Any suggestions??

Help!!

I am in a bind right now. I am supposed to take my Pegasys  today, but my ABS neutrophils ar very low (about 600 as of Friday) and I was suppposed to get a neupogen re-fill today. But my insurance did not approve and are waiting for my doctor to contact them. Problem is, he's on vacation and so is the nurse coordinator. I found this out today after regular business hours and now I have to wait until tomorrow to contact some one at the university center that can help me.
Question is: Should I wait until tomorrow to see if I can get my Neupogen re-filled and take the interferon tomorrow also? Or should I just decrease the dose from 180 to 135 like it has been done once before?

Thank you all in advance.

[jmjm530]

This is a question for your treating doctor who knows your condition, but it seems you're in a bind because it's after hours. I still wouldn't venture specific advice but I can relate in a general sense what I've read and my own personal experience.

Generally, some doctors prescribe Neupogen when ANC falls below 750. However, the current trend among hepatologists seems to be to let it go lower. 500 is a number many use.

My hepatologist who is very agressive rarely intervenes with Neupogen, and doesn't get concerned till it nears 200. My ANC was between 600 and 1000 for much of treatment and evendropped to 325 and they didn't blink. Told me it probably would go back up and  within two weeks it was over 1000. This happened to me a few times. NP said ANC bounces around a lot and the reason can have to do with infection and how hard your body is fighting it.

So, in my case, I would have continued the Peg with ANC 600 -- even without Neupogen -- but maybe your condition warrants Neupogen intervention earlier. If this really is tearing you up, you can always try and have your doc paged although last time I emergency paged a doc they didn't call back until the next day. Ugh!

Good luck.

-- Jim

-- Jim

[mikesimon]

I'd probably take the Pegasys if I felt that it was important to take it now. But generally it won't interfere with results if you wait a day. I did plenty of times and I know a lot of folks who waited and it didn't seem to matter. Do what you think is right. Good luck. Mike

[Alady1620]

You should ask your doctor this question.

If it were me, I'd go ahead and pay for the nuprogen (sp?) myself.  Then, get your insurance straightened out for next time.

[IwillBeatHCV]

Lady, I like your suggestion, but I would have to come up with $1059.89!! I kind of have the money, but it's still a big chunk of change and I would hate to try to get re-imbursed from the insurance company.

[dyce]

I am thinking of changing my shot day. The sx's from the shot seem to hit the hardest the 2nd and 3rd day after the shot. I take the shot on fri at 5.30 pm and could I do the shot 24 hours earlier on thurs so the sx's arn't as bad mon when I go back to work. It's just a thought , I don't want to jeapordise my chances at clearing at the 12 week mark! The last shot I did on the following day I actually felt very good.

Dyce

[beamishboy]

How's my puppy coming along? my dads big fan of old fishin&huntin guides of the Adirondaks-neighborhood where lot's of them lived called Easy Street-the 'sports' only bothered them for few weeks durin the season,the rest of the year was their's to enjoy..I think i've heard of the lure maker yu mentioned,but i'm no expert onthe history
REGARDING doin shot a day early-i changed my shotday sameway;can't hurt,might even help boost interferon levels for few days and speed your CLEAR......i get delayed response to shot also-go figure? and GOODLUCK

[dyce]

Thanks beam, it's strange how the shot effects us 2 to 3 days later and how I actually felt really good the day after on the last 1. I'll wait and do the shot again this fri and see if the pattern is the same n then I'll make the decision.

The pups are rarin to go, really good stock, gritty, I can't wait to get em started. Right know I'm gettin em used to bein on a leash and riden in the truck. Beam this is some really good exercise. It's really helped me in stayin in shape and probably has helped in the tx too I'm sure.

  E.j dailey was still makin lures back in the 60's when I was trappin and huntin. He ran the wilderness traplines in the adirondacks back in the 20's , thru the depression and went to lure makin and trapline instuctor in the years followin. One of the last few real mnt. men.

Dyce

[Snookmiester]

Personally, I would just take the shot..My ANC dropped just below 600, and I was not rx'd any rescue drugs, or dose reductions. Most Doc's don't interven till 500. And I believe that you are in Florida and we go to the same group..UM right?
Take the shot, and contact Doc and insurance to get your nuepogen first thing tomorrow.
Just my 2 cents..

