Accurace of Blood Work and Neumega

[MissMiss]

Good morning!  I am sharing my experience with Neumega and a concern about the accuracy of blood work.  1B, 44/48.

I arrive an hour early last Tuesday do have blood drawn and then see the Hematologist.  He has the blood work done STAT so he has a preliminary during our visit.  I would never have guessed that the preliminary wasn't really very accurate until now.  

My platelets were at 41 so I was put on Neumega.  This is Tuesday.  I finally get the script approved and must now wait until Sat, day after Peg day.  (I also skipped Neupogen on Sat and did 80 Procrit on Sunday, the bone pain was much better.)  It was an awful shot to begin with, stung like the dickens and for a couple hours afterwards.  Then, with a 102 fever until Monday morning I was pretty miserable.  Called doc Monday am.  Nurse said he would likely have me continue the Neumega, fever was normal sx.  So, I waited until about 4:00 to do the second one, trying to keep the timing the same.  Just as I am finished, she calls and says to stop the Neumega.

They redid my blood under microscope and it was up to 84!  That's a pretty big swing!  And to base an rx on something that wasn't accurate is just too, oh I just can't say.  Remember blood drawn on Tuesday and it is now Monday and they just redo it?  I am livid!  

Still have the fever, half passing out, in bed most of the time.  It's 85 degrees here and I'm bundled up in my comforter.  Every muscle in my body is cramping from laying in bed.

Honestly, if I had felt like this at week 20 or so I would have quit.  

miss

[Southernboy]

Hi miss,

I don't visit often anymore but stopped by and read your thread.  Wanted to let you know that I was on Neumega for low platelets while on daily infergen tx.  There seem to be some possible problems associated with it.  If you would like to hear about them let me know.  I will check back here later or you can email me at ***@****.

Best,
Steve

[FlGuy]

You probably have something there. The hemo I went to was an oncologist/hemo and the majority of the cases were probably cancer and not hcv and therefore dealt with the blood numbers and not the underlying intracacies with the dx of hcv.  The good thing was that each cbc, and any rescue drug administering, was sent to the tx doc (GI) same day so at least they each knew what the other was doing.  It worked for me, but all the bad, bad riba-induced stuff passed me by - which is a whole other kettle of fish.
BTW, in another thread there was discussion about the dermo impacts and I think you felt there was an IFN linkage to the outbreaks during tx.  Just wondering, in your early days of tx did your docs tinker with IFN frequency or dosage?

[FlGuy]

It's interesting that the hemo would rx neumega. Sounds like an aggressive doc and I liked the combination of a tx doc and a separate hemo doc when I was on tx.  I liked the fact that I'd get an instant CBC result just a minute after blood was drawn and never suspected results were not accurate.  I think there's something to appreciate when the goal is to get to tx end without risk of dose reduction.  But, neumega has a lot of prescribing warnings/cautions, like a vacationer to Beruit. I hope you feel better and get balanced with all your rescue drugs.  I read that neumega causes anemia, so it sounds like you're (or were) fighting hgb on two fronts.
On the brighter side :(http://www.hivandhepatitis.com/2006icr/ddw/docs/060906_c.html) it looks like there may be platelet relief out there someday - perhaps for others after you put hcv and all the blood-openia stuff behind you.
Again, hope you feel better.

[MissMiss]

Thank you for your kindness.

If my GI would have let me continue with platelets lower than 50, I wouldn't have thought twice about saying NO to neumega after reading about it.  It was a choice of continuing or stopping at that point.  My hemo and I would have been okay down to even 20-30 but not the GI.

Ahh, what we do to get to SVR!

miss

[FlGuy]

Although having 2 docs, I think, reponsible for 'their' specialties I'm sure there's room for disagreement between them. People have navigated tx successfully with plates in the 40's (Goof is one). If I were the arbiter between the two and I had confidence in both I'd prefer to have each call his own shots.  But, there's always the concern of a doc's responsibility (read: malpractice).  A doc would likely bear no resposnibility for unsuccessful tx if doses were reduced but may be on the hook if he allowed blood levels to go to such levels that an 'episode' of some sort might occur.   All a balancing act.

