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Post Info TOPIC: Hep b reactivation


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RE: Hep b reactivation
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Mark,

This is just part of an old post you made (Jul 2015) in your SVR24 update - in which you conveyed your old CAP, and concerns re: bili remaining higher than normal, and of course your probable high-ish Fscores by various fibroscans. 

... ALT 17 AST 28. ALP 108 Bilurubin  21 didn't check platelects  will not get previous viral load results and reason for retest until trial results published which I'm told will be next year had a fibroscan at the unit she had a hard time took her a long time my readings covered a wide range from 12 to 40 plus she tried different probes and several sets of 10 or so readings came up with score of 21  

my CAP SCORE Inoticed was 367 if I rember correct and fatty liver can cause a reading up to 10 kpa higher according to new research also Alt over 100 causes a 2kpa increase So not sure how to evaluate result other than I am still clearly cirrhotic 

the same week I was passed back to my local hospital to their care they did bloods not got results yet offered me another fibroscan on their  machine said I was indeed an awkward bugger to scan wide range again 8.5 to 38  ended up with score of 18.5 

So whist my liver is obviously in better shape the cirrhosis seems pretty much the same  told in a year to 18 months will be the time to see if improvement has hhappened one worry is my hospital only intends to ultrasound me yearly the research center said to insist on 6 monthly and make a fuss if I have to but was told although the nhs guideline is all cirrhotics must be offered 6 month scans they simply cannot do iit however while booking my ultrasound appointment ( been a year now) they said problem not with them they are happy to do 6 monthly if that is ordered by doctor don't know what to do or how vital it is ...

There are a lot of other things we do NOT know, because of your trial blinding, as you would not have been privy to much of the lab work results that Gilead knew, from pre-treatment asessment results, to VL's all through treatment.

A big blank is WHAT the blood "re-draw" was for (the one you pondered over so) - THAT is STILL an unknown, we have no idea (for sure) what lab was being "re"-drawn /"re"-tested, or WHY. Could have been as simple as a "bad draw" having to be done over again, and NOT that there was any big problem with "you" per say, but just the sample being no good - you never know! - so, when they keep you in the dark like this (blinded studies) - it is impossible to guess exactly WHY they re-drew at that particular time. Stuff like that compells us to "read into it", but it would have to be substantiated not speculated on. Your study nurse was "safe" and correct to say that anyone with hep B (co-infection) perhaps would have not been wanted as candidate for the trial - it is often the same in many of the trials, we must fit their parameters and exclusions, but what she said still does not tell you much at this juncture. 

You are still be offered "verbals" it seems. You don't have any real lab test results (on paper), for hep B immunity assessments pre-trial surface/core antigen/antibody titres, to rely on as a start point? 

Without labs, etc., we can only guess at "what it means" when you were "told" you had a hx of B but are "inactive", does that mean you were thought to have spontaneously passively "naturally" resolved  a past B episode all on your own, prior to being treated for your C? What do you recall from your own hx of being "sick" with having B, or, what do you recall about ever being immunized or tested for B immunity prior to your diagnosis of C? You must have had these B antigen/atibody assessments done prior to C treatment, and if B was a known concern during treatment, you would have had re-assessments done during, and after C treatment. You must have had a B DNA test done (at some point) if someone is telling you (now) that your B load is low, inconsequential as far as your ability to easily infect anyone else, etc., etc. You do need the "early pre-treatment" B immunity data to even begin to piece together a guess as to whether you had a dormant/occult B going on, prior to C treatment, and other data that might indicate a B load (IF you did re-activate, period, or if you reactivated to any sifnificant degree).

I would be interested to know (pre-treatment) if your B immunity testing showed you were surface antigen negative, and core antibody positive - what the B surface antibody titre was - what they said to you about whether you were "immune" to B or not prior to starting C treatment.

There are many people out there walking the face of this good earth carrying small loads of B, who are NOT treated for their B, their loads do not justify it, those who will not suffer any major life/liver consequence, who are just simply being followed - and they live out their normal lives. Followed, so they can be treated if necessary, and to make sure their livers are coping and good. Obviously IF you had had a B load, during C treatment (which we still have not ascertained), you had no huge "re-activation crisis" (the scare stores you were googlng up), it did not culminate in a complicating overwhelming B upsurge, on the contrary, your liver went HAPPY!, ALT/AST and other signs/sympoms and markers ALL improved as a result of your hep C getting annihilated on treatment. 

