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Avatar universal

Viral load testing

I was recently dx'd with Hep C (geno 1a, liver bx grade 1/stage 1) and I am to start tx within the next week or so.  My doctor did not test my viral load numbers and I am somewhat concerned about that.  He said the test is so expensive that it's just not necessary.  Everything I have read points to knowing your viral load numbers to determine the length of treatment necessary (48 weeks or even 72 weeks).  Should I question my doctor again about getting a viral load number test?  Basically, he said that all he needs to know if if I'm clear at 3 mos or not.  If I'm clear I can continue tx and if I'm not clear at 3 mos I will have to stop tx.

I just don't want to get to the 3 month step and find out that a certain test should have been taken in order to better determine the length of my tx.

Your input would be appreciated.
24 Responses
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526961 tn?1213063601
Yea ditto, ditto all the above. I saw three docs before I stayed with my wonderful, cool hep team at Kaiser in Honolulu. They are on it like crazy. The first two...one was a GP who just said "lets do this!" and I said "whoa, whoa, wait a minute" because something didn't feel right. The second was a gastro who said "no need, just come back annually" and I said whoa again. With these guys everything has felt great and I feel very informed through the whole process. They call me weekly just to see how I am feeling and keep me posted of all the new research and what my choices and options are. And most importantly, they are funny as hell and keep everything on a positive note. So...if it feels not right, it probably isn't...get a second opinion. Aloha
Helpful - 0
408795 tn?1324935675
Good for you changing to a doc who will work with you, with a virus like HepC you need someone who is on your side period.  He don't believe in the 2log. drop?  Oh my, what an arrogant dipwad!!  LOL  You and I are about the same, I'm a geno1A with a grade 1 and a stage 1.  I have an appt. in July so I'll be txing soon as well.  Here's to wishing you the best.  God Bless
Helpful - 0
446474 tn?1446347682
"he doesn't believe in 2 log drop thing"...
He probably wouldn't believe your side effects either!

You just did the most important thing you can do for yourself when treating.
Get a good doctor who will isten to you and manage your care.
You just took a major step in the right direction. Congratulations!!!

Hasta la vista Señor doctor!

Hector
Helpful - 0
476246 tn?1418870914
I am really relieved for you, that you switched GI's. It has been nerve-wracking just to follow the thread. Cannot imagine how it was for you. It is great that you can take your life into your own hands! You will be kicking that dragons a$$ soon enough! All the best, Marcia
Helpful - 0
Avatar universal
One more thing...

Even though he did the PCR testing on me to determine that I do indeed have Hep C, it is my understanding that there are 3 separate PCR tests; one for qualitative, one for quantitative and one for typing.  He did NOT do the quantitative on me because he doesn't believe in 2 log drop thing.

I'm so glad I took the time to search this out.  Thanks to all!

Helpful - 0
Avatar universal
I think you have made a wise decision to change doctors.  If he lacks such basic information about SOC as the value of a baseline VL number then he may have other serious gaps in his information.

Its well worth postponing the start of tx.  Good luck with your new doc.  Keep posting and let us know what happens.

jd
Helpful - 0
Avatar universal
Thanks for all the information.

Oh...the ophthalmology baseline - that was never mentioned by my current GI doc either.    Anyway, he's currently history in my book.  I've got the wheels in motion to see a new GI doc but it'll be several weeks at best...and I'm okay with that.

Helpful - 0
Avatar universal
"meakea -- I am really curious  --- A lot of GI's won't suggest a biopsy due to the cost.  However, yours appears to -- how else would you know you were a Grade 1, Stage 1?  but at the same time, he can't justify the cost for the viral load test?  Does not make sense to me."

It doesn't make sense to me either.  Yes, I had a biopsy, which was my choice.  I questioned my GI doc specifically about the viral load test twice (once at two different appts) and he said both times that it is very expensive and all he cares about is that a patient has to be negative for virus at 3 mos and that he doesn't care about the 2 log drop stuff - it has to be negative in order to continue treatment at 3 mos.  He has me set up for the following post treatment blood work:

1 week:    CBC
17 days later:   CBC
1 month     CBC
3 mos        CBC, liver panel and Hep C - PCR

That's all the blood work he intends to do...period.  

I just returned from signing a medical release for a new GI doc to get my records from my current GI doc so I can switch over and I canceled my appt with my current GI doc that was scheduled for Friday.  I see no reason to stick with current GI doc.  Even if he were to agree to do the SOC baseline and f/u labs, etc. I would still feel like "what else is he missing."  I'm putting my tx on hold until I see the new GI doc so don't miss out on important baseline tests.