[jmjm530]

Not sure if I'm agreeing or disagreeing with your previous statement but hey, doesn't matter :)

My take from reading numerous posts here is that the most agressive treaters tend to make their own hemo decisions and are more likely to precribe Procrit early, Neupogen late, and overall less likely to reduce meds because of lowered blood values including platelets. To me, this suggests that malpractice suits are not their foremost concern. My opinion is that in many cases their (the hepatologists)  vast treatment base has taught them that Interferon/Ribavirin blood abnormalities have to be treated differently from those not treating. Unless a hemo has extensive treatment with Hep C patients under treatment, they may be using slightly different guideline.

== Jim

[GrandOak]

Thanks for the heads up.  So far my labs show me hovering near the threshold for yet another tx regiment with neupogen, as if the peg-riba and Procrit were not enough.  It's good to know what to be watchful of if I should enter this area of the battlezone as well.

[MissMiss]

Between the fever and Brian Fog, I want to be sure I understand.

Do you think it more risky for someone tx HCV to have the lower blood values than a cancer tx?  

I sure wish I had thought to research my GI more before starting tx.  I still worry about his dose reduction in the first 12 weeks and taking so long for rescue drugs.  Plus he knows very little about Cryo.  I have appt with another next week for a second opinion about extending but am very limited in doc choices here.  But, if I don't pull out of this, I don't know if I can handle extending.  

miss

[FlGuy]

I certainly don't have the knowledge of either to make any correlation. But, (and this is my opinion of my situation only) I believe that there were two and a half reasons why I did not successfully clear in the first go-round. First, fixed dose riba vs. weight based.  I now subscribe to the theory that the levels of riba did not hurt me enough and levels may not have been high enough.  Second, is length of tx - in retrospect should have been longer than 24 (geno 3) with cirrhosis.  Or at least a pcr sooner than 12 weeks to drive duration decisions.  New plan right now, and subject to a new opinion in a few weeks, is clear plus 36.  The half one is smoking and probably has more bearing on lack of success than I'm willing to admit to myself.  Dealing with that will be harder for me than the longer and stronger tx. A vexing disease.

[jaroman]

Platelet numbers can move quite a bit.
Seems like alot of the docs let our platelets go to 30 before doing anything. I was around 35 for a while and this doc was starting to get uncomfortable.
Seems to me, we should avoid as many extra drugs as possible, if we can tolerate the sides. Sheesh, we do enough already!

[jmjm530]

I guess I'm a one-stop shoppin' kind of guy when it comes to tx cause that way Brian Fog can remember which way to point the finger when sh*t hits fan :) I double-dosed Pegasys 2 or 3 weeks in the beginning but interferon-induced/flared skin issues are very common, especially with psoriasis.

[couldn't think of a nickname]

I just got my blood results back, my platelets were excellent a year ago, and a little low this time. During disease progression, I am told they SLOWLY decline. In the past 3 years, there were 2 other times they dropped, once almost out of normal range, only to get back over 200k.

Here are some reasons my doc speculated they (mine) can change so much.

First, I have thalassemia minor. On the lab report, it states that those with TM might have an error on the platelet count due to platelet aggregation.
Or, you could be fighting a bug or infection. One other time mine were lower, I had a sinus infection. Actually, I had a fever the day of this test, and have been having sinus infection symptoms stronger since that day.

Mine dropped from about 225k to 130k.

Here are 2 other examples of when mine had sharp fluctuations:
1.6-19-03......223k
..8-27-03......172k
..10-3-03......240k

Here is the next time:

1.11-3-03......213k
..12-1-03......140k (pretty bad sinus infection I think)
..2-1-04.......169k
5/2004(?)......224k

I think I have read that the blood samples should be well-mixed when tested. Maybe due to aggregation.
Also, I remember reading high amounts of ginseng can cause thrombocytopenia.

I am hoping to shake this sinus infection, and that my numbers improve next month.

Even though enzymes are elevated, still a 2:1 ratio, urinalysis was fine, and my albumin was quite good at 4.6.

Albumin doesn't get mentioned much in here (I don't think, I only browse once in a while), but it is a marker of liver function, and usually those with advanced disease will see it under 4 from what I have read.

[MissMiss]

Ran out of room on that post, sorry I can be mouthy.

My point is, please make sure of the accuracy of blood work BEFORE you let your doc give you a new rx, especially Neumega or platelets or transfusion.  Insist that they do it by microscope before you start.  I had no idea how off the preliminary could be.  My platelets haven't been over 75 in months and now they are 84?  Makes me wonder what they have really been.

Thanks for listening.  Gonna go wrap up in my comforter now.

miss