MyHepCTreatment.com

Well, today certainly didn’t go anything like I expected to. I had expected to start  my Hepatitis C treatment today but sitting back at home on my bed right now it looks like I won’t be starting until at least next February, a full 7 months away!

The basic reason for this is that on my ultra-sound scan something showed up on it. The Doctor said that there was no scarring, fibrosis, cirrohsis or anything like that which of course is good news and that this thing that ‘showed up’ is what is most likely to be a birth mark on my liver. The problem is that the scan now has to be checked by some other specialist as part of normal protocol before I am allowed to go ahead with the hep c treatment.

Apparently this will take 2-3 weeks to happen and so the Doctor was starting to give off vibes that she didn’t think I should start the hep c treatment so close to me starting a new job. I am a teacher and it will be a very busy and stressful time for me when I start my new job in September and she seemed to think I would be better waiting until I was settled into the new job.

A secondary reason for her perhaps wanting to put me off a bit more is because after Christmas the new drugs that have just been trialled and approved for public use are likely to be able for use here in the UK. Why this was never really mentioned previoulsy to me I am not sure. Maybe this was because before she was not sure what my genotype was and perhaps if it had been a good gentoype such as 2 or 3 then she would have been more encouraging me to go ahead with it, however it is now official I have the worst genotype to get rid of which is 1b.

The good news however is that the new treatments really do seem to improve the chances of achieveing a sustained virological response (SVR) for people with genotype 1, assuming of course that the patient is able to tolerate the treatment side effects and so on. The first quote is regarding the new drug Boceprivir and the second quote is regarding the other new drug Telaprevir which are to be used in conjunction with the conventional combination therapy of interferon and ribavirin:

“In all three treatment arms, PR consisted of peginterferon α-2b and ribavirin.
Among nonblacks, sustained virologic response (SVR) rates were significantly higher in the boceprevir groups (67%–68%) than in the control group (40%). Blacks had lower SVR rates in all three groups, but B+PR still outperformed PR in this population; SVR rates were 42% in the RGT group, 53% in the fixed-duration group, and 23% among controls. Overall, 44% of patients in the RGT group had undetectable HCV RNA from week 8 to week 24 and therefore received shorter-duration therapy (28 weeks total).”

“SVR rates were 69% and 75% in the 8- and 12-week telaprevir groups, compared with 44% in the control group.⁵ Approximately 58% of patients who received telaprevir achieved eRVR and were eligible for shorter treatment (24 weeks total).”

– hepatitiscnewdrugs.blogspot.com: Source

So for myself I take away two key points from that:

a) The chances of me attaining SVR increase from around 45% without the new drugs to near as damn it 70% with either of the new drugs!

b) With either of the new drugs there is around a 50% chance of being able to have a shorter duration of hepatitis c treatment aswell which is awesome news.

So, I guess rather than rushing into my treatment now it does make sense for me to wait until next year when I am on top of my new job and the new drugs are available to be used. I was looking forward to getting started on the treatment and was a bit annoyed after I found out I had had a wasted journey to the hospital today, but already I am feeling better about delaying it somewhat.

I still have an appointment booked for two weeks time in which I can have my first injection if I change my mind. Like I said it took me a while to calm down after realising I wasn’t going to be starting treatment today so it took me a while to think it through properly which is why I left the option open. I will still keep the appointment however as they should tell me for sure what that liver birthmark thing is all about but apparently it is nothing to worry about.

So to summarise then: My current ALT is 135 with a viral load of 1 million (up from 600,000). I have no scar tissue, fibrosis, cirrohsis or anything like that and the doc said that I can afford to wait and reading between the lines with my genotype being 1b I think she wants me to wait so I can benefit from the new drugs coming out soon.

