir).
I began treatment following the news my liver is cirrhotic.
I am really encouraged to have found this site and look forward to learning and sharing more with you.
xx
Hi Susan,
I just saw this thread and I want to wish you the best for your recovery. I can only speak for myself as my lifestyle got me where I am at also. I was diagnosed with Hep C in 2006 and I am now on treatment. My drinking, drug use and very risky lifestyle was the reason I am where I am. This is a great place for support and to vent! I will pray for you to recover and have a easy time with not to many side effects. Keep positive thoughts and remember that this too shall pass! Welcome to our own slice of paradise here!

Isiscat2011 · Guru

Hi Susan:

Malcolm's suggestion to talk to your GP if you have one is excellent. You sound tired and that is probably from the anemia. When I was anemic and having other blood problems during tx I felt so utterly exhausted that I would have preferred to stay in bed, rather than see a doctor, even when it was clear that I needed some medical help. I also lacked confidence that my "specialist" understood the tx drugs I was on which left me feeling confused.

Fortunately, I had a family member to look after me, who could insist that I get medical help and also drive me. I'm wondering if you have someone who can help you with this. Your situation is somewhat complicated and I just don't feel good about the medical care you are getting. Are they seeing you often enough under the circumstances? It seems like some medical decisions need to be made.

Reaching out to another doctor may be necessary here. I don't know how the medical system works in Australia but perhaps even an ER doc could get you a transfusion and take a look at things. I also hope you are eating enough as you are very thin.

mallani · Guru

Hi Susan,

As you've heard, we don't care about the past or how you acquired HepC. We just need to help you to get to SVR, so you have a chance to deal with life free of this disease.

This must be very difficult for you, as 'brain fog' is common for HepC with/without the drugs, and you have the added problem of severe, ongoing anaemia.

From your posts, I suspect you're being treated as an Outpatient at a Liver Clinic of one of Sydney's hospitals. Your doctor could be a Registrar, Clinical Assistant or junior Staff Specialist. She obviously has little knowledge of Victrelis, and that makes it tricky. The options in the Public system as limited. If you were being treated privately, I would suggest getting a second opinion. That is probably not an option for you.

You MUST do something about your Hb. At a level of 72, you shouldn't be taking Ribavirin long-term. The answer is a transfusion. INSIST on it. You can stop Riba for 5 days, then slowly build it up again. Whatever your treatment length turns out to be, you may need further 'topping up'. Do you have a GP or other medical person you can talk to? They can't interfere with your treatment, but may be able to help you get a transfusion. Also ask whether you can have Procrit or EPO.

Despite your past, your liver is probably in better shape than you think. It a very resilient organ! I urge you to get another Fibroscan. If your doctor won't help, ask for a private referral. They cost $300-$400, but it may help with your Rx time. Even your GP could request one.

It goes without saying that I think you need another doctor. You are entitled to be best medical care Australia can offer, and you're not getting it. Look after yourself.

wmlj1960 · Moderator

MzmiffY wrote:

I am reluctant/scared to admit that I have a long history of drug abuse, self sabotage and an all out general sense of self loathing. All of which has led me to where and who I am in this world today.
Replacement therapy has allowed me to function in a way I felt I never could. suboxone is my normal that keeps me functional and removed from self destruction.
So while I would love to see significant improvement, I am also accepting and prepared for a lesser desired scenario.

Hi Susan,

When I first posted on this forum (1-18-14), I too was reluctant to admit that I have a long history of alcohol/drugs/detox/extended in-patient treatments/psychiatrist etc etc. but I have since found that many many other members on here have the same history, and they can identify with my situation/experience.

I've attended tons of AA/NA meetings on-and-off since 5-1980. And in those years I've received tons of help and healthy suggestions from other members, although I rarely applied those suggestions to my life.

I was diagnosed with HCV and HIV in 94, and have searched for a supportive environment similar to AA/NA for both HCV/HIV every since, with very little success. But I hit the jackpot when I found this place. I can openly discuss any issue concerning HCV, HIV, drug addiction, alcoholism, mental health, other none-HCV related health issues. Or I can rant and rave about what's pissing me off in my life. Either way I'll have several members respond with their experiences on the issue along with what solution worked for them, and they will do it in a helpful / compassionate / non-judgemental way.

