Author Topic: Doctor doesn't want to check viral load test until 6 months after I'm finished (Read 15898 times)

frooze · « **on:** June 20, 2015, 09:35:38 pm »

I haven't posted for awhile but I think it's time. The liver doctor I have has me on Viekira Pak with ribavirin for 12 weeks. In a few days I'm finishing my ninth week and three to go.

My Doctor said all along he didn't want to do testing until 4 weeks after I'm finished. I questioned him stating I see on this forum people getting tested all during treatment. He stated it was a very expensive test so I wonder if he was thinking about me or the Insurance company. So I called Blue Cross and the person there said it's up to the Doctor but they would probably approve earlier testing. I went in to the office and talked to his head nurse because the Doctor was on vacation and he that's his policy and can't be changed.

Well I just seen him the other day only for the second time since starting my treatment and now he after seeing my red cell count dropping to 11.4 and when I started it was over 14, he says if it was under 10 we would worry about the ribavirin dose.

Now he is of the mind that he won't test until 6 months after I'm finished. I said to him that it would being given a birthday present and you can't open it for 6 months. He told me that 6 months would be the big test so come back in January for blood work and if undetected the nurse would call me with results and I don't have to see him again. He is older and acts like he is the doctor and my needs or opinions don't mean anything or count.

I know this is late in the process but I'm thinking of changing doctors. Has anyone run into this kind of Doctor or situation before? Need Advice.

atomic dog · « **Reply #1 on:** June 20, 2015, 09:54:29 pm »

I see his point but it's kinda lame. My doctor (Kaiser) is testing every 30 days post treatment.

KimInTheForest · « **Reply #2 on:** June 20, 2015, 10:29:42 pm »

Certainly most people's doctors are giving them viral load tests more frequently than that, Frooze - and both during and post-treatment. It seems cruel to make a patient wait for 6 months after treatment before having any idea whatsoever whether anything has been accomplished. If it were me, I would consider switching doctors. But then that's me. I have a very low tolerance for doctors with an arrogant attitude and insensitive to my needs (and to normal protocols). Besides, SVR12 is the definition of "cured" these days with the new direct-acting antivirals. It was old-school rules that defined cure by SVR24. Maybe your doctor doesn't even know this.

Yes, any of us who achieve SVR12 will also want to make sure we achieve SVR24. I will be checked after end of treatment for SVR4, SVR12, SVR24 and SVR-1year. I have already been told this. I am getting my drugs through a clinical trial, and there is usually more data collection involved in trials than under normal prescription situations. So I am getting a lot of VL tests during and post-treatment.

best of luck to you!
kim

atomic dog · « **Reply #3 on:** June 20, 2015, 10:50:46 pm »

You could price a viral load test and pay for it yourself out of pocket.

frooze · « **Reply #4 on:** June 21, 2015, 12:20:46 am »

I would like to pay for the test but I have very good Insurance that probably would pay but it would have to be ordered by the Doctor. Well, think the solution is to get a new Doctor or pay myself. I'll check to see how much it costs.

Thanks for the advice.

Jeffry1970 · « **Reply #5 on:** June 21, 2015, 10:48:08 am »

Do you have a family doctor that can order the test?

frooze · « **Reply #6 on:** June 21, 2015, 12:53:23 pm »

I do have a great family Doctor but he's is in the same medical center as the liver Doctor. They know each other. But it probably wouldn't hurt to ask.

Does anyone know what would be the approximate cost of viral testing?

GLCII · « **Reply #7 on:** June 21, 2015, 01:24:46 pm »

Something seems wrong with this. My doc is a liver doc as well and had me tested every two weeks. As for your Red Blood Cell count, you would think he would want to keep an eye on that as well. That could drop at anytime. Once you hit 10, you'll probably be put on Procrit. 11.4 will make you feel shitty. I wpuld ask my primary doc to test it. Any doc that's worth a salt would give consideration to the patient and what they want.

I sometimes wonder how doctors get paid. It would take 15 seconds to write that script for the test. What does he care who pays, it's no skin off his back.
This is what makes me wonder if they get paid more for not having the insurance companies pay for more tests.

If you have the meds, in your possesion to complete the treatment, demand the test. Tell him you don't want and shouldn't have to wait for something you should have regularly. What's the worst that can happen? He'll either say No or maybe drop you as a patient. Either way you have the meds and can just go get another doctor.