I guess I’ll take it easy on the blog updates from now on as there may not be much else to report at least until the next appointment. In the meantime I will be ‘watchfully waiting’ which is the lovely little term the doctor likes to use for trying to live a healthy life by not doing anything to damaging to your liver whilst you wait for the hep c treatment to start…how nice! Take care guys 🙂

OK, so it’s fair to say that starting my hep C treatment is towards the very forefront of my mind at the moment. I feel a strange mixture of nerves, apprehension, relief, dread and also excitement! I really do want to nail this sucker, so the sooner I get started the better as far as I am concerned really.

I have an appointment at 10 am tomorrow to have my first injection. I am curious in a way to find out what all the fuss is about and to get started at last. I have not told anyone about my condition or that I am starting treatment…accept for the entire blogosphere of course, so I guess I have to decide who I am going to tell and when at some point also.

I know I should probably have done this by now but I wanted some more answers from the Doctor tomorrow so I am certain about a few more things before I start to tell (select) people, or maybe that is just me putting off a task I am really not looking forward to. Telling people that really care about me that I have a potentially serious/life threatening condition. It is not a prospect I relish even though I know I will probably need their help and support at some point.

I am also darkly curious to know:

What side effects will I have if any? Will I just breeze throgh the treatment? (20% have no symptoms).

Will I be able to exercise: lift weights, go cycling, go hiking and go swimming as I usually like to do?

Will my friends and family notice?

Will it affect my ability to work? I start a new job in September and do not really have to work until then if I don’t want to. However if I am feeling OK, I would like to get a job to keep the money coming in, in the meantime, will I be strong enough to do this?

Will I have enough energy even to continue to blog regularly?

Will my hair fall out…please no…I love my lovely golden locks 🙂

Will I remember to take my meds on time?

Will I lose my muscle bulk?

Will I achieve a rapid virological response (RVR)?

Will my ALT normalise?

And of course the big one… will I achieve a sustained virological response and be ‘cured’ of this disease for good!? I guess these are all normal questions and worries and things will likely work out much better than I had though they would (touch wood), still it’s good to get it off my chest.

It all kicks off at 10 am tomorrow when at the very least I should find out the genotype which I have and the results of my ultra sound scan. I have been having fairly regular aches around the liver region for a while now so I wonder if this will be reflected in the ultra sound scan? And I am hoping for good news regarding the genotype. It could potentially make life much easier if I had a genotype 2, 3 or 6. I am hoping for a 3 or a 6 as these are the most common hepatitis genotypes found in Thailand.

Anyway, some of these questions at least will be answered tomorrow and I should be having my first hep C treatment injection, fingers crossed for me please 🙂

I have just been drifting through the internet again looking for any information I can get on how to improve my chances of clearing my chronic Hepatitis C infection. I am due to start treatment tomorrow all being well and I am also due to be finding out which genotype I have and the results of an ultrasound scan I had done on my liver a couple of weeks ago. So all in all it is a big day for me tomorrow. I guess I’ll be blogging about all of those things tomorrow but for now I just wanna say how cool I think this little tip is…

It is now thought that drinking coffee each day during Hep C treatment can double the chances of achieving a sustained virological response (SVR). SVR basically amounts to a cure as it means that after 72 weeks from the beginning of treatment (even if treatment ended after 3 months) the body has undetectable levels of HCV which basically amounts to a cure.

The bases for this thinking is a recent study by Neal D Freedman et al regarding the association of coffee consumption and response rates to treatment of inviduals undergoing hep C treatment with Intereferon and Ribivirin which concludes:

“High-level consumption of coffee (more than 3 cups per day) is an independent predictor of improved virologic response to peginterferon plus ribavirin in patients with hepatitis C.”

The excellent article here entitled Coffee Improves Response To Hepatitis C Treatment breaks the results down into more detail. The fascinating bottom line seems to be that consumption of 3 cups of coffee (how much is a cup?) or more meant that SVR was twice as likely to be produced. It seems to be that there is something in coffee that facilitates the effectiveness of the interferon and ribivirin combination therapy. What exactly the ‘magic’ ingredient is is not clear, as the article points out there are over 1,000 different compounds in coffee so narrowing it down to the specific ingredient would take a great deal of further study.

