Author Topic: 8 Weeks Harvoni and still no cure : ( (Read 16751 times)

mr0205 · « **on:** September 22, 2016, 11:34:53 am »

Hi everyone,

So, I was given 8 weeks of harvoni. When my Dr checked my blood halfway through I was only down to 400 something, so he thought I must have some sort of resistant strain hiding and wanted me to have another 4 weeks to make sure I cleared the virus. Insurance company denied it saying since my viral load was not very high that 8 weeks was just fine. I have been higher at times but when I started treatment I was only in the 100,000 range. Anyway, I since had follow up blood work at my virus is at 18! He said <15 meant that it was gone. I have to go in on the 11th of October to "discuss" what to do now. I'm thinking that my insurance company will want to wait for me to get sicker again before letting me do anything..... has anyone had this happen or heard of this happening? Losing faith in doctors, insurance companies to figure out and thought I would ask those who have gone through this and see if I might be able to go to the appointment with some suggestions that WILL work or that at least have worked for someone who faced something similar. Also is this highly unusual? Thanks

dragonslayer · « **Reply #1 on:** September 22, 2016, 12:28:37 pm »

Mr205.. You didn't say when your follow-up test showing 18 was relative to eot, but i will assume it was near the eot and my response is predicated on that.. Yes this happened to me! 8wks Harvoni and at the end of treatment i was Detected 29. Even at 8wks post i was still detected, but the count was unquantifiable. With the eot result i thought i had failed. Then someone linked me to the Oxford study that showed with Harvoni low level detected at eot does not mean failure. The only test that usually matters is the one at 12 wks post treatment, and at that point, i had resolved to undetected, and I've remained undetected for over a year.

I'm in the gym on my phone now but when i get home i will link you to the study.. i just wanted get this off in a hurry so you don't worry needlessly. Check my results in the signature beneath the post and take heart. In the meantime try and search that link til i can get back to you later.

****EDIT****
Here's are a couple of links referencing the study I mentioned:

https://hepatitiscnewdrugs.blogspot.com/2015/03/hcv-rna-does-not-always-mean-treatment.html

http://cid.oxfordjournals.org/content/early/2015/04/02/cid.civ170.abstract

And here is the salient quote:

"Overall, six patients had HCV RNA that was detectable by the Abbott assay at the end of treatment. Despite the presence of detectable HCV RNA, all six achieved sustained virologic response level 12."

lporterrn · « **Reply #2 on:** September 22, 2016, 01:48:04 pm »

Ditto on what Dragonslayer said. If the test was done before the week 12 post-treatment date, you may still clear (according to data).

mr0205 · « **Reply #3 on:** September 23, 2016, 08:09:24 am »

I was just tested at 12 weeks, after 8 weeks treatment, I was tested 4 weeks later and showed a viral load of 18. I'm not sure if that fits in with the study, is it 12 weeks after treatment is finished or after 12 weeks total. Sorry, as you can imagine, my mind is racing with questions but if this is something that I can still hope for I will make sure so show my doctor. BTW, just wondering, what can they actually do for someone having such a low viral load? I imagine it would be crazy hard to get the insurance company to want to pay for any meds at that level. They did not even want to extend me the 4 weeks. Thanks

dragonslayer · « **Reply #4 on:** September 23, 2016, 09:14:51 am »

The 12 wk svr test, the one that counts, is 12 wks post treatment. Im still a little fuzzy as to when you were tested. Were you tested 12 wks AFTER your 8 wk treatment ended? And then, again, 4 wks later, at 16 wks AFTER your 8 wk treatment ended? Regardless, 18 is a tiny number. HCV is a rapidly replicating virus, so you should probably get tested again, if Im understanding you correctly.

mr0205 · « **Reply #5 on:** September 23, 2016, 09:52:30 am »

I was tested on week 12 four weeks after I completed the 8 week treatment. That's when my doctor said the viral load was 18 and should have been <15.

I am supposed to see him on the 11th of October to discuss my options. I'm feeling like insurance company may or may not cooperate, since they were not wanting to after the test halfway through 8 weeks when I was showing around 425 viral load.

