Hep C Discussion Forum

btw, seems GS7977 will happen sooner than we think

http://hcvadvocate.blogspot.ca/2013/04/gilead-submits-new-drug-application-to.html

Hi,

Just back from the hospital. I had a long chat about everything and she is Ok for me to wait, she has ordered a liver biopsy next week, as she wants to be sure 100% that I am stage 0-1. We agreed if I was a 2 we would not defer treatment til next year, but start straight away (a biopsy is the only method that gives 100% certainty). I didn't know but had a slight elevation in ALT's in 2007 but this time they are all in normal ranges. It was not a significant rise to alert any other tests as the liver can do this normally. She said not much would change over a 5 year period regarding disease status and I could wait, but I said if Gilead are not approved by 2014, I want it treated and move on in life.

Regarding new drugs, we are fully covered for new drugs, when they arrive they can be perscribed. The only thing she stated is that it is possible that there are delays, as she has seen this many times. It is possible the states use it first before us over here. It all depends on OUR FDA approval system.

I found out I am genotype 3b and not 3a. She said this is only significant for genotype 1 as 1b is harder to treat than 1a.

I asked about diet, suppliments and life style. She stated that there is no need to change diet or add suppliments as it does not impact the disease, she said it is important to not drink acohol, and she is against even modest consumpton (which was maybe a glass a month of wine).

Had to have more labs for blood clotting for the biopsy, they wanted to do it Monday, but I asked to wait a few more extra days.

What is your 8 week result? Good news I hope????? x

all good i was moving out back to the city from the mountain...Saturday is my shot day, so i am out of order most of the weekend ;-s eating bit unhealthy lately, trying to gain back few kg (doc said i had to get back few kg)...going soon to do another blood test, my WBCC is getting really low, strangely RBC is below lower limit but not by a lot and it pretty stays that way each time, which i again found out from my doc that it can sometimes be a bad sign. She mentioned that she noticed when Ribavirin is more toxic to RBC levels that it works better with hcv. Apparently she can't raise me Ribaviring intake (from 1000mg daily to higher amount).

waiting for 8th week pcr vl results tomorrow, anxious a lot!

are you going to doctor tomorrow for consultations?

do tell what he recommended. I've shared my personal opinion, if i knew there will be posibiliity over here to get new meds in 1-2 years, and if i knew the effect interferon is doing to my audiotory system, i would wait...but considering how bad situation with health insurance over here is, my only real chance to try to get rid of it is old SoC therapy or the neverending waiting game (or even kill all savings just for new meds "game")

best

Hi Lisa

to be honest, if your insurance will cover new meds and if they will arrive in 1-2 years in Holland (with healthy liver of course!), i would definetly wait! Me on other hand, I don't have other choice other than Interferon based tx (which is fully covered by my insurance, weird!) or try to save 30-100k $ for Gilead's Sofosbuvir (+GS5885) or Abbott's triple DAA and buy it in USA when it gets on the market, since it won't be available here in many many years to come. Long term sx of Interferon tx is still not well understood, and i know a lot of people who refused Interferon based therapies. Just few days ago i had biz meeting and guy told me his mother in Romania discovered she has hcv, refused Interferon therapy and she is atm on some natural therapy to try n keep healthy (or who knows even gets cured by it?) until new interferon free meds arrive.

I still feel like 90year old...now since 3 days ago i got 3 new rash hot spots (both legs and now on the back). I think Riba is kicking in with it's sx (nausea is more often, i feel depressed and really emo more often) I missed my blood test check on Thu (was 20mi late, lab got closed) so i am going again on Tue to check how WBC/RBC count is going. Sometimes next week i will get VL results (8th week check) too. If the VL went up from 51ui/ml, i think i know whats my destiny is, if i am UND, then fight is on!

talk with your doc, if he knows some info regarding how much dutch are behind with availbility of new meds, he can help you decide. I think most of EU states were 1 year behind USA with Telaprevir/Boceprevir availability? So that might be indicator for the new ones too, i guess.

glad u liked whey. Please try to find natural fresh whey juice, instead powder one, much better!

all the best, whatever you decide you will get support from this forum for sure

That is the strange thing, they are applying to both US and Europe at the same time? It looks like the new therapies will still be used with old meds to reduce usage time to 3 months instead of 6 months in the beginning (cost effective?) For me is most important getting rid of it before I get any liver damage. My dr. thinks the virus it is living in harmony with my body whatever that means! I am a little nervous that things could change in a short period, after all I probably had this 20 years and so far I am lucky I don't have terrible damage already. :/

I am so sorry to hear about your sx, look after that rash and get your counts checked ASAP, sounds like you are getting amemia? On the upside, most people who get side effects are more likely to have UN. If that is the case it is worth every little bit of **** you are going through!

