Q Martin I have eaten a lot of shellfish to be healthy I did not know if this is true, I read the following on your website - "Get vaccinated against Hepatitis A and B. One liver virus at a time is plenty, and a second one could be fatal. Your doctor should advise this, but remind him if he doesn't. These vaccines do not always 'take' first time, so make sure that you are tested to prove that they have. It would be wise not to eat raw fish, particularly shellfish until you are sure that you are fully protected"
via e-mail
A It can be a bit risky! There are two risk areas. Firstly there is the prospect of getting Hepatitis A from shellfish, which is why the advice to get vaccinated before treatment. The other risk is where treatment depresses the immune system and leaves you vulnerable to bacterial infection such as listeria. Overall the chances are probably remote, but like all these things if you can avoid the risk, why not!
Martin
---------------------------------------------------------------------------------------------------------------------------------
Q Has anyone complained of neurological problems after treatment, I am going to see neurologist for balance and numbing of foot nuitrient deficiency already ruled out.
A It is certainly very rare, and may not be treatment related. Certainly it is a case for a neurologist.
Best wishes,
Martin
---------------------------------------------------------------------------------------------------------------------------------
Q Good Afternoon all - I have just spent 45 minutes listening to the Radio 4 piece. After the laughter, tears and memories of my own efforts attempting to clear the virus I just wanted to thank all for their efforts to promote the HCV cause and to encourage anyone who thinks they are at risk to get test asap. I have had HCV for over 30 years and take it from me the quicker treatment is undertaken the greater the likelihood that it can be successfully treated.
Sally
A I know, I found the play very moving too, and very inspiring. I am a nurse who helps people through their treatment and I am constantly surprised by how strong people are and how determined they can be to get themselves thorough treatment. I have also learnt how important it is for people who are on treatment to communitate with others on treatment. Us Dr's and nurses have never taken Pegylated Interferon and Ribavarin, we can only advise. Its people who have been through it who really have the knowledge!
Siobhan
---------------------------------------------------------------------------------------------------------------------------------
Q Hello Martin and Siobhan, Its excellent to hear patients' experiences on the radio, I'm sure it will do a lot for raising awareness of the illness generally. As someone going through the period following the end of treatment and having a 'virus undetectable' result, I feel a great affinity to all Hep C patients. Lets hope more and more will go on to get effective treatment soon!
Best wishes Phil
A Thanks, Phil! I was very impressed. Anne and Jonathan at the BBC did an excellent job. Hopefully it will encourage people to get tested and on treatment. I think that they handled a difficult subject extremely well, and got the balance right. Martin
A Hello Phil Yes the Play was great wasn't it! Really moving. Isn't it great that the BBC made it. Wonder if it can be used somehow for Hepatitis C Day in October? Perhaps a local amatuer dramatic company could do it? worth a thought.
Siobhan
--------------------------------------------------------------------------------------------------------------------------------
Q During treatment everything can look perfect, you can have tests that show you're undetectable and yet you can still relapse. The virus has "hid somewhere". Where did it go? What quantities does it hide in? Why does it come back and how does it come back to almost exactly the same levels that it was in originally?
Via e-mail
A I don't know the answers to this. There are so many questions we don't know the answers to yet about hepatitis C. The questions are not even being asked. I will say that if a person relapses the hepatitis C never really went away. I always thought that this was because the machines that looked for the hepatitis C in the blood could not detect the low levels that are present. Martin tells me that in fact there are machines now in US that can detect to minute levels, so the virus must, as you say be hidden. WE NEED MORE RESEARCH!
Siobhan
--------------------------------------------------------------------------------------------------------------------------------
Q For people who have relapsed: What treatment will there be in the future? What's in the pipe line or round the corner and what is the time scale on it all? by e-mail.
A There are a lot in the pipeline. My personal favourite is VX950 from Vertex which is very promising. There are a lot of new treatments within about a year of each other on the path to general use, but the 'lag' is about 5 years to general US release, and probably at least another year to get any through NICE, so don't hold your breath!
Don't forget that relapsed cases can respond to the 'other' interferon to the original one.
Martin
A Again, I don't know the answer. It will take a long long time that is for sure. I would say that the important thing is to concentrate on your life today. STay healthy, stay happy. Live.
