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Liver Nurse Consultant Angela Narbey 2006

Is there a link between alcohol consumption and relapse post treatment?
Q Hi, I'm not able to attend the live chat, but would be grateful if you could post this question for me.
In your experience, have you seen any instances of HCV (geno 1) recurrence following undetectable results at three and six months post treatment tests (where re-infection via drug use or sexual transmission can be ruled out) but alcohol has been used at a level above 'safe' drinking limits?
Many thanks ,Mags

A I have unfortunately had one patient who drank quite heavily following a 6 month negative RNA who was then found to be positive. I do think that this is rare, and the person concerned is abstinent now. Interestingly, her post treatment biopsy (she asked for one, we didn't require one) was much improved on her pre treatment one. Her inflammation score was 6/18 and fibrosis 4/6 pre treatment, to 0/18 and 2/6 following treatment (on the HAI scale). At this time, she has decided she does not want re-treatment and is on follow up observations. She is the only person I have looked after that this has happened to in my experience. A Narbey

Geno 1. failed treatment twice now offered maintenance or double dose therapy
Q I live overseas at the moment so wont be able to participate. However I do have what I guess is a common question. I have genotype 1 if memory serves - anyway the most intractable variety! I have done two full combination therapy treatments, one with the Schering Plough and one with the Roche interferon. Neither worked. I have now been offered either long term "maintenance treatment or a further treatment with a "double dose". Frankly I found managing interferon pretty difficult and am reluctant to go through it again given the fact I failed to respond twice.
Is there something new in the pipeline which is worth waiting for? Are either of these two alternatives really credible? I have to work and even a normal dose of interferon makes that quite difficult. Many thanks and best regards. Charlie

A Although there are current trials for the newer medication, VX950 (currently at phase II in Europe and the UK), these use treatment naive individuals only at present. I'm not sure where you are based at present, but in Europe, the trial is known as PROVE 2. There is talk of starting phase IIb trials in the USA on non-responders, though not in Europe as yet.
I think that you would have to weigh up with your clinician how progressed your liver disease is as to whether you should be on a maintenance dose. I have not used a double dose on anyone as yet, though I have used a reduced dose whilst awaiting transplant assessment. This is also dependant on where you are treated - UK or another country. A.Narbey

Just started treatment and ALT levels fluctuating is this a problem?
Q One of the deciding factors for me taking the treatment was that if for nothing else then my liver would be given a rest from the virus whilst I was being treated. I am on 48 weeks and have so far done 4 jabs. My bloods tests from the first 3 weeks have shown a starting point of 183 ALT which immediately went down to 148 after a week but then went up to 357 followed by 248 at the last count. By my reckoning this is not much of a rest? Asking around I am told by the hospital and Hep C chat lines that I should not worry about it - so I am trying not to but I dont understand why I shouldnt worry - no one told me before I started that for the first few weeks, my AFTs would rocket! Any thoughts?

A To reassure you - I have seen this happen with many patients, especially at the time that you describe. As your immune system becomes more active, this may result in an increase in activity in the liver and the climb in ALT. Hopefully to reassure you further, in my experience, as long as your bloods overall are steady and you are tolerating treatment - as far as you are able to - this is not a bad sign. I do see many patients who become very worried about this, so you are not alone. My advice is to continue on and you may find after this initial spike in ALT, it may settle down to what you - and your clinician - feels is a more acceptable level. The proof of the medications working is viral load measurement, rather than ALT, so keep the dosing up and wait for that first viral load measurement. good luc. A Narbey.

On treatment with very bad side effects and no support help!
Q Sorry that I cannot make the live chat but I am too ill. I am on treatment for hep c and it is the worst experience of my life. I often feel depressed, have thought of suicide a couple of times, cannot take anti depressants, severe insomnia, rashes and sores over my face and private parts, I have manic episodes and feel altogether insane plus the usual fatigue. Please take me seriously, this is the only treatment on offer and I have no other choice but to see it through.

I am 15 years clean of any drugs including tobacco and coffee. I have blood tests that get lost or I have to go back yet again as they tested for the wrong things. This is gp and hospital. I feel unsupported by society and my only support from the hospital is to attend a group, which is full of drug users, or in early recovery I really do not want to go back to that scene.

