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Avatar universal

UND, but...

I was UND (<5 Heptimax) at week 24, 28, 32.
Then at week 36 the VL came at 33. Today I got the 40 wks results, UND again (<5).
Not sure what to think about the bump at 36 weeks.

Does anybody had a similar jump? Did it affect the SVR?

GT 1b, had transplant 5+ years ago, 180 peg/1000 riba, 163 lb now.

Jeff.
24 Responses
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Avatar universal
Now you're weighing in on treatment post liver transplant. Man, you're sharp and we're lucky that you have so much time on your hands. Your Baghdad reference was very insightful but you did misspelled Baghdad.  Hope that helps.  Mike
Helpful - 0
233616 tn?1312787196
besides the obvious thing that the reason we are made to stay on tx so long is to gather up all those rougue hiding cells, ther's also the possibility that even though UND for a while, you could have got a cold flu or other mild virus, even a herpes outbreak...anything like that, and you could set off whatever few cells were left to regaining a foothold. since you can see changes extreme in only days, it follows if your immune system gets an extra tax..that could set off your 2 viral cells left to trying to regain Bagdad so to speak.
I wouldn't worry about it, just do the whole 48 weeks if at all possible, there is a reason for it, if anything shows up again do the 72 wks, better that than to go back to square one.
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Avatar universal
BThompson4/Jeff/Mike,
I missed the replies to this thread. I only want to say that I feel tied very closely to you all  and want so badly for you all to get clear of this disease. Before my transplant I didn't know anything - I thought the transplant would cure me and that hepatitis would be a thing of the past. Please each of you keep us updated. Be well all of you, Mike
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Avatar universal
Thanks a lot folks, every bit of information helps.

I will just take it as a fluke and keep going.
Best of luck to all. Jeff.
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Avatar universal
Hi Jeff, I wish I had some settling news for you.  I had an UND at week 12 then at week 27 the study used the same blood and re-tested all PCR's at another lab.  Week 12 came back a weak 32 IU's.  I started a thread and had 2 common responses, either a false positive or good luck.  I couldn't extend tx if I wanted to because of the study protocol so I stopped at week 48.

Like BT I have not had any rejection issues.  My biopsy before tx showed mild portal inflamation and read the same post tx.  During tx they cut my Prograff and Cellcept in half.  After tx they took me off of Cellcept and returned my Prograff to pre-tx level.  

Pre-tx my alt/ast were both around 100.  5 weeks post now they are13/15 or as mike simon called them "drop dead gorgeous," and btw mike simon my study coordinator calls them that now!

Good luck to you Jeff, keep on truckin!  You too BT.

mike
Helpful - 0
Avatar universal
I was transplanted almost seven years ago and have never had a sign of rejection in my biopsies and have not had any boluses or anything for rejection.  When not on tx, I take only 50mg of cyclosporine twice a day.  My liver numbers were all normal (ast and alt in the twenties) for 18 months after transplant, at which time the hep c hit hard.  I see my doctor the day before shot 72, and will ask about cyclosporine dose.  I think he is going to ask me to extend, since he thinks I am doing so well on tx.  I have enough peg for 74 weeks, so I might go that route.  No way I am going farther, though.  I am sick of not being able to walk much and my muscles ache like they did pre-transplant when albumin used to run about 1.8.
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Avatar universal
What happened to me was:
I treated for 73 weeks and stopped TX in June 2004 = SVR
At that time I was on 2 mg Prograf per day.
In May 2005 I wrecked my bike and my Prograf dose was increased to 3 mg per day.
In February 2006 my Prograf dose was reduced back to 2 mg per day.
In April 2006 my Prograf dose was reduced to 2 mg every other day and my ALT/AST started to soar.
June 3, 2006 I was biopsied and it showed 30 IU/ml hepatitis C.
June 6, 2006 Prograf dose increased to 3 mg per day and started half dose Pegasys. I think that my surgeon was using the shotgun approach with me - he was taking steps in case I was rejecting and/or attacking the tiny bit of HCV in my liver and trying to control the HCV in case that was the problem or limit fibrosis progression which might result from my immune response to the HCV.
ALT/AST settled down and I discontinued Pegasys December 22, 2006.
I've  tested negative on Heptimax monthly since I first cleared in April 2005 and am still testing undetectable as of 2 weeks ago.

My surgeon told me that in his experience when every trace of HCV is eradicated in transplant patients (which is uncommon - BTW, he doubts more than 25% in the non transplant population eradicate every trace) they often have rejection issues. His line was "maybe a little HCV is good for you - it may have immunosuppressive properties".  I think of it as when there is absolutely no trace of HCV for the immune system to keep its eye on it starts looking at the liver too closely and decides that it doesn't belong. That certainly isn't very scientific and it may not be at all accurate but this stuff gets too complicated for me to scientifically analyze.

