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Avatar universal

Still 2b after 3 PCRs

Hi again from Spain - long time no post :-)
Yesterday went to the doctor. He certified I was 2b only (third PCR in 4 months). However, he does not want me 2 start TX until my ALT levels drop (yesterday was 195) and 310 in march (they are dropping). He said i had an acute hep episode??? is that possible? and my liver is still swollen. I told him it was a reaction to the tetanus vaccine. he didn't believe it... I guess he thinks I'm drinking all the time or something of that sort :-(. My fibroscan in october was F0-F1 and now is F3!!!! bummer... I'm scared. he told me not to worry???. supposedly we should wait till november to see a drop in ALT and start TX then.
So my question is, how high were your ALTs when you started TX and is it better to do it in winter as opposed to summer? He said we could even do 3 months depending on viral response? I thought I was going to a good doc, but he didn't want to show me the ecosonogram.. Any suggestions?

saludos
the diver
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Avatar universal
let me correct that. He's a good doctor but he looked worried about the 195 ALTs (and I had them in 31o a quarter ago), so I don't know what to think. I feel fine with a mild pain in the side, but his expression worried me. Could I be cirrotic. Biopsy is not recommended for 2b right?
I hate being patronized by a doc, if u know what I mean.
Helpful - 0
Avatar universal
Hi Scuba,

Long time no hear! Glad you're only a 2b, a lot better than if you were a 1 and 2.

In *general* elevated ALTs do not contradict treatment, however, your doctor is suspecting an acute episode.

Three years ago my liver enzymes jumped from around 60 to little over 600 after taking some chinese herbs and a hep b vaccine. The doctor also likened it to an acute episode, and also advised me to hold off treatment until the inflammation clamed down. It took close to a year for that to happen and the ALTs did return back to around 60. ALT was 57 I believe when I eventually started to treat.

Don't know if your tetanus shot, or something else, caused your liver to act up, but apparently something trigged it. I had several acute flares within the first 7 years of contracting Hep C which was 30-40 years ago. Those flares I believe were brought about by excessive exercise.

Most don't, but did you ever before have an acute phase that often consists of jaundice, yellow eyes, white stools, wine colored urine, etc? That's how I first became diagnosed with Hep C.

As to treatment length, many geno 2's only treat 3 months. Sounds like he'll treat you for 3 months if your negative at 4 weeks and extend treatment longer if you're not.

As to the Fibroscan, not sure how significant a two stage variation is. I had a one stage variation by different hepatologists reading the same slides. I've heard two stage variations are not uncommon when you take into consideration absolute sample size, relative sample size/location and pathologist bias. This may be why your doctor is unconcerned or maybe he just doesn't see it affecting your treatment decision. Or maybe Firbroscan doesn't accurately read a temporarily iflamed liver. Just don't know.

I suppose you cold always get a second opinion but if I remember correctly he is one of the better ones in your area. If you don't get another opinion, then probably best to follow his advice and keep monitoring your ALT and wait until things calm down before treating.

All the best.

-- Jim
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Avatar universal
Jim, you big me small. :-)
Thanks a lot for your advice. In fact I go to this doctor because he's in a teaching hospital and he's the only one with a Fibroscan in the city. He also sounds real competent.
I told him I had my last HepB shot and tetanus vaccines simultaneously and started feeling weird right after that..However, never had jaundice or white stool. I would say a bit dark urine yes, but nothing other than that. Didn't know you could have acute hep without being really sick.
So I guess it will take 4 months for the ALT to drop to my normal "level". Never had them as low as 65 thou. I've always have had them on 80 or so. It could be race related. I'm hispanic.

Muchas gracias for your advice Jim. I really appreciate your input.
I hopefully start my TX in november then.

saludos

scuba
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Avatar universal
I didn't have jaundice and white stools after the herbs and hep b vaccine -- just elevated enzymes and feeling tired. The white stools, jaundice, etc, was 30-40 years ago when I first contracted the disease. This happens in a small minority of cases as most people don't have any symptons.

