Medical Forum / Diseases and Disorders / Hepatitis / June 2007
Week 4: Bad news? Good news?
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Sick Boy - 16 Jun 2007 02:25 GMT Today is Friday, and I'm about to have my shot #5 of Peg-Intron.
I think I might have mentioned it already, but my doc wanted to see me on Week 4. So, I saw him yesterday, and he had me give blood for some standard stuff like complete blood count and lipid panel, plus he also said he wanted to see what my viral load was. I was to call him before taking shot 5 today, just in case there was something terribly wrong, although I'm feeling reasonably well.
So, I call him this morning. The good news is that my ALT/AST, just like during my Week 2 test, is normal (I believe he said they were 20 and 22)...which is a big deal for me, as normally ALT and AST were around 150-200 or more, and 50-100 or more, respectively, before I began Tx.
Now, the bad news: hemoglobin. A month before starting Tx, it was 14.7 (although I believe it was 13.5 on the test taken right before shot #1) Week 2, it was either 13 or 13.2 (it was over the phone, and I haven't had the time to get the last few blood work print-outs, as I usually do). Week 4, as I found by phoning the Dr this morning, it's 11.2
The Dr was concerned about the fact that it was a significant drop between weeks 2 and 4. I told him that I did have some fatigue, but nothing that bothered me or interfered with functioning too much. Still, the doc explained that he couldn't just sit around and hope that it would stop dropping. He said he didn't want to reduce my meds, esp. this early in Tx...he told me to come by his office on Monday and pick up a script for something called Procrit. He asked me what kind of insurance I had--apparently, this Procrit is pretty expensive. So far, I'd been lucky, with Medicaid paying for all meds, HepC-related and otherwise. I understand some people have trouble because of pricks with MBA degrees at their insurance companies making medical decisions. I keep my fingers crossed for having my Medicaid pay for all meds, tests, and doctor visits, with only a few dollars instead of co-pay.
But, that's a different topic. I wanted to ask...do you guys think my Dr made a wise decision, or is it too early for Procrit? Esp. since I'm not feeling too bad? I looked around the archives, as well as elsewhere on the Web, and found out that if your Hg is 12 or above, you should not take Procrit, and mine was 11.2 (blood test taken one day before shot #5).
I hope Medicaid pays for it, although I should have no reason to suspect otherwise. By the sound of it, the doc might reduce my meds unless I start on Procrit, and I REALLY don't want that to happen. f.ck, I've only had HepC since 2001, and I'm turning 30 this July--I'm reasonably healthy, and all of a sudden I have all these meds I must take. And, I'm genotype 3a, which is supposed to be easier...why is my Hg dropping so fast, so early on in Tx?
Well, I guess I should be thankful for not becoming depressed or confused, devoid of all energy, or many other things I could've gotten. I'm actually taking steps to getting my driver's license (if all goes well, I'll have it before I'm 30, hah!)
Sorry for the rant, but this came as a shock to me, esp. since I've been feeling fine. I welcome any comments, especially if you've had to deal with dropping Hg and/or had to take Procrit.
On another note...I've noticed people here have discussed levels of iron and something called "ferretin"...I haven't been tested for any of those (and I didn't have the biopsy). Should I be concerned with that at the moment? Oh well. I have too much stress at the moment, and my family alternates between treating me with pity and blaming me for everything they could figure out that is "wrong" with my life. Somehow, I'm to blame for my low Hg levels, too. And I'm not the sort to complain and nag, either, even though I do vent sometimes...but I just swore to myself that I will never again discuss my treatment in any detail with my family members. They harm me more by wounding me up and causing stress than they help me by helping me eat right.
Sheesh, look with what I started this post, and this self-pitying crap. Sorry, I'm just seething with anger at myself because of a conversation that took place as I was finishing this post...<sigh>
Thanks for any comments on the topic, kids.
 Signature Sick Boy
greyhackles - 16 Jun 2007 03:45 GMT >Today is Friday, and I'm about to have my shot #5 of Peg-Intron. > [quoted text clipped - 75 lines] > >Thanks for any comments on the topic, kids. Sometimes all one really needs is to vent a bit to feel better. That's one beneficial use for this place, so don't ever feel bad about it.
Now...your LFTs indeed continue to look excellent, and could well be an early indicator of a robust EVR. Assuming they drew blood for a VL check, you should know how you're actually doing wrt kicking the virus square in the nuts in a few days.
As for the hemoglobin...it's the luck of the draw who gets hammered by anemia and who scoots by. And welcome to our little club.
Once your hemoglobin drops below 11, the question of when to turn on the Procrit (aka Epogen aka a couple of other brand names) is really pretty much up to you. Lots of folks feel pretty decent at 11 g/dl, others turn into couch potatoes. If you start dragging your anchor, tell the doc you want to turn on the juice.