Sorry to hear about the depression, maybe its time to consider anti-depressents? It might make it easier to cope with, I think the sx can cause the depression as well, due to having to force yourself to feel sick when before you were feeling good!

I guess for you, it is easier you are a third through treatment, and the more time that passes the nearer you are to a cure! It doesn't seem like much, but this time next year it will all be a bad memory.

I guess for me the discussion on the 9th will clarify what I am going to do. I feel like I should do something but waiting is also desirable. Grr it is a catch 22! :*

-- Edited by Loopy Lisa on Saturday 30th of March 2013 03:03:02 PM

Thank you Step Guy, I understand your point of view, I guess I am all new to this, I have only known for sure a matter of days. I am trying to understand about my condition I suppose to help put it in place in the scheme of things.

I see you are a vetern at this, sorry to read you have liver damage, I am keeping everything crossed for you, seems you have battled hard and long!

I have to say, I thought my world would end with this diagnoses, but actually I am suprised how everything is still normal apart from reading a lot about a condition I had heard off, but really new little about.

I guess I am being a little insensitive to people's choices in their own path. It is not intentional, I guess it is my coping mechanism.

Wishing you a easy weekend, I guess it is shot day for most people on treatment. Hugs

It is funny you should say that, I was reading about a woman after 12 years of infection, spontaniously cured hep C and everyone was confounded as to how? She just passed the 6 month undetected level, they should research her diet and blood as to why! I heard the lower the viral count the easiest it is to treat. I am medium so will probably get the 6 month all in joy!

I am getting a little nervous about being a non responder or not able to tolerate side effects, I guess this is normal pre-nerves. My heptoglogist talks to me like I will cure it. Maybe they know if I am CC or CT (I think that is how they are refered too).

I wonder how people get through 48 weeks? 6 months seems a trial let alone a whole year!

I think this is the first time I feel a little worried, perhaps this is a normal resonse to my looming first injection lol!

I will ask about this whey juice, I am one of those people that love goats cheese even the smell, that might change with nausea though lol!

I read some tips online last night on how to lesson some of the side effects with the medicine. Take the pills mid meal, this will help with gastro problems with a fatty item, don't take them evenings as they are a stimulant, so morning and afternoon with food. Swill your mouth with a bit of bicarbonate soda before eating if you have any taste changes, use a decent anti-bacterial mouthwash to limit sores and possible oral thrush. I read as well that getting good hair products, good natural cream products (even olive oil) will help with hair and skin as they will dry out. I hear less appetite problems with our therapy but plenty of nausea. My nurse told me if that happens, eat 7 small meals throughout the day rather than force feed a big plate of food that makes you hate food. No coffee after 5 pm, stick to decaff and light excercise will help with muscle problems.

I could wait, but the thought of this being over with before winter appeals to me. The longer it is left, the larger the burden mentally. Thankfully over here our genotype is suggested for immediate treatment.

I was reading in the UK due to budget cuts they are suggesting people too go on good diets and leave it until liver changes. Why wait until you have further problems? This is insane although I can imagine people not wanting to go through treatment because of the side effects. You only get one life though, and I want a long, healthy one!

