LOW HAEMAGLOBIN LEVELS - EPREX
Q. I am in week 8 of peg/ribavirin treatment. My haemaglobin has been dropping steadily and hit 88 two weeks ago. My doctor prescribed 30 units of eprex twice a week, last week this went up to 60 units three times a week (haemaglobin now 91), and she wants to increase this to 100 units three times a week. Is this standard practice? I feel that the eprex makes me feel awful the following day (even more so than usual!)
A. As with many nurses, I do not have personal experience in using Eprex with my patients. However, it does seem sensible to start off with a low dose to check for tolerance to the drug; then increase slowly. I feel absolutely sure that any doctor prescribing a drug like Eprex would carefully check the dosing regime before administration. 100 units three times a week is likely to be the optimum dose. It is obviously having the desired effect as your haemaglobin is beginning to increase. You may find that you become more tolerant as time goes on. I wish you the best of luck.
POWERFUL DREAMS ON TREATMENT
Q. When I was on treatment I had the most extraordinary dreams (on the days where I actually slept!) They were really powerful and even a year later the subject matter is still very much with me - without wanting to sound too bonkers it was kind of like a religious/spiritual experience. It happened about three months into treatment and lasted for around a month. I have spoke to other people on treatment who have said the same. Can you explain why this happens and have you had reports from your patients about this?
A. I have had a few patients describe more vivid dreams than usual but I have never had reports of a religious/spiritual experience. I am sorry I cannot give an accurate explanation for this except that the treatment does seem to affect thought patterns and behaviour in many patients.
GETTING BACK TO NORMAL AFTER TREATMENT
Q. It's taken me a year to really feel back to "normal" after treatment - I still suffered with tiredness and aches on and off and a general feeling of not being 100% for a long time after finishing. My last blood tests (taken at 9 months post treatment because I was still feeling unwell) still showed SVR and all my ALT/AST and other bloods etc were normal -BUT! I still worry about the virus coming back even though my consultant says the chances of that happening now are 1 - 2 %. I also have a regular sensation (not a pain but a kind of discomfort) in my liver area as if it is moving or is too big for the space that it lives in. My consultant says they cannot explain that with any certainty but he did say it is possible it is the fibrosis reversing as my liver heals. Do you have any thoughts on this? Also he says he doesn't want me to go back until the end of this year but I feel I should have a 12 month post treatment PCR - do you think this is being over cautious?
A. Many patients take a very long time to feel well again after treatment. This is especially so in patients who have undergone a year's treatment like yourself. Your worry about the virus returning is not unusual despite your consultant's reassurance. In our clinic, once patients have achieved a sustained viral response i.e. clear of virus six months AFTER the treatment period, we actually see all patients annually thereafter to check the PCR remains negative. Most patients feel reassured that we are repeating the PCR annually.
Q. What is the significance of the 'enzie count', which I understand to be 'S GGT' on my blood test printout? I don't understand these readouts.
A. I assume the printout means enzyme count. In the context of liver disease this would mean liver enzyme. These are substances released into the bloodstream by the liver. The levels of these enzymes increase when there is inflammation cause by viruses like hepatitis C or excess alcohol intake. GGT or Gamma GT is an enzyme released by the liver. I am not familiar with S GGT. GGT elevation is often seen in excess alcohol intake.
ACHES AND PAINS
Q. I have aches and pains and am not sure if it is from the hep c or the after-effects of treatment (which seem to be much played down to me) I have had a rheumatoid test which showed negative - does the medical profession recognise fibromyalgia in this country? Do you see many people with all over aches and pains if so what do you think it is?
A. I do feel unfortunately that some members of the medical profession do not recognise fibromyalgia. I do see many people with aches and pains but in my patients it is usually those actually undergoing treatment.
Q. As a 3-time relapser (geno 3 - I go negative every time but the virus returns within 2 months) I have been told that I would be a good candidate for maintenance therapy - do you know where NICE is with this? Which is more likely to come along first - maintenance therapy approval or protease inhibitors in your opinion?
A. Maintenance therapy is not currently funded in the UK and is therefore not routinely given. NICE have not produced any guidelines on maintenance therapy. I guess that protease inhibitors are more likely to come along first.
Q. Apart from 6 monthly scans should people with cirrhosis who still have active hep c be monitored in any other way? e.g. endoscopy on a regular basis (if so how regular) and bone density scans etc?
A. Most specialist services monitor this group of patients by six monthly ultrasound scans, endoscopy to check for oesophageal varices (veins in the neck) and alpha feta proteins. The last being a simple blood test to look for tumor marker cells. Bone scans are not usually routine although some clinicians may feel it is necessary in some cases if the patient has severe aching bones etc.
Q. if you have 'established cirrhosis' does it mean that your entire liver is scarred at the same level or could some of it be functioning better than other parts of it? I have never been able to get my cirrhosis graded or scored so have no idea how bad it is - but I do have an enlarged spleen - if it carries on enlarging (seen by ultrasound) what would the consequences be and why does the spleen enlarge - is it to do with platelets? does it mean the start of varices?
A. Before answering your main question, I wondered why you have not been able to get your liver tissue scored and graded? I do know that some very eminent histopathologists choose not use scoring tools; they just comment on the tissue using text. Terms like minimal, mild, moderate and severe are used within the report.