Helpful - 0
443757 tn?1217551190
Im Geno 1a, dx'ed last August.  My doctor actually used a blood test called FibroSure to check my level of fibrosis.  He said it show very minimal damage and my baseline VL was only 200,000.  Much cheaper and less invasive than a biopsy, and according to him only a hair less accurate.  But I am only 27 so I'm sure he wasn't expecting Grade 4/Stage 4 or anything, so maybe a biopsy is needed for more involved cases.  Im now on week 21 of 48 and was UND by week 8.
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179856 tn?1333547362
That should keep you busy for a little while and get you set in the right direction.
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179856 tn?1333547362
Sanchez Tapias
http://lib.bioinfo.pl/auth:S%C3%A1nchez-Tapias,JM

http://www.natap.org/2004/EASL/easl_06.htm

Undetectable hepatitis C virus RNA at week 4 as predictor of ...CONCLUSION: Undetectable HCV-RNA at week 4 is the best predictor of curing chronic ... Ribavirin/therapeutic use*; Spain; Treatment Outcome; Viral Load ...
www.ncbi.nlm.nih.gov/pubmed/18090387 -

Assessment of HCV RNA at Week 4 and Week 12 Optimizes Prediction ...Nov 20, 2007 ... HCV RNA level (viral load) prior to treatment is an important ... At week 4, the PPV was defined as TMA undetectable or >2 log drop from ...
www.hivandhepatitis.com/2007icr/aasld/docs/112007_b.html - 17k -  


Assessment of Virological Response at Week 4 and at Week 12 ...In all patient groups, the PPV of undetectable HCV RNA at week 4 was 96% to 100% ... Non-EVR: TMA detectable or <2 log10 drop in viral load from baseline at ...
www.natap.org/2007/AASLD/AASLD_61.htm
Helpful - 0
179856 tn?1333547362
Here's a good one with graphs done in powerpoint
www.lsge.org/events/gastro2005/EASLUpdate2005Beirut/Difficult-to-treat%20HCV%20disease.ppt -


www.natap.org/2006/AASLD/AASLD_34.htm - thats the one most of us used to do the research with as Friole told you.

Here is one on the Teravic 4 study.  18 months treatment versus 12
www.natap.org/2004/EASL/easl_06.htm

www.medscape.com/viewarticle/495211
The TeraVIC-4 study[12] evaluated the treatment of patients whose 4-week on-treatment HCV-RNA was positive, for a total course of either 48 weeks or 72 weeks of continued therapy.* All patients were treated with pegylated interferon alfa-2a at a dose of 180 mcg per week plus ribavirin 800 mg per day; 327 patients were included in the analysis, and 90% were genotype 1. The end-of-treatment response in the group receiving 48 weeks vs the group receiving 72 weeks of therapy, was 61% and 52%, respectively. The sustained viral response rate in the group receiving 48 weeks vs 72 weeks of therapy was 32% and 46%, respectively. The relapse rate in the group receiving 48 weeks vs 72 weeks of therapy was 48% and 13%, respectively.

The study authors concluded that the increased duration of therapy in this select population resulted in an increase in sustained viral response rate and a decrease in the relapse rate. Although this study is interesting and supports longer duration of therapy in this group of patients, one cannot help but wonder if the ribavirin dose used in this study was too low. Because higher ribavirin dosages have been shown to decrease relapse rates, perhaps the same effect may have been achieved with higher ribavirin doses for a treatment period of 48 weeks. Although there were no increased adverse events noted in the group treated for 72 weeks, the investigators do not comment upon the quality of life of these patients during this treatment period.

Berg and colleagues[13] also looked at relapse rates in patients treated for 48 vs 72 weeks with pegylated interferon alfa-2a 180 mcg/week plus ribavirin 800 mg per day. This study focused on the late virologic responder, which was defined as those patients whose serum HCV-RNA was positive at 12 weeks but became negative at 24 weeks. In this particular population, there was a significant reduction in relapse rates when treatment was extended to 72 weeks. This study supports a longer duration of therapy in this patient population. However, as in the TeraVIC-4 study,[12] one cannot help but wonder why a higher dose of ribavirin was not chosen as the baseline dosage.
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179856 tn?1333547362
"The only downside is that it will delay the start of my tx by several weeks or a month but it's better than starting down that path without the proper testing. "

Don't worry about the few extra weeks.  It's WAY more important that you get a good doctor and one you can TRUST. My tx was stalled by a few weeks because the doc forgot to tell me that we need a baseline opthamologist exam BEFORE we can start treatment.....and I was SO MAD!  I was livid! I had to WAIT!