I feel very lucky with my team in place, they are friendly, honest, and have told me it will be tough. They also have made sure I can physically take the cure and I feel safe in their hands. I still am a little worried about being at home for the first shot, I guess they had no one have a terrible reaction to keep doing it in hosptial. I might still ask for this in hospital though! :/

Apart from that, life is grand, things seem prettier, more enjoyable and even the smell of fresh air reminds me why this is important to do! I am grateful to have found other people that show me that this can be and is being done! Thanks for sharing this journey, you give me a lot of hope and help! :D

Hi Lisa, you`re right about the situation here in the UK, a lot of people with genotype 1 are waiting to get the new triple therapy drugs through our NHS (National Health Service), and have basically been put on hold because of a shortage of funding, unless they can afford to pay privately.  This means that only the people in the direst need are getting the new drugs...anyone who isn`t ill enough yet is having to wait.  It`s a dreadful policy and very short sighted too, and I can`t see the situation changing any time soon, unfortunately.

I`m glad you`ve got a good medical team you feel you can trust, that will help a lot during the course of your tx.  It`s good to find out as much as you can before starting tx, and by the way I don`t think you were being insensitive.  None of us here would call ourselves experts, but we are all entitled to express our points of view and discuss ways of dealing with tx and sx.

It`s natural to feel nervous about your first shot, but you`ll be surprised at how easy the injection itself is.  The needle is very thin and you won`t even feel it.  I did my first injection in the hospital under instruction from my nurse.  I was nervous too, but once I`d done it I was relieved at how easy it was.  The fluey feelings don`t usually start for a few hours after the shot.

All the best...

well i do not intend to drink wine, unless i get rid of liver occupant ;) and if i get rid of it, it wont be ever again drinking to get drunk, yet have a glass or two usually with food...i miss a cold beer on a hot day, glass of quality red wine with mediteranian cuisine, a glass of herb brandy before lunch...i can live without it of course if my health situation doesnt permits it...as soon as i was diagnosed with hcv 8 months ago, i havent had a single drop of any type of alcohol. i do take this therapy and virus serious.

cigs do cause lung cancer, red wine doesnt give u hepatits c (well maybe in case autoimmune hepatitis) ;) i did not get hcv cause i had too much wine ;) (but it sure do not help to get rid of it)

just my 2 cents, i got 2 mates who acheived SVR years ago (gt1), they do have a drink or two (both smokers too!)...i dont find ex-hcv patients as folks that have to endure a pleasures death sentece.

i will get rid of hcv, regenerate liver and enjoy my life a bit more responsibly than before regarding liver ;)

cheers!

Aww don't beat yourself up for over sleeping, I have heard it starts with not enough sleep and then the body begins the battle, resulting in a lot of sleep. On the upside, whilst alseep you do get a rest from the horrible sx!

That is why I never was tested for Hep C over the years because I always have normal results. I found out that someone from my past had Hep C, cured it and failed to pass this information on to me! I decided rather than keep it to myself and hope for the best, to tell my exes to not be afraid and get tested. My husband whom I have lived with for 12 years is negative, my ex of 5 years is negative, and bingo.....I don't feel angry, let down or a victim, I am just grateful that the people I have spent a large part of my life with have not become infected because someone didn't want to tell me.

It doesn't suprise me that this disease goes without diagnoses, my regular Dr. tested me for Hep A + B when I first noticed a change, but I was already annocculated, so they disregarded the hep route. I ended up with a diagnoses for Fibromyalgia and told not to search for any other answers. If it wasn't for I.V.F, I wouldn't have known until it started to attack my liver, if it ever would... (some people can live their whole lives with the virus and die of natural causes).

I have a great feeling for your outcome, you are under 40, no co-infection, and a good responsive geno-type. I know in a few months I will be congratulating on your post-treatment recovery! The best thing is post treatment, the little bit of fat you have in your liver will go away, and it will heal to how it was before, if it isn't already having a nice break from it all! In some ways I am jealous, you are through nearly half way! :D

We are lucky because our genotype is the only one that has this particular problem (fatty liver). Considering you had it for many years, you must have looked after yourself well to not have a fast progression. I am lucky because I am pre-menopause, it is tougher to treat after as women lose the natural estrogen that protects us. Thankfully I am a coffee addict too, seems I self treated correctly without even knowing I had it! :P

My first shot will be 19th April in the comfort of my home, I was told to clear the whole weekend as it will be the hardest weekend. Thankfully they are not sugar coating anything. They said most weekends will suck until end of treatment, looks like the summer holidays will consist of crap weekends followed with a few days of feeling a little better, how exciting......NOT!

