3 week vl and elevated ensymes/all/nygirl/wyntre

Hi, got 3 week vl back yesterday.  It is 1 million down from 8 million. Not a 2 log drop but still shows response.  The same blood test showed elevated ensymes, the alt had even gone up.
  Just wanted to pass that information along since there has been some dicussion about wether tx is working in the presence of elevated liver ensymes.

NY girl - I asked about such a low dose of riba (400/day) My nurse agreed that a higher dose is preferable but did not want to increase it due to low platlets.  My red and white counts are ok (11/34) but the platlets are 83. If they go below 50, which they have in the past, they would discontinue tx altogether per protocol.  I could not argue that.  Still scarey to think I am not tolerating optimal dose

Wyntre - slow response is response. At 10-11 weeks I think there is much hope of clearing and even if you don't perhaps you will have restored some liver function and gained some time for the new meds to be approved.  

[jmjm530]

They like to see at least a one log drop by week 4, but ideally non-detectible. You're on your way -- maybe -- to the one-log drop but doubt if you would be non-detectible in one week. What concerns me is your very lose dose of ribavirin -- 400 mg. Not a doctor, and don't want to comment on your plateltes, but if it were me, I'd try and get a second opinion on your riba dose ASAP. I just don't think they're giving you a fair chance at SVR with such a low dose. You should also be tested again at week 4 (day before your fifth shot) to make sure your viral load is still falling, especially in light of such a low riba dose. If you already missed the week 4 date, then ask to be tested the day before your next shot, or the day of your next shot, just make sure the blood is drawn before you do the injection. You also want to take the most sensitive test possible. Something like Quest Diagnostic's "Heptimax" that goes down to 5 IU/ml.

-- Jim

[jmjm530]

Again, I don't know much about platelets, but my understanding is that others have treated with platelets as low (or lower) than yours and without reducing ribavirin. In fact, I thought that if they reduced anything it would be the Peg for platelets, not the riba. So maybe your nurse just isn't as knowledgeable as she should be. Have you spoken to your doctor? I flagged Goofy and Mike, because I remember Goofy treated with low platelets but stayed pretty much full-dose riba, and I believe Mike might have had low platelets as well, can't remember.

-- Jim

[niceguy2007]

excuse me, but you need to increase your riba intake RIGHT NOW.

i have never heard of ribavirin reducing platelets...its the interferon that does that.

please get a second opinion ASAP.

[Cindy10]

My husband is on 1200 mg of riba a day and his platelets are 34,000. The dr will go to 25,000 before reducing meds.

[jmjm530]

You know, that's sort of what I remembered with other folks treating. Sally, you really got to talk to your doctor about this, not just the nurse. Or maybe get another opinion from a liver specialist (hepatologist). 400 mg/day of ribavirin isn't giving you the best chance of succeeding in treatment.

-- Jim

[mkeela]

I think ejoli has had problems with low platelets if I remember correctly. Maybe she'll stop in too. I don't think they reduce the riba either, but may be mistaken.

[nygirl7]

I really believe that the interferon is what reduces your platelets and not the riba. The riba will cause you have have a drop in your hemo - but then you are able to take procrit to help increase them again.

I really don't understand why your riba is so incredibly low. It really may hurt your chances.  If I was you - I would get a second opinion ASAP from a doctor who is really knowledgable in this field specifically.

I just hate the fact that your log drops really aren't up to snuff at all and that the doctor is going this route.

For you to have the two log drop pretty soon you will have to be at 8,000 and you are really pretty far away. If you don't have a two log drop by week 12 does the doctor intend to let you continue treatment?

This is a pretty serious situation and I believe you really need to see a second. a lot of us have seen one for one reason or another. Our regular docs are pretty good but - if you are having a problem and they are mistreating it (which I just believe they are here) it's worth it.

You do not have much time to get back on track and with such low riba intake you might not make a 2 log by week 12 at all. From 1,000,000 to only 8,000 is pretty far.

Please - consider seeing someone else.

[mikesimon]

My platelet count got to the low 20,000s - I think the lowest was 23,000 and no one said a word about it to me. I agree with NYgirl and always thought that interferon was responsible for the platelet drop that we sometimes experience with TX. We both could be wrong but that's my understanding. I believe that my team was more concerned with clotting time than absolute platelet count and maybe that's why I never heard anything about my low platelet count. Mike

[sallyo]

Thanks everyone, I am also concerned about the low dose riba.  Never was last time I treated but was also not as well informed and did not access this forem.
I suspect it would be difficult to get a second opinion from a hepatologist quick enough as a new patient to intervine at this early stage in treatment.  I have a call out to my nurse coordinators supervisior.  I have met her many times and I trust her judgement.
  These nurses work for hepatologists at a transplant university so I don't understand why they wouldn't be among the best educated on this treatment.  Still I beleive it is the nurses call and I don't see the doctor until next month.
   I will see what this other nurse has to say and will let you know.