I consider a good bit of all my past time/$ spent with psychiatrist to be a waist. But in some cases I did have an excellent source of help. One very wise Dr. suggested to me that some of the most valuable help I would ever receive would come from my fellow alcoholic / addict / mental patient / HCV sufferer / HIV survivor etc etc. who is trying to accomplish the same basic things that I am.

So I invite you to be a part of our family without needing to be "scared" or "reluctant" to admit anything. We've "been there - done that" too, so we are all equal around here. It's a "WE" thing. smile

Dzdayscomin · Senior Member

MzmiffY wrote:
Hi again kind people...
Huey, I was clinging to the fact that there isn't much beyond this bag of bones! Still, I can't afford any further reduction..
malcolm, some encouraging feedback and things to think about. My memory is so very poor and I need to check on my next visit, but I have a feeling I had a fibro scan maybe 6 years ago that showed mild fibrosis, unfortunately I can't be anymore specific than that right now.
Point is it wouldn't be surprising if significant damage was caused through lifestyle.
I am reluctant/scared to admit that I have a long history of drug abuse, self sabotage and an all out general sense of self loathing. All of which has led me to where and who I am in this world today.
Replacement therapy has allowed me to function in a way I felt I never could. suboxone is my normal that keeps me functional and removed from self destruction.
So while I would love to see significant improvement, I am also accepting and prepared for a lesser desired scenario.
Isiscat, you have given me some clarity and I like the way you have broken down the therapeutic relationship. I was feeling deflated and disempowered from my last visit.
when I started tx, I was relatively active in keeping up to date with labs etc, used my peg assist diary to write down questions but this has lessened with time. She is always running late and I never want to take up too much time, in saying that, I do communicate anything that is truly bothering me.
also, thanks so much for your kind words isiscat...I adore your picture. I am completely mad about cats.
Cinnamon girl(and Malcolm)thanks so much for this, I had a nice long read earlier.
During my last visit, the nurse was looking at my file and even she discreetly began to query the duration of my tx, the GI was quick to follow with...no we are treating her as cirrhotic.
I am humbled by the effort, people like yourself have made to lift and encourage little ol me.
i appreciate your support and encouragement cinnamon.
you are all very kind people...
It's time for my shot, actually I'm a little late. thankfully so far have felt very minimal effects, just a little more tired the following day.
take care everyone xx

Ya know what? I want you to let your past be the past, that's why they call it that.

I dont care one spec about what you did before, and all those here will say the same thing, it doesn't matter at all how you got it, I'm sure if someone said here take this it'll make you feel good now but you will have HEP C later.....you would have thought different.

I got mine thru a blood transfusion that some other person caused in an accident but does the world really care how ? I don't think so, so with that said I would just worry about you and look for as much support from trusted friends or family that you can get.

And as always there are really super good friends on this board that are there for you so just open up and ask to settle your worries, knowledge is power and there are some really smart people trolling these waters

I hope the best for you.

Scruffy · Guru

Hiya Mzmiffy

I was on triple tx with incivek though. I went anemic to the point where you are. I had 3 transfusions and weekly shots of procrit not to reduce my dose of riba. My Doc wanted me to reduce my dose also but I told him lets wait to see what happens. This is probably what he wanted to hear so he knew I was dealing with it. He never brought the dose reduction up again, he left it up to me. I was undetectable at 4 weeks with the incivek. That should have made my tx 24 weeks, instead my Doc and I decided even with all the problems for me to do the whole 48 weeks. I was glad I did it to. The thing is when the Doc's see a history of substance abuse they figure more liver damage than the next person. Maybe that was taken in consideration when they decided to treat you as a cirrhotic.

After you get rid of the hep c I would strongly suggest dealing with your "replacement " therapy. That drug is for you to take a break and wake up so you can learn how to function. Not to use it to function. I made that mistake and was on methadone for 10yr's. 20 years ago I woke up quit the med ama and never looked back. You will be glad to get your life back.