When I look back at my history I question whether I really was rejecting during those times when I was treated for it. The biopsies slides of HCV and acute rejection are indistinguishable and at that time I believe the practice was that if it was proximate to the transplant they'd call it rejection and if it was more than a certain length of time post transplant they'd call it HCV reinfection. Like I said, this stuff is mysterious and way too complex for me to thoroughly grasp.

The Solu-Medrol is basically just prednisone but a gram is injected in about one half hour so the immune system is really flattened and there can be adverse consequences. I think the approach they used with you might be a better way to go but it is possible that I was in real trouble and there wasn't time to go slow. I know my surgeon was very concerned at one point and mentioned that I might develop cholestatic hepatitis the next day but since I didn't know how serious that situation is I wasn't worried. I was happy that I didn't feel like I was dying so I thought all was fine. I didn't get cholestatic hepatitis anyway so all was fine - sort of.

Sorry for the length of this post. Mike
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179856 tn?1333547362
IT's a false positive for certain.  It happens a lot.

It happened to me at my post tx 3 month test.  Count of 60.  The doctor said that number was not logical and it made no sense to come back test in a month and he was sure it would be UND again.  He was right and I am SVR.

PS There is no data to support going past 72 weeks.  I had personally wanted to do 60 and the doctor said nope it's 72 or nothin cause that is all that we've data on...so if they don't let you go even LONGER don't freak.  Just make sure you do the 72.

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Avatar universal
My rejection was in 2004,  immediately after the end of the 8 mos unsuccessful tx (only 400 mg of riba). It was a mistake of my surgeon who decreased my anti-rejection meds by a factor of three after I stopped tx! My new doctors keep repeating about the danger of rejection after completing the tx, as the immune system boosted by IFN may start atacking the new liver as the virons disappear. They say it may happen during the tx as well, after the VL becomes undetected and there are less targets for immune system to atack.

If I remember correctly, you mentioned that your surgeon actually increased the anti-rejection meds in the middle of tx along with increase in riba. It makes sense given the above theory. I wonder what indications he used to decide for such AR meds increase. As I wrote above, my AST/ALT jumped from 45/35 to 80/50 when my VL became UND. The hepatologist I consult in San Diego, wanted to check if this was a sign of a weak rejection, so in September he doubled the dose of Rapamune to see if this will reduce AST/ALT. It didn’t and I am still waiting for his decision.

It is interesting how they managed your rejection episodes. I never heard about Solu-Medrol, they treating mine with a month of prednison (starting with 20 mg and decreasing to 5 mg after 4 weeks), as well as increase in prograf to 6 mg/day. (OK, I googled it, it is also some sort of steroid).

I wonder if BT’s doctors plan to modify his AR meds after he stops tx in 2 wks?

Thank you much for your thoughts Mike. The very best to you. Jeff.
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Avatar universal
I apologize if I mentioned this already but, I had 2 or 3 rejection episodes. It's strange that I cannot recall exactly how many but I do know that I was treated with bolus intravenous injections of one gram of Solu-Medrol for all of them. I didn't reject while on treatment which seems strange to me and especially so in light of the fact that I treated for such a long time. So despite having rejection episodes before treatment and between treatments the HCV treatment iteself never triggered one. Another peculiar aspect is that bolus injections are thought to be a negative predictor for successful HCV treatment and yet I am an SVR. This transplant stuff is mysterious indeed. I wish you the best Jeff. Mike
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Avatar universal
mremeet: the possibility of rejection is real and puts a limit on   experimentation with new strategies. I went through a rejection once and all hell broke loose. That's why slow start with riba, etc.

BT: only two weeks left! The very best to you! Praying for your SVR.

wyntre: thanks for encouragement. I am not particularly worried, this is my 5th tx and if not this time then next with PI I will get there!

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173975 tn?1216257775
During the past 45 weeks of TX I've had several tests suddenly spike.  One was a PCR that showed a VL increase of 10,000+ somewhere between weeks 10 and 14.

Another was a huge spike in HgB from 11 to 15.5.

There have been a couple of other 'blips' and in each case my Dr. seemed convinced it was a 'lab' error and in each case, the next test proved him right.

I'm not gonna say don't worry, but the numbers you cite are statistically very small.  Any viron is a 'bad' viron but, just passing on what my Dr. has said, I wouldn't get too stressed, especially since you're once again UND.

wyntre
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Avatar universal
From my last post:  "All were UND (<25) except one for week 55 which came back as 43 Iu/ml."

