Frequency Of Tests On Treatment

[Luna7]

My doctor wants me to come in for blood tests after only 2 weeks of treatment, and again at 4 weeks.
Has anyone else had to take tests that soon? This seems too early for tests, and I don't want to pay for it if not needed.

[brie41]

Hi Luna,

  I totally understand how you feel.  I think the 2 week test is unnecessary and really only 4, 12, and 24 make sense to me.  My Doctor ordered 4, 8, 12, 24 week tests and I also can't get any results over the phone, I need to go in for a 5 minute visit and also had to go in at 2 weeks for a check up.  So I am making many trips and I have quite a long ride to get there.  I am only on a 8 weeks treatment and have a week left to do.  I was undetected at 4 weeks so almost think the 8 week could be skipped but I will follow the program the way they run it.  I also have to pay out of pocket for these tests and visits so that is adding up!  Good luck, but I think you should have the right to not have the 2 week at least!

[FutureThinker]

If you look at the AASLD guidelines, there are many doctors who are choosing to test more frequently.  It's up to the doctor; but you should feel free to discuss the frequency and out of pocket costs w/ him/her.

I think as time goes on and more data is collected, there will probably be less testing, but for now, it's up to the doctor.  My doctor saw me after 8 wk labs and won't again until 12wkEOT labs, so go figure!It's their educated decision. But talk to you doctor about it, you have that right to know the reasoning.  FT

[lporterrn]

It depends on your medical history - do you have cirrhosis, are you on ribavirin, any other complications (such as history of liver cancer, etc). Also, not sure what your doc is testing you for or what drugs you are on
Assuming all that is fine and you are on Harvoni without rib, then week 4 and 12 are what is recommended: http://www.hcvguidelines.org/full-report/monitoring-patients-who-are-starting-hepatitis-c-treatment-are-treatment-or-have

[dragonslayer]

I'm really glad my doctor ordered no on-treatment tests.  He wanted to test me at 12, 24, and 48 wks post treatment only...  It was bad enough that, when I forced the issue, I had an EOT test which came back low level detected.   With Harvoni, at any rate, I dont see the value of on-treatment testing for most people.  The results of these early tests are not dispositive, so why go through the anxiety?  You can see my results in my signature, but I was detected both at EOT and at 8 wks post treatment.. It wasnt until the 12 wk post treatment test came back Undetected that I knew I was cured.

So, why test on-treatment?  An Undetected can  become detected upon the unlikely event of relapse, and a Detected result right through treatment and a few weeks thereafter can become Undetected at the 12 wk post treatment marker.  Testing is extremely stressful for most people.. Unless there is a definitive reason to do so, I dont see the point in testing prior to 12 wks post.

[Lynn K]

I was tested weekly after I started in ribavirin at week 9 of my 24 weeks of harvoni. I was tested at week 4 and 12 and EOT for viral load. While I was on ribavirin I was tested weekly for CBC until we dose reduced and my HGB stabilized at 10 then just every 4 weeks for liver function and CBC.

So in my case my testing was very customized. I had my blood draws done in the town I live in and did not go to my doctors office until I was 12 weeks post treatment in July 2015. The last time I was in my doctors office prior to that was October 2014 to discuss my options after relapsing on Sovaldi Olysio 12 week treatment.

I guess as a treatment experienced and compliant patient in relatively good health the hepatologist does not feel they need to see me that much and the do have a message system I can use or just call if I have questions or concerns.

We even made the decision to add the ribavirin via messages.

You can always ask why you are the customer as well as being a patient. Is it possible to go to a nearby lab instead of going in to the office?

Edit: I do agree with Paul the only reason I can think of for on treatment testing is to make sure the patient is taking their meds. If you had no decrease in viral load that would indicate patient non compliance. Like Paul said all on treatment testing does is increasing stress it is of no diagnostic value the only test that matters is 12 weeks post.

[dragonslayer]

I think a lot of doctors are still steeped in the methodology of the past.  I cant think of any other reason to order frequent on-treatment testing other than making money for the labs. However, for folks with significant liver damage, or prior failed treatment, thats a different story..  My remarks were made regarding patients who have no specific issues which need to be attended to.

[FutureThinker]

All good points above. Also, let's face it --- lots of different people are making their paychecks in this treatment process. I'm just saying this as a fact, not saying it's the reason for more tests/visits, but a part of the equation. These DAAs are still so new, I imagine this is another reason why some doctors are ordering more tests/visits at this time. We all know the 12 wk EOT is THE test that's most important. I'm sure doctors will be able to explain their individual decisions, we just need to ask.

As long as we all get to SVR, that is the most important part! FT

[AndreaM]

I'm on an 8 week Harvoni treatment. My tx blood work was/is at 2 weeks, 4 weeks, and 8 weeks (I was undetected by 2 weeks). My post tx bloodwork will be at 4 weeks, 12 weeks, 24 weeks.

It probably really depends on the treatment and the doctor.

[pansy]

I'm on Harvoni for the 12 week course.

Every 2 weeks, back in for blood test.

It's a long way to go to get there, and a long wait till it's done.
I bring a sketchbook and iPod..

I've been undetected since 4th week.
I'm now on week 9, finish the end of this month.

I don't yet know what the post treatment schedule will be...

I look forward to leaving this hovering black cloud behind me.

[Philadelphia]

If you are pretty healthy all things considered, you are not cirrhotic and not on riba, I don't see the need to test as much. I was VL tested at 2, 4 and 8 weeks on treatment, then EOT, 12 and 24 week. I don't see the need for 2, not even 4 really. If you aren't clear you'll only stress and honestly, what diagnostic purpose does it serve? Will you go off the meds? Not likely.

I think if you have some health issues and/or you are on riba, you want to get tested more in terms of blood chemistry and LFTs etc. They watched me carefully as my bilirubin was sky high at the start, and my haemoglobin started to tank.

Of course I am a school principal not a doctor and my opinion is worth exactly what you've paid for it

[dragonslayer]

Phili,

I totally agree.  Just using my own case, when I tested Detected 29 the day after treatment ended, I started posting about how I had failed treatment, and what should I do next.  I discussed with my doctor and he suggested testing again, which I did at ~8wks post.  But even then, I tested Detected... However, I drew strength from the fact that  the viral load amount, while detected, was unquantifiable.  The fact that it had Decreased from 29 to unquantifiable was a Major indicator that the next result, at 12 wks post would be Undetected, which of course, it was, as was the 24 wk test and the 48wk test.  It took awhile for the professionals to realize that DAAs are NOT Interferon.   With earlier treatments, being detected late in treatment or  after treatment meant a sure failure, with rapid viral replication thereafter..  Nobody told me that things were different now, until I gained knowledge from this forum about how the detected result was not necessarily indicative of a failed treatment.... Then, some kind soul posted a study that showed results like mine were not unusual; that low level detected at end of treatment is NOT an indication of treatment failure.

And so it goes....  All of this on-treatment testing, for folks without cirrhosis, or past failed treatments, or riba, to me, does more to add to stress levels, and less to predict svr...  So what if you have a Detected result on treatment?! Folks start wondering if their doctor needs to add weeks of treatment, and the insurance companies get involved again, and for what?  It doesnt mean anything!   

[Gaj]

I agree that unless you have complications such as Riba or cirrhosis, the testing can be minimal on DAAs.

Other potential reasons for greater testing are ensuring medication compliance with very expensive drugs plus building patient and even physician confidence in what are currently fairly new treatments.

I suspect with time the requirement will probably drop to testing at SVR12 or whatever the gold standard is then. After all, we don't usually test antibiotics during treatment these days, just take the prescribed course and review afterwards.

[FutureThinker]

From my review of the literature, the 4 wk test is for 2 reasons: 1) Is the drug working; a 2-log decrease in VL is preferred for this assessment, and 2) patient compliance. If RIBA is being used, I am sure more testing is done for the anemia risk. I agree with others, these tests will likely be decreased as more data is collected on us pioneers.  But for now, the doctors are going to do what they feel is in our best interest until more evidence is available to decrease testing.  With that said, they should give some credence to situations like Pansy (traveling long distances), or someone who is paying out-of-pocket for these expensive tests. We are still working out the bugs in this treatment process. FT

[BillT]

I think each doctor has their own thoughts on timing the tests Luna.I think most of us did the 4 8 12 and 24.It may be they just want to see how it's working.If it still shows at 2 weeks you shouldn't worry about it.That's in my opinion pretty early but as I said your doctor may just want to see how the drugs are working.Just keep at it and see how things are going as your treatment progresses.