Michelle

dragonslayer · « **Reply #6 on:** September 23, 2016, 10:05:55 am »

Ok, so you were tested at 4 wks post treatment with a result of 18... I tested 8 wks post treatment and tested Detected also, with a count that was unquantifiable, ie < LLOQ which I believe on that test was 12... So, 4 wks post treatment 18 is not very different than 8 wks post treatment 12 or less. At 4 wks post, I was likely quantifiable also. Hang in there... Hopefully the doctor will order up another test; you may not have failed. Again, its the 12 wks post treatment test that matters.

lporterrn · « **Reply #7 on:** September 23, 2016, 12:33:18 pm »

OK, you still have a chance of beating this. The important test is 12 weeks after you took the last dose of medicine.

mr0205 · « **Reply #8 on:** September 23, 2016, 12:34:52 pm »

I am going to talk with my doctor about this. Thanks so much for the info.

brie41 · « **Reply #9 on:** September 24, 2016, 09:42:18 am »

Hi mr0205,

Well I am glad that Dragonslayer had been through this already and it can give you hope that you are or will be undetected next test. Best of luck to you. Brie

jakas · « **Reply #10 on:** September 24, 2016, 12:21:02 pm »

Where I live the lowest detection test or LLQ (Lower Limit of Quantitation ) IS 25, SO AFTER 4 WEEKS ON TREATMENT I was less than 25, end of treatment ( 12 wks of Harvoni) I was still less than 25. Then 4 weeks AFTER taking the last dose I tested in Asia and I was less than 15 as their LLQ was 15, 12 weeks END OF TREATMENT ( EOT ) back home I was tested and its was below 25, THE DOC SAID ITS GONE. Last test was 24 weeks AFTER taking the last pill and it was still below 25, doc reconfirmed its gone. So hang on there and wait for the 12 week test after the last pill you took.

Philadelphia · « **Reply #11 on:** September 24, 2016, 11:14:33 pm »

And let's not forget that often when the virus comes back it replicates like a freight train with no brakes. People often report viral loads in the tens or hundreds of thousands when they relapse. Four weeks after ceasing treatment and your VL is still very low - be alert but not alarmed at this point. Easy to say, I know ...

LightBeingAtLast · « **Reply #12 on:** September 25, 2016, 11:50:23 am »

Hang in there! The 12 week test AFTER you have completed treatment is the one you are waiting for.

I'm on week three with Harvoni. When I began my VL was >32million. I'm optimistic but won't have my VL tested again until I finish my 12 week course of treatment. Then wait 12 more weeks to make sure it remains cured!

Lynn K · « **Reply #13 on:** September 26, 2016, 12:33:45 am »

As Philidelphia said the virus does come roaring back. I treated Mar 2014 to June 2014 with sovaldi and olysio. My pre treatment viral load was 2.0 million. I was not tested at 4 weeks post but when I was tested at 12 weeks my viral load was 2.4 million.

So yeah Hep c does not mess around when it comes back the virus reproduces very rapidly.

I retreated Nov 2014 to May 2015 so 24 weeks with harvoni and am now cured for a year and a half.

We are all pulling for you you still have a chance you are cured good luck on your 12 week post test

mr0205 · « **Reply #14 on:** September 26, 2016, 06:46:24 am »

Thanks for all the info and support. I feel better but still nervous of course, especially since for a week now I am exhausted. I don't know if it's just stress of waiting for the appointment or something else but hopefully just stress. It's a weird tired like within an hour after getting up I am ready to go back to bed. Also my whole body hurts. I read somewhere that these can be post treatment side effects. Figures since I really had no side effects at all while on the treatment...

Lynn K · « **Reply #15 on:** September 26, 2016, 11:52:15 am »

How are your liver enzyme test results? When I relapsed my only indication was my ALT went back above normal. Having slightly elevated ALT AST doesn't necessarily mean relapse but for me it was an indication.

Good luck

mr0205 · « **Reply #16 on:** September 26, 2016, 02:24:59 pm »

My doctor did not mention Liver Enzymes from my last test only the viral count. I will be going back on the 11th of October so I will ask for more tests.

jakas · « **Reply #17 on:** September 28, 2016, 12:51:15 pm »

At EOT what is the norm for relapse 4-6 -8 or 12 weeks when it comes back ?

Sorry my English is so poor today hope you got my question

Lynn K · « **Reply #18 on:** September 28, 2016, 10:49:16 pm »

Most people who relapse will do so by week 4.

I have read the odds of being cured if still not detected at 4 weeks post is 98.5%

If you make it to 12 weeks post and not detected the odds of having been cured goes to 99.8% Most doctors are calling SVR 12 tantamount to cured

Most testing is only done at 12 weeks post but some may be tested at 4 weeks after EOT. I was tested at 4 weeks because I asked due to my treatment history and especially after relapsing after 12 weeks of Sovaldi /Olysio.

There is not really a "norm" for relapse as relapse is not the norm.