Siobhan
--------------------------------------------------------------------------------------------------------------------------------
Q Hi Martin, just listened to the radio 4 play. I was moved to tears as I re lived the blogs that I'd read during my own journey with HepC and treatment. Just 2 weeks after finishing, it was a timely reminder for me of how grateful I am for the support from the HepC blog team. THANKS xxx JayneC
AGlad you enjoyed it Jayne, and nice to hear from you. It stirred a few emotions here as well! Lets hope it does some good as well!
Best wishes,
Martin
--------------------------------------------------------------------------------------------------------------------------------
Q I have not been offered treatment a second time and in fact was told I couldn't have it and it wouldn't work. Why are some people offered treatment more than once? Are they being offered new treatments? How is it decided who can and can't have treatment a second or even third or fourth (as I heard in the play) time?
by e-mail.
A In my local hospital we only re-treat when there is a new treatment to re-treat with. For instance I have treated people with Standard Interferon then Standard Inferon plus Ribavarin then Peg plus Ribavarin. This is according to NICE which is followed by most PCT's in england.
Siobhan
--------------------------------------------------------------------------------------------------------------------------------
Q Hello Martin and Siobhan , It was strange to hear a play on Hep C, I had my treatment 10 yrs ago after 2 years of interferon 3 times a week,I was declared cured and carried on with my life, last year I had a health screening HIV and HCV, HIV was -ve but HCV was +ve, after the shock they told me that I will always be +ve even though I'm cured. So it will never leave me but I'm still lucky.
Rory
A The reason why you will always be 'positive' is that when you are exposed to the virus your body produces antibodies which stay with you for life. The simple screening test just detects these and gives a positive result. The real test for the virus is a PCR test, and that only reads positive if you actually have the virus.
Hope this helps clear the confusion!
Martin
-------------------------------------------------------------------------------------------------------------------------------
Q Thanks for the reply, Is it good practise to a PCR retest every few years or is once cured always cured.
Regards
A No, once you have a negative PCR at 6 months you are cured. Less than 1% relapse at this stage. Forget hepatitis C, get on with your life!
Siobhan
-------------------------------------------------------------------------------------------------------------------------------
Q I have had hep c for probably 30 years, diagnosed 12 years ago. I had a pcr recently which did not detect active virus. Not really sure what this means! Will I still regard myself as infectious and does this status change? Could undetectably low viral levels account for long feelings of unwellness? Good to know there is website/blog because unexpectedly stumbling upon play, it confirmed what I always feel ..that this is something one has in isolation and if you feel it is self induced! a form of judgement through which you are not entitled to talk about it far less expect understanding... I guess for this reason , it has been unacknowledged behind many years of depression and been a factor in making decisions.Kyra
A Hello Kyra
Good for you for getting in touch with the Hepatitis C Trust. Hep C is a lot to deal with on your own. Regarding the PCR test, if it was me I would want to be retested to check that this was correct. Just in case. If you are now negative after the second test, rejoice!
Kyra, why don't you phone the helpline? I reckon you could do with a chat with somebody about what you have been through/are going through. Remember every one on the phone lines has or has had Hepatitis C. 0870 200 1 200
Take care!
Siobhan
-------------------------------------------------------------------------------------------------------------------------------
Q Enjoyed the play this afternoon. I am very seriously contemplating treament. It would be for 48 weeks. Is there really no way at all of predicting who will have the more serious side effects - like fatigue?
A Hi Bathtime,
Glad you enjoyed the play! Sorry but at present there is no way of knowing in advance how well someone will tolerate treatment. Wouldn't life be easier if we could! Around 20% of patients have a really tough time, another 20% get virtually no side effects, and the rest are somewhere in between. By those odds you stand a very good chance of treatment being either easy, or at least tolerable. Certainly worth a long hard look!
Best wishes,
Martin
-------------------------------------------------------------------------------------------------------------------------------
Q I have heard of a treatment that was being tested, involving being prescribed small doses of interferon, that can be used to keep virus levels down and prevent HCC. What is the latest news for this treatment?
A Maintenance treatment is not normally available in the UK, but one or two maverick consultants have been known to bend the rules! It is normally treated as a delaying tactic rather than anything else just to buy time. Relapsers rather than non-responders are the usual candidates. Ideally you need to get the viral load low before interferon-only maintenance. I think Miles Keaton Andrew in the US is on it, and runs a blog! Worth a look, particularly if you like US humour.