True, you should be entitled to find out what happened and when (as far a B), but also keep in mind and be assurred you are doing much better now, than you were prior to 2015! your guessed kPa's are down near to the 14 range, LFT's are good, you are still being followed well, all good things - I dont't think anything bad will befall you - those nightmare stories you read about, with B reactivations, tend to culminate/fulminate during C treatment, not years after - i think you are doing dang good! Who (aside from your current consultant and the study nurse), were you talking to about your B - a fellow you mentioned, who made you feel better about things by pointing out your LFT's were good and a good rough guage to go by. 

There are a ton of other telling bloods that they would have drawn on you pre-trial and during the study that would be helpful telling info, such as other blood methods of assessing your levels of cirrhosis and compensation, and, you may never get all that data, but it would be a helpful trail of info to follow if you had more of the "befores" and "afters" - that kind of data will often underscore just how WELL you are doing now (comparatively)! 

At this very late date - (you), coming late to the "surprize" party of finding out you "technically' could have a B load, it IS a shock to hear and think about this, but being that it is so late now (after your C treatment), and with no dire complicating consequences shown during your C treatment, I think you are too late to worry or panic about B reactivation horror stories. Maybe all you need to know, now, is that your blood or organs may not be donate-able.

Let us know what more you find out please. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Thanks for the geno update. I inserted it into your signature, so it doesn’t get lost in replies. I wondered about your CAP score, because a reduction in steatosis relates to a potential kPa drop. That could be the reason your kPa Score has markedly improved over time. See If you can get the spleen measurements from your ultrasound. A previous and current CBC and liver profile would provide insight as well. That helps develop an overall picture of improvements.

It does sound like you’re doing very well though and the HBV issue is just something to keep an eye on. Beating Hep C should be considered a big WIN. One day at a time...



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Also do not think they recorded my CAP score during trial Gilead did not request it

and my hospitals scanner is the basic one that does not record CAP

Seem to recall being told I have a bit of a fatty liver also my spleen bounces up and down in size between 12.5 and 17 was high last visit am waiting on appointment for an ultrasound  now



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60 yo male cirrhotic fibroscan 23 base VL 105000 G2 alt250 ast 200 bil high started trial nov. 6 week results alt 32 ast 30 VL blinded other tests normal range



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Thanks for the replies and info my geno is type 2

Have been in contact with the research lab my old nurse rang me back they have my files she had a quick look confirmed that hep b pos would have disqualified me is going to inform professor who was in charge of trial and get back to me next week  wants to get all the info on the week a retest was requested but says even if reactivation happened more recently  it is most likely the epclusa  so they need to look into it 

Have been looking at hep b info unfortunately seems  reactivated-hep b can be bad news it seems need my panel results seems very complicated my hope is that the research center  will be the ones to give me the best info they are certainly easier to get hold of and faster to get back to me. 

My attitude is worst case scenario I feeling a lot better than before trial better quality of life so even if **** happens I have had a result 



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60 yo male cirrhotic fibroscan 23 base VL 105000 G2 alt250 ast 200 bil high started trial nov. 6 week results alt 32 ast 30 VL blinded other tests normal range



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I was kinda thinking along the same lines too Tig, his old CAP versus any new CAP info. - this too (any fatty liver) AND/OR just the presence of gall stones or GB disease (alone) may be good enough reasons for you to continue to have fibroscans and/or U/S's or other imaging repeated, "fibrosis/cirrhosis" is not the only justifiable reason your consultant has at his disposal (his bag of optional tricks up his sleeve) to get you further fibroscans or further U/S's or imaging done even if your health "authority" is saying you do not need expensive following due to a lessening in your post-hcv cirrhosis (or based on some "arbitrary" kPa level such as 14!!) - other disease processes/conditions (or investigations thereof), also happen to lend themselves well to fibroscan assessments, U/S scans and imaging! Like GB stones, GB disease, fatty livers, etc. C.  



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hi Mark,

I read back on your history and you’ve had quite the ride so far! Did they provide another CAP score on your most recent FS? A reduction in your steatosis could answer for the kPa reduction, too (in addition to fibrosis reduction). Interesting how all of these things are tied together. 

Can you specify your genotype for us, please? That’s the one piece of your history that’s missing. The Astral 1 trial was tried on all but geno 3 if my quick research holds true. 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi Mark,

I too was in one of Gilead's trials, mine (a later one) was Vosevi 8 weeks ending May 2016, yours was one of Gilead's early Astral ones in 2014. You kindly paved the way for me in your SOF/VEL trial, and I trialed SOF/VEL/VOX for others that came after me.

Isn't it just grand how well cured we were with Gilead's drugs.

BTW - I never did see in any of your posts, or in your signature line - what GT were you?? - am I just overlooking it? Just curious, I was a GT3a.