I hope you are in good spirts despite feeling drowsy, the body has a good way of letting us know when to slow down. I guess your body needed more time out with the extra sleep.

I read about a trial in the UK with the new Heb C drugs for genotype 3, they sound interesting, but the only difference is, it will be pill form. I'm afraid the side effects are pretty much the same, so I won't put it off. Most advances are for Genotype 1, but it is reassuring there is still that plan B!

Have a lovely day if you can, here it is showing signs of spring, the sun has a lovely way of making things always seem brighter! :) Hugs

good! healthy liver has better chance for therapy to do it's job

well you should be happy that u discovered hep c early, before it started to eat your liver and happy to have Genotype 3 which is easier to treat.... i mean, i wish damn docs told me long time ago when they saw ALT levels abnormal to do hep c test,i coulda have maybe fought infection off, maybe even in acute phase while i was in my 20s...anyways, i am glad i am fighting it in my 30s and that new meds are almost here...not afraid of it (more afraid of long term interferon sx)

i overslept again, sleeping 10-12hrs with 1-3 naps per day...my normal sleep time is 6-8hrs, so feels odd being sleepy this much...

Yes I will question that tomorrow when I see the nurse. I prefer to have my first shot in hospital, I think it will be the scariest moment!

Here it is simple, we all pay medical insurance and everything is covered. If you want more than basic dental care you have to pay higher. The only addditional cost we have passed the set insurance cost, is a set 350 Euro in one year and nothing more!

That is terrible you have to pay for the broken medicine! I would just have mine replaced, I guess that is the benefit of living here. This really does upset me, that people cannot obtain or cannot receive treatment because of money! I know how lucky I am to be where I am!

I have dogs and it is nice to walk with nature about and forget about dirty cities and noise pollution, but we are not too far from a city that we are isolated. I actually slowed down over the years, I found that stress wore me down and gave up my career as stress gave me symtoms. As soon as the stress was gone, so did many of my symptoms. You can see how 1+1 made 3! ;)

My husband is reading all the leaflets on Pegasys and Riba treatments, I think he is very glad I didn't share everything in this marriage, especially my pet hep! :P

I will get a pen injection, I have seen these before, takes the stress out of vials. These are harder to break as well as they are surrounded in a plastic, basically it is the same method given to diabetics but easier to inject and less likely to result in damages. I am kind of jealous you have one less injection than me! Saying that if I am a lucky person, I may only have to do a 16 week therapy if I respond well (it was also in my leaflets from the hospital, but didn't read it properly)! :P

The Netherlands is a fantastic country in regards to healthcare, modern technology, infrastructure, and they have the best retirement plan in Europe. But despite this, we have an ageing population and fewer births, this will eventually become a problem. Taxes are high, cost of living is quiet high, but most people have a good standard of living.

All of the Balklans are still recovering from recent history! I saw a photo of a lake in Croatia, I forgot the name now, but it looked like a peice of paradise with waterfalls and the bluest water, you wont ever find such beauty in the Netherlands!

Oh well, I guess I should sleep as tomorrow I have my fibroscan, I don't see the point in having a biopsy, as the viral reaction to the drugs is apparantly an indicator to the duration of therapy needed. They normally do this for genotype 1 as aare type have such a high success rate with therapy and are suggested to treat per se regardless of liver disease progression as it has such a high success rate. We are both lucky to dodge that bullet!

BTW excellent command of the English language! Sleep well, hope you wake full of energy and ready to go.

PS: ummm got me thinking about muscle loss, I will use my wii as I can do as little or as much as possible. I might get embarrassed at the gym if I fainted after 5 mins of warm up! :P

Hahaha sounds fun on the slopes!

I sign in one more day, I have the scan same day, and the results are discussed with the Dr. on the 9th. I guess I should say my liver is functioning normal rather than no damage, because I don't know that for sure, but blood tests indicate everything is working well.

First shot will be delivered on the 15th and I will do that in the evening. I have someone coming to my home to show me how to do the medication, so I assume I will have the first shot at home, that is not clear to me yet!

Here we all have medical insurance, this is standard. Even if we didn't have medical care we would be treated regardless, I have never heard of anyone not been treated because they don't have medical insurance!