MzmiffY · Veteran Member

Hi again kind people...

Huey, I was clinging to the fact that there isn't much beyond this bag of bones! Still, I can't afford any further reduction..

malcolm, some encouraging feedback and things to think about. My memory is so very poor and I need to check on my next visit, but I have a feeling I had a fibro scan maybe 6 years ago that showed mild fibrosis, unfortunately I can't be anymore specific than that right now.

Point is it wouldn't be surprising if significant damage was caused through lifestyle.

I am reluctant/scared to admit that I have a long history of drug abuse, self sabotage and an all out general sense of self loathing. All of which has led me to where and who I am in this world today.

Replacement therapy has allowed me to function in a way I felt I never could. suboxone is my normal that keeps me functional and removed from self destruction.

So while I would love to see significant improvement, I am also accepting and prepared for a lesser desired scenario.

Isiscat, you have given me some clarity and I like the way you have broken down the therapeutic relationship. I was feeling deflated and disempowered from my last visit.

when I started tx, I was relatively active in keeping up to date with labs etc, used my peg assist diary to write down questions but this has lessened with time. She is always running late and I never want to take up too much time, in saying that, I do communicate anything that is truly bothering me.

also, thanks so much for your kind words isiscat...I adore your picture. I am completely mad about cats.

Cinnamon girl(and Malcolm)thanks so much for this, I had a nice long read earlier.

During my last visit, the nurse was looking at my file and even she discreetly began to query the duration of my tx, the GI was quick to follow with...no we are treating her as cirrhotic.

I am humbled by the effort, people like yourself have made to lift and encourage little ol me.

i appreciate your support and encouragement cinnamon.

you are all very kind people...

It's time for my shot, actually I'm a little late. thankfully so far have felt very minimal effects, just a little more tired the following day.

take care everyone xx

Cinnamon Girl · Guru

Hello Susan, I`ve been reading your updates and Malcolm`s suggestion of asking for a repeat fibroscan at this point does make good sense if it could possibly lead to a shorter treatment duration. That would be so much better for you with your level of anaemia. You have every right to discuss and challenge the way your tx is going, this is your health at stake so read and consider the advice given here and be assertive with your doctor when necessary.

Yes, Malcolm I do remember K2, now you`ve mentioned her...you`ve got a long memory I must say! This is her thread, Susan, if you`d like to refer back to it. You`ll need to scroll through it from the beginning to follow her story...

http://hepcfriends.activeboard.com/t46393118/who-is-geno-1a-on-victrelis-tdt/

I understand how you feel about finding it difficult to talk about your treatment with other people, we all know what that feels like, but please know that you can speak openly with us here, Susan. We`re all here to help and want to see you getting the best possible care and outcome for your tx. Wishing you all the best of luck!

mallani · Guru

Hi again Susan,

Just another point for you to consider. We had a Forum Member from Victoria back in 2012. She was mid-forties, Geno 1a, and had a pre-treatment Fibroscan score of 12.8. She was put on the Victrelis triple and like you, had an RVR. She was supposed to do 48 weeks, but requested another Fibroscan at ~week 19. This reading was 4.9. She also was anaemic and had reduced Riba. Based on this, and the fact that she was Undetected at weeks 8, 12 and 24, her Hepatologist agreed to reduce treatment to 28 weeks. She went on to SVR. I wish I could remember her Username. Perhaps Jill (Cinnamon Girl) can help if she reads this.

Fibroscan is not an exact science. It's reliable for obvious cirrhotics and those with little fibrosis. The score can be increased by fatty liver, if you haven't fasted or if you are having an acute inflammatory flare. Based on your age and short history of HCV, I would ask for a repeat Fibroscan. Considering the anaemia you are experiencing, it is reasonable to see whether RGT is possible. Just my thoughts.

P.S. I've remembered her Username was K2. Just do a Search, and look for her post in 'Who else is Geno 1a and on Victrelis (TDT)'.