[FutureThinker]

And, dragonslayer's comments are very important for all of us to keep in mind! FT

[Lynn K]

Other than being overjoyed for him on how it worked out we all learned a lot with dragonslayer's test results and the power of these new meds.

If you are having to pay for your testing you could ask your doctor about the necessity of these tests. They may be thinking about the old interferon protocols as all this is still so new.

Good luck

[Luna7]

Thanks for all the input everyone

I just emailed the Dr's Office with questions regarding 2-week testing, asking if their need for testing matches what insurance will cover.

I was shocked at the bill I got the other day even though I have decent insurance that covers most of the cost.

[dragonslayer]

Interestingly, my doctor, when asked how much viral load testing we'd do relative to my Harvoni treatment, told me 3 months post treatment!  Nothing else.  It was I who called the office near EOT and requested they write me an End Of Treatment lab req, being the nervous nellie that I was, and they complied...  Of course, the result was not what I had wanted.  Had I stuck to his original plan and tested once at 12 wks, I never would have known, nor suffered the sinking feeling of treatment failure (which of course it wasnt) that the EOT test provoked. 

Of course, waiting 12 wks post treatment to test as he had originally wanted, would have caused plenty of  its own  consternation, but not knowing, to me, is better than thinking you failed when you didnt!

[Luna7]

That's good to know, Dragonslayer...that even though the tests could show some virus still present during various periods of treatment it does not determine the end results.

I didn't have to go in for the 2 week tests btw, and don't know why they wanted that, though I will ask at my next app.  I explained my concern about costs via our email exchange, and also made it clear that I am taking the meds via describing my experience in detail, just in case that was their concern (patient compliance).

[FutureThinker]

Yes, the 12wkEOT is the date we all really need to keep our eye on, as hard as that is!! FT

[brie41]

Hi All,

  I am going in for my 8 week test tomorrow, only 2 pills to go!!  I just went through the stack of blood tests my Doctor ordered.  They have me going in a month, I think they have me following the 12 week course of treatment.   I was confused at first and thought it was the 12 week eot, but it will be only 4 weeks eot.  I suppose it doesn't hurt to find out, but what do you think?  I don't recall anyone else going at that time and these tests are adding up!!   Brie

[FutureThinker]

Hey Brie --  I imagine they will be doing an 12 wk EOT on you, too, as that still is the accepted test for cure. But as you can see from all the different posts, the doctors have various time tables for their testing. That said, you see lots of people being tested at 24 wk EOT and 1 year EOT. They will probably tell you after this test.

My 12 week program will be tested at 4, 8, 12 and 12EOT, and I'm not being seen again by the doctor until the EOT test in Aug. FT

[brie41]

Hi FT,

  I checked my paperwork, I will have 12, 20, 32 weeks.  I am going to just go along with the program and not cause any problems.  Thanks for always being so positive and kind with all of your posts, they always stand out to me!! Brie

[morab]

My GI Dr. got me Harvoni for 12 weeks. I was not scheduled for any followup or lab work. His nurse has not returned any of my calls.
My GP has taken on the task of doing my followup.
I am on day 22 of treatment, with 2 really great days and the others side effects!
My feet are very swollen, joint pain, hip pain, weird dreams, fatigue and GI issues.
I see my GP in one week,
Any suggestions on when I should ask for a blood draw. I think he can check my liver enzymes but not the viral load.
Should I just wait until treatment is done to even ask for a VL test?
GP was going to study so I will see what his plan of action is, just concerned that a specialist got me the Harvoni, with NO followup planned at all.
Genotype 1a

[beto]

Morab

I'd push for VL testing at least at 8 weeks, if 4 weeks is impossible.  Yes ALT/AST, is usually a good indicator of the drugs working well.  All reports I have seen when folks are tested at 4 weeks, their VL and enzyme both dropped remarkably and usually VL is undetected or so low that it might as well be UD.

All that said, the 4 week VL puts the mind to rest becAUSE 98% OF THE TIME THE NEWS IS FANTASTIC.

I have read a few folks on this forum that had to wait until EOT for news.  They are all cured now.  One thing is for sure, waiting for results is a little stressful, so if you have a few less "result weeks" it could be a good thing 

[morab]

beto
Thanks for the reply,
I was thinking of doing the normal testing of AST/ALT at 4 weeks and hopefully do a viral load at 8 weeks.
I will see what my GP says next Monday! He may have a plan in the ready for me.
This forum has been my savior as far as keeping my sanity through treatment so far.
Thank you all!
Morab

[NYCHEPCMAN]

I thought that generally its ideal to get a VL test at week 4 to determine if patient is responding to treatment. If so, then do the rest of treatment and testing at 12 weeks following EOT.

[morab]

NYCHEPCMAN
Thanks for the advice, I am writing down my daily journey and will include advice from all you wonderful folks here in this forum to take along with me next week.
I suppose that my regular Physicians curiosity will also want some testing done.
He get's very excited to treat people out of the ordinary daily duties.
Morab
I am in the US so not sure what the protocol actually is, although the GI specialist seemed to have none what at all after the first visit and that is a puzzle in itself.

[gnatcatcher]

. . . My GP has taken on the task of doing my followup. . . .
I see my GP in one week,
Any suggestions on when I should ask for a blood draw. I think he can check my liver enzymes but not the viral load. . . .
Genotype 1a

morab, your GP should be able to order the VL (viral load) too. My GP has to write it in the space for other tests, because it is not on the preprinted form, but he has ordered it without problems. It takes a few extra days to get results if your local lab has to send it out to an external lab. Quest Diagnostics calls the VL test HEPATITIS C VIRAL RNA, QN, RT PCR. Hope this helps. -Gnatty

[morab]

Gnatty
Thanks for the info. I had to go as an outpatient to a hospital for my original testing, so I am hoping my GP can order what I need. He is an incredible physician who has compassion like most others seem to no longer have these days.
Morab
I am taking notes along with a daily journal of symptoms!
Thanks to this forum, I worry much less!

[dragonslayer]

>>One thing is for sure, waiting for results is a little stressful, so if you have a few less "result weeks" it could be a good thing<<

I will just reiterate what I said in a prior post.  I think it is far more stressful to test for viral load at EOT or just before, and get a Detected result that ultimately resolves to UND SVR at 12 wks post than to not know.  On-treatment viral load testing with the new drugs is virtually meaningless for most people. Virtually everybody gets a big drop in viral load while on treatment.. Being undetected at EOT is as useless as being Detected at EOT... Its what you get at 4wks post, and especially, 12 wks post that matters according to svr predictive value studies. 

When you fully realize that a Detected received at EOT DOESNT mean treatment failure, you then have to ask yourself, why take that test!!  And since practically everbody shows big decreases in viral load on treatment, testing for that seems meaningless also.

Liver health testing however seems to have more value.

[morab]

Thank you dragonslayer!
I am so hopeful. I am learning so much!
Morab

[brie41]

Hi Dragonslayer,

  I had my 8 week test today, which is the one I really didn't get because I was undetected at 4 weeks.  I am now officially done with my 8 week treatment and will go in 4 weeks for my next test.   It will be a little scary from here!!  I keep thinking it is like jumping hurdles, 2 cleared, 4 to go!!!  Olympics on the brain maybe?  Brie

[dragonslayer]

Don't worry, Brie; Im sure youll be fine!!!

[FutureThinker]

Brie, CONGRATS on completing the program!!!  Woohoo!!!! I'll be done in 1 week, almost unable to comprehend it!

I really believe these test times will be worked out in the near future, we are just in the first couple of "classes" to "graduate" and more research & data will determine what time tables justify the cost or info obtained. 

Morab, you may want to check out the hcvguidelines.org website, where the "accepted" guidelines for treatment are outlined. If you are going to be asking your doctor about the tests, this would be a good site for you to familiar yourself with before you bring up your questions. The AASLD is pretty much considered "the authority" on all this HCV stuff, so take a look at their info.