Even for those without Hep C, consumption of coffee appears to have significant protective effects over the health of the Liver which of course is even more vital for those who like a drink:

“People drinking one cup of coffee per day were, on average, 20% less likely to develop alcoholic cirrhosis. For people drinking two or three cups the reduction was 40%, and for those drinking four or more cups of coffee a day the reduction in risk was 80%.” – newscientist.com

But for me right now. I’m pleased to be able to potentially boost my chances of attaining SVR via including the consumption of 3 or more cups of coffee per day in my daily routine!

So after I realised I had Hepatitis C, naturally the first thing I did was to go away and get myself clued up about what I was supposed to do to tackle this disease, thing, condition… whatever it was. What I really wanted to know is what I could immediately start doing in order to prevent damage/further damage to my liver.

Due to having had initial symptoms of jaundiced skin in the past I was able to put an approximate time scale on my infection. At the time of writing I reckon I have had it for between 3-4 years. This of course means that my body did not clear the virus in the 6-12 months after the inital infection. These initial months of infection are known as the acute phase.

During the acute phase of infection approximately 20% of people are able to clear the hep c virus without treatment clearly I was unable to do so. My Hepatitis C infection has now developed into a chronic condition i.e. I cannot clear it myself and it is likely to be a long term disease/condition if I do not have successful Hep C treatment.

For those people lucky enough to discover they have it during the acute phase and can start hep c treatment straightaway, the chances of the treatment being successful are a great deal higher than during the chronic stage.

“Many studies have demonstrated effectiveness in acute hepatitis C using interferon alpha-2b (INF a-2b). Success with this product have ranged anywhere from 75 to 98 percent sustained viro­logic response. The study that demonstrated the most effec­tive virologic response in patients treated the acute hepatitis C group for a total of 24 weeks.” – Source

Anyway back to my original question: What could I start doing immediately to prevent damage/further damage to my liver?

After visiting a whole host of different web-sites it became apparent that one of the best things to do to combat the hepatitis C virus is to not drink alcohol. This was not a piece of advice I really wanted to hear. Hepatitic C is a virus that affects the Liver and anything that places extra strain on the liver should therefore be avoided.

It seems that quite a number of scientific studies have proved beyond doubt that alcohol consumption speeds up the progression of the disease, Larry, Siu (2009) in the scientific study report Hepatitis C And Alcohol reports that:

“Numerous studies have demonstrated that alcohol consumption in varied quantities can enhance viral replication, increase oxidative stress, worsen cytotoxicity, and impair immune response. Consequently, alcohol abuse appears to reduce both sensitivity to interferon and adherence to treatment.”

Any thoughts of trying to wriggle out of this were blown out of the water by that little quote. It seems pretty clear that drinking alcohol is pretty much a no no as far as hep c goes. That is not to say I am going to suddenly drop dead if I touch a drop of course. Prior to being diagnosed I was happily going out on the lash fairly regularly.

Previously, being an expat living in Asia (alternating mainly between Japan and Thailand) aswell as doing a fair amount of backpacking around the region; drinking beer and socialising were pretty high on the agenda, as it is of course a great way to meet other expats and local people alike. This meant that I was regularly drinking a few pints a week (probably more) and I never felt any ill affects from this…. apart from hangovers of course 🙂

After realising that I should really quit drinking I went cold turkey and stopped for two months, no alcohol at all, a zero tolerance policy and I stopped drinking completely. I was dry for two months before I started to get a little bored. Thoughts like ‘Surely a few beers isn’t going to hurt me’ and ‘It never did me any harm before I knew so why would should I let it bother me now!?’.

Slowly bit by bit each week I started drinking again. Just the odd one here and there at first, but gradually I was falling back into the same old routine. I knew it was happening but when something is just a habbit…and one you enjoy it is difficult to break (especially when it involves an addictive drug like alcohol).

Incidentally, in the two months when I quit drinkning my ALT levels actually went up!