It is attractive to wait for new treatments, but it does work better on people under 40, I know they have had trials here, but not for our genotype. When the new drugs are released depends on the cost for each hospital I guess? If I knew they would be here next year, I would probably wait, but I don't think that is going to happen!

I am hoping I don't get many side effects, cleaning to day it came to me that I do get foggy moments in my brain and it is probably the virus. It is not just in the liver, it is all over the body. Funny how things fall into place really, all those days I felt wiped out it was this pesky virus, my husband thought I was just lazy lol! Either way, I will battle through, a baby is a great incentive to get through it all!

I hope I do get a good responce, I would love only 3 months treatment and be done, but I will concentrate on 6 months and like you said, go with what my Dr. suggests.

Sorry to hear your feeling a little down, it is to be expected, but I see you are getting out and not giving in to it, that is important! I'll take onboard about excercise, I actually have stopped going to the gym and replaced with long walks with the dogs. The initial stage of the diagnoses hit me for six! I haven't got depressed or anything, more had to slow down due to a massive bout of IBS and tiredness. I am picking up though and will go to the gym tonight! I have to say, I always feel better after the gym, I hope this applies on treatment too!

That is interesting that people get rid of other problems, I am one of those weird people who had hayfever once, and it never came back again. Perhaps it was due to one flower type and it is not planted as much anymore?

Sounds a great plan, sounds like a slice of heaven to me. Swimming in a beautiful location in the sunny weather. One of the reasons I wanted to start now is to have the sun out when I am on treatment, because I can sit in the garden and enjoy the weather. I live in a tiny village near a forest as that was a peace of heaven to me. I wish I was near my friends now as I will have chunks of time alone whilst my husband is at work. Thank god for the internet and phone lol!

Are you an expat?

@Jill, thank you, it is really kind of you to hang around even though you are cured supporting everyone, especially as you have your own problems to contend with. It is good you have tried therapies as it is all about quality of life.

My best friend, husband and family have been great at keeping me positive. My best friend is miles away and come on MSN to chat everyday and even making me laugh. Family have been loving and supportive and my husband thinks we can conquer anything together. This lifts my spirts and even if I don't get a cure first time (although I actually believe I will) I have my team Hep c to help with my battle. We have named it "my pet hep."

I think half the battle is knowing something can be done, now the waiting is over and operation cure will begin that sense of not being able to do anything has ended. Being helpless was the worst for me, not knowing. If you don't know you can't fight it. I watched my mum battle cancer, she lost the battle but she never complained. She never showed fear, stopped caring how we were, and smiled even when there wasn't much to smile about. She made me so proud of her I can't give words. My mum is my hero, and I hope I have her strength and character to help those days when I feel less than positive, but I will remember her fight and not give in!

Hugs to you both!

Hi Jill,

Thank you for your kind words, I'm getting mentally prepared and ready for my journey to freedom.

It is a strange shift for me, everything seemed very scary to read before diagnoses, and now I can't read enough about everything. I have shifted to the pattern of thought that if I had cancer, I would welcome every drug on the planet no matter what the side effects and decided to view it this way.

I was chatting with one of my brothers who works in a hospital, and he told me he worked with someone that had hep C and he managed to work all the way through treatment with a few days off here and there. He was cured and went on to get a fantastic job elsewhere, his life swung around 100%. These are the stories that make everything seem worth while.

The Hep nurse did ask me am I sure I want to do this as it is very tough treatment, my answer was "damn right I do!" I think she was worried that I am jumping from diagnoses into treatment. I sure wouldn't think twice if I had cancer!

I am considering the anti-depressant option already, I have some months with PMT that last a week until menstruation. As the drugs can heighten emotions I am going to discuss this. I am actually the kind of person that hates meds as I aways had the motto, I have an immune system that's what its for. I think I have had a change of heart on that topic lol!

I read you bio, sorry to hear about the M.E. My sister in-law has this too, she is currently on a anti fungal diet and seems to be improving her symtoms. It is to do with Chek therapy, a life style of diet and exercise with habit changes. It is tough but it has shown promising results. Perhaps this is something to look into?