Interesting you also had the hep b shot before the liver enzymes elevated. While they say it's safe for folks, I hesitant to take another hep b vaccine.

I hope things work out.

-- Jim
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Avatar universal
I forgot to tell you. I had my 3 rounds of HepB and one shot of Hep A vaccines and they didn't work. I mean, I haven't created surface antibodies and the doc said i should get vaccinated again. No way I'm doing it because it seems is not all that safe (no matter what they say). I had 3 years of stable enzymes before being diagnosed, and now after I messed around with prescribed vaccines I got the ALT high as hell and an acute bout.
I hope the riba and the IFN don't mess me up too much in that way. BTW, how are u doing post TX? have you had your first PCR after finishing?

regards
scuba
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Avatar universal
Buenos Dias! glad to see you are down to one genotype! It sounds like you should be able to kick that little bug right out of your system.
Biopsies are done on all genotypes, but most dr don't seem to want to do them on the 2 and 3s, because most respond to tx and once the virus is gone the liver will heal. But what if you are one of the unlucky ones who have a relapse or a breakthrough? you won;t know the actual state of your liver in order to decide whether to be more aggresive in your tx. Try to present that point to the dr.
cuidate!
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Avatar universal
Glad to see you again,sorry to hear your damage has progressed. I agree with you, I would think the vaccinations could be connected to your enzymes going up, but tht is just a guess.
I was acute when I was diagnosed and my doctor felt my high enzymes were a good reason to start treatment RIGHT AWAY. I am puzzled by your doctor wanting to wait, enzymes fluctuate a LOT and for a variety of reasons and I can't figure why he would wait due to that, I'd ask him.
Are you drinking alcohol at all? Have you been drinking since you were diagnosed? Alcohol and Hep C are a very volatile combination, it is best to not drink at ALL with Hep C.
If you have not been drinking, make sure your doctor is aware of that. If you have, that might be why he wants to wait, you can not be drinking and treat Hep C. If you have been drinking, the enzymes going up could be because of drinking. I would suspect the vaccinations for B if you are not drinking.
That is scary that your liver damage has progressed already, from your post it looks like it advanced a stage, but I can't really tell from the info.
If it was me, I'd get another opinion just for peace of mind. I would not want to wait that long to start treating if my damage level had progressed that much in 3 months. My enzymes went down IMMEDIATELY when I started treating my Hep C and I have heard that from a lot of people here. Again, I don't understand why he would wait due to higher enzymes in light of the fact your liver condition has gotten worse in 3 months.
I am glad you are stil feeing good but remember, liver problems are VERY sneaky and you can feel great at the same time your liver damage is increasing as you have experienced.
As I recal you are young and that works in your favor when treating and increases your chances of success.
Good luck, nice to see you.
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Avatar universal
ola,

must be great diving in spain. hope to get there in a year or two.

i have trouble believing your stage went from 1 to 3 in only 3 months. i have read though that the reading can vary on the section of the liver it is taken from,ie. some parts are worse than others. as was said if you are und. at 4 weeks the chance of svr skyrocket. i wish i had tested at 4 weeks. it sounds like you have an excelent shot at svr.

pray for svr and good vis.
bobby

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Avatar universal
My vaccines didn't take either and I also refused to take them again. However, after I told my new docs the story with the hep b vaccine, etc, none of them pressed me. The good news is that my enzymes finally normalized after about 9 months and my viral load decreased during that time. Finished treatment 14 weeks ago and was non-detectible at week 12 post treatment which is very encouraging. Thanks for asking.

-- Jim
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92903 tn?1309904711
I agree with bobby, I find it unlikely scuba had that much progresssion in such a short time. More likely that one of the tests misrepresented the actual damage.

I'm interested in the ALT levels and vaccines. My Hep B series didn't take and so I double dosed a booster. Rechecked the antibody a month later and the vaccine took, but also had slightly elevated ALTs. Jim, did you uncover anything that says B vaccine can raise ALT?
Helpful - 0
92903 tn?1309904711
Now you guys have me really worried. I just oordered a set of white stools from Potery Barn. Is that a problem? I thought they went well with my paisly linoleum. Is this a fashion faux pas?
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Avatar universal
ooohhh! THAT kind of stools!