I was told of side effects but not warned that they could be so severe. I think more awareness needs to happen and the general public and family and employers need to be more informed about what to do if they know someone on this treatment and how to help them properly because no one seems to know. I dont mean to rant but it is a nightmare!! Thanks for reading.
Jules

A All the side effects you describe are unfortunately well documented, but this doesn't help when you feel at your lowest, I know. I would advise you to contact the helpline here whenever you want - even if it just to have a moan - as many at the helpline have similar experiences to your own as they have gone through treatment, they really understand what you're going through. 0870 200 1200 is the number to call. Do you have a nurse looking after you through your treatment? They should be ready to refer for psychological help for your depression and mood swings, which can be very helpful. They should also be able to manage your skin problems - either with good advice - emollients, etc, or by referring you to a dermatology clinician. Things like timing your evening ribavirin dose so that it is not after 6.30pm helps with insomnia and lavender oil (no more than two drops as it is a stimulant in larger quantities) on your pillow may help. An emollient (unperfumed moisturiser) should be used about twice as often as you think you need it on your skin. Do remember that although you are depressed, it is not you - it IS the drug. This will pass. I'm sorry that you are feeling so unwell and hope some of the tips help. If you want to email me direct for individual questions, I am livernurse@mac.com.

Geno 3/failed treatment Do low ALT levels equal less scarring?
Q I have Hep C genotype 3a and also I am an insulin dependant diabetic, I have had the peg interferon alpha/ribavirin which unfortunately was not successful. Through diet and exercise since 2003 when my inflammation was 7/18 and Fibrosis Ishak 4/6. December 2005 ALT 89, June this year my ALT 60, GGT 92. My question is - if I keep my ALT levels down will the inflammation and infection still scar my liver? As a keen sportsman (cyclist averaging 200 miles per week) will exercise have any detrimental effect? Many thanks for your help. Kind Regards
Mark

A A better indicator of inflammatory activity in the liver is viral load and liver biopsy, but you sound like you are doing all you can to keep yourself as well as possible and I certainly would encourage you to keep up your sports activities. ALT is one of only many indicators, so it is not wise to look at this in isolation, or any of the blood test results in fact. This varies very much and it would need monitoring, over a 12 month periods for example, to get some sort of picture of what the average ALT is.

Geno 3 relapser feeling depressed should I take anti-depressants?
Q I have tried several times to clear the virus (geno 3 with cirrhosis age 52) but am a relapser. I know I must wait for new treatments to come along (which may be initially for geno 1) but have found myself getting very depressed now I have the virus back plus osteoporosis, general aches pains, extreme fatigue etc. When I was on the treatment (on and off for 5 years) I felt I had a goal and also hope i.e. ridding myself of the virus, but now I sometimes feel as if I am just waiting for my liver to fail or to get cancer and cannot see a future. Would you recommend anti-depressants? I cannot make up my mind if I am depressed or just facing the truth. Would they put an extra and unnecessary strain on my liver do you think, would they even work if my reaction to treatment failure is a rational one?

Also I have compensated but established cirrhosis with no varices or ascites I would like to ask if in her experience cirrhosis always progresses if the virus is still active. Many thanks,
Annie

A I'm wondering whether you are in a programme where you are screened every few months with regards to how your liver is coping - this usually involves blood tests, an ultrasound and perhaps an endoscopy on a regular basis. This will pre-empt any problems, and also give you the opportunity to talk through the issues you have. Though I haven't met you, it doesn't sound like you need anti-depressants as much as support from your clinician/nurse and a plan of care whilst you are waiting for new treatments.

You may want to also call the helpline for support and to answer questions as they come up. I would be interested to know if you had 48 weeks on treatment, or the 24 indicated by genotype. Either way, the interferon will have at least 'damped down' the inflammation for the duration of treatment and for some time after.

R Thanks for that - yes I have an excellent consultant although have to travel from Norfolk to London to see him, and am screened as you say, but the last failed treatment is relatively recent. I have done 6 months non-peg, 6 months peg schering, 6 months peg roche and then a go at 48 weeks (all with riba) when my virus returned (albeit very low level) at 9th month. It always disappeared on the 6 month regime only to reappear a few months later - seems the same happens when I am on treatment or off.

