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Author Topic: Question about blood work while on harvoni  (Read 11919 times)

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Offline Todd4004

  • Member
  • Posts: 7
Question about blood work while on harvoni
« on: April 29, 2015, 03:32:33 pm »
Hello Everyone,

First time poster here and am very excited to tell you all that after 6 weeks on S/O and 1200 mg of ribavirin, my blood work came back as undetected!

Although I'm grateful to my Dr., he doesn't have much of a bedside manner and doesn't really listen to any of my concerns. I had my first and only blood work done at 6 weeks, which I just found out at my 8 week apt was undetectable. He said to come back to see him after I complete my treatment at week 12 and did not order any new blood work for me. I asked him if he could please do so just to make sure that I am remaining und. and he said no because the possibility of the virus coming back is "slim to none".

It seems like most other patients on this forum get tested like every month or every other week is some instances, which seems to make sense (better to be safe than sorry when going though a $150,000 treatment therapy).

Do any of you think I should maybe go to my GP and explain to her my situation and see if she could order a lab work for my hep c virus just to make sure that everything is going smoothly with my treatment, or do you think that would be excessive?

Thanks a lot for your responses

2008 - first detected
2013 - telaprevir nightmare
Feb 27, 2015 - S/O + 1200 mg ribavirin - 6,000,000 VC
April 11, 2015 - Und.
« Last Edit: April 29, 2015, 03:35:57 pm by Todd4004 »

Offline SIXFOOTFOUR

  • Member
  • Posts: 89
Re: Question about blood work while on harvoni
« Reply #1 on: April 29, 2015, 03:56:16 pm »
There still seems to be some different management styles with this. Ive also read about some getting labs every 2 weeks to every 8 weeks .

My Dr is an associate with the UCLA Liver (Pfleger Liver Institute) and I was referred to them initially for tx on the old programs which I declined but then when Harvoni was approved they got me started after my first of year follow up. The basic protocol my Dr is using is baseline labs , biopsy , fibrosure to determine need and level of disease (VL and level of Fibrosis or Cirrhosis)to get approval. Start Harvoni at 8-12 or 24 weeks of tx based on dx and then follow up Labs at 7-8 weeks and if undetected then labs at EOT regardless of if you are on 8-12-24 weeks tx. Then repeat blood work at 12 weeks post tx then 1 yr post tx.

The need for less blood work, followup and ease of 1 pill a day is why so many are referring to Harvoni over Viekra Pak that requires more pills a day and more followup blood work is what they told me.

So I would think there are just as many having frequent labs as those that only have a few. If you can get them to do more and it makes you feel more secure go for it but it drives the cost up and with the high cost of this tx at this time Im sure most medical groups and insurance would lean to less extra labs as they are not mandatory.
« Last Edit: April 29, 2015, 04:03:44 pm by SIXFOOTFOUR »
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline davidsconfused

  • Member
  • Posts: 53
Re: Question about blood work while on harvoni
« Reply #2 on: April 29, 2015, 07:21:25 pm »
My doctor isn't doing any hcv tests until EOT.

Offline Junkyard

  • Member
  • Posts: 24
Re: Question about blood work while on harvoni
« Reply #3 on: April 29, 2015, 08:30:38 pm »
Todd
I went through the same thing with my second GI. The first time I did inter and riba. I was a null responder. I did not ever see the doctor. I saw a different doc than what I signed up for. Then the only person I saw was his PA.  She was even the one that told me I had to quit treatment. I did blood work 3 times with them.
My second GI made me do a colonoscopy before treatment. I did blood work at that time. Started treatment on telaprivir inter and riba. Did blood work at 4 weeks,was undetected. I saw him at end of treatment, no blood work and then at 12 weeks after treatment did blood work. Then I got the call, it was back and even had a higher VL than before treatment. 
This time I got my regular doc, I just happened to tell me one time that he broke into the business being an aide to a GI doc. I talked him into getting me the treatment mess and told him I would do what ever he wanted and he would do what I wanted.  I am at the end of week 11. I have done blood work 4 times total counting the one before treatment. I will get results tomorrow or the next day.  My insurance does not pay for the labs until I reach my deductible so some of it is on me.  I figure that paying $28.00 co pay for both drugs is cheap enough to go ahead and pay for the labs.  They cost me about $125.00 when they take the VL as well as the others.
I would not let my doc decide and be smug about anything.  I respect them, I just make my own decisions, especially if I am paying.
You do have rights and  some ability to choose. Do not forget that. This is just Hep C. You are not just a virus you are a human.
Good luck

Offline jiff

  • Member
  • Posts: 17
Re: Question about blood work while on harvoni
« Reply #4 on: April 30, 2015, 01:26:03 am »
I started Harvoni on 4/11/15..i was given post dated lab slips for week#2 ,#4, #8,#12,#16,#24,&#36....week 2 was just a CBC & hepatic function which I'm beyond excited to see that my ALT & AST have fallen to mid-normal levels after just 2 weeks on harvoni.im hopeful that my week#4 test results (due to be drawn May 9th)will reveal even more improvement...that's the 1st viral load test I'll have since tx initiation.my baseline HCV RNA QNT was 163,000 10 days prior to starting TX.

Offline Todd4004

  • Member
  • Posts: 7
Re: Question about blood work while on harvoni
« Reply #5 on: April 30, 2015, 12:10:55 pm »
Thanks so much for your replies, all. Yeah, it just seems to make sense that since this treatment is so expensive that a GI would want to do at least 2 labs before EOT -- that way if there are any complications they can just add an additional month or so of treatment instead of waiting for complications to arise later down the road and then having to start awholenother course of treatment for 12 or 24 more weeks.

I think I will go get an additional lab work taken by my GP in a week or so just to be sure. I've had to work so hard to get to this point and have had to be my own advocate, so I'm just going to keep at it!

Congrats on all your successes!

Offline dragonslayer

  • Member
  • Posts: 873
Re: Question about blood work while on harvoni
« Reply #6 on: April 30, 2015, 01:47:31 pm »
Todd, I posted this in a similar thread in another subsection, but it seems just as relevant here:

Because Harvoni treatment doesnt generally call for response guided therapy such as the older treatments did, there isnt a whole lot of purpose in doing on treatment viral loads.  Plus which, numbers derived therein dont correlate well with SVR, so what's the point?  Many people who test detected at EOT, for instance, wind up SVR, and occasionally, the inverse is true.   The benchmark of SVR for Harvoni is the 12 wk post treatment test.  If SVR is achieved at a 4 wk post treatment test, that correlates well with future SVR as well.   But on-treatment tests dont prove to be that predictive with the new treatments.   For folks with severe liver damage and failed prior treatments, however, exceptions are sometimes made.
« Last Edit: April 30, 2015, 01:51:11 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

 


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