-- Edited by mallani on Friday 29th of August 2014 09:08:49 AM

Isiscat2011 · Guru

Hi Susan:

I have been following your story and I want you to get the best medical care you can. Your doctor made a fairly serious dosage error that has the potential to impact the outcome of your tx. Hopefully it will not. You are only about half way through your tx and more medical decisions will need to be made. The question is what can you do to ensure that you are getting the best possible care from this point on? Unless you can find another doctor with hepc tx experience to take over the only thing you can do is make the best of the situation.

It sounds like your doctor is not a particularly good communicator with her patients. That means your communication skills will have to be extra good. Really try to think of your relationship with her as an equal partnership and treat it that way. She has the medical expertise and you have the final say. Partners treat each other respectfully.

Decide before you go in for an appointment exactly what you want to accomplish. For example, you may want to know your options for treating your anemia. Write that down on a piece of paper (options for treating anemia) along with any other questions or concerns you have. When you meet with her make sure your questions are answered before you leave. If she typically rushes then tell the receptionist that you will need X amount of time for this office visit (30 minutes or however long you think it will take). If you feel that you will need support for your position then bring data with you (not a treatise but a page or two).

Research has repeatedly shown that patients who are involved with their own medical care and who ask more questions get better results. Here is a good resource with videos that might prove helpful:

http://www.ahrq.gov/patients-consumers/patient-involvement/ask-your-doctor/videos/index.html

Research has also shown that about half of patients are afraid to question their doctors so you are certainly not alone.

You won't need to spend much time researching the medical aspects of your concerns because Malcolm can point you in the right directions there. Do spend some time reading about how to best communicate with your doctor, though, because that could make the difference.

I am pulling for you and hope to see an SVR with your name on it. :)

mallani · Guru

Hi Susan,

Thanks for the update. This is not a Medical Forum and anything I say is just my opinion, and is not medical advice. It's just for consideration and you may want to ask your doctor some questions. Obviously, she doesn't like questions.

I should have realised you were past 12 weeks. Anyway, forget the 12 week VL suggestion. It is more important for treatment-experienced patients.

It's a real shame you don't have a more exact liver staging. You may have been eligible for RGT, and may only have needed 28 (or 36) weeks of treatment. However, you been labelled cirrhotic, and now must do 48 weeks. With my group of Hepatologists, you would have had a liver biopsy with your Fibroscan reading.

With the Victrelis triple, the degree of anaemia has been shown to be important. The SVR rate is higher in patients who drop their Hb below 100. Managing the anaemia is complex. Ribavirin dose reductions, blood transfusions and drugs like Procrit (EPO) have all been used. I am concerned that your Hb is too low- you should really be above 80. It's a fine line maintaining enough Ribavirin dose to acceptable levels. Rather than dropping the Riba dose further, I'd ask for some Procrit and/or a transfusion. Because it's now been extensively used, there is a vast amount of literature to read about the Victrelis triple. Here's a link to the Australian Guidelines. Have a look at table 3 on Page 8, and Page 23 dealing with anaemia. Cheers.

https://gp2u.com.au/static/pdf/V/VICTRELIS_-PI.pdf

Huey · Guru

Hi, it is my understanding that Ribavirin is weight based and females often get a reduction in dose because of size.

We are all in this together Keep your stick on the ice. Red Green Show.

MzmiffY · Veteran Member

Thanks so much for your reply Mallani, hello other friendlies....

So an update on where I stand with treatment. I was reduced from 1000mg RIBA down to 600mg around wk 16. I currently weigh a pathetic 48kg. If my HB drops, she wants to reduce another 200mg. As mentioned, it has pretty much sat low 70's the last few months.

Im not sure why transfusion is no longer part of the dialogue. She hasn't ever presented the idea of medication to treat this.

She has indicated that if I wasn't feeling ok (HB level) she would have reduced me further. Even though my HB remains about the same, I have felt much better since reducing and work isn't such a struggle.

VL was tested at wk 4 and wk 8. She told me wasn't necessary at wk 12. Her decision to suspend or continue was based on standard fortnightly bloods.

my next VL is on 24/9 but according to my peg assist diary that's closer to wk 26 Not wk 24 as she has written?