Then again, some docs are total nitwits when it comes to handling even the simplest of cases - like one where the patient's insurance will fully pay for Procrit once HGB goes below 11, and the patient's actual HGB is just above 8. No brainer, eh? Check this plot out:
http://home.comcast.net/~greyhackle/therapy_files\hgb_plot.jpg
Yeah, my bcld was a total nitwit - and somehow I "apparently misled him into thinking I was in better shape" than I had any right to be feeling (total BS - the f.cker simply blew the call).
If you're feeling totally gassed and barely able to function - you probably should have been on the Procrit already. Don't wait until you hit 8 - it *really* sucks down there ;-)
Will your insurance cover Procrit? That's the $850 question (that was the listed cost for each of the weekly 60K IU shots). No way to know other than to ask. It should not be a question of whether they'll pay for the Procrit if you're on therapy - don't let anyone bullshit you. If you're anemic, you should be covered - if they cover Procrit at all - whether you're on therapy or not.
On any up-side: as the chart shows, for the entire 35 weeks I was on Epogen I still couldn't get my HGB above 11. But I *was* able to remain on the full doses of Peg and Riba throughout - which (as a g1b) was *really* important to me. And I was able to mobilize pretty well - as long as I didn't overreach. So even while I couldn't do cartwheels, I was in good enough shape to wrassle dragons.
Bottom line: if your insurance will cover the Procrit, take the Procrit once you start feeling like you need it, and avoid cutting back on your treatment meds except as a last resort. If you get a really good EVR, you'll only be on tx for 24 weeks, so go for the gusto and stay on full meds!
As for the serum ferritin: we often get caught up in interesting factoids here, and one of those is that an iron overload condition is detrimental to both therapy and liver health for heppers. Serum ferritin can be an indicator that iron load testing should be performed, but one can have a sky-high serum ferritin score yet have a very low iron load - like well below 50% of saturation - and that's *before* starting treatment.
During treatment, folks that experience significant anemia caused by the Ribavirin can expect to see their serum ferritin spike. But this is a side-effect of treatment, and if total body iron stores are well below capacity, is unlikely to be associated with treatment failure. I'm an example of that, and there are others here that experienced the same spiking ferritin during tx and obtained SVR...
Cheers
/greyhackles
amzolt - 16 Jun 2007 18:47 GMT > If you get a really good EVR, you'll only be on > tx for 24 weeks, so go for the gusto and stay on full meds!
> /greyhackles I'm in my third week of TX and just saw my PA-C on Wed. I'll be back on week four and they will do a viral load test then. She, however, said that even if I showed no virus (and, she added that all her patients who show no virus at 4 weeks stayed clear...) I would still have to do 48 weeks. She mentioned something about maybe in the future being able to shorten Tx but I'm already too brain fogged to remember exactly...
~ Alex
P.S. What's "EVR"?
Waterspider - 16 Jun 2007 19:47 GMT (and, she added that all her
> patients who show no virus at 4 weeks stayed clear...) Odd thing to say.
> P.S. What's "EVR"? Early viral response, measured at 12 weeks into tx. EVR doesn't guarantee SVR but can be a darn good indication.
greyhackles - 16 Jun 2007 20:29 GMT >>(and, she added that all her >> patients who show no virus at 4 weeks stayed clear...) > >Odd thing to say. Why? A complete EVR at week 4 is powerful juju indeed, with very high odds of SVR assuming the patient remains fully compliant with the treatment regimen...
Cheers
/greyhackles
Waterspider - 17 Jun 2007 02:28 GMT >>>(and, she added that all her >>> patients who show no virus at 4 weeks stayed clear...) [quoted text clipped - 5 lines] > SVR assuming the patient remains fully compliant with the treatment > regimen... We know that the coveted SVR remains unknown until the post-tx test, and that not everyone who has an EVR attains SVR. It seems odd (to me) that *all* of her EVR patients made it through SVR. Would be interesting to know how many she's treated.
WS
amzolt - 17 Jun 2007 21:23 GMT Would be interesting to know
> how many she's treated. > > WS I try to fight the brain fog and ask her (even writing things down to remember them is not a sure thing...)
Paul - 18 Jun 2007 05:37 GMT On Sat, 16 Jun 2007 18:28:48 -0700, "Waterspider" <nospam@all.com>, in message ID <13793j0h1befe53@corp.supernews.com>, in the newsgroup alt.support.hepatitis-c wrote:
>We know that the coveted SVR remains unknown until the post-tx test, and >that not everyone who has an EVR attains SVR. It seems odd (to me) that >*all* of her EVR patients made it through SVR. Would be interesting to know >how many she's treated. But in your previous post you are referring to EVR at 12 weeks. Surely EVR is determined at 4 weeks?
greyhackles - 16 Jun 2007 20:26 GMT >> If you get a really good EVR, you'll only be on >> tx for 24 weeks, so go for the gusto and stay on full meds! [quoted text clipped - 12 lines] > >P.S. What's "EVR"? EVR: Early Viral Response - usually as measured somewhere between week 4 and week 12.