Well everyone in here told me not to sweat it and of course I did...in the end they were right. you'll be on treatment for a long long time and it doesn't matter at all when you start.

I don't know if I've read anything except the abstracts either. Mostly I wouldn't understand any of the study stuff anyway but let me see what I have saved. The real point is that all you need is to read the RESULTS of what the study shows...and thats in english instead of hyper medical speak which means squat to me still to this day!
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223152 tn?1346978371
ds1182 ---

http://www.natap.org/2006/AASLD/AASLD_34.htm

Not the Berg, but discussion of the 72 weeks.  Not sure if the entire Berg is available on the web --maybe just the abstract -- but I will look.

NYgirl - do you know?

meakea -- I am really curious  --- A lot of GI's won't suggest a biopsy due to the cost.  However, yours appears to -- how else would you know you were a Grade 1, Stage 1?  but at the same time, he can't justify the cost for the viral load test?  Does not make sense to me.

You need to know there are viral load tests and there are viral load tests.  The SOS (standard of care)  is a test accurate to the low value of about 50 IU(international units) per mL.  This test is okay for your first test, but I recommend you do your homework for the rest of the testing.  Find out which lab the new doctor will be using.  The common ones are LabCorp and Quest.  LabCorp's QuantaSure does down to 2 IU/mL and Quest's Heptimax goes to 5 IU/mL.  Yes, the cost a lot more, but what your payment is depends upon your insurance.  THroughout my treatment, I had to check my benefits and reassure my GI that what I requested would be paid for.

frijole
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Avatar universal
Hi, I looked for the berg study can't find it.  Can you post the link?  My enzymes just went up for the 1st time in 10 yrs. ast 66 alt 63 a bit unnerving... going for liver biopsy in the near future.  Geno type 1 don't know if i'm aor b.  VL 6.5 so still on the low side still.
ds1182
Helpful - 0
Avatar universal
Thanks again to you all.

I checked with another GI office in this area and their treatment protocol is to check baseline VL and at 4, 12 and 24 wks so I scheduled a face-to-face appt w/my current GI doc for Friday and I'm going to go over this in detail with him (with the help of the studies nygirl7 pointed out to me as well as the information you all added) and if he doesn't get into gear with it, I'm jumping ship and I'll switch to the GI office that does the standard treatment protocol.

Luckily, my husband had his colonoscopy done at the other GI office so I have somewhat of a connection there and an appointment won't be too far out if I have to go that route.   The only downside is that it will delay the start of my tx by several weeks or a month but it's better than starting down that path without the proper testing.

I have gained strength from you all...thanks so much!
Helpful - 0
Avatar universal
Hepatologists are liver specialists as a subspecialty of gastroenterology. They are not specialists in treating HepC. In fact hepatologists are rather rare and will be found only in larger cities and research centers. Besides, even the best in the business use nurse practitioners extensively. The protocol is quite straightforward; it isn't rocket science and only requires the deeper skills when serious complications arise.

Anyone claiming that you must be treated by a Hepatologist is simply misinformed. Gastroenterologists as well as Infectious Diseases specialists are also qualified to treat. The key is to get someone that focuses on treating HepC and keeps up with the research.

Finally, it is apparent the treating doc is not current with the latest thought leadership. The actual criteria at week 12 is a 2 log VL drop, which he can only know if the baseline VL is known.
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179856 tn?1333547362
Oh yeah - make sure he understands that MANY people are now using all of that research and it's becoming almost a standard of care at this point that people not UND at 12 but UND by 24 ARE doing 72 weeks with GREAT success!

He might think the studies are just out there but nothing is going on...he needs to know that many good top hep docs are using all of that information already to treat their patients.

If he doesn't believe it - tell him to google up Ira Jacobson or another one of the leading doctors.  Then RUN LIKE HELL and get to somebody else!
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179856 tn?1333547362
Don't worry...a lot of us have had to come to the conclusion that us heppers are VERY strangly obsessive and in fact learn much more than the doctors we go to know. Mostly it's what I think of as "GI Syndrome" they know a lot about a lot of things and it isn't a specific thing to what we have.  We all really need good HEPTOLOGISTS who do nothing but treat hep and learn all the most current things they can to help us.