Let's all just keep our eye on that goal ------- SVR!!! FT

[morab]

Thanks for the info FT I will look that up.
Congratulations Brie, I so look forward to my last pill taken.
Morab

[brie41]

Thank you all!!  We are all in the same boat, nice to have you all there with me!!!

[pansy]

Congrats, brie41! ♫ ❤ ♪☆!

FT, I'm a week behind you, 2 weeks to go.

Will also have a liver ultrasound on next/last tx day appt.

Hoping the fatty liver will show signs of fading, and platelets keep climbing,
I'm now on 1mg every other day, or prednisone, platelets at 12.
I will be happy to be free from dr. appt's, for awhile, and able to travel!


Congrats to the class of 2016!


pansy


 

[Johnny_Wayne]

My Wife only tested once at 12 weeks post treatment. When I was on treatment I only tested once at 8 weeks and once at 12 weeks post treatment. I am baffled as to why anyone would need to be tested more frequently.

[morab]

Johnny Wayne
I am glad to hear this, I have a Dr. appointment today and will discuss his plan and suggest the least amt of testing possible.
Also, it looks like in your info below that you relapsed? What genotype are you and how many weeks of Harvoni did you take?
Morab

[FutureThinker]

Johnny_Wayne, you will see test timetables all over the place on this forum -- some people on 8 wk treatments are getting tested every 2 weeks......... each doctor seems to have their own schedule for this.  That said, we all know THE test to really look at is 12 weeks post treatment, that is the one all of us should have, for sure.

I think these schedules will be "streamlined" in the near future as more info is available from us in the first 1-2 classes to graduate.  Next year should be chock full of new data, as 2016 is going to be a very large graduate class!!  FT

[Baxter]

I don't necessarily know that anyone "needs" to be tested more frequently than that, but personally I'm glad my doctor tests every 4 weeks. Psychologically, there's a boost to hearing that the numbers are already getting better. I like knowing it, myself; I find it encouraging.

[dragonslayer]

I don't necessarily know that anyone "needs" to be tested more frequently than that, but personally I'm glad my doctor tests every 4 weeks. Psychologically, there's a boost to hearing that the numbers are already getting better. I like knowing it, myself; I find it encouraging.

I dont think you'd feel that way if you tested positive at end of treatment, only to clear at 12 wks post. Those 12 wks would be unfathomable, thinking youd failed treatment only to find out those 3 mos of worry were totally pointless and didnt have to be experienced. Thats the point Im trying to make.. Folks who test positive on treatment or just after will think, needlessly, that they failed treatment.. And those who test undetected in those time frames will have a false sense of security, since the only test that proves SVR is 12 wks post..  Nothing else is definitive, so why go through it? .. Instead of giving one a sense of security, they may result in a whole lot of unnecessary anguish.   Im speaking here of treatment naive non cirrhotics without serious liver damage.

[morab]

Today was my 4 week check up with my GP, since the GI specialist had no plan at all.
I did have a blood draw, to see that the Harvoni is working, and without any problems to my other organs.
So I should hear some results within the next 4 weeks.
After that? I think the protocol my Dr. found was 12 and 24 weeks EOT!
This forum has been my only therapy as the medical system seems to want to do nothing in that area!
Thank god for each and every one of you!
I look forward to my Hepmag emails every day!
You folks are my rock right now! I am so glad to have found new friends!
Also my PC doc is soooo disgusted with the system here in the USA! He said there were so many cures out there, but if the Big Pharma can't make billions? They won't even put the cures on the market. Big Pharma would rather keep people sick and make big money!
Morab

[FutureThinker]

Dragonslayer, your points are so, so, so important for all of us! I am so sorry you had to endure those 3 months between EOT and 12 wk EOT -- you must have been beside yourself worrying. That's why I really believe these tests are going to be much less frequent probably as soon as next year....... between the costs & the real information they provide, I think 4 wk and 12wk EOT may well be the norm very soon. I was one of those who did not test at UD until my 8 wk lab, and it is a scary time, for sure, until you see those magic words "not detected". But we are learning now, as more and more info is coming out, that some people just respond to these drugs slower than others, like you. This info needs to be broadcast to all patients considering or on treatment. There's enough stress in this process as it is!

That said, I'm going in for my EOT labs tomorrow on my last of treatment, and then at 12 wk EOT in Aug., for a total of 4 labs. We all just need to keep your info in mind in order to "stay calm and carry on". 

[Baxter]

I dont think you'd feel that way if you tested positive at end of treatment, only to clear at 12 wks post. Those 12 wks would be unfathomable, thinking youd failed treatment only to find out those 3 mos of worry were totally pointless and didnt have to be experienced. Thats the point Im trying to make.. Folks who test positive on treatment or just after will think, needlessly, that they failed treatment.. And those who test undetected in those time frames will have a false sense of security, since the only test that proves SVR is 12 wks post..  Nothing else is definitive, so why go through it? .. Instead of giving one a sense of security, they may result in a whole lot of unnecessary anguish.   Im speaking here of treatment naive non cirrhotics without serious liver damage.

Actually, I'm in a similar position right now, and I do still feel that way. I had a viral load of 69 at 3 weeks, and today got my 7 week labs back. I'm still detected. Report said "<15 detected." Yeah, granted, it's statistically insignificant, but I'd be lying if I said I wasn't more worried tonight than I would be if it had come back "0". It's human nature. We worry even if we know we don't have anything to worry about.

But I don't care. I still want to know. I want every bit of information about my condition that is available, and then it's up to me to decide how to process and handle that information. I'm not a child who needs to be protected from a truth simply because it might be frightening - I'm a grown man who wants (and is entitled to) complete disclosure about every aspect of my condition. I would never tolerate a doctor refusing to give me EOT test results just because they might frighten me.

I'm sorry, but I just can't accept any part of your argument here. Granted, there are always going to be some people who are too uninformed about their disease, or too emotionally fragile, to properly interpret the test results and evaluate what those results do and do not mean, but to be blunt that's not my problem - that's theirs. If you have a serious disease, it's your responsibility to educate yourself about it, learn to evaluate the information and the risks, and make rational, objective decisions that reflect an understanding of the information and the risks. If someone sets themselves up for a letdown because they gave themselves a false sense of hope, or suffer "unnecessary anguish" because they read too much into an unfavorable test result, that's they're problem, and they have only themselves to blame. Educate yourselves, so you can learn everything there is to know about your illness and make informed decisions.

While the value of 8 week and EOT results is limited, it does nevertheless have some usefulness, and every patient is entitled to know those numbers.

[morab]

What a learning curve I am on. One thing is for sure, at this point I refuse to allow room for disappointment when it comes to lab work.
Thanks to dragonslayer, I realize my test results may not show what the end result will be, only the progress I am making.
I don't even have a lab result to post yet.
But thanks to this forum, I am better equipped to handle what may come in the future.
You people are the only real support I have, and I thank each of you for that!
Morab

[Lynn K]

When these meds were first released no one not even our physicians knew there was a possibility of what happened with dragonslayer's test results. No one knew that you could be weakly positive at EOT and still go on to acheive SVR12.

Paul was the first person we were aware of here who had this set of circumstances. Thanks to him and a couple of others we now know that even if one is detected at EOT it ain't over yet. We know this in the forum but I wonder how many treating physicians out there have heard of this so that if this situation should occur with one of their patients how can they counsel them about their tests correctly.

Just thinking how that would be for those patients so I hope this knowledge is getting out to the doctors who treat us.

[FutureThinker]

Baxter, I appreciate your thoughts on this.  However ---- I do think COST is going to play a larger role in the frequency of testing in the near future, as more info is gained from this very large class of graduates & students this year.  Whether we like it or not, the insurance companies will get their "2 cents" in on this issue in the end.

Who knows, the insurance companies may well start requiring RAV testing prior to starting treatment rather than pay for multiple tests on treatment..... we'll just have to wait and see.  Lynn is spot on, we are still learning lots about this disease!!  FT

[dragonslayer]

Baxter, I appreciate your thoughts on this.  However ---- I do think COST is going to play a larger role in the frequency of testing in the near future, as more info is gained from this very large class of graduates & students this year.  Whether we like it or not, the insurance companies will get their "2 cents" in on this issue in the end.