[jmjm530]

It sounds to me also like your nurse is confused because my understanding also is that it's the interferon that causes platelets to drop. Still, based on what others have reported here, your platelets aren't low enough at this point to reduce even the infereron. If the nurse sticks with the low riba dose, I would request to speak with the doctor right away. If indeed you are on too low a dose, you don't want to remain on it one day longer than you should, especially at this critical juncture in treatment.

-- Jim

[GoofyDad]

May I ask what caused you to start on such a low riba dose, or were you lowered. I treated at a TP center too, and their protocol was to let platelets drop to 30 before discussing intervention. Intervention would have consisted of a temporary reduction in interferon. I stayed above 30, but there were some close calls. I binged around between 40is and 70is in slow up and down trends -  like a yo-yo with anemia.  

[wyntre9]

Yes, Sally.  I remember from the thread the other day that you had a transplant. My heart really goes out to you.

Could that be why your ribavarin dose is so low?.

Thanks again for flagging me, in the middle of your mini-crisis.

I appreciate it and I hope you get the answers TOMORROW.

Please keep us posted.

[mikesimon]

From my experience the coordinators don't prescribe dugs without the doctors' orders. They communicate the doctors orders where I am seen - they don't determine treatment. Mike

[sallyo]

Still awaiting a call back from the supervisor.  Just to clarify:  riba at 400/day is not a reduction.  I treated 70 weeks last time on 400 and was started this second time around on the same. Of course I did not become UND until week 70 ( 615 lower limit).  I stayed UND x 4 months but treatment was stopped due to pneumonia.

[jmjm530]

Sally: Of course I did not become UND until week 70 ( 615 lower limit). I stayed UND x 4 months but treatment was stopped due to pneumonia.
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I'm a little confused on the above. How many weeks did you treat last time and at what week were you non-detectible? You say you statyed UND for 4 months but didn't become UND until week 70. Doesn't read right to me.
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I think what concerns a lot of us -- and I'm even more concerned now realizing that this is your second treatment (first treatment failed) with such a low dose of ribavirin -- is that you are being significantly underdosed. And unless your doctors have a good reason not known to us, I personally would seek an opinion elsewhere. Also, the fact that they are still using a test that only goes down to 615 IU/ml, could suggest  they might not be up on the latest protocols, liver transplant center or not. May I ask how much liver damage you have? Again, I would demand to speak to the doctor on this and ask him why you're on such a low dose, and remind him that you didnt clear on the same low dose last time. Sometimes these doctors get so far removed from their patients that they totally lose track. I saw a pretty top doc, but always did a little recap in front of him with my stats before I asked him any important treatment decisions. The truth is that I wouldn't be surprised if half these doctors would fail a test if quizzed on the stats of the patients in front of them.

-- Jim

[sallyo]

What you read is correct.  I treated with Peg 180 and 400mg riba for 70 weeks.  I had one interuption in treatment near the end for shortness of breath.  I resumued treatment after about a month and got my first UND at week 70.  I became ill that same month and treatment was discontinued, vl were still done monthly and were UND x about 4 months and then resurfaced at around 6000. Had biopsy. Showed rejection and viral involvement as well.  Treated with medrol for rejection.  Then vl went to 7000, 8000, 325,000 and then 8 million.  Atthis point (4 weeks ago now) I was started again on Peg 135mg and riba 200mg bid.

[jmjm530]

You had to stop at week 70 then? How long were they planning on treating you if you didn't become ill? Was that your first treatment then? How much liver damage do you have?

-- Jim

[wyntre9]

Thanks for thinking of me.  I'm a little discouraged so I've put the numbers questions mostly on the back burner.

Lab Quest hasn't been sending copies of my bloodwork which has been just fine by me.

Yesterday, though, I did call the Doctor's office and made them read the VL.  It's down from start of 1,140,000 pre TX to 13,500.

The total log drop at shot 11 is 1.94.  That's almost 2.

Guess that will keep me in the picture for another 12 weeks.