It certainly feels odd throwing out the old schedule and starting anew,being so close to the halfway mark.

Again, I really appreciate the support,knowledge and insight you have thrown my way.

Im not used to letting ppl in and there is anxiety about unleashing, even on here.

it IS making a positive difference to my experience on TX, so Thankyou Thankyou.

.....like your new pic!

xx

mallani · Guru

Hi Susan,

Sorry you have to deal with that sort of stuff. At least you are now on the correct dosing schedule- she obviously realised her error. Don't worry, Victrelis is the 'slow but steady' antiprotease, compared with Incivek. May I ask what Ribavirin dose you are currently on? You have every right to question YOUR treatment, and Riba is a very important ingredient. Weight-based dosage gives much better results, so for patients >75 kg it is 1,200mg/day. For <75 kg, 1,000 mg/day. You should not drop below 50% of your dosage, and the aim is to be on at least 80% of the dose for at least 80% of the treatment time. So, if you need a brief reduction, try to get it back up as soon as possible. Drugs like Procrit can be used instead, or a transfusion may be necessary. I'm impressed that you're coping with a Hb of 72. Over 80 was OK for me.

With your 8 week Undetected you should do well. Make sure you get a 12 week VL. All the best- sorry about the weather in Sydney. Cheers.

MzmiffY · Veteran Member

Hi Mallani and friends...

Today I had an appt with my GI. I feel a little disappointed. I told her that I had joined an online support and relayed new concerns that i seem to be the only person dosing twice a day.She got really defensive and seemed annoyed with me. Nothing she offered put me at ease. She pretty much threw it straight back on me, saying i had indicated it would be tricky to dose at work and she would prefer me to stick to a schedule that is manageable.

I never stated it would be impossible or made much noise about it at all. Her reaction to my concerns, along with the nurse, felt odd and disproportionate to what was actually coming out of my mouth. she encouraged me to stop with the support group as "they will only try to make you feel bad.you have us , you don't need that". I was stunned. They encouraged me to get support in the beginning of tx.

She now wants me to start dosing every 8 hours, simply because she is concerned how much "stress" this has created for me. Stress? she made out I had become hysterical... I was calm and pleasant...and again, open to her substantiating her initial recommendation.

I feel frustrated with myself that I don't know how to be more assertive. Whenever I question her it feels like she receives this as undermining her.

I found myself trying to smooth things over by telling her how grateful I was. I felt the need to reassure her and keep reassuring her.

My HB hasnt moved much (72) but I feel noticeably better since reducing on RIBA. My alt is 17 and alb 32, in my state of surprise that's all I managed to write down. she was happy with my bloods.However, if my HB drops at all she will further reduce the RIBA. Is that really my only option? I feel like I dont get any say over this and now I'm scared to question or challenge anything.

sorry for the protracted rant! Despite all of this I am still feeling really positive.

Thanks so much for taking the time to read, hope today is a great one for you

xx

mallani · Guru

Hi Susan,

No need to be embarrassed. This is a complex treatment, and new to many Australian doctors, particularly if you're being treated at a Public Hospital. They have only been available on the PBS for just over a year.

With a Hb of only 70, you probably have felt pretty dreadful. For most of my 48 weeks, I was between 80 and 85, and only dropped to 70 in the last few weeks. My doctor did not believe in Riba dose reductions, so I was on 1,200 mg/day for 48 weeks. If I had complained louder, I would have received transfusions. We have many Forum members that have achieved SVR, despite a Riba dose reduction. The aim is to get the dose up to the highest level you can manage.

By now, Boceprevir would have blocked all the 'wild-type' virus, and resistant mutations (RAV's) are the concern. The Peg. and Riba keep these under control (hopefully). Relapses are usually due to these RAV's.

Being Undetected at week 8 is the best news for a Victrelis triple patient. The SVR odds rise dramatically ( I was Undet. at weeks 8 and 12, and my SVR odds went from 50-60% to 70-80%). You have every reason to stay positive. Cheers.