Thanks a lot - I think you are right, what I need most is support/plan 'what to do while waiting for new treatments to come along'! Maybe I am one of those people who need to feel they are doing something rather than just living day to day which is what I am trying (rather unsuccessfully) to do.

Difficulty with sleeping is it because I have cirrhosis?
Q I have heard that people with cirrhosis can experience reversal in their sleeping patterns i.e. easy to sleep in the day difficult to get proper sleep at night. I have noticed that I wake up at 4 am - that is if I manage to get to sleep in the first place. During the day I am exhausted and fall asleep for an hour or so at about 3 or 4 in the afternoon, I cannot help this. My GP says that cirrhosis does not affect sleeping patterns but I have been desperate enough to use sleeping pills (temazepam) in the past. They do not like to prescribe these and I am aware part of the reason is the erratic processing by the liver of such a drug, but also that the government has issued prohibitions on GPs - What can I do about getting some good rest without which I am even more wretched in the day than with my active chronic hep C? PLEASE (respectfully) don't suggest milky drinks and walks before bedtime as I am far too bad for these things which may work on people with no severe underlying health problems but are no good for me.

A As the action of taking Temazepam as a hypnotic will help you get to get to sleep, but not keep you asleep, it doesn't sound like it would help in your case. Perhaps a new pattern of having a scheduled nap in the afternoon and then going to bed at the same time will help. This may mean that you feel you get enough sleep overall. This is a common problem, but not necessarily with people who are cirrhotic. There are other sleeping medications and aids you could use, but I would again discuss these with your doctor (not Nytol or valerian)

R Thanks, sounds like good advice - I had better stop taking valerian then and see doc!


Just starting treatment any advice?
Q I am starting treatment today and will be taking my first injection in a few hours. Do you have any advice on supplements and food types which I could benefit from while on treatment?

A Decide that you are going to 'have flu' tonight and treat yourself well! Take two paracetomol (when you inject) and ensure you drink plenty of fluids. You can take more paracetomol as instructed on the pack if you need to. The best time to take your injection is usually in the evening as you may sleep through some of the side effects - though you should feel somewhat better the next day, still 'be kind' to yourself.
If you are able to eat a balanced diet whilst you are on treatment, you shouldn't need supplements, but if you decide to take them, don't take the sort with added iron (you can eat dietary iron). My general advice to the patients I start on treatment is, this is the time you are allowed to eat anything (within reason) as your appetite may not be very good, you need to eat whatever you want.

Should I get hepatitis A & B vaccines before I start treatment?
Q hello Angela. I have heard it mentioned that it might be a good idea for hep C patients to be vaccinated against hep A &/or hep B before starting any treatment. Do you agree with this & if so how far in advance of treatment should it be done? thanks, deb.

A I do advise my patients to have these vaccinations, not only before treatment, but when they first arrive at clinic, especially if they are classed in a 'high risk' group, for example, if they are going on holiday. This saves me having to delay treatment if they want to have these done first.

Just started treatment and do not have a specialist nurse is this right?
Q A friend of mine has just started treatment at a hospital in west London for Hep C. They do not have a specialist nurse and the consultant who has prescribed the treatment says he does not need to see my friend for a month after he stars the medication.
This doesn't seem right to me. What can he do?

A I t is disappointing to see this as NICE guidelines do say that a specialist nurse should be in place to look after treatment. In our hospital, I see my treatment patients with blood results once a week for the first four weeks (including so that they are happy with injecting technique, side effects, etc), once a fortnight for four weeks and then four weekly (or more often as necessary).

I am concerned that you have no nursing support which is generally seen as part of the prescribed treatment.

4 weeks to go before I finish treatment!
Q I would just like to animate everybody that is struggling with the treatment. I am into my 44th wk and so far all my results are normal since 6 months into the treatment. The first 3 months I went through hell! But it is a thrill when each month the results get better. Although I am worried that once I'm off the treatment the virus will kick in again...I will just have to be patient and positive. At least we can say we tried...