Who knows, the insurance companies may well start requiring RAV testing prior to starting treatment rather than pay for multiple tests on treatment..... we'll just have to wait and see.  Lynn is spot on, we are still learning lots about this disease!!  FT

Now, wouldnt that make a lot more sense than frequent testing on-treatment the results of which dont correlate well with SVR?

>>But I don't care. I still want to know. I want every bit of information about my condition that is available, and then it's up to me to decide how to process and handle that information. I'm not a child who needs to be protected from a truth simply because it might be frightening - I'm a grown man who wants (and is entitled to) complete disclosure about every aspect of my condition. I would never tolerate a doctor refusing to give me EOT test results just because they might frighten me. <<

Baxter, youre certainly entitled to your position, but let me ask you... What do  you learn about your condition from all these on-treatment tests?   Other than the fact that at that moment, your results are what they are, they have virtually no predictive value toward SVR, so they are essentially meaningless with regard to your progress toward SVR.   As I replied to FT, RAV testing pre-treatment would be many times more valuable, and is probably the direction in which testing will be headed.

[Baxter]

When these meds were first released no one not even our physicians knew there was a possibility of what happened with dragonslayer's test results. No one knew that you could be weakly positive at EOT and still go on to acheive SVR12.

Paul was the first person we were aware of here who had this set of circumstances. Thanks to him and a couple of others we now know that even if one is detected at EOT it ain't over yet. We know this in the forum but I wonder how many treating physicians out there have heard of this so that if this situation should occur with one of their patients how can they counsel them about their tests correctly.

Just thinking how that would be for those patients so I hope this knowledge is getting out to the doctors who treat us.

My doctor had no idea until I told him this last month. They didn't even believe me. I gave them a link to Dragonslayer's thread, but I don't think they even checked it out. This is one of those doctors who thinks that nothing can possibly be true unless they already knew it themselves, and they are totally unreceptive to any input from their patients - because after all, they already know everything. It's a shame, because it's the largest hepatitis clinic in the state (basically just a Harvoni pill mill), and they could be sharing this with a lot of other people who would really benefit from it.

[Baxter]

Baxter, I appreciate your thoughts on this.  However ---- I do think COST is going to play a larger role in the frequency of testing in the near future, as more info is gained from this very large class of graduates & students this year.  Whether we like it or not, the insurance companies will get their "2 cents" in on this issue in the end.

Who knows, the insurance companies may well start requiring RAV testing prior to starting treatment rather than pay for multiple tests on treatment..... we'll just have to wait and see.  Lynn is spot on, we are still learning lots about this disease!!  FT

Yes, I believe that's the direction this will go within a year or two. We're basically the first generation of patients to be treated with this family of drugs, and they're going to learn a lot over the first couple of years. And when that happens, of course I'll understand and be fine with it.

But until then, if the information is available I want access to it.

[dragonslayer]

My doctor had no idea until I told him this last month. They didn't even believe me. I gave them a link to Dragonslayer's thread, but I don't think they even checked it out. This is one of those doctors who thinks that nothing can possibly be true unless they already knew it themselves, and they are totally unreceptive to any input from their patients - because after all, they already know everything. It's a shame, because it's the largest hepatitis clinic in the state (basically just a Harvoni pill mill), and they could be sharing this with a lot of other people who would really benefit from it.

It's really shocking, isnt it, that many of us know more about the disease and its treatment than many of the doctors doing the treating....  Sickening, really, literally!   I put up study results showing that low level detected results at end of treatment often resolve to SVR by 12 wks post, but you get the sense that many of  the doctors are just  oblivious to some of these results.   

Many of these hepatologists  have young doctors assisting and learning from them... During one of my doctor appts pre treatment, I was presented with one of these glorified interns.. Nicest guy in the world, but seemed woefully ignorant.. For instance when I mentioned occasional liver pain, he responds, 'impossible; liver feels no pain'... When I showed him my red palms, he responds, 'nothing to do with your hepatitis; you dont have cirrhosis'.  When I showed him my flaking and peeling nails, and describe my occasional brain confusion and joint pain masquerading as tendonitis, he responds, ' nothing to do with your HCV.'... etc, etc, etc, and so it goes...

Its really extremely disappointing the state of medicine today in this country...  But thats a whole nother  rap  for another time....

Best of luck to you, Baxter; Im sure you'll resolve just fine... Dont worry yourself too much;  the fact that your VL result went down in a subsequent test is encouraging,.....

[Baxter]

Baxter, youre certainly entitled to your position, but let me ask you... What do  you learn about your condition from all these on-treatment tests?   Other than the fact that at that moment, your results are what they are, they have virtually no predictive value toward SVR, so they are essentially meaningless with regard to your progress toward SVR.

First of all, I don't fully accept that the information has no definite predictive value. We are often told by the experts that 4- and 8-week results do not have predictive value, but when you drill down a little deeper and read the studies and the papers on the subject, the data is not conclusive at all. Some data indicates that it does not, but some data indicates that it does.

The experts who are telling us that it is not a predictor are the same experts who (in some cases) are still telling us that what happened with you is impossible. I think you know they're wrong about that, but what else are they wrong about? My doctor still insists that your story can't possibly be true. Other doctors are starting to come around to the idea that it is possible to be detected at EOT and still clear a few months later, but what other things that they swore could not be possible will turn out to be true in a few months?

Second, even if it doesn't have predictive value, I still want to know every single detail about my condition, period. I've been sick for many years, and my wife has been disabled most of her life. We've learned the hard way to collect copies of every single test result, study them for ourselves, and keep them in a file. Whether the information has any obvious substantive value or not, I still want to know every single detail about my condition, period. Doctors may consider me a pain in the ass, but I make every possible effort to be a fully informed patient in every single aspect of my health care. The phrase, "well, that probably doesn't matter so I don't care about it" does not exist in my vocabulary when it comes to medical care. 

[Baxter]

It's really shocking, isnt it, that many of us know more about the disease and its treatment than many of the doctors doing the treating....  Sickening, really, literally!   I put up study results showing that low level detected results at end of treatment often resolve to SVR by 12 wks post, but you get the sense that many of  the doctors are just  oblivious to some of these results.   

I know, and it's more than shocking - it's infuriating. Whenever I mention something I learned from this site, they roll their eyes and make jokes about internet forums. Last time they did that, I said, "Well, considering that you didn't know anything about it before I brought it up, even though this is what you do for a living, I would say you might benefit from spending a little time researching the internet yourself." They didn't like that very much, but I don't care. I'm sick and tired of their sloppiness and casual, condescending attitude.

They don't like me very much either, but that's another one I don't care about. All I need them for at this point is give me pills and take blood tests. If the Harvoni doesn't work, I already know I'm going to switch doctors, even if it means I have to travel out of state. I won't trust my care to doctors who are this lackadaisical about their jobs.

[Luna7]

Whenever I mention something I learned from this site, they roll their eyes and make jokes about internet forums.

It's pretty insulting isn't it?  I went to a "Butt N Gut Mart" clinic a number of years ago (that's what I call the gastro clinics that have sales ads on the walls like "Got hemorrhoids??? ..then let us blah blah blah fix you", pressuring you to get all kinds of tests, and treating Hep C like it's not important).
PS - Wish we had a hepatologist in this town.

Anyway, I was at the But N Gut Mart and at my first appointment I told the doctor I was so happy a new drug was coming to treat HCV, by the name of Sos or something, and she looked puzzled and said she hadn't heard of anything coming. The next appointment she said she mentioned this to her But N Gut Mart bosses who had just returned from a freaking liver conference, and they said no new drugs were on the way. And then she said "you can't believe everything you read on the internet"! I just looked at her and said nothing. Boy would I say something now. What would I say?  Hmmm, my ornery self might say:
 "Do you treat all your patients like they are stupid??"
 "Do I look like I'm stupid and believe every story I read on the HerbsRUs website or something???"
 "Are you aware that I made an A in graduate level statistics and I read Abstracts and medical reviews as well as anecdotal reports on forums?"

It's very annoying how they think only THEY have valid information, when the people going through treatment and talking amongst themselves have valuable knowledge too.

[Lynn K]

I am just a machinist with an AA degree but I can read lol

[Baxter]

The first time the PA at my clinic told me in a condescending tone of voice not to pay attention to what I read on the internet, I told her "I have a master's degree in history and 16 years experience as a journalist. I feel fairly confident that I know how to research data and tell the difference between internet rumors and substantiated sources."

I think that was the day they started to not like me very much.

[dragonslayer]

Baxter, print out this short study result and rub your doctor's face in his own ignorance!

http://cid.oxfordjournals.org/content/early/2015/03/02/cid.civ170.abstract

[Baxter]

I hear the printer chattering and whirring in the other room as I type, and I am cackling with glee at the anticipation. June 8th can not come soon enough for me. Thank you!

[Lynn K]

  Hee hee

[FutureThinker]

Wow, I take my last Harvoni pill and head out to the lab for my EOT blood work, and look at all the great conversation that's been going on here!!

Baxter, I am a retired health care provider and I totally understand your frustration and distrust of the medical profession.  They should be ashamed of themselves.  I've ranted on this forum in a couple of places (Luna knows) re: the lack of professionalism frequently encountered and posted here by many of us.  You are  smart to keep all records, etc. and ask every single question you have of these people.  We really do have to be our own best advocate. Sad but true.

I think they are intimidated by the fact that an awful lot of valid info is readily available online these days. They just need to take some time to check it out before they refute it!! They are speaking with no evidence --- they are supposed to be treating using evidence-based practices.  Your distrust is understandable.

Thankfully, there are 2 very recognized liver conferences every year, one in Europe and one here.  I guess they have to hear these facts or stories from a source such as that to believe it.  Please be sure to let us know how it goes on June 8th!!

And Luna, you had me LAUGHING OUT LOUD with your clinic nickname!!!!! Where in the world do you live??? We all just need to keep reading and listening; we will get thru this.  FT

[FutureThinker]

Dragonslayer, excellent study link! While it's just 1 study, this is exactly what's going to drive testing times in the near future (and cost).  That study should be given to every person who starts treatment -- it would help to ease a LOT of fears and worry!!

Just love this forum, we learn so much!! Thanks again, FT

[Johnny_Wayne]

I think it depends on what they're testing for. They want me to test monthly because I will be on Ribavirin and have a higher risk of complications. They're looking at/for hemoglobin, anemia, liver failure and a few things I can't spell. 

[Luna7]

Ok I totally can't believe this! I wanted to skip 4-week labs because I'm very busy. You know, just some minor problems like my daughter having brain surgery due to a tumor found a few days ago, and having also just given birth, and I'm trying to get my house together to leave in a few days for the coast to assist for who knows how long. The doctor says I MUST COME IN, that her hands are tied, and that insurance could refuse to cover me if the virus is detected after 4 weeks. She said 90 to 95% of people clear the virus within 4 weeks and that they think it's not working if you don't clear! I specifically asked, you mean if the virus is detected in the 4-week labs they could cancel my medication?!  She said "they could".

This is just crazy, insurance making these kinds of decisions, and with inaccurate information. Or maybe they have accurate information and just decided that if you're one of the slow 5% or 10% responders there's a good chance you won't respond so screw u!

I'm trying to be calm, but it's not easy. I think too much stress hinders healing, so taking deep breaths. I have enough to worry about though without being thousands of miles from home trying to help my daughter's functioning return without worrying if they'll send me my last batch of meds. I tried to get the 3rd batch early before I found out this 4-week test problem so I wouldn't have to search for a FedEx in a strange city, but the insurance said no. The specialty pharmacy said their hands are tied, the Dr. said her hands are tied. I'm sure if I call the insurance company the front clerk will be tied up too. I'm surprised there's any rope left in this f*cking town!

[Luna7]

The good new though, and all that matters, is that my daughter survived the surgery and she is squeezing hands to say 'yes' or 'no'...so she's in there

I will be arriving as the 2nd wave of support, and help her improve cognitive functioning and movement on her right side.

[morab]

Holy Cr** Luna,
That is horrible!
And to think I went to a GI that got me 3 months of meds with NO FOLLOW UP?
What is the world coming to.
Here's to praying and hoping you get your next month of medication!
Will this be your second month?
And doesn't it take awhile to get test results?
Good gawd........
Morab

[dragonslayer]

Ok I totally can't believe this! I wanted to skip 4-week labs because I'm very busy. You know, just some minor problems like my daughter having brain surgery due to a tumor found a few days ago, and having also just given birth, and I'm trying to get my house together to leave in a few days for the coast to assist for who knows how long. The doctor says I MUST COME IN, that her hands are tied, and that insurance could refuse to cover me if the virus is detected after 4 weeks. She said 90 to 95% of people clear the virus within 4 weeks and that they think it's not working if you don't clear! I specifically asked, you mean if the virus is detected in the 4-week labs they could cancel my medication?!  She said "they could".

This is just crazy, insurance making these kinds of decisions, and with inaccurate information. Or maybe they have accurate information and just decided that if you're one of the slow 5% or 10% responders there's a good chance you won't respond so screw u!

I'm trying to be calm, but it's not easy. I think too much stress hinders healing, so taking deep breaths. I have enough to worry about though without being thousands of miles from home trying to help my daughter's functioning return without worrying if they'll send me my last batch of meds. I tried to get the 3rd batch early before I found out this 4-week test problem so I wouldn't have to search for a FedEx in a strange city, but the insurance said no. The specialty pharmacy said their hands are tied, the Dr. said her hands are tied. I'm sure if I call the insurance company the front clerk will be tied up too. I'm surprised there's any rope left in this f*cking town!

Wow Luna.. I dont think Ive ever heard that regarding insurance coverage before relative to HCV.... In the past, when interferon was used, treatment guided response required frequent testing, and the identification of non responders...

But with the new drugs, this protocol is no longer followed... With Harvoni, for instance, virtually Everybody shows a lower viral load after 4 wks of treatment... But MANY of us do not clear in that time..... Even with Interferon, it wasnt required that a patient clears early in reatment... only that he displays a significant decrease in viral load, the exact number of which I dont recall.

So, now, for your insurance company to demand an Undetected result after 4 wks really shows that somebody is not well versed in these new treatments.  Makes very little sense....  The fact that your doctor used the word 'Could' in that they Could stop coverage doesnt mean they would... Id be stunned if you showed a significant reduction in viral load from your pre-treatment level, and they pulled your coverage....

Congratulations, however on your daughter!      Best of luck ahead to both of you.

[brie41]

Hi Luna,

  I am so sorry to hear your Daughter and everything else you are dealing with right now.  Have you called your insurance co. and asked if that is accurate.  I am sorry if this sounds cynical, but my PA told me one thing before I started and then had me driving a very long distance for a 5 min. results visit, along with many blood tests.  I insisted on being told the results over the phone from now on.   We really do have to be our own best advocates.  I just can't imagine they wouldn't let you continue your treatment.  Good luck with everything.  Brie

[Luna7]

Thanks Morab, Dragonslayer, and Brie -- your feedback and support is much appreciated.

This is really strange, the vast differences in treatment procedures we are encountering. Fortunately I have the 2nd months pills in hand already. I agreed to get the 4-week labs done this Monday, just a couple of days late, and will know the results 3 to 5 days after that. Previously they wanted 2-weeks labs after beginning treatment but I got out of that. And my first appointment with them after beginning treatment was scheduled at 5 weeks. This seems very excessive.

It was all quite a shock to me, as I was just trying to get things in order to leave on this trip and so sent a message via the support portal online explaining that I needed to conserve my energy due to getting ready to help my daughter and grandchild, and that I wouldn't be there for 4-week tests and my 5-week Dr. appointment. I explained that I might get some labs done when I'm gone as I wanted to know if I cleared the virus, and that I would send those to them. Then I got a call directly from the doctor telling me I must come in, that it's non-negotiable, and that I must follow the protocol or they can't treat me. At some point I said this wasn't normal protocol and she went into the insurance requirement stuff.