Meant to say that all were UND except one since week 22.  I am a slow responder, so am going 72 weeks.
Helpful - 0
Avatar universal
I am in week 70 of tx (also geno 1 and post-transplant) and have had many pcr's, one every two weeks since week 10.  All were UND (<25) except one for week 55 which came back as 43 Iu/ml.  At week 50 I had a bad case of poison ivy which I think really stressed out my immune system, so I would not be surprised in the 43 was accurate.  Puts a lot of doubt in my head about getting svr, but no way I could stop based on only one positive.  Probably should extend another 20 weeks or so but I am way too weak for that.  I have lots of improvement in fibrosis, from F2 to F0 or F1 at week 36 biopsy, so I will probably be able to retreat for a shorter time period when the P.I.'s are approved.
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Avatar universal
You might want to look into possibly taking Alinia too. Alinia is a drug that's used to treat parasites that's already on the market and FDA approved. It's been tested in a limited scope on hepatitis C patients (dosed with IFN+riba) and demonstrated good antiviral performance, although no fully fleshed out SVR data is available yet to my knowledge. But it looks promising and it may be a powerful adjunct to SOC. Plus it has a very low toxicity and side effect profile, so it shouldn't add to your treatment misery. Anyway, something to think about if you're looking for a little extra SVR insurance.
Helpful - 0
Avatar universal
Jeff: "... was UND (<5 Heptimax) at week 24, 28, 32.
Then at week 36 the VL came at 33. Today I got the 40 wks results, UND again (<5). the first 8 weeks were on IFN only, then riba was added. VL was down to 90K (from about 3-5 mln) after 1 mo, then increased to 120K at 2mo (no riba!), down to 10K at 3mo, 1400 at 4mo and 80 at 5 mos.  About 6 months into tx, AST/ALT jumped from 45/35 to 80/50 and that’s where they are now. No significant change in enzymes during the VL blimp at 9 mos.
------------------------------------------------------------------------------
Interesting. What was the reason they didn't start you with ribavirin? Possibly a reason for your possible 'breakthrough' that hopefully was just a false positive.

I have no idea how to factor your transplant into the equation , but based on the numbers above, you were still detectible at week 12  which normally suggests extending treatment to 72-weeks for a decent chance of SVR. In fact, you were still detectible at 5 months which could suggest even a longer extension depending on how your transplant team sees the risks versus rewards. But sounds like you and your transplant team have  already come to that conclusion. And I assume, given your transplant, that you do have a crackerjack hepatologist and/or transplant team supervising all this? And one question of the day is are you really a slow responder (for extension purposes) if you didn't take your riba, or does it have to be looked at differently? Not sure anyone has the answer here in this disease with more questions than answers.

One thing I think you want to do  is to test monthly from here on out to make sure you are remaining UND. Heptimax is a good test, but for your purposes you might ask your doctor to rx you Quest's "HCV RNA TMA QUALITIATIVE". Just as sensitive as Heptimax but less false positives, so a birdy told me. I switched from Heptimax to that test post treatment.

All the best,

-- Jim




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Avatar universal
Thank you all for your thoughts and encouragement.

Tallahassee: I definitely plan to go for at least 72, may be more if I can tolerate. I asked docs several times to increase riba, but they are not eager due to transplant situation.  

Jim: My hemoglobin is now at 10.7, wbc 1.7, platelets at 40, no rescue so far, but I see it coming. I didn’t have dose reductions. Actually, my treatment was not quite standard, the first 8 weeks were on IFN only, then riba was added. VL was down to 90K (from about 3-5 mln) after 1 mo, then increased to 120K at 2mo (no riba!), down to 10K at 3mo, 1400 at 4mo and 80 at 5 mos.  About 6 months into tx, AST/ALT jumped from 45/35 to 80/50 and that’s where they are now. No significant change in enzymes during the VL blimp at 9 mos.

The reaction of my doc was similar to Mike and Jim  - may be a false positive. He said they see this happen with Heptimax and even suggested to go back to PCR, despite all said about the need for the most sensitive test. Why? I guess if it was a breakthrough I would now have VL numbers in thousands or millions.

The problem with tests that nobody knows what happens when it goes below 5. Does it stay at 1? At 0.1, one hundreth, one millionths? How low it should be in order to get SVR?

If the rate of killing is constant, say 1 log per month, then after being UND for 3 months, one can assume that the VL should be less than 1/1000. I do hope that this is a fluke. If not, then indeed it is an indication that I need to go for another 40-48 wks, I probably will not be able to tolerate this and hard  to continue to poison myself given all the uncertainties of the test. So, it is not clear how actionable this information is in my case. PCR may indeed be better for the peace of mind.

Thank you all for sharing your experiences and best of luck to you all. Jeff.