A Fantastic to here that you have got through to this stage and are keeping your energy up in order to finish! It is definitely inspirational to others who may be about to embark on treatment to be able to take motivation from you. There are always fears that the 'dreaded virus' will return, but you have to just hope and don't worry - time only can tell with this. Good luck for the next few weeks and the future


At week 29 of treatment and neutrophil and WBC counts have suddenly dropped
Q Hi Angela Im in week 29 now of 48. There was some fluctuation in my blood levels (FBC) up till about week 11, since then all my levels have been well within the safety zone until my blood test results today. Neutrophils have plummeted to 0.6 from 1.7 (last month) and WBC plummeted to 1.6 from 3.4. I understand the need to reduce my Pegasys (Interferon) from 180 mg to 135mg, but what I do not understand is this sudden plummet in these 2 levels. My Hb is 3.5 and platelets at 222. Why the sudden plummet, when they have been well within the safety zone for 4 months now? 49 yr old Male Geno 1 Started Combo Therapy on 17/03/2006. Undetectable at 12 & 24 weeks

A I have seen this many times, but unfortunately have no concrete answer to this. Looking at other treatments that may lower Neutrophils, this is not uncommon in that area either. Saying this, in my experience, I have not used any medical interventions other than dose reduction in order to steady this, and have never seen this as detrimental to ultimate outcome if done after the 12 week point

Geno 3 I want a biopsy
Q I have genotype 3a and I do not have much in the way of symptoms and so I have decided that I do not want treatment for now. However I would like a biopsy so I will know what state my liver is in. But my consultant will not agree to a biopsy. He says that blood tests every six months are sufficient to monitor my liver. Is he right? Can I insist he do a biopsy?

A If it is policy that liver biopsies are not performed on a patient with your profile, unfortunately you are not able to insist. Do you have a regular liver ultrasound? Do your blood tests include viral load at all, or AFP (alpha feta protein)? This may be things you could ask, which also give you an idea of whether you could press further for liver biopsy as these would be good indicators when taken together.

Monitoring my hepatitis C dont feel enough is being done
Q Hello! Thank you for contacting me, I appreciate it very much. I haven't got questions regarding hep c illness, as I know enough. I think. I am not on notorious 'interferon, ribavirin' treatment. I think this is why the doctors at Norfolk & Norwich University Hospital don't bother much about me. Of course, I am still given appointments, once in four or five months time period, the doctors call this 'monitoring' my liver. It is a drag, because I have to wait often not less than an hour. And I never see the same doctor. Often they don't know the history of my illness. Not good waiting, because I feel so unwell. My blood is being tested, that's true, but as a rule the results are often lost! I asked many time if I could have a viral load test but my request was ignored (as a rule). I also complained about low platelets in my blood and if I could have some kind of treatment. But the doctor doesn't take any notice of that either. So I am dissatisfied and disappointed with doctors' attitude. I have pain in my stomach, in my legs and I have constant diarrhea. I am not on treatment, because after the one I had for 6 months I still sufferer side-effects. The treatment had done me more harm than good. Perhaps, there is some new treatment for hep c sufferers? To which my body could be more tolerant?
This is my question to your lovely nurse.

A Does the nurse specialist there see patients who are not on treatment too? You could see him/her and hopefully they would be able to answer your questions and give you some support - especially if you feel you are still having side effects post treatment. I do have patients whose side effects can last for up to 12 months following treatment end (though not full blow), but I'm sure it would be reassuring to be able to discuss this with a named clinician. I would also ask again for a viral load as this would be a useful indicator of what is going on with your virus since treatment. Hopefully this will help you to decide what to do next

IVF
Q Hi I wont be able to make the live chat but have a question please?
I am an addiction nurse at HMP Shrewsbury and we are responsible for all BBV testing, support, follow up and referrals. I have recently seen a chap who is antibody positive. Awaiting results of PCR test, he is an IVDU and he and his girlfriend are/were hoping to start IVF treatment. He asked how it would impact? Would they be considered for IVF? His girlfriend is not to my knowledge a drug user, has never had a Hep C test. Many thanks
Donna Jones

A In the hospital I work at, storing of eggs or sperm is the only part of IVF that is not permitted, though this may be handled at bigger centres I believe (Bart's and the London) for example