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Quantitative HCV
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Quantitative HCV

dear Doctor

I have recently get my viral load quantified before treatment. It is 272,000 iu/ml.My ultra sound states normal liver within upper limit in size (14.6)  My physician has advised me uniferon (Interferon alpha 2b) 3 miu and Ribazole 600 mg twice a day. Kindly tell me what chances i have for SVR after 6 months treatment. what prevention i have to make during treatment

Regards
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Avatar_f_tn
I am not a doctor so I can't give you medical advice, but I can tell you about give you a few hints based on my personal experiences. I am 13 weeks into treatment for G1 HCV.

Since you are talking about 6 months treatment I suspect you might be one of the easier to treat genotypes who have higher success rates. There are a lot of factors to consider though.

I urge you not to be rushed into treatment. Take the time to get good information and really think about whether to go ahead. In some cases a person's state of health will mean that they really must have treatment sooner rather than later but it isn't always so. Find out first! It really is not something you should be scared into making a quick decision.
-- Your health and infection statistics
-- How you can manage your life during treatment
-- What the ramifications of not treating are
-- What the long term effects of undergoing treatment are

The Health Pages (see top right of this page) have some good summaries.

It helps to tell people more about your situation and lab results when asking for advice about estimating the odds.
-- HCV genotype
-- Liver Function Test results (ALT/AST in particular)
-- Age
-- Male/Female
-- Body weight
-- Any other health conditions you may have

When deciding whether to do treatment - which I suspect is the reason to ask about your odds, it might help to think about these:
-- Length of HCV infection
-- Your general health and risk factors especially alchohol consumption
-- Practical matters such as type of work you do. How much time and money you can devote to treatment.
-- You need to know that you may not be able to go ahead full steam right after finishing treatment. The longer the treatment the more recovery you may need. For example Genotype 1 requires 48 to 72 weeks treatment and needs approximately 6-months to 1-year, or perhaps more, for recovery.
-- What is HCV doing to you now? How much do you really want to get rid of it?

Be aware that there can be a high price to pay for trying to get rid of HCV. You might breeze through it and come out with a great result. You might have terrible side effects, permanent damage to your health and on top of that the treatment may fail. It isn't an easy decision at all. I think it helps to take the time to be really sure it is the right decision for you. Read the forums here People talk about:
-- decisions to treat, or not
-- side-effect persistence and post-treatment health issues
-- what it feels like to be on treatment
-- new drugs likely to become available in the near future

GET A GOOD SPECIALIST.
REPEAT,
REPEAT,
REPEAT,
GET A GOOD SPECIALIST.
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Avatar_m_tn
You need to provide a bit more info....age,race,weight, male or female?,Hepc genotype etc. (I'm guessing a geno 2 or 3?-typically treated for 6 month/24 weeks)
all these factors will weigh on your "odds" of treatment success..Genotype 1's are the toughest to cure...your low viral load of 272,000 is a major plus (anything under 400,000 is considered low)
If you are a geno 2, I'd say your chances of success are very good with that low starting vl...
best of luck
pro
PS: your "Ribazole" dosage would appear to be weight based-which is a very good thing..but if you are a genotype 1, you'll be looking at a minimum of 48 weeks of treatment--
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Avatar_m_tn
PS: for the most part,we aren't doctors here, although there are 2 who are on the board-and  I am neither (g)
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547181_tn?1255150106
My HCV was discovered 4 years before and my serotyping was untypable at that time since i was advised to wait for a while and dont start treatment. Now m feeling some constant problems in digestion, loss of energy and fatigue etc.  I am a male with 30 years of age. Height is 5-10'' and body weight is 80kg.I have consulted two good specialists in my city. Both are of the opinion that i should start treatment as it is going to affect my liver as my ALT starts increasing the limits (still ranges 43-53).However both specialist suggests different brands (Intron A & Uniferon). According to them my genotype require 6 months treatment. I am going for Uniferon as it saves some cost and side effects are on lower side. My doc told me that first few ingections will hurt more than there are good chances that these side effects are reduced. can u plz specify what kind of side effect i will fee  
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476246_tn?1310999221
I'm just wondering which country you live in, as the treatment drugs you are referring to sound different. Have you not been offered PegInterferon like Pegasys or Pegintron. These are injected once a week instead of three times per week.

Marcia
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547181_tn?1255150106
I belong to pakistan and the cost of treatment (Peginterferone) is not easy to affoard. Thats y most doctors go for simple interferone. Moreover as per then the recovery rate of simple interferone in Geno type 2 & # is same of pegylated one. However if anyone has genotype 1 then peglated is referred.
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476246_tn?1310999221
Thank you for the explanation. I am genotype 3 myself, but have not started treating. From what I understand, the side effects can be mild to severe. Everybody reacts differently and one can in no way predict, who will react how.

Anything from fatigue, brain fog, rashes, hair loss, anemia, low white blood cells. If you type side effects into the 'search this community' search field, you will find a lot of discussions on this subject. Also just strolling through the last few weeks on this forum or the social forum, you will see many discussions about this subject.

All the best,

Marcia
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547181_tn?1255150106
Thanx for the suggestion . I have devoted a long time in searching and analysing side effects. My doc says that it also depend upon the age, physical condition and the stage of disease. As per him , i quite young and virus has just started its destruction thats y no demage is done to the liver yet, my viral load is also low 272,000 IU/ml. so there are fair chances that tx will be successful and side effects will be on lower side. Lets hope for the best.

In your case, after Dx, 6-8 months are observed, 25% of pateients get rid of HCV without any medicine or treatment. Hope u will one of them
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476246_tn?1310999221
Thanks! But that would be wishful thinking. No riks factors for the last 10 years, at least. Even though I only was dxed a few months ago, I must have contracted the disease about 25 years ago, so those 6 months are long overdue.

Marcia
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547181_tn?1255150106
marcia ! have u get ur viral load quanitified ? what was that ??
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Avatar_f_tn
I can't comment on which of those drugs would be better for you. It is my understanding that there are subtle differences in effectiveness depending on body weight, genotype and viral load. I have Genotype 1 so all my reading has been focussed on that. Sounds like you have 2 or 3 which is easier to treat, but you really should check that with your specialist. Race also makes a difference to odds as Proactive pointed out.

One thing I would say is that if you are going to do this, then saving a bit on the drugs should be less important than which drug is more likley to cure you. After all if you fail and have to retreat then it costs a lot more. The cost of the drugs are not the only cost to you. You may be able to earn less while on treatment. You may need to pay for extra drugs to help with combination therapy side-effects. I reckon if you are going to do this give it everything you possibly can. Prepare so that you are able to do that. Did the two specialists tell you why each one recommended "Intron A" or "Uniferon"?

Sounds like your chances of success are good from everything I have read. You might have the luxury of being able to wait for a while by the sound of it (naturally please consult a real specialist about that). What about the other factors like how it will affect finances, work, and family life? My personal opinion is that although health comes first, your ability to complete the whole course of treatment, availability of a good specialist and so on are really important.

You won't know how hard the side effects will be until you start. I have met people who barely have any, but I don't think that is normal. A good specialist can mean the difference between having to retreat, or not, or starting sooner than you need to. I got bad advice initially and started sooner than I should have. That means I have to wait a lot longer than I might have to be able to access newer more effective drugs and I have to do at least 48-weeks when I might not have had to. The newer drugs are still only available in trials at this time though.

There are differing schools of thought on among specialists on when to start treatment. Some push you onto treatment as fast as possible. Others consider your ability to complete the whole course which makes a huge difference to your chances of success. A good specialist will do plenty of tests to monitor viral kinetics during the first 12-weeks of treatment in particular. They can predict non-responders after 4 weeks with high reliability. It could save you a lot of grief if you aren't going to respond to get off treatment sooner rather than later. I switched to a new specialist part the way through my treatment because my first specialist kept discouraging me from having a 4-week test. (I wanted MORE tests than that!) It was a very upsetting experience because I felt that he was forcing a substandard treatment regime on me while I was losing heaps of work and suffering pretty bad side-effects. Other people have told me that they would rather not know information like that. I think it is my right to have as much information as I ask for. A really good specialist should help point me in the direction of what I need to know as well as respond to my needs. That is my approach. My second specialist is much better.

Side effects. You will hear it over and over again. "Everybody is different". Every week is also different. I think mine have been pretty bad in some respects and not so bad in others. I haven't had any really bad rashes that people complain of - yet. I have had eyesight deterioration and eye-pain which makes it difficult to read, terrible brain fog, headache, nausea, vomitting, fevers every week over 38 degrees. I have chest pain and slight shortness of breath, nerve pain in different areas, the location of which changes from one week to the next. Teeth for a couple of weeks, leg another time, the focus shifts around. I am wiped out for 3-days a week. My gums started to bleed, thought my teeth would fall out (Vitamin B Complex helped). Mostly I have tried to exercise as much as I can. I was a very keen cyclist before starting treatment but had to stop recently. I had a couple of weeks when I was barely able to walk 100 yards down the street. That has improved now. I am going to try a little cycling again this weekend if I can.

The first 3-weeks were the most intense in terms of side effects, but I still had the strength to recover physically after each shot. After week 3 other symptoms came into focus. I have lost 8-kilos so far. At week 12 and 13 things started to calm down a bit but who knows if they will stay that way.

From about week 6 I started to feel more and more broken and worry about the damage that was occurring in my body. I really wish there was a lot more information about that. A large number of people who have completed treatment say they have health problems afterwards. Some don't mind. They think the sacrifice is worthwhile because it is better than the damage which can occur from HCV. I think it depends on your state of health to start with. Perhaps if you are healthier to begin with you may come out of it with less damage from the treatment. On the other hand, if you are in good shape, used to working hard, and perhaps enjoying a sporting activity, you may percieve treatment very negatively. It is quite likley to trash your quality of life for at least a year if you are doing the 24-week course. If you are lucky and wait a while with your genotype you might only need a 14-week treatment.

I think everyone's values are different, the thing is to really look through your options first. Find out what is right for you. Don't get scared into thinking that you must hurry your decision. Sounds like you are experiencing symptoms which have bothered you, they sound right for HCV. One question though, have you been checked to rule any other possible causes of those symptoms? Those figures don't sound too bad to me. It is impossible to tell just from ALT/AST how much liver damage may have already occurred though. Have you had an ultrasound or biopsy?

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387294_tn?1207623785
In weighing your decision to treat you must consider the mental strain of having hep c and wondering if you should treat or not.  I was genotype 3, treated with mild sides, and am so far clear at 12 weeks.  If I am one of the lucky ones that clear, psychologically it will be a big relief.  The opinion I received before deciding to treat was wait and see what genotype I was, if one of the easier ones, the recommendation was treat if one of the harder ones, I needed to make a decision one way or the other.  Good luck.
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Avatar_f_tn
They can predict non-responders after 4 weeks with high reliability. It could save you a lot of grief if you aren't going to respond to get off treatment sooner rather than later.

That is not necessarily true.  While it is a another indicator there is a percentage of those that relaspe (especially geno 3's) after showing UND at 4 wks.  Geno 1's usually do not clear by 4 wks on current SOC but there have been 1's who have cleared at 4 wks as well and relapsed.  To say they can predict non-responders at 4 wks with a high reliability would discount all of those who have acheived SVR and did have UND at 4wks.  I would not use that as a gauge to determine whether or not I would continue or not with tx.
Trinity
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476246_tn?1310999221
My GP ordered a PCR mid-March and the viral load was 580.000. The hospital which will treat me took all tests over again and I will get the results next Friday.

Marcia
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Avatar_f_tn
To say they can predict non-responders at 4 wks with a high reliability would discount all of those who have acheived SVR and did have UND at 4wks

Meant to say "would discount all those who have acheived SVR and did NOT have UND at 4 wk.

Oh, the riba brain
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Avatar_f_tn
Sorry Trinity. You are right. Thanks for pointing that out. I should have been more careful. I didn't mean to encourage anyone to quit because they are not UND at 4-weeks. As I said previously I am Geno 1 and therefore I have done a lot more reading pertinent to my own condition. I have different decisions to make compared to the easier to treat genotypes. We aren't sure yet what genotype scruples has though so he might benefit from knowing a bit about Geno 1.

Perhaps I should have said something like this:
In the hands of an expert with up-to-date knowledge, the rate of viral decline during the first 12 weeks is very helpful for making treatment decisions. Clearing by 4-weeks greatly increases likelihood of success. A very slow rate of decline is usually said to have high negative predictive value. You can tell pretty early if you are likely to be in that group. If you are in that group it doesn't necessarily mean you won't get SVR. If you do know, you will be in a position to consider your options.

The more information you have about your reaction to the drugs, the better position you are in to make decisions down the track. In the case of a Geno 3 that might be choosing to extend tretment because the rate of decline isn't fast and you reached UND later than others. In the case of a Geno 1 it might mean choosing not to continue because you are in the non-responder group - roughly 20%. It might not, there may be a reason to keep trying against all the odds. Hell, the tests may have been screwed up for all you know...