I was reading and mulling over some information from the States, people with my genotype have taken weight assessed amounts rather than the standard amounts and were able to have 12-16 weeks therapy on higher doses and were cured. That is a big jump in cure times and they were able to withstand the higher doses as it was a much shorter time frame, have you heard of anyone doing this?

Hi again Lisa!  Well it`s good news that you have gen. 3a, as you now know that you definitely do have Hep C, and in your situation I think you`re wise in opting for tx now so that you can get on with your plans for IVF after it`s all over.  As you already know, you will need to wait for 6 months post tx before it`s safe to get pregnant, so I`m sure you`re eager to start getting rid of the virus as soon as you can.

Yes, it`s true that some people have few side effects at all, it really does vary from person to person, and not everyone loses their appetite either.  Many of us have found that the first shot is the worst one, and it`s a good idea to be prepared to take otc painkillers, unless you`re as tough as our friend Zlikster of course!  Drinking enough water to keep yourself well hydrated also helps.

Keep in touch and you`ll find plenty of info and support here.  It`s so useful to be able to compare notes with others in the same position and you`ve found a good tx buddy in Zlikster! 

Wishing you all the best of luck, you should respond very well to tx at your age.  ~ Jill

Ps - Yes you`re right, life is so much better for me now since I cleared the virus!

i was willing to take even more of % of relapse chance just to lower interferon treatment duration, since i have realised it is the one making tinnitus worse...but since i am not undetectable @ week 4, i will go full 23 weeks (damaged one shot, dont ask, thats why it's not 24)

this is what i take:

1 x Vit D 400 (this is actually for my pseudoartosis/bone fracture, but doesn't hurts for hep c too as i heard)
2 x Vit E with fish oil (doc approved)
rarely 1 x Vit C (in case of flu, otherwise i dont take it, doc approved)
since last blood check cuase of low white blood cells count doc said i should take 2 x 500ug Vitaming B12, will check on next blood test is it givin any results

i don't use any pain meds, tho i think i have should have done it just for first shot...as i said since few days ago, i got vaporiser and using tiny amount of cannabis for inducing munchies which in turn give back some false food taste back and appetite, since interferon knows to dampen taste buds on tongue (metalic taste kinda).

i used to take Liv-52 before this treatment (infektologist recommended), i didn't find any noticeable difference in my ALT levels nor high viral load drop (from 33k to 25k), so i have stopped with it. Also tried for 2 weeks Ginko Bilboa to try to see is new tinnitus in left ear pressure related (no it's not).

sure! we can buddy up i am always there for support...

when i was reading about possible side fx from interferon, tinnitus was mentioned to happen in 1-2% cases...i think that might be a bit underestimate, since some people do not consider tinnitus as a real side fx and do not tell their docs about it in my case it might hurt me job wise, so i am not that happy to bear with a fact that might be a perm side fx.

as for other side fx, it is pretty individual...common side fx from interferon shot: headache, fever, nausea, body aches...like a really bad flu i guess. Interferon also supress production of neutrophiles, leukocytes, platelets, but that doesn't happens over nite, so after awhile you should be more careful not to catch any bacterial infection since your body will have less resources to fight it off. Ribavirin on other hand, takes time to accumulate and it drops red blood cells counts, so u have less oxygen/energy available. I haven't noticed psychological side fx from Riba (riba rage, mood swings, depression) yet. Last 2 weeks i have noticed lots of small infections in my mouth, nose, throat since my neutrophile count is getting lower with each blood test i guess i have to deal with it. Few days ago i got rash on right leg (Riba sidefx?). It's all managable some days are bad, some days are ok...u can't find pattern with intensity of side fx, but in general 6hrs after shot sidefx start and last 5-6 hrs but can be extend to few days. Try to get injection on Friday nite (18-20h?) and try to fall asleep before first heavy side fx, in other words sleep it over

my vl day before first shot was 25.022 UI/ml, on 4th week i was almost undetectable with 51 UI/ml (i was so keen on it and possibilty they would shorten my therapy to 4-5months if i were UND), on this Friday i am going to do another VL check (8th week ends) hoping for UND