After that, well, like I said at the beginning, I'm getting kind of discouraged.  

Plus I feel Soooo horrible and can't do anything and I'm beginning to think, as some others have pointed out, that having and living with the virus might be preferable to the SX.

My damage level is low.  Stage 1, Grade 1, Genotyoe 1A.

Thanks again, sally0

[sallyo]

  I was transplanted in Jan 05.  My vl was 80 million post op and I was on tons of immunosuppreants (sp).  I was started on treatment in April without a biopsy.  The first biopsy I had showed 2/2. That was on my new liver.My second biopsy was done about 2 months ago.  I have a copy of the results but no where do I see grade and stage.  I will ask my coordinator for an interpretation

[jmjm530]

Didn't realize you were a transplant patient. I really have no knowledge here other than Mike Simon I believe also treated post transplant and I believe he stated he stayed on full dose ribavirin. Whatever you do, I think it important you talk directly to your doctor and double check your riba dosage and history as opposed to just communicating with your nurse.

-- Jim

[nygirl7]

Said . Still I beleive it is the nurses call and I don't see the doctor until next month.


The nurse cannot order a reduction in any medication so she might be completely talking out of her rear. You would be shocked at how little they "specifically" know but might just learn in time.

You need to call the nurse and get an immediate message to the doctor saying just plainly "since Interferon affects my platelets why has my RIBAVIRIN been reduced? Please call me back today".

It's hard at first to speak to "doctors and medical professionals" with a stern resolution but it gets MUCH easier after you get used to it LOL.

You CANT take any more time here - your chance of SVR is getting mismanaged right out the window. I just can't breathe it gets me so upset.

[Jeff88]

Sally, the low riba is because of two reasons: 1) being post transplant and therefore on drugs lowering your immune response 2) riba's lowering the wbc,  not so much platelets.

Because riba lowers wbc, our immune system is weakened and because we all who are PT  take immune suppressive drugs, we can easily get a severe infection. In this case, the possibility for rejection is increased, so my Drs always told me that I cannot be treated with full dose (1200). The low wbc can be treated to a degree with other injections, your Dr has to weigh all the conflicting factors.

The question which bothers me is that with low (400) dose of riba, the chances of SVR are low...

The other question is can low riba plus full or half dose of IFN somehow keep the virus in check and be used as a maintenance to wait for better tx's? Drs seem not to have answers to this, but some do think that this may work as maintenance. Good luck to you. Btw, I don't understand the numbers you mention about your red/white blood cells (11/34), they are usually in much lower range...

[sallyo]

Thanks for the comments.  First I want to correct a mistake I posted the 11/34 is the H&H NOT rbcs and wbcs.  My white count has indeed been low and I am taking neupogen.  I understand what you are saying about the maintenence treatment and I have heard that theory.  What gripes me is that if that is the intention I wish they would be upfront about it so I would not be looking for SVR.  I know I need to ask more questions but the first time around I did not know what to ask.  I assumed I was treating to acheive a cure. Now I know that svr would just be a bonus.

[BThompson4]

How is you creatinine level?  I have seen studies of post-transplant tx that suggest that high creatinine levels cause ribavirin levels to be high relative to the dose for a person with good kidneys because riba is cleared mostly by the kidneys.  High creatinine levels are pretty common post liver transplant.

One study had this conclusion:
The results from this study suggest that the anaemia induced by ribavirin depends primarily on the concentration of ribavirin, and not on the dose per kg body weight. This lends further support to the idea that ribavirin should be dosed according to renal function.
(Evidence that plasma concentration rather than dose per kilogram body weight predicts ribavirin-induced anaemia."  J Viral Hepat. 2004 Jan;11(1):84-7)

I am in week 37 of treatment 1200 kg/day.  Did not clear until week 22, and don't know if I ever would have taking much less than 1200 kg/day.  I have good kidney function, though, six years post transplant, at 1.1 creatinine on nearly every blood test.  

I just went in for a biopsy because they fear I might have developed cirrhosis while on treatment, although I can't for the life of me see how they came to that conclusion with my lab numbers (ast 75; alt 104; bilirubin 3.1; inr .95; albumin 3.9; platelets 166k, down from 190k at beginning of treatment).  Those numbers in the Halt-C calculator give only a 25% chance of cirrhosis.  Anyway, they said they may "modify" my treatment if my liver is in bad shape, which sounds like a maintenance dose.  Had biopsy Tuesday, and no news except on ultrasound (everything normal), so maybe biopsy was ok.