MzmiffY · Veteran Member

Hey Mallani, I really appreciate and welcome your input. naturally I just feel a little thrown, even a little embarrassed...

I mentioned my HB has been around 70 for the last few months. She talked about possibility of transfusion at one meeting and indicated that would most likely be the next course of action. That never happened, instead I was instructed to stop RIBA for 4 days or there abouts. I actually kept taking just 200mg. I later told her, anyhow I'll skip to the end.... I'm now on 600mg of RIBA. obviously I had concerns with reducing,again she reassured me it should make no difference and at this point it's the bocep that is critical.

i have to stay positive but I'm concerned about the decisions I have allowed her to make unquestioned.

Thanks again Mallani

xx

mallani · Guru

Hi Susan,

Sorry, I didn't intend to cause uncertainty. It's just that the 12 week VL is the one when you decide whether to continue treatment, and when you show if you have an eRVR. It's part of the Australian Victrelis protocol.

Your doctor is the one treating you, so stay on her drug protocol. It doesn't hurt to ask questions. May I ask what dose of Ribavirin you are on? It would be worth doing some research about the treatment of the Riba. anaemia, and the effect of dose reduction on SVR. I'd want to be on the maximum dose I could tolerate. Hope you're doing OK. Cheers.

MzmiffY · Veteran Member

Hi Millani, hope you have had a wonderful day!

Hmm, firstly I should apologise, your most likely spot on questioning her use of words. In what feels like this perpetual state of fog, it seems I cannot trust the accuracy of what my brain knows to be true. In my complete ignorance, must have picked up "early stage" somewhere,possibly even dreamed it up!

Like I mentioned, based on those results, I was initially confused as to why she would keep referring to me as cirrhotic and as such I am according to her required to do the full 44 weeks.

The last VL was done at week 8.Based on what I had read here and there expected the next one at wk 12. I was told they dont do another until around 20 + weeks or at half way mark. so I have just over a month to wait.

I have been feeling so confident, that has now been replaced with uncertainty.

I am due to see her in 2 wks so will be armed with well overdue questions. In the meantime I'm unsure if I should continue with the same dosing schedule or is it too late to start again?

Thankyou so much for your input, knowledge and diplomacy!

xx

mallani · Guru

Hi Susan,

You Fibroscan score indicates you are F3-4. Cirrhosis(F4) starts at 14.5 kPa. Cirrhosis can only be definitely diagnosed by biopsy. 'Early stage cirrhotic' is not language I would expect from an Hepatologist. It's like being 'a bit pregnant'. It's very important for you, as cirrhotics must do a 48 week treatment (44 weeks of Victrelis). However an F3-4 may only need 28 or 36 weeks if they have an RVR. Obviously, you must be guided by your doctor, but I'd be asking a few questions.

I didn't want to say any more about your strange Victrelis protocol. I'll just give you some information. True, boceprevir and telaprevir are antiproteases, and both block the NS-3 viral site. These have completely different structures. The most important difference is in the plasma half life. Boceprevir has a plasma half life of 3.4 hours, which is why the 8 hourly dosing is so critical. However, telaprevir has a plasma half life of between 9 and 11 hours( depending which research you read). This is why telaprevir is now approved for twice daily dosing. I would ask your doctor where her data about twice daily dosing for boceprevir comes from. Also, has she used Victrelis or Incivek before? Sorry, I don't mean to interfere, but I think it's reasonable to ask these questions. On the other hand, if you trust her, forget my comments.

BTW, did you get your 12 week VL? Cheers.

MzmiffY · Veteran Member

Nice to meet you Milliganus and thank you for your encouraging words.
I wish you the same success on your journey!

Hi Millani,
I must admit I was left a little confused over the certainty of being cirrhotic and that if in fact it was a little premature?
If I measure the fibro scan result against the fibrosis markers, it looks to be that I am stage f3-f4.

Median stiffness 13.6
IQR 1.8
Ratio of IQR to median 0.13

Thinking this indicates I'm not cirrhotic, I enthusiastically pointed this out to my GI.
However she insists that I am already early stage cirrhotic.
What do you think. I was clinging to the hope I may not be, yet she tells me otherwise.
Do you think she is wrong?