in other words, we can do this! all the best

I don't wanna scare you, but i feel obligated to warn you. I also have tinnitus (loud audio exposure damage one) for last 4-5 years, really light one (noticeable during nite only), but after first injection of interferon, tinnitus got louder up to 150% and i got a new one (lower pitch) on left ear. It really bothers me since i am sound designer/composer and it influences my ability to work properly (not to mention sleep and rest). Apparently interferon is well known for it's ototoxic part, tho it's not yet well understood why some people are more sensitive with it's audiotory system to it than others. Probably some genetic precause. As most of the people here that had tinnitus as sidefx from interferon said that it goes away as soon as u stop with injections, i kinda feel optimistic, but some people had it as a perm side fx after therapy...

new meds (seems Sofosbuvir will be first on market) are indeed really amazing, but it will be first available in USA and EU will be year or two or even more behind. I am not sure are there any clinical trials in the Netherlands, you could check with your doc are there any available? most of people here on clinical trials are either in USA or UK. Since i live in Bosnia there is no chance for any clinical trials over here, and DAA meds will arrive in 10 or 20 years from now if ever...so my plan is, if i fail this therapy, to save money for new DAA meds and buy them in USA, tho it might be very costly (30k>$).

my experience (i am soon gonna be in 3rd month of therapy, 9th shot), interferon is serious biz...first shot was like a hell, after it u get used to it and shorterm sidefx are more ez, but as time goes by, your energy gets depeleted and your blood cell counts drop.

re weight, as soon as i heard i got hcv, i have stopped with alcohol, drugs, fizzy drinks, high fat foods...i lost couple of kg in 6 months, maybe that was a mistake (i am a slim type), since i have lost additional 5kg in first 2 months during therapy...now i am 10kg down from my original weight.

my friends got me vaporiser few days ago and i have started to smoke once per day or two weed again (i don't smoke cigs, so i dont like joints) and my appetite is bit back! I guess munchies are useful in this condition

if you need any help, hints&tips i will gladly share what i know

Hi Lisa,

i am pretty much in the same condition and i had same response as you did regarding treatment. Genotype 3, small VL 25,000, Liver mostly normal (lite fatty liver), and liver enzymes elevated a bit...i was also been thinking shall i wait for new DAA drugs or go for old PegInt+Riba and decided to give it a go with old therapy and if i fail/not respond future is bright indeed with new meds

from all genotypes, Geno 2 is easiest one one to treat, the after it comes Genotype 3. And seems females have better chances than males for RVR and SVR, so stats are on your side!

therapy ain't ez, but it's bearable. I had one nasty sidefx which rarely happens (tinnitus, hearing disfunction) from interferon injections, but other than that side fx can be managed.

i am not sure where do you live, but if you have a chance to get into clinical trial with new DAAs, that would be a smart option too (get expensive DAAs for free, no interferon side fx,etc). Lots of people on this forum are in some clinical trials. Some were really lucky to get into clinical trial with Sofosbuvir and Daclatasvir and achived SVR quickly and without any sidefx.

all the best

Loopy Lisa wrote:

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I am so happy you are virus free! I am trying to stay calm, I might only have the antibodies. I am a little up and down but that is normal. I guess I will feel better after I have my results and know what the future is. I know one thing for sure, I will be opting for the cure. It seems a lot of people are responding so this is very encouraging. I can imagine life is so beautiful for you now. I regret all the things I have taken for granted. I am not going to tell everyone because of the stigma. I am hoping I already cleared the virus, or will clear it with medication. I can't think of the other possibility because I would not be able to cope right now. Hugs x

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I am so happy you are virus free! I am trying to stay calm, I might only have the antibodies. I am a little up and down but that is normal. I guess I will feel better after I have my results and know what the future is. I know one thing for sure, I will be opting for the cure. It seems a lot of people are responding so this is very encouraging. I can imagine life is so beautiful for you now. I regret all the things I have taken for granted. I am not going to tell everyone because of the stigma. I am hoping I already cleared the virus, or will clear it with medication. I can't think of the other possibility because I would not be able to cope right now. Hugs x

Thank you Bill,

I feel a lot better this afternoon. I realise I have been feeling sorry for myself without all the facts. I know I need to get my results and take it from there. My dog is warm and comforting, she doesn't care what is wrong with me, she simply loves me. I am glad you have your dogs, they can be the most wonderful carers when they sense we are down! I am wishing you a speedy recovery and I hope you are bearing up well with treatment.