SVR: Sustained Viral Response - as measured at least 6 months *after the end* of treatment.
Tx-naive folks that clear by week 4 and stay on their meds for their respective full treatment periods have a fabulous shot at SVR - for g2s it's like 95%, a bit lower for g3, and around 80-something % for g1.
To understand my statement to our friend SickBoy, one must know what his genotype is. He's a g3. I'm guessing you are g1. A tx-naive g3 clear by the week 4 VL check is almost certainly only going to do 24 weeks. Otoh, as a g1, even if you're clear at week 4 you'll be on the 48 week plan (as I was) as we've got the tougher buggies to get rid of.
Of course, for tx-experienced folks doing another round of treatment, you can pretty much throw all the above out the window...
Cheers
/greyhackles
amzolt - 17 Jun 2007 21:21 GMT Thanks, greyhackles. My drugs come from Schering-Plough and they have a 24/7 service with nurses answering questions. What you said is what the nurse said and makes supreme sense...
Sick Boy - 18 Jun 2007 14:49 GMT >>hemoglobin. >>A month before starting Tx, it was 14.7 (although I believe it was [quoted text clipped - 18 lines] >>all meds, tests, and doctor visits, with only a few dollars instead of >>co-pay.
>As for the hemoglobin...it's the luck of the draw who gets hammered by anemia >and who scoots by. And welcome to our little club. Heh...well, I've started feeling like I belong here, being involved in all that stuff that seemed like a non-possibility just a few months ago.
>Once your hemoglobin drops below 11, the question of when to turn on the >Procrit (aka Epogen aka a couple of other brand names) is really pretty much [quoted text clipped - 5 lines] >should have been on the Procrit already. >Don't wait until you hit 8 - it *really* sucks down there ;-) See, that's what puzzles me. From my phone conversation with the Dr last week after Week 4 test results, it sounds like he wants me to start on Procrit now--he told me to come by his office today and pick up the script. With Hg 11.2 and me feeling not too bad (can't run or walk fast, etc., but otherwise okay), I didn't expect he'd want me to start Procrit NOW. As I've mentioned, maybe because Hg had dropped about 2 between Week 2 and 4, and he's concerned with it lowering even more.
>Will your insurance cover Procrit? That's the $850 question (that was the >listed cost for each of the weekly 60K IU shots). No way to know other than to >ask. It should not be a question of whether they'll pay for the Procrit if >you're on therapy - don't let anyone bullshit you. If you're anemic, you >should be covered - if they cover Procrit at all - whether you're on therapy >or not. I believe/hope it will cover. I have state Medicaid that pays for all my drugs, and I've yet to have a problem with them (fingers crossed). Too bad it looks like I'll lose it at the end of the year, because--watch out--I'm making more than $5,000 this year! (and it's part time, so no insurance at work, either) Really able to pay for my own medical care now, aren't I? I almost laugh at it.
I guess I'll ask the Dr (if I see him today) why write for Procrit when things aren't too bad. I guess it's better than the opposite scenario, though, right?
Thank you guys for responding to my rant, I really appreciate everyone's replies. Hope everyone is doing relatively well.... Cheers,
 Signature Sick Boy
greyhackles - 18 Jun 2007 14:57 GMT >>>hemoglobin. >>>A month before starting Tx, it was 14.7 (although I believe it was [quoted text clipped - 66 lines] >everyone's replies. Hope everyone is doing relatively well.... >Cheers, I suspect your doctor is more on-the-ball than most, so this is most likely a good thing. If you have any concerns, try to get a question into your doc while you're picking up your Procrit 'script. If nothing else, it allows you to find out for sure whether your insurance will cover the Procrit *before* you really feel you need to take it.
And I'd do exactly that: pick up the script and get on the phone to your provider and find out what the bottom line is today.
Cheers
/greyhackles
Waterspider - 20 Jun 2007 21:36 GMT Hey Doc, congrats on the new toy-- I can't wait to see your photos.
To any other pixel people in the group, I'd like to invite you to join a rather elite Flickr group called Dance With The Dragon: http://www.flickr.com/groups/hepdance/
Waterspider
p.s. For those of you who don't remember, photography saved my sanity while I was doing tx. I spent hours sitting in my garden taking macros of bugs, flowers and Fraser, then indoors experimenting with Photoshop. It was the only thing that got my mind off of how miserable and discouraged I felt, and how scared I was that the treatment wouldn't work and that I would never recover from (a) hep C and/or (b) treatment enough to live a normal life again. It all worked out fine, and after I did get back to "normal" I discovered that my passion for photography remained. Another bonus: now I'm decently proficient with Photoshop!