I guess in the back of my mind I knew I would be returning to the UK at the end of the contract that I had been working on and I think sub-consciously I had decided that I would drink alcohol until I returned to the UK and then quit after that. Of course, I didn’t go mad with the beer during the remainder of my contract but I did have a few with my mates.

As ever, I tried to look upon the challenge of quitting alcohol as a positive thing and focussed on the myriad of health beneifts not just to my liver of stopping drinking. However I only really managed to quit for two reasons:

a) I had a massive change in the people I was hanging around with. Going back to the UK meant I had the ideal opportunity to change my routines and habits away from those which included alcohol.

b) I read a book called: Easy Way To Control Alcohol by Allen Carr. This book undid years of programming that the advertising world and popular culture had done to my brain regarding alcohol and rewired it so that I thought completely differently about the subject of alcohol consumption. Reading that book just once was enough for me to quit permanently, seriously if you want to quit, even if you have tried and failed before like I had that book will do the trick!

The first few weeks after stopping drinking I had the occassional craving for the a few beers but I just thought about what the book said and it was never a problem. After a month or two the craving completely went away and alcohol now has zero hold over me anymore. I have not had a drink for 11 months now and feel this can really only help with my hep c treatment and will certainly prevent me from doing more needless damage to my liver.

And I have recently found that some of the non-alcoholic beers on sale these days actually taste very similar to the real thing…so all is not lost!

So, if you read the last post then you’ll know how I discovered I had Hepatitis C, now I’d like to share with you how I think I got Hepatitis C.

Here in the UK, it seems that Hepatitis C is something pretty much reserved for intravenous drug users (IDUs) and people who have had blood transfusions prior to improved blood screening practises circa 1990. The UK Health Protection Agency in 2009 in their report entitled Hepatitis C in the UK had this to say:

“Estimates suggest that around 142,000 individuals aged 15-59 years were living with chronic hepatitis C (HCV) infection in England and Wales in 2003. In all countries the major risk factor for infection is injecting drug use.”

In the US the Centre For Disease Prevention reports:

“An estimated 3.2 million persons in the United States have chronic Hepatitis C virus infection. Most people do not know they are infected because they don’t look or feel sick. Some people are at increased risk for Hepatitis C, including current injection drug users (currently the most common way Hepatitis C virus is spread in the United States).”

So it would seem apparent that the greatest risk of getting Hepatitis C would be injecting drugs. For me, I have never (and would never) do this so I ruled this option out straightaway and also I have never had the need to have a blood transfusion.

After I had collected the results letter that showed I was Hep C positive I was of course worried and at this point and decided I ought to splash some cash and speak to someone properly qualified about this. As I was living in Thailand, where quality healthcare is really only available privately, I went to the best hospital in town to speak to the internationally qualified doctors there. I explained that I thought I had Hepatitis C to the Doctor whom then asked me three questions quite bluntly:

“Have you ever injected drugs?”

“Have you ever had a blood tranfusion?”

“Do you have any tatoos or piercings?”

I answered negatively to all of these. He then asked me if I was gay (caught me off guard a little), which I am not. He then thought about this for a little longer and said:

“It is extremely unlikely for you to have Hepatitis C then!”

I then showed him the results slip which I had gotten from a different (cheaper) hospital which set him straight. We then went through various areas of my past medical history until we arrived at my dental history…. and then the penny began to drop for me.

Throughout my life I have suffered from poor dental health. Probably owing to my own carelessness over the years and this has led to me having to have many dental appointments over the years in a variety of private health clinics around the world as I have lived in a few different countries.

Whilst the UK has a decent health dental health care system I had unfortunately lost my place in it due to travelling abroad so much. This meant it had often been difficult for me to find a dental surgery in the UK with spare places open for me to get the required work that I needed at various points in time (we have had shortage of qualified dentists over recent years). I remember in 2007 needing a LOT of work doing on my teeth – I am talking extensive root canal treatment on multiple teeth/parts of the gum and I was unable to get this done quickly enough in the UK.

