SVR for me? I don't really know

[hepcandme]

Because Kaiser only tests VL at the EOT, 4 weeks and 24 weeks

From my NP:

From XXX re: Labs

Greetings-
 12 weeks VL check is not the standard of care. A cure (SVR) is defined as no virus detected at 24 weeks post-treatment. The Kaiser HCV task force decided to check at one month post-treatment, because if a treatment were to fail, we would know by one month post-treatment. So we check at one month and six months post-treatment.


XXX, NP


So, most likely I am cured - undetected at 4 weeks EOT but I will miss out on the SVR12, I'm Cured! fun. They did labs at 12 weeks that looked good. Why couldn't they throw a VL test in there too?

[flyinlynn]

Good luck Good luck Good luck Good luck Good luck

:-)

[hepcandme]

I finally convinced my doc to give me a viral load test. So, will know for sure in a few days and will have important ALT and AST as early as tomorrow morning

Fingers crossed!

[hepc4Sandi]

Linda,
It sounds very good to me also. My doc said the 4 week UND was virtually cured as far as he was concerned, and he was right. Know how you feel about wanting the reconfirmation. Even though I did a different Tx, know that it takes a very long time to recover. I am still healing with my dental issues, hair still growing back in, still have tinnitus. Hang in there and follow up on your Sx. Congratulations!
Sandi

[sue4hula]

Oh Linda, this is sure positive and exciting news!  I am so happy to hear your news!  
Doing the happy dance for you and hoping the after effects of treatment dissipate after time.  

[susan400]

I'm sure that is true for those people who used Harvoni, or Sovaldi, but will that also remain true for other treatments. Although, it seems like everybody jumps on the Harvoni band wagon, for some of us, that is not going to be happening anytime soon.  Unless A. I suddenly get a lot worse, or B. Gilead stoos charging such a huge amount of money fir it, then, I have no interest in trying to get it. My insurance spent like $80,000 last summer abd the P.A.N., picked up the extra amount.., all together it was about $125,000 fir the Sovaldi, + Peg.., then, the relapse. The ins. company won't go for agreeing to cover it for someone like me because I am a low stage of damage and have already cost them big bucks.  I'm possibly going to just screen fof another trial (all oral) and forget about Harvoni.   All I'm saying is are all NS type of treatments now only looks at 12 wks PCR's/viral loads as SVR indication? BTW  I will not be even thinking about getting imported generic Harvoni, because I'm not able to afford even that co-pay.

[Livelife777]

Linda.  I also have no doubt your finally cured.  Like Lynn my AST and ALT tend to stay in the 20-30 range post SVR.  They never saw the teens even while on treatment.
Just would like to say Congragulations!!!  
You have been thru so much in the last few years and it's no wonder your still not feeling 100%.  In your head???? No, I don't think so!  I'm hoping every day you are further from treating will be a better one.  
Warm wishes
.....Kim

[hepcandme]

Thanks Randy

I think I am probably cured and have asked for a VL test

I also have set the works in motion to change from Kaiser to another insurance that has more knowledgable liver people on their team.

If your doctor is thinking that serious symptoms are "all in your head" and doesn't seem to be your advocate, well, time to get a new doctor. In fact, the people I know with the best outcomes always feel like they have their doc on their side

Just to be clear, I did not take Interferon. Harvoni + Riba for 12 weeks so I won't be completely convinced till I get lab work done

Thanks all for your support

~ LInda

[Rbeth]

Hi Linda!

First, congrats BIG congrats!

Second, post Tx SX, as you well know, are NOT in your head( brain maybe)
Even with DAA's >>>> data coming in......
I tanked, 6 weeks post Harvoni ...many diagnostics lack info... (probable early cirrhosis), bloodwork all messed up. I'm almost 8 mos post, cured, and still no answers... Hang in dear one....
All best
Randy

[HectorSF]

As many of us have seen when relapsing after stopping treatment... there is a marked rise in ALT and AST indicating that the hep C virus has returned and causing inflammation of the liver. It doesn't matter what the exact numbers are when treating (teens or not). Mine enzymes happen to be in the teens (ALT 16, AST 18) now after being cured but I also have a new donor liver that was only exposed for only a few months to hep C before I treated and cured it.

Some folks will have higher than normal ALT and AST before treatment and then on treatment the numbers will drop into the normal range. Others will have enzymes within the normal range, but see a lowering of enzymes within the normal range on treatment.

A obvious large increase of ALT and AST is a sign of relapse.

By the way SRV12 applies all of folks whether they failed previous treatments, had cirrhosis or liver transplant or anything else.

AASLD/IDSA HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C - Updated August 7, 2015

MONITORING PATIENTS WHO ARE STARTING HEPATITIS C TREATMENT, ARE ON TREATMENT, OR HAVE COMPLETED THERAPY

"Patients who have undetectable HCV RNA in the serum, when assessed by a sensitive polymerase chain reaction (PCR) assay, 12 or more weeks after completing treatment, are deemed to have achieved an SVR. In these patients, HCV-related liver injury stops, although the patients remain at risk for non–HCV-related liver disease, such as fatty liver disease or alcoholic liver disease. Patients with cirrhosis remain at risk for developing hepatocellular carcinoma."