Bituman · « **Reply #8 on:** June 21, 2015, 03:30:37 pm »

Mostly agree with GLCII. Sounds like your doc is monitoring your blood, which makes sense. But not checking VL makes no sense. If I remember correctly, the negotiated price my insurance paid was around 250$. It's not that expensive. Dont worry that your PCP knows the liver doc. Get him to order the test. A PA can even order the test. Go to one of those walk in clinics and get someone there to do it. Good luck! By the way, I'll bet you are undetected.

Bob

Mike · « **Reply #9 on:** June 21, 2015, 04:27:42 pm »

There's two schools of thought on this:

In the old days, treatment continuation was guided by frequent viral load tests due to the length of treatment (48 weeks) and side effects. In those days, a significant drop in VL was needed to gauge treatment success and outcome. If certain VL markers weren't met, during the 48 weeks, treatment would be stopped.

That's not the case anymore and length of treatment and type of treatment are determined by pretreatment tests, genotype, liver damage and VL. Once this information is known, VL is irrelevant until EOT.

Simply put, VL testing during treatment is not necessary and provides limited clinical significance. It also drives overall medical costs. The tests that count are the EOT VL (end of treatment) and the 12 weeks post treatment VL (SVR12).

Best wishes, Mike

frooze · « **Reply #10 on:** June 21, 2015, 06:06:19 pm »

The Doctor took a simple blood test 3 wks after starting treatment and after 8 wks of treatment just to check my red blood cell count. But he changed my viral load testing from 4 weeks EOT to now 6 months EOT. This bothers me.

One thing I didn't mention is that just before starting treatment I researched Viekira website and called and talked to a pharmacist at Express Scripts and they agreed what I found, that my blood pressure medicine Lotrel had an ingredient that contradicted with Viekira and could be harmful. They said to talk to my Liver Doctor to change medications before starting treatment. I think the Doctor should have known. From what I see on the web the possibility was Death. He sent me to my Family doctor who is down the fall and he immediately took me off that medication completely. Again, I think the Liver Doctor should have know. My life was possibly in the balance.

Mike · « **Reply #11 on:** June 21, 2015, 06:41:49 pm »

I agree. This should have been caught before starting treatment. I went through a pretreatment screen with a nurse from the specialty pharmacy prior to starting the meds. She reviewed my medications and answered questions. I was cleared and the meds were sent.

You should have routine blood work while on treatment, especially if Ribavirin is part of your protocal.

A VL is not necessary while on treatment, though I would want to know my pre and end of treatment VL.

A 12 weeks post treatment VL is used by many doctors, which I had. My GI would not sign off on my 'cured' status, however, until I completed a post 24 week VL, which was undetected (SVR24).

Best wishes, Mike

lporterrn · « **Reply #12 on:** June 22, 2015, 01:16:05 pm »

Hi Frooze,
If you want to read what the experts recommend, here is a link: http://www.hcvguidelines.org/full-report/monitoring-patients-who-are-starting-hepatitis-c-treatment-are-treatment-or-have

Corey · « **Reply #13 on:** June 22, 2015, 03:36:19 pm »

For what it is worth, this is what my schedule is for 24 wks of Harvoni with regard to viral load. Viral load at Week 0 (pre-treatment), week 6, week 12 and week 24 (EOT) then EOT plus 12 weeks and 1 year.

One argument for checking the viral load. If the HCV breaks through, it is probably best to discontinue treatment to avoid breeding a resistant strain.

frooze · « **Reply #14 on:** June 22, 2015, 05:18:18 pm »

This statement Corey Made that One argument for checking the viral load during treatment. "If the HCV breaks through, it is probably best to discontinue treatment to avoid breeding a resistant strain." Really has me concerned. Does anyone else know this as a possibility?

dragonslayer · « **Reply #15 on:** June 22, 2015, 05:50:28 pm »

From what Ive seen, none of this on-treatment testing means anything. Plenty of us have been detected during and even at the End Of Treatment, and gone on to SVR by 12 wks post.

lporterrn · « **Reply #16 on:** June 23, 2015, 06:53:21 pm »

Here is what the Guidelines say,

Quote

There are minimal data on how to use HCV RNA level during treatment to determine when to stop treatment for futility. The current recommendation to repeat quantitative HCV RNA testing at week 4 of treatment and to discontinue treatment if the quantitative HCV RNA level increases by more than 10-fold (>1 log10 IU/mL) is based on expert opinion. There are no data to support stopping treatment based on detectable HCV RNA results at weeks 2, 3, or 4 of treatment, or that detectable HCV RNA level at these time points signifies medication nonadherence. Although HCV RNA testing is recommended at week 4 of treatment, the absence of an HCV RNA level at week 4 is not a reason to discontinue treatment. Quantitative HCV RNA level testing at the end of treatment will help to differentiate viral breakthrough from relapse, if necessary. Some may choose to forego end-of-treatment viral load testing, given the high rates of viral response with the newer regimens, and to focus on the week 12 posttreatment viral load. Virologic relapse is rare at 12 or more weeks after completing treatment. Nevertheless, repeat quantitative HCV RNA testing can be considered at 24 or more weeks after discontinuing treatment for selected patients.