I'm starting to think I'm in some kind of test or trial study. It is a teaching hospital. I'm wondering if that's how my Dr. even got me medication so soon. I did not consent to be in some kind of trial however, and had I known there was a possibility of being jerked off the medication I would have gone the generic route. Also, I don't want to participate in ways insurance companies are learning to shaft people (those people within the  5-10% of people who didn't clear at 4 weeks but would go on to achieve SRV if not jerked off their meds).

Why are they focusing on when people clear the virus -- are they too stupid to know that not everyone is the same -- shouldn't they be focusing on RAV's to determine who might not respond to treatment?  What's next, bloodletting?

Anyway, I feel very much under their thumb and don't like it one bit. I need to feel empowered due to all I have to deal with regarding my family and upcoming trip, and this isn't helping. I've decided not to call anyone - insurance or doctor - because I don't want to rock the boat and risk losing the meds. After I've swallowed the last pills however, they are going to get some phone calls and letters from me, and they will wish they never met me.

All I can do is wait for the results of the 4-week labs, and if they are bad I should get my ducks in a row with the generics. I would have about 3 weeks to get the generics if I want to continue uninterrupted, as my 2nd months pills would run out then.
However, I have a feeling my lab results are going to be good, if not undetected at least very low, based on how I'm feeling. Most of the horrible flu-like symptoms are gone! I still feel weak, but slowly increasing my activity is increasing stamina, and I continue to be able to do more without getting exhausted.

[morab]

Luna
I am glad to hear your daughter is doing better

[Baxter]

Luna,

I'm very sorry to hear everything you and your family are dealing with right now, and I wish I had time to compose a more thoughtful, empathetic reply. But I have to drive my wife to an MRI and have only a moment, and wanted to at least dash off a quick note regarding the insurance situation. I hope it's helpful.

Oddly enough, I'm inclined to be on the doctor's/insurance company's side on this one. You said they required 2-week labs, but you didn't comply with that requirement. Now they want 4-week labs, and you told them you won't be complying with that one either. From the insurance company's point of view, I can understand why they would discontinue  the treatment.

For many insurers, complying with all required labs is an absolute requirement for treatment. I had to sign a form promising that I would comply with all required doctor's appointments and labs, or that treatment would not be continued. From some insurance companies' point of view, the labs are not about verifying that you are responding to the medication, but simply verifying that you are taking it. Almost everyone who takes Harvoni on schedule shows a drop in viral load - if someone is not, they might begin questioning whether you're taking it at all.

If you don't show up for either the 2-week or the 4-week, then yes, I can understand why they might stop treatment. They're paying over $30,000 a month for the medication, and they want to make sure that money is being well-spent. I know that if I missed both my 2-week and 4-week labs, I definitely would have been cut off, and from what my doctor said, it's quite possible that had I missed even just 1 of the 2, that alone would have been enough to cut me off.

I don't mean to pile on when you're already going through so much, but I don't think this is a case of the evil insurance companies finding some devious way of shafting the patient. You say you told your doctor that this isn't normal protocol, but what are you basing that on? If it's their normal protocol, then it's normal protocol. I think your decision to not communicate any further with either your insurance company or your doctor is absolutely the opposite of what you ought to be doing, and has the highest chance of getting you yanked off of your meds. What you should be doing right now is communicating the hell out of everyone involved, and asking them in a non-confrontational and non-adversarial manner exactly how all of you can work together to get this problem solved. 

At any rate, I have to get my wife in the car and get going. Sorry if this sounds blunt, but I had to hurry it. I wish you the best of luck in getting this sorted out, and of course I wish the best for your daughter and the rest of your family as well.

[Luna7]

Luna
I am glad to hear your daughter is doing better

Thanks Morab, yes every day she just keeps getting better. Yesterday she moved her big toe on the disfunctional side, and she's even smiling now at visitors! She did have 2 small seizures but they said that was common and not to worry, and they increased her seizure medication.
This was a 'good tumor', if you can call it that, and though it was very large it did not branch out into her brain on the left frontal lobe, but instead was pushing her brain out of the way -- so this won't be a case of 'how long can we keep her alive' as the tumor keeps returning over the years. She may have some limitations and never be 100%, and a long road ahead to be more functional, but I think it's going to be okay!

[Luna7]

Luna,

Oddly enough, I'm inclined to be on the doctor's/insurance company's side on this one. You said they required 2-week labs, but you didn't comply with that requirement. Now they want 4-week labs, and you told them you won't be complying with that one either. From the insurance company's point of view, I can understand why they would discontinue  the treatment.

.... I wish you the best of luck in getting this sorted out, and of course I wish the best for your daughter and the rest of your family as well.

Thanks for the well-wishes Baxter, and this information is good to know - that others are having these restrictions put on them via the lab work, and so it's less likely I'm part of some experiment I did not consent to.

I do understand their concern about money & the desire to make sure patients are actually taking the medication (my bill is actually $151,400.00 for Sovaldi & Daklinza). However, there should always be exceptions, clauses, and money should not rule everything (am hearing the song 'Imagine' playing in my mind now...lol...yes dream on). There are other ways besides tests that could have determined whether I'm taking the meds. I have a case manager from the specialty pharmacy, and we've discussed my reactions to the medication and other concerns numerous times. I wrote a very long description of everything I'm going through on my doctor's support portal website.

I don't feel they've adequately looked at my side of the situation. During the time I was to take my 2-week labs it was actually dangerous for me to be on the road due to missing stop signs and the like, and it's a long drive to their office/labs. And this is causing a lot of undue anxiety, worrying whether I will get the 3rd batch of drugs, while I should be focusing on my daughter and grandbaby.
And it was not right that it was not explained to me that I must stick to their exact protocol regarding lab work or meds would be refused, nor was it explained to me that treatment could cease if my 4-week labs still show some virus present.

As I said before, though perhaps not clearly, I am going to comply completely, and smile sweetly from now on. But I will look for another doctor after finishing the medication. I want a doctor who actually listens to what I'm saying, and considers me an active particpant in my care. I'm not looking for a 'DaddyDoctor', and if she actually read medical journals (not sure she does) she'd find out that those who are more proactive actually have better outcomes and be glad of that. And I'm speaking to many interactions with this office and not to the insurance requirements that I think truly are a restriction for her.

She was so busy talking in both of our appointments that I could not get a word in edgewise, and both her and her nurse act defensive when I refuse to follow their advice. She even called my intitial attempt to be very clear with my concerns via the support portal "long-winded".
She just would not shut up during our first appointment and hear me...I was so frustrated I put out my hands in a STOP signal and started to cry, which is something I never do in public. She was going on and on about many patients not getting better from these drugs, and how most people will die of something else besides HCV, and I was starting to get upset because of realizing she's one of those types who does not realize that HCV is a systemic disease. It was almost like she was discouraging me from treatment! This was amidst all the mentioning of colonoscopies and mammagrams I should have, and telling me she wanted to treat all of me, not just my liver. Oh the irony of that one -- treating my 'liver' DOES treat all of me.

Now she did change her tune after seeing my tests, which indicated my liver is not doing so well. Thank god for that, I guess, otherwise I'd still be sitting here feeling like I had the flu with blurred vision, extreme fatigue, aches & pains, foggy head. But okay, I wouldn't be sick because my liver isn't!

[Luna7]

You know, regarding this obsession some insurance companies have in making sure patients are taking these expensive meds, requiring excessive tests and Dr. visits -- this probably costs them more $ in the long run paying for all the additional monitoring vs the cost of the few irresponsible patients who got the expensive meds and stopped taking them!

Gotta love bureaucracies and the patriarchy!

[FutureThinker]

Hi Luna7, I was away for the weekend and am shocked to hear this latest issue for you.  First of all, I am so sorry to learn about your granddaughter's surgery and she is in my prayers for a speedy recovery.

Secondly, can't believe this insurance nonsense you're going thru -- guess this is the next hurdle they'll put us thru now that more and more are covering the treatments. Baxter does have a point re: their requirement for 2 &/or 4 wk tests.  I had seen that mentioned in the past in some other posts, in addition to illegal drug urine testing. I know I had to sign a 3 page agreement w/ my doctor re: Harvoni treatment prior to starting.  It included the need for adhering to test requirements, etc. Since I am one who did NOT get an UD 4-wk test, your doctor needs to educate the insurance on this important fact!! This is part of the issue here:  this treatment is so new, seems a lot of involved parties are not well-versed in the current status of these new DAAs.