What I decided to do was to have the work done in Thailand where I had had work done before on my teeth satisfactorily and where I was headed anyway. I used to use a series of different private dental clinics located in the main tourist areas of Bangkok and I do remember having concerns about the conditons/procedures in the clinic(s) from time to time.

One clinic I used for example appeared much more lax in comparison to how a UK dental surgery would be run. I say this because on one appointment the Dentist was actually out shopping and I was allowed to wait inside the dentist’s surgery room waiting (I was a regular!) and looking around I could see the equipment wasn’t being looked after and put away in the same manner as it would be in the UK. Equipment was left out, just sitting in position as though it had just been used and was just about to be used again. I just got the impression that things perhaps weren’t really up to standard there but why would they be!? Thailand is a developing country dumbass . I imagine dental clinics are far less regulated (and safe) when compared to developed countries….

Why didn’t I walk away at the time? Well, my teeth bloody hurt for starters! I was very ignorant and knew nothing of the potential underlying dangers of this and I just figured that the Dentist must know what they are doing. Like I said, I have had a lot of root canal treatment done in places such as this and now I believe that this is the most likely source of my Hepatitis C infection…. I should have been far more vigilant!

“If you have a blood transfusion or medical or dental treatment overseas where medical equipment is not sterilised properly, you may become infected with hepatitis C. The virus can survive in traces of blood left on equipment.” – NHS

The Hepatitis C virus can apparently stay alive on medical equipment for 4 days and it would have only taken one Hep C positive patient before me to have left a spec of blood on a piece of equipment which was then used to treat me.

The current liver sepcialist that I am seeing in the UK is adamant this is where I picked up the infection saying that:

“In Asia medical equipment that is not sterile is the biggest transmitter of Hepatitis C.”

The UK NHS web-site also clearly declares that having any type of medical procdeure done abroad puts you at an increased risk and also specifically mentions the risk from dental treatment abroad for transmitting hep C.

Another possible way of getting hepatitis C is sexually. The chances of this happening seem to be very low. The Australian government backed web-site concerning the disease doesn’t even list it as a risk factor, although they do say:

“Transmission of hepatitis C through sex is unlikely, and hepatitis C is not classified as a sexually transmissible infection (STI).”

Most other government health agencies do list unprotected sex as a risk factor for contracting hep C but go onto say that it is extremely unlikely to be gotten this way. It is commonly noted though that gay male sex is much more likely to result in transmission of hep c than heterosexual sex, hence the Doctor’s earlier question I presume.

There is a small percentage of Hepatitis C cases where no significant risk factors seem to exist and some of the more unlikely but possible ways of getting hep c are:

Through sharing razors, toothbrushes and other personal items. Any trace of blood that comes into contact with broken skin could potentially pass on the virus. It is believed that some cases result from blood traces from hairdressers equipment – scissors, combs and so on could all potentially break the skin and pass on traces of blood. It should be noted that this is of course very rare. A mother could pass on hepatitis c to her child although the risk is thought to be as low as 5%.

As for me however, I really should have taken better care of myself and had the dental work done in the UK or at one of the more expensive hospitals at the very least, especially as I was in a developing country. Instead I have just gotta face the music and get on with my hep c treatment. I hope others do not make the same mistakes as me!

Oddly enough I am back in the UK right now and have just registered with a new dental clinic (I recently moved) to get started on some more treatment that I need doing – half of a tooth dropped out recently!

Anyway that’s all for now, I’m off to brush my teeth 🙂

OK, so here is my story about how I found out that I had Hepatitis C. Please bare with me whilst I regurgitate the full story. Looking back now, I know exactly when I got Hepatitis C, a friend at the place I was working at commented to me when I arrived to work one day:

“Hey buddy, are you OK, you look kinda yellow today.”