Also, with regard to only double daily dosing, she has intimated that bocep and telaprevir are almost the same thing? I'm sure she is basing her dose guidelines on this.
As a GI, she has really impressed me. She is very warm and approachable.
Up until joining here,herself and my nurse have been the only ppl to bounce questions off.
I guess I have felt who am I as someone who knows nothing, to question her expertise.
Any thoughts?
X

Milliganus · Senior Member

Welcome Susan,

This is a great forum. I have learned so much. I am also undergoing treatment here in US and hopeful that I will finally clear this. You are still quite young, so I think your chances are excellent of achieving SVR. I am not cirrhotic but there are many people here that are and can give you great advice.

Good luck on your journey!

mallani · Guru

Hi Susan,

Your Victrelis protocol is very strange, but we'll just trust your doctor.

You're very young to be cirrhotic. Can I ask how that was diagnosed? I hope it was by biopsy or Fibroscan. Also, do you have your 12 week Viral Load?

Feel free to ask any questions about any side effects. We've had them all! Good luck.

MzmiffY · Veteran Member

Good to meet you Mallani and Tig!
Thanks for taking the time to read and respond.
I have so much to learn and welcome any advice or information.
I am thrilled at both of your success with treatment and remain hopeful my journey mirrors a favourable result.
When it was time to introduce the vic, I was all prepared to dose 3x daily. Like I said, my specialist advised only twice daily was necessary and that all her patients follow this schedule. I communicated my ambivalence but she was very reassuring. Ultimately it was my decision to follow her schedule and being relatively close to halfway, I will continue with the same schedule.
Time will tell....
One positive since beginning treatment is I have noticed that my spider nevi have disappeared. I had 3 around my chest that had bothered me for a couple of years.
Thank you for the link Mallani,I will continue reading tomorrow, just a little tired right now.
Hope you are both feeling wonderful!
Take care x

Tig · Admin

Hello Susan,

Welcome from me too! I'm also a successful Victrelis patient. I spent 24 weeks on the drug and like Mallani, I too was instructed to take it three times daily. The importance of following that schedule was repeatedly told to me, so I also recommend you discuss your dosing schedule with your healthcare team. I wish you the very best and look forward to your progress reports, good luck!

Tig

mallani · Guru

Hi again Susan,

I just noticed from your other post, that you're only taking the Victrelis twice a day. That's really strange, as I took 800 mg (4 capsules) every 8 hours. It was stressed how important this was, to keep optimal, steady drug levels.

I know that Incivek (Telaprevir) is now approved for twice daily dosing, but there has been nothing published about using this for Victrelis.

The latest data was from the Cupic Trial in France last year. The final results are now available. Merck won't be spending money on more trials. Here is a link:

http://www.natap.org/2013/EASL/EASL_106.htm

I'd be very interested if your doctor has any further references. Cheers.

mallani · Guru

Hi Susan,

Welcome from a fellow Aussie.

I did 48 weeks of the Victrelis (Boceprevir) triple in 2012-13. I was lucky in that I have cleared the virus. I had a difficult time with treatment, as I am cirrhotic and older. The Hb was between 80 and 90 for most of the time but dropped to 71 by the end. No Ribavirin dose reductions for me!

It's a hard grind but well worth it. I now feel great, and my cirrhosis has resolved significantly. My LFT's are all back to normal, for the first time in 30 years.

I see from your other post that you were Undetected at week 8, and this is RVR, a great indicator of the likelihood of SVR.

Keep us posted. Cheers.

MzmiffY · Veteran Member

Hello everyone, hoping today is a good day for you.

This is my first attempt to reach out and be part of a support community.

I have had hep c 1a for 9 years. I am almost 5 months into treatment (boceprevir).

I began treatment following the news my liver is cirrhotic.

I am really encouraged to have found this site and look forward to learning and sharing more with you.

xx

Hep C Discussion Forum

Legal Disclaimer: