After finishing Tx how soon can you have a PCR test that would be reliable

Hi Just finished 2nd go round on tx (Peg + Copeg) for 48 wks and want to know how soon I can have a PCR test that you can count on as being reliable. Last time I had to wait 6 mo to get tested and this time he said 3 mo before being tested. I'm a 1b Stage 2 grade 3 with a starting Vl of 2 million but "0" at wk 12,24,36 and 48

[jmjm530]

Six months is still the gold standard for SVR but studies suggest three months about as accurate.

If you're antsy -- and who isn't -- some doctors say a negative one-month post treatment PCR translates into about a 90% chance of being cured.

-- Jim

[painintheside]

Hello,
Sorry to bust in on your thread but have no more slots left. Can I have flu and pneumonia vaccines same day as Pegasys shot? Any rule here for that? Or any comments or opinions?

Thanks,
Dana

[Califia]

First, the PCR issue:   A recent study indicates that  a 1-month PCR is highly predictive of final response to treatment.   FYI, my own doc scheduled testing for 1-month post, 3 mos-post and, of course, 6-months post.   Relapse tends to occur quite soon after termination of drug therapy.  As far as I'm concerned, making a patient wait 6 months is cruel, if not unusual policy, and the so called gold standard probably has more to do with cost efficiency than good science.   I don't have the study handy but am sure that a quick Google will locate it.  

As for the multiple shots, there is no medical reason why you can't  do them all at once, but in my own experience the aftermath was unpleasant.   Doing it all at once may be expedient, but you can end up with an extra helping of "flu-like"  symptoms.   Hope this helps!

[cuteus]

is it this one?
http://hcvadvocate.org/news/reports/AASLD_2004/Posters_AASLD_2004.htm#A62

my dr wrote an article in which he stated that the PCR should be a sensitive qualitative test. But, his PA did a quant. I guess they don't read his writings.

[Fisheress]

I spaced out all my shots in over a weeks time.  Did my injection on Sat. Night, Flu shot the next tuesday and a week later my Hep B booster.  I had my phenmonia shot 2 years ago and I think they are good for 5-10 years.  Not sure though.  I would not try to do everthing all at once.  You may find yourself with the flu like symptoms I have had to endure the last few days along with sore arms.

With that said, really think about spacing the injections out.

Good luck.

Fisheress

[stc1993]

I just got the liver function test at 3 mos. Just got it about 4 hrs. ago. My dr. makes you wait 6 mos. for pcr.  My fingers are still crossed i'm praying no elevated no's.

Monte

[Shanaenae]

I have already had my first round of Hep A and Hep B Vacs. I go in on Nov 28 to get 2nd round of Hep B and final of Hep A, then i go in a month later for my pneumonia and then a month later for my tetanus (sp???). Then four months later i get my final Hep B. My doctor recommended not taking all the shots at the same time because of the same reasons as above.... can make you feel really poopy, but i guess if you want a trial for how you might feel on tx, then it might be a good test run! LOL

I am also not starting treatment until March 2006, so i have the time to spread them out!!!!!

[FlGuy]

Thanks for that link.  I was thinking that 6 months was going to be a looong wait.  Have something to arm myslf with in case my doc is playing golf and not in SF where he should be - learning more.

[kespr]

Do we as patients have any control over which level PCR test we can have or does Insurance control which test we recieve

[susan400]

As far as I know, you can have a PCR anytime, on treatment, or off.  I guess I really don't understand the issue here.  At one point, I was actually getting monthly PCR's.  If you use a reliable lab and go to the same one every time then, I don't know the accuracy would change just because you're off treatment.  Either the lab is reliable, or it's not.  

Susan

[cuteus]

with some insurance companies the dr can word things just right so that it gets approved if the patient insists. I cna get my PCP to order one also and never got rejected by the insurance co.
The GI can exert influence on the insurance companies more times than they do.
I did not have to insist with mine, TG.

[jmjm530]

My doc's hospital lab only goes down to <600 but I asked for a Heptimax from Quest Diagnostics (<10) as soon as I learned what it was. No problem. As long as your insurance covers it, I don't see why a doctor would stand in the way of a more sensitive test, but then again, some are very pig headed.

-- Jim

[sailinlady]

Sorry to barge in here but I badly need some advise.  My insurance company (who I have to fight tooth & nail for everything) refuses to pay for Procrit ($2400).  My doctor will not allow me to stay on the tx without the Procrit because my levels are too low and I am too sick.  What now?  I just want a beer....