Glad that you are cured and free of hep C like myself after 3 treatments and a liver transplant.

Cheers!
Hector

[patra_]

Congrats!  I, too, believe you are there.  My thought is that, since you had  relapse(s?) in the past, and took a 24weeks course of to this time, that your Dr wants to wait to be really sure - Kaiser, now, I have no idea of their reasoning, unless they have someone on staff who actually knows something about your hx and wanted the extra confirmation @ the least cost.  (I think we can all believe the least cost part, for sure).

Looking forward to that 'SVR24' for you, soon.  Have you been researching the PIS?

Good luck and keep on keeping on!

Blessings,

Pat

[printze]

Thank you Hector my doctor told me exactly what you posted relapses take place usually within 4 weeks after tx and there is a 2% chance of relapsing with Harvoni. My alt ast labs are in the teens. Ultrasound normal smooth liver he said everything is perfect. I am so grateful.

[hepcandme]

That's good to know, Lynn

Mine were closer to yours than teens or low twenties. I have requested a lab order from my primary so that I can see if I am still undetected

My last few visits with Kaiser docs have been painful. For one, my liver doc doesn't believe that post Hep C side effects is a real thing - even though anyone could just Google those 4 words and would get lots of info and data. I have been told that it is all in my head and need to see a shrink - which probably is a bit true given what I have been through but now both docs are peeved that I "refused" a prescription for an anti-depressant from my Primary. Is he even qualified to do that? I told them we should wait to see what the psych says

I am So over Kaiser that as soon as I get my lab results and can make it happen, I am going to change insurance companies. Doctors should never tell someone who is feeling incredible fatigue and brain fog that they should just shake it off and get out more or that their symptoms are all in their head

[flyinlynn]

My 12 week post result with 12 week SVR my ALT was 29 and AST was 27 but both in normal range.

At week 8 on treatment my ALT was 26 and AST was 23 I never di see the teens on treatment only low to mid 20's

Last year after I relepsed after taking Sovaldi & olysio 12 weeks TX my 12 week post tests for ALT was 56 (ALT normal <33) and AST was 45 (AST normal 0-50) So I has a definate jump that I took as a worning before I received the bad news a few days later.

[hepcandme]

Thanks Hector

My labs look great at 12 weeks so it looks like I am cured!

And soon to be rid of Kaiser

[His way]

Congrats, that is so encouraging for all of us. That was a great explanation by Hector.

[HectorSF]

Hi,

I saw your post on my Cirrhosis Community so I thought I would respond since there is no reason to be in doubt about SVR 12 weeks after EOT.

You are now 12 weeks since EOT. So if you are still undetectable you are cured. SVR is SVR12 not SVR24 weeks and has been that way for years now. So all you really need is SVR12 and you are cured for good. SVR24 went away with interferon based treatments, viral breakthroughs, early/late responders and other terminology of old obsolete treatments.

There are two options to learn if you are cured:

1. You can pay for a PCR test and know 100% you are cured.
Have your primary doc give you a lab order for a HCV RNA test. You can take it to a local Quest Lab or LabCorp lab and have it done the same day. Results may take a few days. There are labs all over SF and you can find a lab near you at their online websites.

2. Look at your most recent blood labs with ALT and AST levels taken at least 12 weeks since EOT.
When a person starts treatment and becomes undetectable there are other labs levels that also change. For example ALT and AST. These enzyme levels inflammation of the liver caused by the virus. So if you look are your ALT and AST labs before you started treatment and then while you are on treatment you will notice that the ALT and AST levels drop as you become undetectable and they stay low (sometimes in the teens) as long as you are on treatment. Then when you stop treatment they will continue to stay low as long as the virus doesn't come back to cause inflammation to your liver again.

The Bottom Live is...
If your ALT and AST have remained about the same levels as they were when you were treating (low 20s or in the teens) then you have not relapse and since you are more than 12 weeks since EOT you are cured.
The SVR24 lab will only confirm that you are cured.

People typically relapse within 4 weeks after stopping treatment. After being undetectable at week 4 after EOT you have about a 98% chance of being cured. In other words only a 2% chance of relapsing between week 4 and 12. There is 0% of relapsing between week 12 and 24 so that is why SVR is SRV12 not 24.

So there is really no reason to wait 3 months to know if you are SVR.

Looks like your cured (assuming good ALT and AST levels). Congratulations!
Hector

[virt111]

Well, congrats on the SVR4! You should be golden, Linda. Very happy for you!

[hepcandme]

by all standards except Kaiser, yes, Printze, I would say you are cured!!

Congrats!

[printze]

Me too I just posted I got my 3 month lab viral load and it's undetectable  I am only seeing my doctor next year for another viral load. Am I cured or not?

[OdinLovesLife]

Not sure of this helps but being in a trial I did have a 12-week VL test. Came back undetected, but there was a slight rise in ALT. Now waiting for the 24-week test, due in a couple of months. Didn't make any difference to how much I am worrying about the possibility of a relapse. I don't think I would relax unless I had a test once a month.

Best wishes for SVR. Numbers are in your favour :-)