In other words - a detectable viral load does not indicate breakthrough and is not cause for stopping treatment (evidence suggests that most go on to be cured). However, a ten-fold increase in viral load may indicate breakthrough. This rarely happens.

Bituman · « **Reply #17 on:** June 23, 2015, 11:01:54 pm »

It seems odd that the majority of us are being treated by health care professionals that are not following these guidelines and are testing more often. I wonder why? I sure appreciated the data during treatment, and my insurance company did not mind paying for the testing. In fact, after 4 weeks and I was still detected, although <15, my doctor ran a VL at 6 weeks. Maybe the guidelines should be considered a minimum VL testing frequency. In other words, it's okay to test more frequently. My wife's guideline is that I mow the lawn once a week, but I can mow it more often if I think there is some advantage.

Bob

dragonslayer · « **Reply #18 on:** June 23, 2015, 11:39:48 pm »

Bob, there used to be a reason that frequent testing occurred during the older treatment regimens.. Response-Guided treatment, as it was called, had a function. When treatment was a lot rougher and a lot longer, if a patient was found to be a non responder, treatment would end, rather than subject the patient to 48 wks brutal side effects for no purpose.

Today, there's really no reason to do frequent on-treatment testing. Detected RNA during treatment correlates very poorly with SVR. So what's the point? And non detected RNA during treatment gives many a false hope... In the olden days, if you were detected at EOT, you failed treatment.. Today, thats not true. So why cause the patient extra anxiety and extra cost to do tests that have little probative value?

Mike · « **Reply #19 on:** June 24, 2015, 07:55:43 am »

In many instances, doctors feel pressured by the patient to conduct the extra tests.

Instead of addressing the patient's anxiety, the doctor will acquiesce as it's the road of least resistance.

Best wishes, Mike

lporterrn · « **Reply #20 on:** June 24, 2015, 01:54:54 pm »

I'd also add, that I think doctors get anxious too - they want visible assurances and proof.

Bob - loved the lawn mowing analogy - I laughed out loud over that one.

debham · « **Reply #21 on:** June 24, 2015, 05:34:09 pm »

I took my last pill yesterday. Went to the Dr today he gave me blood work paper and told me to get it done 12 weeks from now. So I have no idea how or if the drug worked I have no idea where I stand in the battle against hep c. But at least I'm done with taking a pill each and everyday. I will know on Sept 22 I'm not going to fret over this. I'm just going to chill.
Deb stuck in limbo

KimInTheForest · « **Reply #22 on:** June 24, 2015, 05:44:32 pm »

Congrats on completing your treatment, deb. And good attitude about just chilling while you wait. am looking forward to that day myself! just under 5 weeks of pills left for me.

good luck on your results in 12 weeks!

kim

debham · « **Reply #23 on:** June 24, 2015, 06:23:14 pm »

Thank You Kim....
deb

frooze · « **Reply #24 on:** June 24, 2015, 07:33:35 pm »

Thank you for a lot a great responses. I was all prepared to wait 12 weeks for testing but as you know at my last visit the Doctor increased it to 6 months. I hope I don't have to see him again before testing because at that point he may want to postpone testing until I'm laid to rest. That way at he could say; "that at least I didn't die from Hep C".

The better solution is to get a appointment with my family Doctor maybe 1 or 2 months EOT and have him order the test. This would make me feel better.

If I ever again need to go to a Live Doctor, it certainly won't be my present one.

sapphire101 · « **Reply #25 on:** June 25, 2015, 12:40:32 am »

I call BS on this Frooze.
Print out the links to the recommended lab tests and take this with you at end of treatment to another doctor.
I get that we are testing too much during treatment, but all the experts agree that end of treatment and 12 weeks after treatment are the gold standard for viral load testing.

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Author Topic: Doctor doesn't want to check viral load test until 6 months after I'm finished (Read 15898 times)