[lilmoma]

I do my shots on thursday. I was told that it can take up 72 hours for the effects to peak. I dont feel real good on Friday, mind you, but at least I get the real ugly stuff out of the way so I can resume some kind of normalcy on monday.
Come to think of it,....I dont think there is a real good day to put that stuff in me.
Plus, doc always wants me to do my lab on the day of shot (before I do it tho) so going for labs on thursday as opposed to friday is another good thing. Fridays, I really want to come home and just be left alone.Good luck on whatever you decide, I know my nurse told me anytime I wanted to change over to a friday just to let her know so they can set my labs for that day as well, didnt seem to be a big deal to them.
lilmoma

[IwillBeatHCV]

You used to be snook_man right? God to hear from you. How are you doing? I am on week 44/48.

[dyce]

I will beat, your almost done , good luck with your decision there.

Lilmoma, how did your work day go there? I was thinkin of ya at work today and was wonderin how your bloated condition was today. Did ya talk to your doc about it?

Dyce

[Moniker]

My non-professional advice is - if I were in your position- I'd take the Pegasys today, and I'd wait until the Neupogen was available. Until you get your Neupogen, you might try to stay away from children with runny noses, and wash your hands a lot, etc.
Bob

[dyce]

I'm assuming your geno 1, what was your bx report and base viral load? Glad to hear ya didn't have severe sx's, most of us suffer the dreaded hemolytic anemia. My hmg was 12.7 from 15.5 after 5 weeks on the tx. I've kida gotten used to it, although nothing compared to the level it was before starting.

Hope you get things resolved there, Dyce

[IwillBeatHCV]

Mt Bx report was grade 3, stage 2. Baseline RNA was 2,749,241.My hgb has been around 12.

[jmjm530]

Correction on last post in thread :"When to have a post tx PCR/TMA" http://www.medhelp.org/forums/Hepatitis/messages/40539.html

Last sentence should have read:
There's a lot to worry about treating hep c, but relapsing after being non-detectible six months after treatment *fortunately* isn't one of them.


Regarding prev Relapse thread:

http://www.medhelp.org/perl6/hepatitis/messages/40525.html

[Mister beagle bailey]

Tulsa said he was undetectable durning the 6 PCR's durning tx, which is probably  week 2,4, 6, 8, 12 and 24 and then still undetectable after 6 months post tx.

I think we need to ask him what he means.

Beagle

[jmjm530]

This is the only thing I could find by Tulsa:
"... I too have relapsed on my 6mo post... I am going back on treatment eba/peg for 48 weeks... " Didn't see anything about tests during treatment, but it really doesn't matter. Definition of relapse is when the virus returns after you stop taking the treatment drugs.

To me, what Tulsa wrote suggests he found out he relapsed at his six-month PCR. In fact, he could have relapsed two weeks after treatment but only found out about it at the six month test. Most relapses occur -- actually 90% occur -- within the first 30 days of stopping treatment.

I'm not saying people haven't relapsed after a non-detectible six-month PCR, but it's maybe around 1% according to what I've read. All the newer studies suggest that SVR (non-detectible after six months post tx) is durable, again to around 99%. Some even suggest that a per cent of the post six-month relapsers might not be relapsers at all. Some could be re-infections. Others could have to do with using a more sensitive test later on, lab error, or an initial false negative.

I think it important that we differentiate relapse at the six-month point to relapse after that point. We have enough to worry about treating -- we shouldn't have to worry about relapsing after a six-month post treatment non-detectible. The odds are quite slim and haven't seen anything here to show otherwise.

-- Jim

[GoofyDad]

JIm, Do you have a reference on the 90% relapse statistic? I've been shaking the bushes on this subject without a lot of success.
<hr>
As long as we keep flogging this relapse horse, I'll do my little PSA on the importance of TMA in viral load testing.

TMA is a more sensitive test than PCR, meaning it can detect the presence of virus that PCR would miss. One recent study found that 12.5% of patients who showed clear by PCR at end of treatment had detectible virus when measured by TMA. Naturally, nearly every one of those with detectible virus by TMA relapsed when treatment was withdrawn.

IMO, TMA should be used to measure all undetectibles, at least until post-tx.    

The Heptimax test seems to be the most commonly ordered TMA test, though some Docs, including mine, order it without using Heptimax. If your Doc doesn't order TMA, you might want to ask about it.
  

[Mister beagle bailey]

Sorry it was SJL not tulsa,  It's #C1 or 2 on that thread.