So, to your concern re: hep B positive? You need your "old info", so you can further clarify things for yourself - this new consultant, ask him for copies of all the "pre-trial hep B testing" they did on you (they would have done this basic hep A and B screening on you - just like anyone else who was NOT in a trial) to determine your B immunity status, this pre-trial testing would be the revealing info, showing where you were at (then) with your hep B - you will need to know whether they looked at "B surface antigen, surface antibodies, core antibodies" and what they determined your B status was then - also ask if (pre-trial, but subsequent to surface/core antigen/antibody assessment), whether they did a "B DNA" test on you.

After you have the baseline (pre-trial ) B status info (surface and core antigen/antibody info, and/or the pre-trial B DNA results), then you will be in a better position to do some further sleuthing (perhaps with the assistance of your your consultant), to gain a better understanding.

You may run into snags with requesting info as it was a trial, but i cannot see why they would NOT divulge basic B pre-trial assessment data (as everyone, trial or not, should be screened for same and be able to know the results). If they did pre-trial B DNA testing you should be privy to copies of those lab results as well.

Same for B DNA testing they may have done during the trial and or after - request of your consultant (office) to go through your records and find these lab testings for you and get copies of them.

True, you should be feeling reassured about having nice normal LFT's, and what appears to be dramatically reduced/improved Fscores, so do not fret.smile But you need the basic info, to establish clarity/certainty as to your B status (then, pre-tretament) and where you are at, now.

I am surprized (with being dx "cirrhotic" and with some documentation supporting prior higher Fscores) that Gilead did not put you in one of their "follow-up" (another trial) programs, which in all likelihood would have "routinely" given you at least an abd. U/S (and a fibroscan) perhaps as frequently as every 6 months (to perhaps annual), amoungst other routine post-HCV following. This would have nicely bypassed the health care system. 

I am a big believer in good thorough follow-up, it is a shame that the health care system makes people fear asking for frequent U/S's, or fibroscans, for fear of being penalized for simply wanting good and justifiable following. You need good following with your hx, which should include bloods, U/S's and fibroscans (in my book anyway). Here in Canada to be deemed "cirrhotic" they are still going by 12.6 kPa's and over to be in the F4 F score range.

Just a thought, ask your consultant if Gilead does not have such a "following" trial program for you. I am into my 2nd year now of a 5 year one they enrolled me in (for cirrhotics) and I am not cirrhotic now, nor were any of my averaged fibroscans higher than about 12.6 kPa's (pre-trial).

Yes, fibroscans (alone) are not infallible, but they are a very good easy test to keep having, a good indicator, same as all of your lab works and exams including re-assessments of your gall stones, and fatty liver levels, all are important and all need to be taken into account. Yup, your liver "firmness" in kPa's (if due alone to HCV fibrosis/cirrhosis) does seem to have decreased markedly since 2014, and could even be less than you know! smile Who knows, without repeated and ongoing assessments. If I had had a kPa of 23, and then a later one of 14, I would be ecstatic. smile  

We'll try to help you decipher the pre-trial B results if you can get copies of it. C.



-- Edited by Canuck on Friday 8th of June 2018 04:08:58 PM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Veteran Member

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Not sure if this is already a topic 

I had my hep c  treated on the astral one trial back in 2014  halfway through the trial there was a bit of a blip and I had to have a retest which is usually because of relapse but in my case it wasn't fast forward to last week and at the hospital that now sees me,my consultant started talking about my hep b !to say this was a surprise is a bit of an understatement as I had no idea I was hep b positive I had been told when I started the trial that I had a history of B but that was inactive  my consultant tells me my viral load is extremely low almost undetectable and that  I am probably not capable infecting anybody 

 Initially I was extremely upset and worried especially reading some things on the Internet about people going on to have liver  failure  and even death after reactivation however having spoken to a great guy from the hep b positive trust I am much more positive he told me to focus on the fact that my ALT/AST levels are in the teens mid twenties respectively and that that is the most important sign of where I stand at the moment with my liver 

I am waiting on latest results which will hopefully give me a better idea of where I stand just wonder if anyone else has any experience or thoughts on this issue?

on A separate issue I was discussing my fibroscan scores with thdp b advisor  they have gradually dropped from 23 to 14.5 over the years my consultant advises me not to have another test as if I drop below 14 the NHS guidelines would reduce my monitoring as I would no longer be considered cirrhotic and he does not want to do that based on a single test I had the adviser also told me that I as I have gallstones this could give an artificially high reading on my fibrous scan so it is possible I am not actually cirrhotic any thoughts

 



-- Edited by Marktq1 on Thursday 7th of June 2018 04:01:33 AM

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60 yo male cirrhotic fibroscan 23 base VL 105000 G2 alt250 ast 200 bil high started trial nov. 6 week results alt 32 ast 30 VL blinded other tests normal range

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