I thought the fixation was back!

anyone knows the medical term for someone with a fixation like that?
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Avatar universal
I forgot that you took that Hep B vaccine (against my advice btw LOL) just before your liver enzymes went up. I bet that's exactly what caused it and not the ocultaroonee stuff :) In my case the ALT's eventually normalized. Go ahead and do a triple booster next time. LOL. Don't know of any studies but my doctors agreed, no hep b boosters for me in the near future.
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96938 tn?1189799858
I think the term is scatterbrained.
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92903 tn?1309904711
scatturdbrained according to my dictionary....how are you dude?
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92903 tn?1309904711
No. No fixations. Since stopping the meds though I'm drawn towards Pottery Barn and Barbara Streisand. Damndest thing.
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96938 tn?1189799858
All is well here. Enjoying the summer and, as usual, tapping my fingers as I await another doc appointment.  Strange thing happened the other day.  A doc's office called me to say they will likely re-schedule a sooner appointment for me and they were asking, in advance, if there were any dates I was not available.  Shocked that a doc's ofc would be so proactive - but these are the Univ. Liverheads who seem to have their act together.

Anything new on the alt/ast saga? And, did your platelets rebound fully?
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92903 tn?1309904711
Glad you're getting a good feeling about the new liver joint. The place I go seems to have it together too. Platelets are back to their pretreatment levels  of ~115. ALT is still high preventing me from letting my guard down. I guess I'll just check every couple weeks and try to maintain healthy diet.

Continue enjoying your summer. You deserve it.

I have great seats for Mellissa Ethridge concert tonight. That should be fun.
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Avatar universal
note to myself: possible long term effects; pottery and Streissand, questionable effect: anal fixation, merkin addiction.
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96938 tn?1189799858
Over time I've be concerned about long-term effects.  I finally decided, for myself,  that ending up with long-term effects will mean that I'm around longer to have them.
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Avatar universal
GOOD ONE!!
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Avatar universal
Hola everyone: Thanks a lot for your responses.
I have to be honest with all of yous. Since my last Fibroscan in november I drank a bit of alcohol in Xmas and several weekends after thinking that I wasn't in too bad of a shape.
In some of the books I read says that one could drink up to 40 gr of alcohol per day, but now I realize is BS. No booze for me at all from now on.
But I'm pretty sure the vaccines were the trigger. I started feeling bad after the 3rd HepB and 2nd tetanus shot.
Anyway, it has been said that the fibroscan is most accurate in low levels of the disease...
I'll try to see my other doctor (he's always been proTX since the beginning but he also told me last time the we should start after the summer (and that was in march) when my alt was 300.
So 2 docs that don't know each other came out with the same diagnose...I'm gonna stick to that for the time being.
I wish I could post more but the problem is that I'm doing it from work...no phone in my house just yet...
BTW had tickets for the stones concert, but after Keith fell and Ronnie went into Betty Ford again we're upshit creek :-)
saludos y abrazos a todos
Helpful - 0
96938 tn?1189799858
Good decision on the drinking. Now's not the time to challenege the liver further.  To hear two docs that have the same point of view should be encouraging for you.  Sometimes I wonder what I really want from the doc and I decided that I'm just looking for a straight, uncomplicated answer to what I think is a straightforward questions. And, different docs can have different answers to the same Q's - one of the frustraing things about hcv.
As for the Stones, I'm surprised that there are so many of the originals still alive.
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96938 tn?1189799858
I often check clinical trial and noticed this one - it's been out there a while:

This study is examining several different doses of SB497115 as a treatment for patients with chronic hepatitis C-related thrombocytopenia who are potential candidates for antiviral treatment with pegylated interferon and ribavirin.

It's interesting that if the PI's get ready for prime-time, without peg/riba (who knows) I wonder if this stuff  will really come into widespread use.  At least thy are looking for a 'rescue' drug where there is none now. Plus, it's an oral.
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