Also, I found that not all parties are communicating all the time, esp. when I was trying just to GET the drugs delivered sooner vs. later. I had to take it upon myself to call all involved repeatedly to get that lst delivery to my door asap.  Other forum members encouraged me to do that, and it helped.  So I agree with increasing communication more than not. I probably wouldn't have received my drugs for another 5 days had I not gotten involved.

You are right in that not enough explanation is given more often than not with our treatments; we really have to be our own advocates, unfortunately.  I just don't know what's happened to our healthcare system, everyone is just too busy it seems to do their job at putting us, the patients (the important part!), at ease and improve confidence and trust.

Dragonslayer recently gave an excellent link to a study that looked at and VL and SVR -- take a look at it if you haven't seen it. I think it was in answer to Baxter on frequency of tests?

I've had run-ins with my doctor's office, too.  Just hang in there and get thru this and on to the other side -- SVR.  That is our goal, despite what these caregivers do or don't do.  Just keep your eye on the ball -- you're 1/3 the way there! And please keep us posted on your granddaughter's status and your lab results -- fingers are crossed! FT

[Luna7]

Thanks FT. My daughter is getting better every day, and though not moving the right side of her body much she did say her first words though with great difficulty. She's eating now, and no more oxygen, feeding tube, or catheter. She'll be leaving the hospital where she had the tumor removed for an acute care facility very soon, and will get lots of rehabilitation therapy there. I'll be visiting her @ acute care and taking care of my new grandson, and then will try to help her recover functioning when she returns home. Fortunately her husband is very helpful as well as her father & stepmother who live in the area.

I did call my insurance company to straighten out some bills (what a nightmare!) and inquire about all the testing, explaining that I want to meet their requirements fully so that I will get that 3rd batch of meds, even asking for doctors and labs they cover in San Francisco where I'll be mostly staying. She didn't know of any requirements about testing and researched a bit, finding none. But I explained these medications are very new with strict guidelines, and perhaps current information hadn't made it to what she was reading, so she will get back with me.

I think part of my problem is that while wise in some areas, like Social Work, I am actually very naive regarding medical issues. I have avoided traditional medicine like the plague, knowing that any intervention can just as easily kill you as help you. In fact, it did kill my mother when they cut out her 'ladyparts' to solve a minor 'female problem' (a very common, insane dynamic of the time and possibly still going on to a degree)- she got HCV then and ended up dying of liver cancer. I'm pretty sure an intervention with my father killed him too.
So, I have not negotiated with insurances and medical professionals much at all other than a stay in a hospital after a car wreck years ago, and even my daughter had no medical problems growing up. But I am learning fast and will really getting up to speed with my daughters troubles of late.

It's good to know you've had run-ins too, and that many have, as there are points when I start to think there just must be something wrong with me, and then I oscillate back to thinking the medical professionals are all nuts. I'm trying to find a way to be diplomatic in my approach. I am finding that many of the same things I learned in Social Work can apply, as well as simply relating to others in an open, less-defensive manner -- trust but verify.

Thanks, yes, just keeping my eyes on the goal and letting all this weirdness with my current doctor slide away. Whatever her faults may be, she got me this medication, and the lessening of so many of my symptoms is enabling me to better deal with what I need to do now to help my daughter.

[Luna7]

Since I am one who did NOT get an UD 4-wk test, your doctor needs to educate the insurance on this important fact!! This is part of the issue here:  this treatment is so new, seems a lot of involved parties are not well-versed in the current status of these new DAAs.

In the last conversation with my doctor, where she was insisting I get the 4-week test, and again not letting me get a word in edgewise, I finally said, "Please, just hear this one thing. On a forum some people are saying they were still detected after the end of treatment even, but went on to clear the virus in subsequent weeks. And these people are not flakes, they are intelligent people" (I added that last bit because she is the one who told me you can't believe everything you read on the internet).  She was silent, but I hope she took it into consideration.

[Luna7]

Just when I was on an even keel now this!  My ex-husband and his wife are worried about me being around the baby due to my Hepatitis C, and expressed this to my daughter's husband. Now I didn't get defensive when my daughter's husband expressed this concern a couple days ago, as there's no reason he should know about all this, but my Ex and his wife are medical professionals!
 
I will attempt to calm down before calling them and explaining facts. The strange thing is, my ex has had a lot of fatigue of late, and I bet he's never been tested for HCV.

Fortunately my daughter's husband is fine with everything, and maybe with some education via recommended reading the others will be too.

[Luna7]

I have felt like such a toxic piece of shit for so long. 
I will not feel that way anymore!!

[KimInTheForest]

I have felt like such a toxic piece of shit for so long. 
I will not feel that way anymore!!

Good for you, Luna! That's the spirit! I think many of us have struggled with that in one way or another for years. (And the struggle doesn't really end when the virus is removed from the body. It takes a long time to undo the bad programming and conditioning of a lifetime.)

You are going through hell right now on many fronts. You are a very strong person to carry on and persevere through it all. So glad to hear your daughter is doing better after surgery!

Good luck,
kim

[FutureThinker]

Oh Good God, Luna, I am so tired of people talking without doing any research before they open their mouths!!  1) Atta girl, you are doing the best thing you can to try to improve the communication lines, so very glad to hear this.  You need to get all these meds and SVR, that is what is most important!  2) Scroll up to dragonslayer's post dated May 17, 2016 here and download that article on VL & SVR and give it or send the link to your uninformed doctor.......... that will give you credibility and hopefully make her realize she needs to read more! Also, if she said 90-something % clear in 4 weeks, THAT MEANS THE OTHER 5% DON'T!! Simple math here. I didn't clear until my 8 wk labs. 3) Find some credible link and download how HCV is AND ISN'T transmitted for the relatives.  If they still don't believe it, tell them to talk to the doctors there!!!! 4) Try to stay away from referring to "a forum" as it seems to shut down the conversation when I'm trying to make a point.  Instead, provide credible evidence (hard copy or link, but hard copy probably is best!) to those who are questioning your facts. Sad truth is that we have to educate a lot of folks on this disease, right or wrong, good or bad.

As I said, we unfortunately have to be our own advocates. So glad to hear your daughter (sorry I got it mixed up with granddaughter) is doing better and I will pray for her recovery with rehab!  Keep us posted, FT

[brie41]

Hi Luna,

  First I am so glad to hear that your Daughter is doing a better.  It sounds like it will be quite a long recovery, but also sounds like she has a great support system with all of you looking out for her.  I am sorry that you are being treated like that, but you know fear brings out the worst in people.  I know it isn't easy to not be hurt by this but you know you are not toxic and if you are than we will all be toxic together.  I have only told a handful of people as I know what their reaction would be and mostly it is none of their business.  I am very careful and anyone who I thought needed to know was told.  I told my Dentist and I will never forget how a new Dentist at the office treated me.  She came in and started talking very loudly about my condition.  I was horrified as I swear everyone could hear.  I asked her to not talk so loud but she just went on a rant.  I really wanted to get up and leave but I didn't.  I did however complain to the manager and thankfully she left soon afterward.  I actually think she thought I was the only patient that had hcv.  How ignorant is that for a medical professional.  Anyway, you just hold your head high and keep thinking that soon this will be behind you!!  Brie 
ps Sorry for my rant!!

[Luna7]

Thanks everybody for your kind words and support...I had so much more to say but I'm half dead getting ready to catch a plane...so later I will..

Just wanted to say that I got that 4-week test result and I am undetected!!
And alt and ast down to 19 and 24...way down from where they were before.

[FutureThinker]

EXCELLENT!  Hope things go well once you get to your destination.  FT

[morab]

Congratulations Luna!
Good luck on your trip and enjoy that grand baby!
Morab

[crabby old guy]

I have to go every 2 weeks for blood work, but I'm on the riba and have cirrhosis, I'm lucky because I'm 5 min away from lab and I get my results online in 3 days but there are so many tests that are being done that it gets overwhelming I end up writing down what's flagged as low or high and look it up. I sometimes wonder if doc even looks at them, 1 of them was a tumor  marker I had to mess her after  4 days and not hearing from her. All the tests are doing is causing more stress. Gotta say it's actually nice reading all of these posts with people ragging about the docs, I see min tomorrow and I have to remind myself not to walk in with a shitty attitude.