A strange comment I thought at the time. I did go to the bathroom and have a good look at myself in the mirror but to be perfectly honest I couldn’t really see any real yellowness and besides I was in a rush I had just arrived at work, felt fine and didn’t think anything more of it. I certainly had no idea I was displaying a classic albeit less common symptom of a recent Hepatitis C infection. Yellowing skin is just one possible symptom, many people display none although here are a few of the most common symptoms of Hep C to look out for. That was about three years ago now when I was working abroad in Asia – teaching English.

Now, I didn’t realise there was anything wrong with me until about a year and a half later when I went for a routine health check, as part of the health check which was required in order to apply for the visa I wanted to get to travel to Saudi Arabia for work. As part of the health check they checked my liver function and this is when it first came to my attention that my ALT (Alanine Trasnaminase) score was high. It was 95 when it should have been less than 40. The other liver function indicators were fine though; Alkaline Phosphatase (ALP), Aspartate Transaminase (AST) and Bilirubin levels.

If you do not know what ALT levels refer to like I didn’t at first then basically it is a measure of how inflamed the Liver is and an indicator as to how much damage may be occuring. The British Liver Trust explain this much better.

I did a quick bit of research and concluded that I must have just been having a few too many beers recently and that this had caused the elevated liver test. I figured that I would just quit drinking for a couple of months and that that would fix things. Remember, that as I was in Asia I was actually not getting Doctor’s advice as such, I was just picking up medical test results and doing the investigating myself online, yeah I know pretty dumb but discussing medical conditions with a Doctor can be expensive and not my idea of fun when English is their second language AND when they are on commission for what treatment/advice they dish out. God bless the NHS!

Anyway I went to do a repeat test of this ALT thing two long dry months later. To be honest being a perfectly healthy person normally, exercising a lot and generally taking pretty good care of my health I expected the ALT number to have dropped right back down to normal levels and for there to be no more cause for concern.

Surprisingly to me the ALT reading was exactly the same, 95. I couldn’t understand it, two months with no beer and nothing had changed! That is when I figured that this had the potential to be kind of serious but I still had no real ideas what the underlying problem was. So, I went away and hit google pretty hard for a couple of hours. I then returned to the hospital and asked for tests for Hepatitis A, B, C and HIV. These it seemed were the most likely reasons for continued elevated ALT scores from what I had read online and whilst I knew a little about HIV I can’t say I knew anything about Hepatitis other than it just sounded pretty bad.

So, like I said I was in Asia and the doctors just do what you ask of them, there was a bit of a language problem and this really prevented any in depth discussion or explanations. Yeah, of course there are hospitals in Asia with excellent English speaking Doctors, however you pay a premium for that and at the time I was on a pretty tight budget if you know what I mean!

So the nurse at the hospital took my blood, filled a test tube and told me the results would be ready in about an hour. That hour seemed like a very long time indeed. I walked around the nearby park about three times, had a coffee at a Black Canyon and tried to remain calm but I couldn’t help but let my thoughts run away with me.

I managed to leave it about an hour and half before walking back to the hospital and asking at reception for my test results back (a bit of a mission on its own when you don’t speak the local language!). The results had been placed in a filing cabinet in a kind of sealed envelope with perforated edges of the type you normally get tax information in. The receptionist handed it to me then left me to it.

I turned my back to the counter heart thumping and walked towards the exit. I started tearing off the sealed edges and pealing open the results. And so it was whilst walking along a sidewalk outside the hospital that I read the ‘positive’ that was next to the Hepatitis C heading. There was also another ‘positive’ next to the Hepatitis A heading aswell.

Can’t say I felt to great after reading that, a kind of hollow sick feeling entered the stomach – and the only thought that entered my head was what the hell is this thing!

But that is in essence how I discovered that I have Hepatitis C and the reason for this blog. As Anita Roddick (Article linked well worth a read) a famous UK businesswoman who has sadly passed away now (from issues not related to Hepatitis C) was famously quoted as referring to her Hep C positive conditions as:

“A bit of a bummer”

Indeed… I concurr!

More on how I believe I actually transmitted the Hepatitis C liver disease later, probably in the next post.