[mikesimon]

I'm pretty sure the Heptimax detects down to <5 IU/ML. Mike

[jmjm530]

What's 5 IU/ml between friends :-)

Yes, Quest's TMA portion of the test goes down to 5 IU/ml. I stand corrected.

-- Jim

[genedog]

i had the flu and pneumonia shot while on tx wow kicked my arce for 1 day but glad i got them

[GoofyDad]

Beer is known to have a positive affect on Vitamin B, which is good for hgb. Go for it!

Nah - on second thought, don't. On what grounds did they deny it? My Doc codes it to 'Support of Chemo Therapy' (or similar). Did you look to see if the Procrit mfr. has a compasionate care program? I know there's one for Neupogen and I think there is for procrit too. Google for it a bit & if see what you find. If you don't get anywhere post again and I'll try to find something.

[jmjm530]

I want a beer too but let's put that aside.

My insurance company tends to turn everything down the first time but usually ends up coming along. The problem in most cases is that the drug needs pre-certification per specific "criteria". If your doctor's office doesn't specify the criteria -- and invariably they don't -- the drugs don't get approved.

What works for me is speaking to a supervisor at the insurance company. So, using your case, I'd ask  what's the criteria for Procrit for someone on combo therapy for hepatitis c. Once you find the criteria, hopefully your doctor's office will take it from there.

If that doesn't work, hopefully someone has some other ideas.

-- Jim

[sailinlady]

aww, yes, a beer.  oh, sorry....  

Dr & pharmacy have both told me the insurance will only approve Procrit for cancer patients.  My Dr's nurse argued that interferon is a type of chemo therapy and got no where. I would think she would have specified the criteria but maybe not.  I will find out.  I'm not giving up yet, I'm just so frustrated (and sick of being sick).  I need it now, I should do it tomorrow because I do my Peg shot on Friday.

Still searching the web.  I couldn't find anything on Procrit's web site about help with meds.

Thank you both.  Your posts are both informative and enjoyable.

[johnisme]

Hope this helps. Procrit Asst. site..http://www.aidsmeds.com/drugs/Procrit.htm

Its on that page towards the bottom, heres their phone number for help getting it paid....1-800-553-3851

Good luck ...John

[GoofyDad]

Think you will find the Procrit/hgb issue is tied to Ribavirin - so don't stress the upcoming INF shot. I think there is data that shows procrit intervention is cheaper overall than suspending therapy - but good luck fighting that battle.

Idiot's opinion is the Ins company may not arbitrarily classify drugs as chemo or not. But consider the source. Good luck.

[wonderingwhen]

I just returned from seeing my NP and my hgb's have been fluctuating, they are up to 10.2 on last lab but were in the 9's the last two. I asked for Procruit today and the NP said that the insurance co's won't approve for HepC tx but will approve for anemia. She gave me a rx.I quess it's all how they word it. I am doing third shot of Neprogen tonight which my NP said were about $1000.00 ea and the Procruit is about $500 ea WOW pretty expense tx huh? I hope you get your rx just have them word it properly.
By the way if any of your Dr's are still in Frisco I don't think they are attending the Conference according to my Dr it ended at noon yesterday, he and NP attended. Maybe they are hangin out in the Castro district, just joking, I hope!

[wMich]

I've found that if a lab is one of the insurance company's "approved" lab providers, an Rx for a draw and test from one's doc should get the cost down to a copay or at least the in-plan discounted rate. Thus it pays to check the provider list. This should fly for Quest and Heptimax as well. At least I'm hoping so. I used Quest for my diabetic bloodwork up until being diagnosed with HCV and starting Tx. I then started with my doc's hospital network labs for convenience and consistency. I want more precise results than the <615 IU "undetectable" I got at week 12 so.... in 8 more weeks I'll be back in the chair at Quest.

[sailinlady]

Thank you everyone for all your support & help.  I'll be spending the day at the hospital tomorrow because my mother-in-law is having surgery.  Guess I'll be taking my cell phone with me.  Hopefully if it gets too bad they will sedate me and give me my own bed.

Thanks again, it means a lot to know you are all here.