Cactus Jammies - 21 Jun 2007 12:58 GMT Hey WS, I have been forwarding the occasional group message to elmo at his work address. He does not yet have his internet up.
cactus jammies
> Hey Doc, congrats on the new toy-- I can't wait to see your photos. > [quoted text clipped - 13 lines] > "normal" I discovered that my passion for photography remained. Another > bonus: now I'm decently proficient with Photoshop! Waterspider - 21 Jun 2007 22:31 GMT > Hey WS, > I have been forwarding the occasional group message to elmo at his work > address. He does not yet have his internet up. Well, tell him that if it's only his internet that he can't get up... we won't worry about him. <g>
Paul - 16 Jun 2007 06:07 GMT On Sat, 16 Jun 2007 01:25:56 GMT, Sick Boy <sick-boy@norco.net.nz>, in message ID <cha673tj27urb1712vlvv8ljlvttvqfrq7@4ax.com>, in the newsgroup alt.support.hepatitis-c wrote:
>Today is Friday, and I'm about to have my shot #5 of Peg-Intron. > [quoted text clipped - 75 lines] > >Thanks for any comments on the topic, kids. It sounds to me like he's clued up and wants to have everything in place in case you need to start on the procrit - something that looks possible if your hg continues to drop. Something that hasn't been mentioned is more frequent monitoring. It's often better to check things weekly or two weekly if there are blood count problems. I say that he looks to be doing his best to avoid a dose reduction. I wish they did that more here in the UK. Any doctor who gives procrit, neupogen, or the equivalent over here is going out on a limb. A few do it I've heard but it's still pretty rare.
Kozure Ookami - 17 Jun 2007 04:22 GMT Drugs effect everyone a little differently. My hemoglobin fell a little every month. It took longer for me to get where you are with your levels. Don't panic. You have some options. Since you're taking a 1000mg dose of riba and 800mg is more commonly prescribed for your genotype dropping 200mg wouldn't be the end of the world and might help out. It's nice to have procrit as an option as well. I think when my hemoglobin levels went borderline they had me come in sooner than monthly on my next blood draw. It's a good sign that you still feel well. Sounds like your doctor is on top of things. Good luck with that 4 week PCR!
Don
anonymousone - 17 Jun 2007 23:47 GMT > Today is Friday, and I'm about to have my shot #5 of Peg-Intron. > [quoted text clipped - 77 lines] > -- > Sick Boy My hemoglobin dropped to where your is during treatment but it took longer to get there. Once it dropped to that level it never got work, I think it was in the high 10's on one test.
They told me if it dropped below 10 they would prescribe procrit (that was kaiser and they are kind of cheap that way). They also recommended anti-depressants. I never took the anti-depressants or procrit and got along just fine for over 6 months.
ghibelno - 18 Jun 2007 09:39 GMT > Today is Friday, and I'm about to have my shot #5 of Peg-Intron. > [quoted text clipped - 11 lines] > > The Dr was concerned [...] Hi Sick Boy, I've been following the same pattern. Started treatment in October 2004 with a low Hemoglobin value (13.8) that became 11.8 in two weeks. I had the same concern expressed by my doctor. She waited for the following lab test (week 4). HGB was still, but much slower, going down (around 11). I kept going on with full dosages until I was around week twelve then another lab test showed Hemoglobin still going a little bit down (10.6 or something) and WBC dropping suddenly to a value of about 4 and the doctor decided to cut Ribavirin from 1000 to 800 ug/day, in order to obtain an improvement and restart with full dosage. Here in Italy they're not allowed to give meds like Procrit or Neupogen to limit anemia as a side effect of Hepatitis C treatment. She also prescribed a vitamin complex. About ten days were enough, I was back to full dosage and so I was satisfied as I took full dosage for 80% of the period before the 12th week checkpoint. I was able to do the full 48 weeks of treatment at full dosage, anemia still being a problem but stabilized after week 12. I was given Lederfolin (7.5 mg) a couple of times again later in treatment to take care of it. Virus load was undetectable at week 4 and 12, I had SVR and was still clear in March 2007, that is one year and a half after end of treatment.
I wanted to say this to you to try and help (I know it's easier said than done) to don't emphasize this. You've a great result: your LFTs being in the range so early. Another good thing is your doctor following you so well and talking with you so much and clearly about treatment. In your case the drop could stabilize as it was for me in few weeks, and if you wish to try another way before procrit, then ask your doctor's advice about multivitamin complexes. Keep a good attitude, don't focus all your attention on treatment, help your body by resting, eating well, drinking a lot and don't give a damn of anything else but you (as much as you can get on this one); and kep doing lab tests. In my case ferritin has been checked every 12 weeks, was out of the range at the end of treatment but returned good after the end of it.
Cheers, jeeb.
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