[AussieRosa]

Can't blame you, Crabby. So many of us have had to endure years of ill health. Adding inept and insensitive medical professionals on top of that will give anyone a shitty attitude. The forum is a great place to let off steam about these things, so don't hesitate to keep us informed and vent to your heart's content. Hope they lift their game a bit and start treating you with the dignity you deserve.

[morab]

crabby,
I feel your pain, my specialist got me Harvoni and offered no follow up at all. Left me hanging, thank god I have a great GP who stepped in to do my testing. I feel pretty crabby also. I am on my last 2 weeks of tx and I'll be damned if I feel just like I did the first 2 weeks, which for me were living hell!
My body is telling me to just stop taking the drug and leave that last week off, but I know I really should finish the tx. To all of us who SUFFER through the 12 weeks of treatment I do hope there is light at the end of this tunnel!
Hang in there crabby you joined the right club!
Morab

[crabby old guy]

Went to the doc today, saw the PA-C she was there on my 1st visit. Got on her about the doc telling me there are almost no side affects and she said I'm in the low % of people having so many of them and the sleep problem could be part of feeling so crappy and my cirrhosis could be part of it too. And now the thing that is unbelievable, because of my ins my meds come from a certain specialty pharmacy and they have their own hep c pharmacists that monitor my blood work and are the ones who have me going every 2 weeks. My doc sees them too and we agreed that an RN will reply to me every time results come in. Asked why it went from 12 wks to 24, That's what the ins recommended!!!!! even though on 4-29 its UNDETECTABLE I need to stay on it. A 28 day supply w/o ins is over $28,000 I pay $45, their fn nuts they will cover another 50K when even the doc says I could stop. She said that unfortunately they don't keep up w the research being done.

[morab]

crabby
It sounds like Gilead is trying to make as much money as they can and fast. What genotype are you that they want you on 24 f/ing weeks? I am feeling like I am having to force my last week of pills down my own throat I am so crabby and full of symptoms, they just refuse to go away! I have about 1 good day every 10 days since on tx. Are you seriously going to take another 12 weeks of treatment?
I am wondering why some folks like you are getting more than is needed while others can't get it at all!
morab
 feeling crabby myself

[crabby old guy]

morab, I'm geno 3 and all my blood work looks really good, that's what I don't understand normally ins company's are tight wads. If I stop on my own and by some chance it would come back ins could denie coverage. Even doc is frustrated and feels sorry for me. It's like she said they don't keep up with latest research and don't know how good the new meds are. She said the same thing, I have great ins but she sees so many peps that have crap ins and have to go to another state to get meds.  hep-c can be cured, so the drug company's that make gazillions of $$$ off sick people should cut the price of the meds so low that everyone can get treated. It is outrageous that 1 pill is $1000.00. As far as the sleep thing goes, she said some of her patients are using MELATONIN or NATURAL CALM-MAGNESIUM SUPPLEMENT and it helps. I'm trying to stay 1/4 positive, I'm off work the whole month of July so I'll handell the shit better and my cat doesn't care if I'm crabby and then I'll deal w August when it comes by looking forward to SEPT 2ND, the last day!!

[morab]

crabby
I tried that magnesium calm and I ended up on the toilet for hours, I use a monomagnesium malate made by MgBright. It has helped with my leg cramps big time and the sleep also.
I wonder if genotype 3 requires a longer dosing? I am 1a, but everything I have learned has been on this website!
I am keeping my GP informed and he is happy to learn from me, I am fortunate to have a genuine GP who actually listens to his patients.
I did have to sit myself down after the first 2 weeks on tx and have a serious talk to self session to stay positive and realize this would all be over before long.
Keep us posted on how the rest of your tx goes.
Best of Luck that we all graduate in the near future!
Morab

[Gaj]

Hi Crabby,

The reason your insurance company is requiring you to treat for 24 weeks is because Gt3 is now considered the most difficult to treat. For those Gt3s who also have cirrhosis the usual recommendation these days is 24 weeks.

https://www.hepmag.com/blog/hepatitis-c-genotype

So in this case your insurer is following best practice although with Ribavirin in the mix I can fully understand that it doesn't help your cat lead a serene lifestyle. Just keep telling him (and yourself) that it's only the meds making you like this and will be over by September.

[crabby old guy]

Gaj,

Thanks for the link, I've been reading a lot the last couple day's and I only want to go through this once so I'm just gonna deal with it, I really should have done  more research when I started treatment because doc made it sound like, take the meds for 12 weeks and I'm cured, no side affects. I should know better.

[Mila]

Based on what the harvoni nurse told me on the phone they at Gliead are asking everyone for any information that can help them. She told me that they are counting on us the patients to tell them what's going on with our bodies because they really don't know. I'm sure they are asking the same of our doctors. They called my doctor when I reported side effect to inform them and Gliead contacted me to answer some questions.

My guess is that Doctors are trying to figure all this out too. We are their windows to the unknown. Literally.

So I think that many doctors are testing to answer their own questions and map our progress. If your doctor is that far away then tell them its becomong more difficult to go in so often. Ask them if you can get results on the phone or in the mail and only show up for needed treatment. It would really bother me if you or your insurance are being billed each time you go in. If so I'd definitely ask about it.

[FutureThinker]

Mila, great advice to all on this forum! Whether we like it or not, or "signed up" for this role or not, we are the pioneers for these new DAAs so any info we can offer is important. So everyone having a rough time of it, please let the drug manufacturer know about it, so they can improve their protocols in the upcoming year(s).  We are all going to get cured, AND make our own contribution to science! (How's that for a positive spin?)  Hang in there, FT

[morab]

FT
I called them during that first week and they acted like they would be calling me back,they just sent me a bunch of junk mail like I already had.
So I will call them tomorrow and read them my journal of symptoms I have been through during the past 12 weeks. Yes they need to know this and I know the Gastro Dr. who saw me isn't reporting anything, nor even seeing me after getting the medication.
I think my GP is so new at followup with me being his first patient to ask for help that I doubt he has called them either.
So to all of us who are symptomatic or not, we do need to ring the phone off the wall of Gilead so they are aware of just how many of us aren't doing that well while on the new drugs.
Yes I do believe we will be cured! But they do need to know about us here on the forum.
Thanks FT for the push to call
morab

[Luna7]

Back from helping my daughter in San Francisco with brain surgery and recovery, living in hospitals and all sorts of crazy stressful stuff. If I continue to be undetected at least I will be one example of treatment working even when one is under extreme stress.
I am very grateful that the Sovaldi/Daklinza worked so well that my health began improving after only 2-3 weeks. I would not have been able to help my daughter much at all pre-treatment.

I think my daughter is going to be around awhile, though finding out her tumor was cancerous at stage 3 was not good news. Her genetics came out good though, along with some other factors that enable brain cancer survivors to live longer. Most likely I will get an RV soon and travel out there, camping an hour or 2 away, in order to enjoy nature, my daughter, and my new grandson.

In an hour I take my very last does of Sovaldi/Daklinza!  Seems it went fast, but on another level seems it's been the longest 3 months of my life.

I just can't believe the improvement in health, and it keeps getting better. Before, I had extreme brain fog to the point of feeling like it was dangerous to drive, I felt like I had the flu and, strangely, my brain felt 'on fire'..similar to having a fever...and this caused me to feel emotionally off-balance...and I had to do the dishes in shifts due to extreme fatigue. But now I can work out in the garden 3 hours at a time, albeit I took some breaks here and there of lying flat on my back.
My joints have really taken a hit though -- I had a few joint problems before treatment but while on treatment this increased dramatically. Especially in my knee, which I could not bend without severe pain, and going down apartment steps in SF was excruciating. This seems to be subsiding now though -- I have a theory that (for me) it's my joints trying to heal from the inflammation that went on for years and has now decreased, creating bone spurs as joints attempt to heal -- and not the medication itself doing damage (I do have a loud clicking in my knee, very loud, and feel the resistance of something being in the way when bending it).

I will speak more about the 'frequency of treatment' issue later...