[strator]

I need to get a little proactive advice here. I stopped in for my wk/8 cbc today. The nurse?tech? that takes the blood  asked how I was feeling. I told her I have been more tired and extra achy the last 2 weeks. Will get results tomorrow or Friday. (I've listed the previous results below.)
Anyhoo I said 'so if it comes to it, you guys use procrit or nuetro whatever?' She mumbled yeah. Then she looked at me and said 'actually first we'd lower the dose and if that doesn't work stop treatment. I didn't look up I just stated 'Well we'll talk, not gonna happen, not now. Hey right now I'm still able to do construction.'
I may be fine and don't wanna jump the gun. I AM more tired. Course I'm also a busy guy,more so with Dad's surgery and rehab now. For all I know my doc may be fine w/procrit if needed. Wasn't something I asked about pre tx. Just looking to be 'armed and dangerous' if it's an issue.
What are the normal criteria for procrit?
What are the danger levels that may truly require dosage reduction?
What advice or arguments anyone would suggest to refuse reduction or insist on procrit? I don't think insurance coverage w/be an issue.
wk/2 hemoglobin was 14.4 wk/4 was 12.6 L
wk/2 RBC 4.67, wk/4 4.12 L
wk/2 hematocrit 41.5, wk/4 was 35.4 L
wk/2 platelet 160, wk/4 109 L
wk/2 abs neut 2102, wk/4 2141

[landfill]

They're probably refusing to pay because its an off-label use of the drug. My dr said that when a patient runs into this he writes a letter explaining why he needs it and attaches a published paper about its use in hepc tx. He said they usually pay.  The on-label use is, of course, anemia caused by chemotherapy.

[FlGuy]

Looks like you do cbc every 4 weeks? If so and hgb, anc's and plats continue to get lower you may consider more frequent CBC - every week or two.  You'll read that procrit/epo for anemia/low hgb is slow acting.  So, if you wait longer between cbc's and intervention is delayed and meds take a while to kick in you could be affected longer (tired, low energy, stamina, short breath - this is low hgb) than necessary.  Other know lots more about hgb/procrit/epo than me.

[Tyree2005]

I saw my doctor yesterday and if you recall My labs came back with not only Hep C but + for Hep A also.  Well my doctor told me I did not need to do anything about the Hep A because my body fought it off and I can not get it again.  I will be starting Peg-interferon and copegus for 48 wks.  I am having problems with my insurance covering these meds and also meds for anemia.  I have been working for years and I would be very pissed if now that I need meds my insurance will not pay.  This long journey is starting off bumpy......  If anyone know of someone or had insurance problems let me know.
Peace

[FlGuy]

Some insurance cover these items under the medical aspects of coverage and not pharmacy.  Some insurance cos. will also require you to get the meds through their specialty pharmacy (Aetna does for me - for Peg). If you are pursuing coverage issues/Q's/problems make sure your doc's office is also working the issue - that's why there are so many people behind the sliding glass window that has a ragged paper which says 'please do not touch the glass'

[NYgirl]

Well I would like a great big vodka but let's put that aside too!  ;-)

My insurance company turned the Epogen ($6000) down the first time too - the lady at the pharmacy was AWESOME and although it wouldn't go through she kept TRYING and got it to go through by using a number of DAYS instead of what the doctor had written somehow or something.

I wouldn't give up.  I mean it is a critical thing to have!  CRITICAL!!!!!  How can they do that makes NO sense to me!!!!!

Don't give up...can you have someone from the doctors office like the Nurse Practitioner make some calls to the company for you?

[GoofyDad]

There is no call to dose reduce - unless it's a financial or insurance issue. I'd have that conversation now - difficult as it may seem. I'd guess no panic on hgb until less than 10 - and you'll know when it's bad. Although I was functional at 10.5 - I wasn't digging any holes - I WAS climbing a ladder, but I'm not known for the soundest judgement :)

For males, Ins. will usually go for procrit below 11. My doc didn't want me below 10. Chest pain would be a bad sign, worse would be body temps rapidly declining to room temp or unexplained smells of peutrification..... good luck!

[FlGuy]

The ones I'm more familiar with are Plats. and ANC's (absolute neutrophils).  For Plat's concern is around 50, danger around 20. Remedy is Neumega.  For ANCs, docs intervene somewhere between 400 - 1000 (mine act anytime below 1000) with Neupogen or Neulasta.  Neulasta is a slightly longer affecting version of neupogen (pegylated).  All are expensive so get an idea of the cost/coverage.  Make sure the doc prescribes it such a way that it's insurance-beneficial to you.  Plats seem to fluctuate without rhyme or reason and I can't correlate fluctuation to any other results.  Try to avoid dose reduction or med interruption.

[sailinlady]

I will have to get my boxing gloves out I'm afraid.  This insurance company is incredibly anal.  They approved the first two of three epidural blocks for my husband on his back and denied the third one.  Go figure.  I have a stack of bills I am currently fighting with them on, they paid for his biopsy and not mine, and so on...