Beagle

[jmjm530]

C1 (SLJ) as I read it was undectectable six times on treatment but relapsed twice off treatment. C2's (Imbetternow) post was confusing and I addressed that later in the thread. As I read it, none of those that have posted recently relapsed after testing negative at the six-month test. It's important to keep in mind that SVR is defined as being non-detectible six-months after treatment ends. It is believed to be around 99% durable and some even question whether some of the remaining 1% haven't reinfected themself or had false readings due to the lab process. Anyway, this is good news. Imagine if we had to worry about relapse AFTER SVR. Ugh. At least the way it stands, if we can get to six months post treatment and remain undectible, statistically we're pretty much home free. One less thing to worry about. Hope this finds your hemoglobin rising.

Take care,

Jim

[jmjm530]

Jim/BB on SVR,

What I was saying -- and I think it means the same thing -- is that your chances of SVR are 90% if your non-detectible by sensitive PCR or TMA at 4 weeks post treatment. I believe I saw a study which can't put my finger on. Also read/heard it as quoted by several well-known hepatologists. Only thing I could find quickly is here. See third post down:
http://www.hcvinprison.org/forum_new/topic.asp?TOPIC_ID=191
Beatle, also note above link regarding the 99% durability of SVR, i.e. being non-detect at six months at least in this doctors practice, which is quite large. He finds about 1% relapse between six months and one year and no relapses after 1 year. This appears to be practice data which is similar to study data that suggest that relapses after one year start to approach 0%.

Goofy/Eisbein on PCR/TMA

Goofy, As you know I use Heptimax. Heptimax is different from the TMA you use. Yours is qualitative. Heptimax is quantitative but uses TMA technology. In other words with Heptimax you get an actual number between 5 IU/ml and something in the millions. With your TMA I believe you just get a positive or negative.

Eisbein, according to LabCorp's site, their Quantasure (down to 2 IU/ml) appears to use PCR, not TMA technology.

As far as which is more accurate, I've seen some of these tests reviewed for accuracy and repeatability but not these two. Unfortunately, there's no consumer reports for hep c testing. LOL. Bottom line, I think, is that you should have either a TMA qualitative or sensitive PCR. Sensitive PCR is usually defined as down to 50 IU/ml but in the case of LabCorp it goes down to 2 IU/ml. Heptimax is kind of a hybrid test. If you want real quality control and consitency, I suggest you contract a different disease other than Hep C :)

Goofy, you stated regarding TMA "at least until end of treatment". From what I've read, TMA (or sensitive PCR) is recommended post treatment as well as after non-detectible during treatment. But I think we've gone over this before :)
Regarding the article you mention about EOT non-detectibles, can you please post the link if you have it.

-- Jim

[jmjm530]

Back to beating that post-tx TMA versus PCR horse again :)

while it's true that vast the majority of relapsers can be picked up by even non-sensitive PCR's as the viral load usually rebounds in the millions -- in some cases that I've read about here and elsewhere, folks can sustain a very low viral level after treatment without SVR. Depending on how low the load is, it conceivably could only be picked up by TMA or sensitive PCR.

This link isn't exactly what I was looking for, but see quote on Gish. I've also seen a paper by Gish (Projects In Knowledge I believe) where he states that TMA or sensitive PCR should be used post treatment.   http://tinyurl.com/e7uva

-- Jim

[sunspot]

Jim said: TMA qualitative

What is the full name of TMA?
My 12 week post-tx PCR Super Quant was <10. I feel good about the test but I still would like a 24 week test.

Dana

[NYgirl]

You know at Christmas my doctor was out and my Inf wouldn't go through and they were able to have someone aside from the doctor contact the insurance company - I believe they have people at the doctors office who HANDLE approvals, not the doctor.

So if you can leave a message with them somehow there has to be someone that covers for emergency.

I would have taken the peg no doubt. Disrupting tx is the last thing I want.

Best of luck

[FlGuy]

What's going on with the thyroid these days?  Is this a situation that can return to normal after tx or is the impact long term?  How's the job, they making you feel useful?  Hope all is well.

[GoofyDad]

I stand corrected. I didn't realize PCR went below 50. I based my comments on information I had read that seems to be out of date. Sorry for the confusion.