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Avatar universal
Myself and another friend (Charlotte) were in the Vertex VX-950 trial and we received rapid blood draws checking for the absorption of the drugs at various intervals (a phamacokinetic or "PK"). They gave us a PK on the first day of dosing, and then they gave us a PK at 12 weeks just prior to stopping the VX-950. The blood was drawn approx once an hour for about 4 hours (don't remember the exact intervals offhand, but that's a reasonable approximation). Anyway, for the 12 week PK all 4 of my VL results were UND (<10 IU/ml). Charlotte's PK indicated she was UND for the first two and then on the 3rd she was barely detectable with a 29 IU/ml, then she was negative again for the last one. She had also been UND for every test prior to this starting at about week 3 (i.e. UND from week 3 thru week 12). She subsequently tested UND afterwards for the entirety of her treatment (lasting 41 weeks) - including a few after she stopped tx as well.

Anyway we discussed the likelihood that she actually had tested positive at that "29" on her third PK draw. In order for that PCR to have been accurate the virus would have had to be juuusstt UND on her first PK point (prior to taking the IFN+riba) and then jusssst UND an hour after taking the drugs, and then the virus would have to had multiplied while the antiviral drugs were increasing in her bloodstream and then the the virus would have to have "died off" and dropped to UND levels again. And it would had to of kept its head juuuuust under the 10 IU/ml radar for months prior to that point and also not re-emerge afterwards for the remaining 41+ weeks either.

Does that make sense to anyone? Sure seems *extremely* unlikely that the virus could replicate and surge above UND levels on hour 3 right after gulping a bunch of riba and taking an IFN shot. Especially when viewed within the remaining UND PCR context both well before and after. Our conclusion was that it was a weak false positive. I've heard of other people getting apparent false positives as well, especially after treatment. I think it happens more often than we think. But jeff I suppose you're taking some form of immunosuppressive therapy for your transplant? I've always heard that transplant recipients have to take drugs to prevent rejection, although I really know very little about it. But if you were taking something like that, I could see where it might blunt the full effects of SOC and possibly play a role in causing a blip on the radar somewhere along the line.
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Avatar universal
I had something similar. After 52 weeks of a planned 72 week treatment, the Heptimax came back at 62. But, a simultaneously TMA run on a second sample came back undetected <5. The next 4 HM all came back UND, and I completed treatment. There was no spike in enzymes, but they were consistly in the upper limits of normal.

Of course, I don't know what this "blip" meant; I am just 2 weeks post treatment now. So it could mean nothing, or something. A mystery.

Mark
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Avatar universal
My enzymes were in normal range throughout of 98+ weeks of treatment, but it was high-normal range ~35.

Interestingly, two month prior to completion of my treatment, enzymes were reduced to ~18 units.  ... I still have the same low levels.  

Now, in hindsight, I think, I could stop my treatment two months earlier.
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Avatar universal
I guess the other question is if you saw an upward movement in enzyme levels in that same blood draw.
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Avatar universal
I was in a similar situation. My low viral level showed up after 10 months of daily Infergen (and being negative from week 12).  Two-three weeks after that viral levels were again UND (<10U).  It was presumed that I still had low virus levels after 10 months of treatment. I asked to extend my treatment for 1 year after the latest UND.  If you possibly can tolerate it, I would suggest to extend for 48 or at least 36 weeks after your 40th week UND (assuming you will not have more viral load showing ups).

I actually asked for increased dose of Infergen after 10.5 months of treatment (from 15 mcg to 24 mcg, later the dose was reduced to 18 mcg of daily Infergen).  So may be you can increase your dose of Interferon for at least a few weeks. Oh, I weight 110 lbs, but I was taking 1200 - 1600 mg of riba (increased from 1000 mg).

Most importantly --- you are responding! All the best!!
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Avatar universal
Pretty much agree with Mike on this, and have heard of some false positives with the TMA portion of Heptimax, but nothing solid, just anecdotally. Curious, did you test before week 24 and if so, what tests did you use and what were your results. Also, did you have any dose reductions (peg or riba) during treatment? Lastly, what was your pre-tx hemoglobin and what is it now? If you're tolerating tx OK, and not too anemic, maybe speak to the doc about bumping up the riba to maybe 1200.

-- Jim

-- Jim
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Avatar universal
We've seen a couple of people here have undetectable results and then show a VL and then get back to undetectable. I really don't know what to make of it. Is the test with the VL an error - is it a spike which disappears - is the undetectable test an error or WTF is going on? I really don't know but since I am an optimistic guy I would chose the best scenario and stay with it until it was proven conclusively to be wrong.  I wish you the very best Jeff and I think you'll get it. Mike
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