I think I will start with the pharmacist because he was the one who managed to get Pegasys approved (after two weeks). It absolutely makes no sense to me.  If I have to stop the tx, it is going to cost them a whole lot more in the long run (if my liver continues to deteriorate).

Wish me luck!  Thanks much for the support.

[NYgirl]

Gosh does that make sense? Why would they rather NOT give you the procrit and then let you have to have MAJOR problems they will pay for later? Maybe they figure they won't have to and you will have different insurance or some SICK thing down the line.

It INFURIATES ME beyond belief.  The Epogen has literally SAVED me from going off tx.  I could NOT have continued on. I dropped from almost 15 to 9 in just a bit over a week (10 days) and it was the so so much worse than any of the tx it was beyond belief!

My pharmacist is the one who saved the day for me.  After she got it approved that first time...........now it just goes straight through and I have no worries any longer.

I sure wish you the best. Don't give up.  Eventually maybe they will get sick of hearing from you and just do the RIGHT THING!!!!!!!!!!!!!!!!!

[strator]

Thank you fine gentlemen! That helps. After I get the labs back I'll try to set up for a talk regardless of the readings. Just caught me off guard yesterday cause she referred in case - reduction or stopping tx like it was nothing. I'm sure it'll work out-I can do a great 'A' personality impression if I really need to.

GoofDude!!"unexplained smells of peutrification......???" And for all those years I thought it was the aroma of the fermented potatoes I chugged.

FIGuy - OOOOOOHHHHHHHH......now that makes more sense- my drs  sign must be fading .. it seemed rather presumptive
"please keep your hands off the lass!"
Taaaaanks guys.

[FlGuy]

I had no noticeable effects from the Neupogen at all. Had a couple of courses. One - two days in a row, a second - three days in a row.  Had Neulasta thrice (each a 1-shot deal, instead of 'gens multiple doses).  Neulasta gave me the effects you describe, sort of like those famous flu-like symptons and seemed to effect lower body more. I guess it was the pegylation - not sure.  In all cases, was admin by the folks at the Hemo office after CBCs, not self injected.  ANCs have strangely stabilized over the past few weeks - another mystery.

[GoofyDad]

I just got a delivery of Neupogen today - so this question isn't so timely. Anyway - the Neup has started to make me feel cruddy for 24 hours post injection. I wonder if the Neulasta might be a better choice. I'm doing the Nuep 200 units twice a week. How often do you do the Neulasta?

[friole]

Ok FI-FL guy --- once and for all -- this has been driving me nuts for weeks now.  Are you FI as in Income tax of FL as in Loophole?  Tell me the meaning of your name please (I'll tell you mine if you tell me yours, ha)

Goof -- I have had 2 neupogen shots so far and have felt absolutely nothing.  No burning or after effects.  Only thing - both times I had a drop of the Neuo appear when I pulled out the syringe, so I guess I didn't keep the syringe in long enough

friole

[FlGuy]

Got the 'L' fixed.  Now about your name....? I've guessed food related?

[johnisme]

South florida, I lived many years in hollywood fl. I sure do miss it.....John

[FlGuy]

Was in Hollywood last night, on way to airport.  Area is reovering from hurricane.  Nice winter weather almost here!

[vegas777]

just thought I would let you know it is snowing as I type this, big fluffy flakes, not sticking to the ground though!

Florida sounds good to me right about now.........

*dipped N snow*

[FlGuy]

I realized a while ago I need to alter my sign-on - make a letter upper case..  It's FLGuy, as in Florida Guy.  I live in South Florida - Ft. Lauderdale area.

[friole]

My name is a case of childhood,  bad spelling and food.  When I registered I wanted to be "bean" which is a knock off of my maiden name and my nick names have always been related to that name thru the years.  It was taken, so I figured since I have lived in Texas for 29 years, I could be a tex-mex bean - so I went with Frijole but I misspelled it.  Sad thing is I didn't even know it until that hot-blooded Latin - Cuteus - told me.  So I am a misspelled tex-mex bean-- You just changed your name, huh?  How did you do it - maybe I should change mine.Na - too much trouble.
frijole - bean - friole

[FlGuy]

So, in a way, you two are related..

[vegas777]

YIKES!!!

[GoofyDad]

So, in a way, you two are related..

As in gasseous commodities?

Sorry gals - lost my head again - but no doubt looking better without......
-------------------------------------------
Friole - I was fine with the Neup for a few weekly injections - then things went south. Maybe it was my low wbc at the bottom of the troughs that was ailing me and not the Neup at all. Doc blamed the Neup - calls it 'nasty stuff'. We're keeping the wbc higher now - so we'll see.