[GoofyDad]

My experience was that, because of my stage 4 status, my Docs wanted to keep my ANC above 500. They stepped me up to twice weekly neupogen when I failed to stay above 500 2-3 weeks in a row. 500 was my benchmark - I think they would have been fine had I tested at 600.

Good luck.

[MrsOckert]

There's no problem when moving your shot from Friday to Thursday.  I've been thinking about doing it myself.

[jmjm530]

Eisbein and Goof,

Have no definite answers or studies that I can put my finger on. But from memory, I've read that comparing lab test to lab test is like apple's and oranges. Heard that TMA has less cross contamination than PCR but also hears somewhere that has more false positives at least with Heptimax.  So the only way I suppose to tell which test is more sensitive and/or accurate (repeatable) is for someone to do a controlled study of LabCorp's test against Goofy's TMA or Heptimax.

Going back, there's the issue of false positives and false negatives, which some tests appear to have more of than others. All those factors (sensitivity, repeatability, etc) comprise "better".  

But to really confuse the issue, check this out. It's called Whole Blood Testing and supposedly -- at least according to this Austrian study -- it's better than all the above.
http://www.hivandhepatitis.com/hep_c/news/2004/120104_b.html

Still, by week 12, everything appears to even out. In other words, it appears if you're non-detectible at week 12 by your run of the mill sensititive PCR or TMA then you have like a 98-99% of SVR. 90% is the figure most use if you're non-detectible at week 4.

Sun,

TMA stands for Transcription-Mediated Amplification.

[jmjm530]

I thought it was clear from the context of the thread, but I still should have constructed it better. The 90% figure I'm talking about is in reference to the 4-week post-tx viral load test. Not odds for SVR pre-tx or during tx. In other words, if you're non-detectible 4-weeks after stopping the treatment drugs, then you have a 90% chance of SVR. At 3-months post-tx it goes up to around 98%. Maybe 98-99% at week 24. Starts approaching 100% if you're non-detectible one year post tx.

-- Jim

[jmjm530]

I'm going through some brain fog myself right now, and like I said, the sentence wasn't all that well written. Try and get in touch with Goofy regarding that study I mentioned earlier. My understanding is that you have to treat 48 weeks the second time but you'd better check it out.

== Jim

[jerialice]

hey guys about these tests: i do heptamx (TM) HCV RNA down to <5. Geno 1- after 3 months i tested @ 45- yeah, 45. at 6 months it was 0.70
and also at one year same 0.70. what the hell is the .70 ??? i was told that is "clear"
anybody have that? forgive my stygian phrase, but i am still mad.....

i am now back on tx after a 6 month rest. also wonder if anyone is having any kind of panic attacks or wierd heart rates?? i have started prozac- do you guys all take something like that? looks like i either have to keep with it a long time, or wait for the next generation.. 2007? i like that!
thanks,
jerialice

[jmjm530]

.7 is the log number. Just a different way of giving the test results. It's the same as < 5 IU/ml. In other words, it means you're non-detectible.

You say you were .7 at six months and also .7 at one year. Are you talking about during treatment or after treatment.

Maybe you can give us your treatment and test results in chronological order, specifying what results are on treatment and what test results are off treatment.

The way you have it, it doesn't seem to make sense. For example, if you were .7 (non-detectible) one year after you ended treatment, then why are you treating again?

-- Jim

[jerialice]

hey guys i will try again to be more clear! still a bit of shock. i tx for 48 weeks, geno 1. @3 months 45, 6 month.s .7, one year .7. all during tx. then waited 6 months per my doc and went back to see- i have now gone back up to 9600. started new tx that day. i am considering whether i want to keep on it, or wait for new stuff?
i am stage 0, and really quite healthy except for sx!!! i was having some pain in urq
prior to original tx at that time i was 450,00. is it possible i had a false positive?
i also had pain again starting about 3 months post tx. but my sister had stage 4 cancer and i was under BIG stress.....

i am a 53 year old single, lives in the country, self employed, ex-austinite. i write music, have a recording studio and a campground. maybe we could have a get togeher here some time on the river?? wouldn't that be sweet? i don't know when i got the hep as i had many opportunities over time. i have been sober 15 years and loving it! i also have 2 dogs, 4 cats and 20 some odd chickens. we do a kayak race every year here for charity and i am considering starting one for people on tx once this is all cleared up next year.

thanks and drop a note!
ja

[jerialice]

the false positive question is regarding the post 6 month test.
thanks!!!!