Martin
-------------------------------------------------------------------------------------------------------------------------------
Q After 3 months of treatment I was feeling depressed I told my Consultant and told me with a very curt rebuff that there was no such thing as depression. So when I read on a leaflet about depression it sugestted that getting fit could be a way out, if you were still depressed at least you'll be fit it said. I used that quirky advice and it worked for me.
A Depression can be a big problem when people are on treatment. Excercise can be wonderfully helpful. Even a short walk every day if you are feeling tired and down can help lift your mood. I have a patient who goes bowling every week, or even a man who plays competitive cricket! As I say, people are amazing.
If you have a problem with depression you could ask your Consultant, nurse or GP for Excercise by Prescription, which is often free and very useful. For some people excercise won't be enough. Do speak to your nurse or Dr as sooon as you feel depressed, you may benefit from anti-depressants whilst you are on treatment.
Siobhan
Q Hello Martin and Siobhan. Thanks for your very helpfull advice, I'll now get back to life. The play was a good knowing that there were more people out there.
Thanks Rory
-------------------------------------------------------------------------------------------------------------------------------
Q Thanks for the hydrotherapy. Only had to hear Jeff Buckley to start the waterworks flowing. Whoever chose the soundtrack did a great job. I've had the virus (geno 1)for probably 30 years and am on waiting list for treatment. My daughter, who caught it from me in downward transmission, is in her 15th week and just had 12 week result of drop in viral load from OVER A MILLION to 600. I know this is not bad news considering how high her load was but not the result we obviously hoped for of being clear. And we've made joint decision that my starting treatment depends on her clearing it. She's tolerating it well - so well that she thought the play was a self indulgent waste of time - maybe a bit of denial but maybe just her way of handling it - she's only 22 and it's a lot to take at her age when, now, all she wants is to be "normal"...
Am really interested that you went to Pakistan, Shiobhan. I worked there (teaching)in 1977-9 and fell in love with the country and the people. Always dreamt that I'd go back there to work in education after my family were grown up but then fell apart as result of HCV diagnosis after years of chronic fatigue..now thinking, if given another chance more than anything would want to go back there,if only to gaze at the Hindu Kush again. The pics of people on your website were heart breaking and stirred loads of memories.
In fact, result of listening to this play is that I now feel like a sentimental old fool so better wipe away the tears and take the dog out for her walk..
Thanks to everyone who made play possible. And hope this is just first of many creative efforts to help destigmatise this horrible hep business. Polly
A Hello Polly
Good luck to you and your daughter. You are a very strong pair, and I really admire what you are going through, helping each other through the treatment. Hold on tight with the blood tests, it does look good. Stay Positive!!!!
Pakistan was incredible and very moving. There are so many people there with advanced hepatitis C it does not bear thinking about. The Pakistani people I met were so welcoming and so amazed that anybody had come from UK to find out about their pandemic. Its a very beautiful country, I got up as far as the Hunza Valley, must update my blog, stunning photo's.
Take care Polly and keep on fighting!
Siobhan
-------------------------------------------------------------------------------------------------------------------------------
Q Hi Martin I didn't catch every word of the play, but I don't think anyone mentioned riba rash. Apart from tiredness and exhaustion, this itchy rash is my greatest bugbear at present and is making me feel very negative about the whole treatment, as it makes me want to scratch violently the whole time, so I can't think of anything else. And if I then draw blood, I think like the person in the play who said when they withdrew the needle after an injection there was some blood and they thought ugh! I could infect anyone with this (was it you, Martin)? By the way, I am one third way through the year's combination treatment for genotype 1.
A Hello Angel I'm replying, if that's ok. Poor you. Its tough, you are 1/3 way through a very difficult treatment. And you are doing well. The rash sounds really difficult to manage, and very painful. The advice I would give is to use a plain emulsifying cream twice daily. There is one based on oats thats very good. Also there is a bath oil. You can get these prescribed by your doctor or nurse. Bascially, keep your skin very welll moisturised. Anti-histamine can be useful, especially at night, it might even help you sleep! Your blood isn't dangerous and nasty just because you have hepatitis C. Its very hard for your blood to get into somebody else.
Keep it up angel. You will get there. keep fighting!
Siobhan
-------------------------------------------------------------------------------------------------------------------------------