Is that what you are asking?

jakas · « **Reply #19 on:** September 29, 2016, 04:43:08 am »

Tlk60 · « **Reply #20 on:** October 11, 2016, 06:51:13 pm »

Well after 3 months of back and forth with insurance denials....I got a letter today giving me partial coverage. Doctor ordered 12 weeks of Harvoni but insurance only approved 8 weeks. From what I am reading that seems to be the norm....At first I was devastating thinking that 8 weeks won't do the trick but after reading some posts I have turned my way of thinking around. At this point I am thankful to have any treatment! So now I have to wait to contact my doctor to have them send the prescription to the specialty pharmacy and hopefully within the next 2 weeks or so I will begin treatment with Harvoni!!! Wish me luck...since I was beginning to doubt that I would ever be approved!

Lynn K · « **Reply #21 on:** October 11, 2016, 11:29:43 pm »

Yeah for those with no prior treatment, little to no liver damage, and viral loads below I think6 million a 8 week treatment has been having excellent results for most people. Congrats on sorting through the maze to get approved and good luck on treatment

Tlk60 · « **Reply #22 on:** October 12, 2016, 09:46:18 am »

Lynn K, I want to thank you so much for your encouragement! I am hoping that my Christmas present to myself is to have completed treatment! I don't want to get my hopes up because this has been a mighty struggle to just get this far....but I seem to be seeing a tiny light at the end of the tunnel and I haven't even begun treatment yet...but it is close...I can almost feel it...hahahahaha

As far as liver damage is concerned, I only had an ultrasound of my liver and kidneys...no fibroscan or biopsy. Doctor said, "It looks good." So with that, I am taking it that I have little/no damage. YAY!

I hope it doesn't take forever to get my doctor's office to forward the rx to the specialty pharmacy. What was your experience with the specialty pharmacy? When I contacted them last night to set up a profile, etc. they really seemed to be on top of things. Fingers crossed...because that is not what I have experienced so far with doctors.

Lynn K · « **Reply #23 on:** October 12, 2016, 11:58:10 am »

I had to use a mail pharmacy through my insurance with my employer they would not allow me to use s local pharmacy. I would only get a one month supply at a time and they would not refill until I had less than 7 day supply. Then I had to wait for UPS on the day it was arriving. Plus I was treated for 24 weeks so I had to refill 5 times after my initial first month.

I am not a fan of express scripts based on all that big hassle plus they initially denied my coverage for Harvoni.

May you have better luck with your insurance most do once they get approved.

Tlk60 · « **Reply #24 on:** October 12, 2016, 03:42:59 pm »

I have to use Prime Therapeutical Specialty Pharmacy which is also mail order. I am guessing I too will have to take a day off from work to wait on the delivery. Do they give you an exact date?? That would be nice since my husband is home until 1 p.m., I could work at least a half day....

I will only have to refill once after my initial delivery so that's good.

This Prime Therapeutical Pharm. also denied my first attempt at medication and finally approved Harvoni...which is what I preferred anyway over Viekira Pak and Ribo...

Lynn K · « **Reply #25 on:** October 12, 2016, 09:20:18 pm »

you can set up with fed ex and UPS to have delivery notifications and be able to track on their web sites. Your pharmacy should sent the tracking number and that will tell you what day and maybe a window mine usually said by the end of the day. It all depends on what time of day UPS typically goes to your neighborhood.

I eventually figured out to have them deliver to a nearby UPS store and I would go there to pick up. I work second shift and my bedroom is upstairs so before I figured that out to deliver to a store I would go downstairs in the morning and go back to sleep near the door so I would get my meds and not have to set up a re-delivery.

Good thing you only have to wait for meds twice....

Tlk60 · « **Reply #26 on:** October 13, 2016, 08:55:01 am »

The nearest UPS store to me is 45 minutes away...I will follow your advise and track the package....

You have been such a great help to me. Words cannot describe how grateful I am for you and for this forum. The information I have gained and the support I feel is fantastic!

Grateful Gmom · « **Reply #27 on:** October 24, 2016, 04:07:14 pm »

I'm going to follow this thread now.....
You hang in there until your next blood work MR0205 and Dr. visit!!! Hoping those last little buggers will be destroyed before your next labs!!

I am into my second week. Some side effects, but manageable. I also was prescribed 12 weeks but only approved for 8 currently.
The specialty team will be your gateway to anything Harvoni Tlk60. They have probably spent 4-5 hours total on the phone with me over the past three weeks as myself and husband both started treatment same day!! I wrote down every question I had and they answered them during each session. I look forward to all of us being cured and helping other newbies through this scary journey.
As far as the delivery, mine came via a private courier and we were able to set the time evening between 6-9. Both came on time.

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Author Topic: 8 Weeks Harvoni and still no cure : ( (Read 16751 times)