WHAT ARE MY OPTIONS?
Q I was diagnosed last August, in fact my doctor rang me on holiday to tell me I had a disease that I had never heard off! Since then I have had numerous tests, blood, ultra sounds, CT scan, endoscopy and a few weeks ago a liver biopsy. I get my results back on the 7th of this month. So far the scans have shown that my liver is not enlarged, and although my blood tests show various readings I felt quite positive. I then spoke to my doctor about the treatment, which he was reluctant to agree to, although he did send me to another doctor who has a treatment programme running. They were happy for me to go ahead, and I knew what I was letting myself in for.
So I went back to my doctor who still advised against it as he said I had fibrosis (cirrhosis) of the liver and because my geno was type 1a the likelihood of a cure was very low.
So I'm now waiting for the results of the liver biopsy, not knowing what to expect, and if the cirrhosis is confirmed as I know it will be what my options are or indeed my prognosis will be.
My husband refuses to accept that I may eventually become worse as he thinks I look fine, so I have to keep my thoughts and fears to myself. I have also been surprised at some reactions that I have encountered, namely from the medical profession. Whilst having my endoscopy the nurse was almost scared to come near me. Such a shame when a person need reassurance. I'm 48 yrs old and the doctor thinks I have had this 28/ 0 yrs
A Im assuming that all the tests you have had so far have had relatively normal results (CT scan, endoscopy etc) which is reassuring, though it is the liver biopsy you are going for that will be the most reliable way of ascertaining the level of liver damage (fibrosis) and/or presence of cirrhosis, particularly in the early stages. However, many people can have relatively normal results for liver function tests etc but still have underlying liver damage.
Fibrosis is scarring of the liver caused by inflammation over a period of time. If left unchecked it can turn into cirrhosis but this would be dependent on how long you have had the virus as well as any lifestyle factors that may have accelerated any damage for example, drinking alcohol can add significantly to any damage caused by the virus.
Treatment for genotype 1a has a current success rate of around 50%. It is certainly worth seriously considering. If you clear the virus on treatment and you do not have cirrhosis, any fibrosis may to a lesser or greater degree reverse over a period of time plus you will no longer be infectious to others. The treatment for genotype 1a takes 48 weeks, however, you would be tested after 12 weeks to see if it is working if it is, it is certainly worth continuing on though an early good result does not always translate into a definite successful outcome. If it is not working at all after 12 weeks there is rarely a case for continuing, it appears that some people simply do not respond to the therapy at all.
However, doing treatment, even for a short period of time, can still be useful, even if you do not respond, as it gives your liver a time to rest a little from the virus and possibly even reverse some of the liver damage to a certain extent.
If you do find you have cirrhosis the success rates for treatment do go down from 50%, but it is by no means untreatable. You certainly qualify for treatment under NICE guidelines unless your cirrhosis is very advanced. If you have any problems please call our patient advocate, Adam, on 0207 0896220. It will be essential that you do not drink alcohol at all if you do have cirrhosis and certainly it is not recommended - even in small quantities - for anyone with hepatitis C. With a healthy lifestyle, cirrhosis is also generally slow to progress and you would be monitored regularly by your liver specialist. There is no cure for cirrhosis in itself. Options further down the line would include a liver transplant, however if the hepatitis C has not been cleared by treatment, it would also infect the new liver.
I am sorry to hear that your husband is not taking on board your status I do think it is difficult for our partners and friends to comprehend that we are unwell when often, people with hepatitis C do indeed look well and are often asymptomatic for many years. You may want to let him know about our support service for partners and friends on 020 7371 0081 (open Wednesday afternoons from 2 5pm or leave a message and Maren will call you back) or indeed to call our main helpline on 0870 200 1 200 (open Monday to Friday from 12 6 or till 7pm on Thursdays) which is run by our Helpline Manager Sam and a team of volunteers who all have hepatitis C and who will be happy to provide you or you husband with any support or information.
I am also sorry, though unfortunately not surprised, that you have come across some unsympathetic responses from nurses etc. This is one of the many issues that we at the Trust are keen to counter and this general attitude from both the public and the medical profession is something we are continually challenging. Awareness of this illness is low in both groups and when people are unsure they are often fearful because they are misinformed. However stigmatising patients in this way means that many other people are put off being tested for hepatitis C and those that know they have it feel unable to be open about their disease. S.May
GETTING A SECOND SHOT AT TREATMENT?
Q Do you think its possible to put an individual case to NICE and ask for a 2nd shot at treatment? Im asking this just in case my doctor used the excuse with me that NICE wont fund it.