Believe me the difference between a GI and then going to a Jacobson or Schiff is so unbelievable it's impossible to write it all down and have anyone understand.

My doc was a good guy and I liked him but honestly at the end he said "you know much more about this disease than I do" and in fact it was true.  But he was a GI and knew a zillion other things aside from JUST hep.  The good thing was it spurred him on to learn and start to read the journals again. So it helped the NEXT patients.

So try to remember as much as you don't want to "hurt his feelings" they do need to be gently prodded so that he understands there are giant things going on with this disease these days and it's HIS job to really keep up learning them for HIS patients.

Sad we have to really do the leg work but..........as long as it helps who cares!

And remember - you are in the right here.  Better to find out NOW that he's not going to be willing to learn and get somebody else than to find out later when something happens and he can't help you because he doesn't know how.

deb
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Avatar universal
Thank you all for your prompt responses.  I'm glad to find that I'm not off the wall in my thinking.

I just called and made an appointment to see my GI doc on Friday so I can present this information to him.  (nygirl7 - thanks for the specific studies).  I need to get over my fear of "hurting his feelings" and just get to the bottom of this.

He's not a hepatologist; just a GI.  He told me he treats hundreds of Hep C patients so I figured he was on top of the game.  With these studies in hand, I can talk to him with what I know to be legitimate concerns and not feel like I'm an arm-chair-football coach.

I appreciate everyone's time and input...truly I do!
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Avatar universal
I also am a Geno 1a it is the harest to eradicate. When you start tx you always start with blood work which shows your ALT, AST, VL these are all used as a baseline to check against your blood work that is taken monthly. You need to be seeing a Hpatologist they deal directly with Hep C.One more thing Geno 1a take a bid longer to respond to treatmemt because its a bugger to get rid of. My first month of treatment showed a drop in my VL from 1,450,000 to 222,000 wasn't quite a log but it shows i am responding. I get my 2 month blood test tommorrow i hope i have dropped a log, but also with gene 1a they usually detrmine after 24 weeks not 12 weeks if treatment is working because with gena 1a treatment is a year. Good luck and change doctors to someone that has a better understanding on this virus because w are all fighting for are lives and we want someone standing next to us thats helping us with the fight and knows everything about this virus. Effie
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179856 tn?1333547362
You need to switch doctors immediately.  you are 100% correct. How your doctor intends to see how well you are responding to the treatment medications is a mystery that I don't believe he can answer. How will he know if he needs to adjust something? If it's working at all? I mean if you are not having any response why would you stay on until week 24?

Technically knowing you are UND at 3 months is what we aim for however with all of the new studies and journals (that aren't even THAT new anymore) showing how important it is to be UND as close to week 4 as possible - and if you are NOT UND at week 12 that you might indeed need to extend to 72 (as in my case) - I believe that he is under the impression that he is "up to date" with his knowledge but sadly he is lacking very far behind.

Please go and google up the following two huge studies.  The Berg Study and The Sanchez Tapias Study.  Print them out and show them to the doctor.  He might find out he's one of the only old fashionned Marcus Welby's out there who hasn't heard of these important findings yet!  To be honest, my own GI had never heard of them either but I did (hee hee from in here) and when I went to Dr. Jacobson in NYC he is the one who told us of the Sanchez Tapias study...using the two of them together helped not only me but several other people who perhaps would have failed treatment to get our SVRs.

Is there a real heptologist in your area that you could see?  In my case I couldn't afford a biggie like Dr. J (doesn't take insurance) so I had to go to him only as a second opinion...it was worth EVERY penny of the $600 I spent on the appointment.

Can you find at least a different GI who has more experience with hep?

That is the kind of information a doctor SHOULD know!

But I think he's still reading out of an old text book and believing he knows whats what.

That's sad. A doc should always take the time to keep current!  My GI had to learn that lesson but thankfully he did.

--------
I am a Geno1A and GT 1B also - with the odds starting out at only 50/50 you want every single bit of help you can get in this fight!  
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476246 tn?1418870914
Is your doctor a hepatologist?  Everyone should have a baseline VL, to be able to monitor how fast you achieve UND and to keep track of how many logs you drop. Someone will explain this to you more in detail, but it is very important. Also if you are not UND at 12 weeks, your doctor could very well prolong treatment.

Marcia
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Avatar universal
Sorry...I'm geno 1b, not 1a.
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