Health systems work out SOC protocol based on THEIR assessment of epidemiological and financial considerations in addition to some concern for patients. Health guidelines are a slow moving machine. They can be behind the times and are not necessarily in the best interest of patients, especially if you don't live somewhere like the USA or the UK. This treatment has really serious ramifications for people's lives. I don't suppose many doctors, epidemiologists, and health care officials have personally tried a 48-week course of this medication themselves.

I don't know much about SOC in Pakistan where scruples lives, although he has mentioned a few things. From the sound of it, he could benefit from knowing that there are various options for treatment. It might save him so much difficulty if he can get the best treatment available, even if that costs slightly more initially. The financial considerations of a goverment and the best interests of an individual can be diametrically opposed.

By the way scruples, I lived in Peshawar when I was a little squirt. I went to Natiagali in the holidays. Spent time in hospital in Lahore when I had typhoid. Started learning Urdu and Sanscrit but we unfortunately didn't stay long enough for me to really get into the language.
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547181_tn?1255150106
Odin, thnx for the valuable information u gave to me. I have very long discussions with both of my docs. I have a lots of liver and other tests including ultrasound etc.After scanning the results of all that both specialists are of the view that i should go for tx as this may be the right time to cop with it as still m in  agood health and position and the support from body will be much more at this time. Moreover results have proved that early treatment has more advanategs. I was checked for symptoms and it was ensured taht these are mainly due to HCV.

Thanx God. the Genotyupe in pakistan (Gen2 & 3) is easy to cure and the SVR percentage with simple therapy (normal interferone+Ribazole) is 80%. The efficiency of simple therapy is less in case of Geno 1(which is less common in pak). Pegelated interferon has better efiiciency in case of Geno1 but have almost same results for  geno other than 1. However due to our environment and other factors, the side effects of pegelated are more severe even if it is injected once a week. Uniferone (from getz Phrma) and Roferon (Rosche) are mostly used in pakistan but surprisingly Uniferon has proven with lesser side effects (as per my doc) with same efficiency in treatment. Moreover trhe difference between the cost of medicine i.e., simple and pegelated is 6 times ( would u belive it ). so each one has to think a lot before going for that as no support from govt or other institutions.

Love to read that u been in pakistan . I also lived in Lahore for 8-9 years and also lived in Peshawar too. I loved lahore much. Nathia gali and murre are my favorite places to visit in summer.

Hope u'll have a good time after the tx and will live a normal life .
  
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Avatar_f_tn
Thanks. Good luck to you too. Let us know how you go.
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547181_tn?1255150106
ya definitely i'll be intouch with u ppl. today m foing to visit my doc before the tx and my tx will start from monday.
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547181_tn?1255150106
Hi all

todau m going for my first shot. Lets see wot happens. I pray Allah will help me to get through it
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151263_tn?1243377877
Good luck on your treatment. And thank god you've finally arrived on this forum. Because up until now, frankly we've had no scruples. ;-)
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547181_tn?1255150106
Thnx . Infact i do need mental and emotional support. Thnx God that i finally reached here coz a lot of fears and misconceptions are removed. No u do have scruple :)
may be not so effective in the beginning ;-) but will prove benificial
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547181_tn?1255150106
Dear Abbas

Its lovely to see a momin bro here. My doc first suggested pegasys but due to its expensive price n initial stage of my case he choosed simple interferone as second option. The brand (Uniferone) he suggested has very good results in pak over a period of last few years.

The price of Pegasys is pak is 188 US$ per shot (US$ 754 per month) while the simple cost me for US$ 116 per month. Now u can assess the diff. There are some chinease brands also available here but the results are not predictable.

I had first shot on monday, but belive me I have very very mild (Almost negligible) side effects for the first shot although i have heard that the reaction of first shot are always tough. Today m going for the second one . I wish Allah almight make it easy for me.

The sides include a little pain in the knee joints for 1-2 hrs , some tiredness as happens after a hard & long working day, body a bit heated up for 2-3 hrs and nothing more than this. How ever I cant sleep for half night. I am not sure its because of interferon or a phschological effect. what side effects u observed on your treatment with simple interferone and what with pegelated ???
what do u mean by Pegasys and not peg-Intron  
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547181_tn?1255150106
Dear All i have heared that some cases of Geno 2 & 3, first 2-3 injection of interferone made you PCR UNDETECTED but still you have to go for further treatment. In that case if your viral load was less than 400,000 iu/ml before tx, age less than 35 years and no sign of liver demage then you can be categorised as Super Responder and the treatment is reduced to 4 months (16 weeks) . Do anyone has knoweledge of this???? plz share  
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