Thank you for being there.

Thank you Jill,

You for some reason gave me a little peice of mind. My husband, best friend, and brothers have been very supportive, but it feels like a solo journey in some respects. I can honestly say, my dog has been theraputic, never short of cuddles and I know I am loved, this is important too.

I am sorry for your diagnoses, I am relieved in some ways I know, because finding out too late would have been worse!

I have read about new drugs released and some coming in 2014/15 this is also hopeful!

Thank you for replying, it does make a difference, and now I am concentrating on not making myself into a "victim."

I do know for sure, that this will make me a better person, suddenly all the things that seemed important in the past seem trival.

If I only have antibodies, I will look to help others in some way even if it is there for  just support. Just having someone understand makes a world of difference.

I will let you know my viral count test, and what the next step is. Either way, I am grateful people have opened up about their own stories. It gives me hope and the feeling that I ma not alone.

Thank you everyone. x

Hi Malcom and KLG,

I think you are both right. I think the mixture of shock and grieving for my I.V.F has really shook me. One second we were looking at baby things, and the next I am looking at this virus my husband had never even heard off.

Yes, you are right Malcom, my mind has gone into overdrive along with my imagination. I have my viral test load results in just over a week with the liver specialist. Every part of me prays I have only the anti-bodies, but at the same time I have to be realistic that this might not be the case. :(

I guess it has changed everthing in a nano second. On the upside my husband is negative, and I phoned my ex, he is also negative, he was tested last year as he is a drinker, his Dr. insisted on running full blood panels. I spent in combination 16 years with these two wonderful people without infecting them.

Last night was the first time I really fell apart, I had slept and ate well up to this point and I think it hit me. I'm sure everyone has this moment when they are facing an illness like HVC.

I had heard of Hep C, but had never seen an awareness campaign, or told about preventation. I wonder why it is all so hush hush? I read over the last few days that in the US (I'm in Europe) there are higher infections of HVC than H.I.V. I have no clue of European infection rates, there seems to be a lot of outdated information.

I have no clue how I actually got the virus into my blood, I guess I'll never know. I chatted with the person that probably infected me, it was good to chat to someone who pulled through it. He was an ex drug user and cleaned up to have the treatment. I have never taken drugs so I guess I probably cut myself and was unaware.

I guess I was a little insensitive in my panic last night. I know that this is not easy for anyone to face, and some of you are going through tough times.

Thank you for the hope KLG, I had the results my ovary production was good still, at the same time I am positive for the antibody. The I.V.F specalist just said "I found something strange in your blood, you have tested positive for the Hep C antibody!" He then asked me if I had injected drugs in the past which upset me a little. My only real vice has been smoking tabacco, I guess I'll have to nip that in the bud.

He already said that I should take the cure if I am not a "carrier" and then come back to I.V.F. I will take the cure on offer, if I am contagious.

Thank you for answering, it is appreciated. Knowing there are other out there like me, does make it easier to face. If I just have the antibodies, this will have been a life changing event regardless.

Hi everyone,

I went for I.V.F at 39 to discover I have Hep C antibodies. My husband was negative. I may have had this virus over 20 and I am terrified. I don't know yet if I am in the lucky 5-10% that beat the disease on their own as I had no symptoms. I was tired alot and did go lots to the Dr.s but i was diagnosed as having Fibromyalgia so stopped looking for an answer. I know had the second sets of tests and go to the specialist in 1.5 weeks.

I am trying to stay positive, but my mind is giving me worse case senarios and I am having panic attacks. I am scared I had it so long I may not be able to get treatment?

I found out I probably was infected by a friend who was cured years ago but failed to tell that I was at risk or should test.

I won't be able to have I.V.F and it is not sure until all the tests are in I can have the cure. I know this sounds fatalistic but it feels like the end of the world.

I have read so much on the net, it has left me terrified. My sister died at 41, my my 52, I don't want to die young, I have so much more to do in life....