A OK, first off NICE lay down guidelines that don't suggest re-treatment and the local Primary Care Trusts (collection of GP surgeries) who now have most of the NHS money and actually pay for treatment consequently refuse to fund, because they don't have to. If you can get your consultant to argue your case with the PCT then you have a chance. The trouble is that the reason NICE don't recommend it is that the chances of success are considered too low. We have just tried to sort something out for a patient but without success. PCT's are mostly very strapped for cash. C.Gore
WORRIED ABOUT FINAL PCR TEST
Q Hi, I was treated with peg and ribavirin last year. I responded early and my ALTs were great - they went down to 12 and stayed that way until I suffered a massive bout of depression, it hit me so hard I had missed my meds a few times and 1 night I really went into a rage and got really drunk. I dont normally drink and I still dont now. Anyway my ALT shot up to 51 and went back down to 24 before I finished treatment. I suffered with depression for months after treatment and it was a really trying time for me. What worries me is that I messed up at the end of treatment. My final PCR is in 2 weeks time, I didnt have one 3 months post as my hospital doesnt do that now. I really feel that if I have relapsed its because I messed my treatment up. Do you think that my doctor would be able to make the decision to treat me again with the same meds if this was the case? I am 26 and just before treatment gave birth to a baby girl who was infected at birth so I am desperate to clear this. Do you know of any cases of patients doing the same meds twice?
A If its any help, I'm on my third course of treatment now, but the previous ones were different.
I would guess that your current treatment still stands a decent chance of having been successful, so hang on for your results before you start getting too worried. Martin Bolton
Q I dont feel very optimistic about still being negative. I dont think that will be the case - that is why I am wondering if anyone has been treated twice with peg + rib?
A I've had monotherapy, PegIntron+ribavirin, and am currently on Pegasys+Copegus. I know of several that have cleared at the third attempt, and one at a fourth. It is not impossible to get re-treated, but it may be a bit of a battle depending on the situation in your area.
Are you genotype 2? MartinB
Q No I am Geno 1a.
A Me too (Geno 1). I would still rate your chances of being clear, but you could always press for re-treatment with the other type of interferon if all else fails. MartinB
Q Whats the other type? I thought they only used this one now
A The two common types are PegIntron and Pegasys. One is Pegylated Interferon 2A and the other is 2B. They are made by Shering-Plough and Roche. Although there is normally not much to choose between them, occasionally one works in situations where the other doesn't, so it still leaves some treatment options open, should you need them. In my own case, PegIntron did not work, but Pegasys is working and I've just got an 'undetectable' at 20 weeks.MartinB
Q Thats great news for you Martin I hope this one works for you. I found treatment was really tough but Id do it again and again to get rid of this.
AWARENESS
Q How effective do you think the International Awareness Day will be, and are you planning any other events?
A It's hard to know how effective it'll be but I'm doing fairly non stop interviews today and tomorrow so I hope we'll at least get a lot of media coverage. Whether that translates into more government action is far from certain.
We do have some more things in the pipeline but not until the New Year. I don't want to go into details yet because nothing's finalised but it seems clear to me that the UK as a whole is currently not succeeding in raising awareness to the level that will make any really significant dent in the number of undiagnosed. If the government won't do more, we'll have to. C.Gore
Q The government seems to be doing its best to ignore the problem as usual. If we are anything like the rest of Europe with an infection rate of 1.7%, then it means that we will have around 1 million cases, and not the 200,000 that they predict.
A Absolutely. I don't think we've got as high a prevalence as some bits of Europe, partly because of the pretty effective HIV awareness campaign in the 1980s. But I'm also fairly sure it's a lot more than 200,000 people (0.4%). Our best estimate is around 500,000. At the very least that means the government should be doing more than twice as much. C.Gore
Q Hi, what ideas do you have about how we can get hep C into the public eye in a way that doesn't frighten people into inaction?
A It's a difficult one. If we play it down, nobody will bother to go get tested. If we make it too scary, people may shy away from getting tested. What we're trying to do is emphasise how serious the consequences can be for people if they are undiagnosed but also how much can be done (treatment, lifestyle changes etc) once you've been diagnosed. In other words it's what you don't know that can kill you. C.Gore
Q Yes it can be difficult to get that balance. I also wondered about the destigmatisation of hep c. I notice that the first method of transmission mentioned continues to be drug use, and we know from primacy effect research that this is what is likely to stick in peoples minds. And the title 'face it' doesn't really help! Do you have any plans to think about how publicity goes out, to take the emphasis off hep c as a drug users condition and allow more people to talk openly about this disease?
A Indeed we do. We're going to concentrate on highlighting as many of the possible transmission routes even if some of them are very unusual so that drug use gets lost amongst so many routes. The problem with this of course is that we don't want everyone who's ever had a tattoo to start worrying. But I don't see any other way. C.Gore
Q What happened to live chat with Charles Gore?
A I've just replied to someone else that I'm really sorry - the phone is ringing off the hook today with journalists because of a report we're releasing tomorrow comparing the UK with 4 other EU countries and it's generated much more press than expected. So I'm alternating between you guys and giving interviews, both equally important. C.Gore
Q Ok, you're forgiven
A Thank you. I'm so frazzled I don't know what I'm doing - I've been dealing with the press since 9 this morning and have to shoot off in a minute to do something for Radio 1. C.Gore
