told to stop interferon

[jt57]

Had cbc today.  wbc 1.8
                        anc  .8
                        hgb  9.2
                        plt    40

My GP called my hep dr. and he said to stop the interferon and have cbc next week.  In my opinion, I think we should be discussing reduction in dosage, not stopping.  But I have had this sort of issue with my dr. in the past....

What do you guys think?

Jean

[geterdone]

Without having the full report in front of you, stop. Did he say just stop the interferon only or both?

jasper

[epiphiny]

I agree, better a reduction than none at all.  Are you on a trial?  If not, you could just take matters in to your own hands and do a reduction or continue at full dose.

Is it because of your anc count?  Because that is not so low as warrants a reduction in my opinion.  Mine went down to .56 before they ordered me to reduce, which I didn't do, and my neuts came back by themselves by the next week's test.  Neuts are pretty dynamic and jump around a lot.  Btw, I did eat a heck of a lot of shitaake mushrooms for the week before the test.  I have no idea if it helped but I just though I would mention it..

Also, shouldn't the Hep Doc be the one making these calls, not your GP?

[jmjm530]

Based on your WBC and and ANC alone, there is no reason to either stop the interferon or reduce it. In fact, my Dr. wouldn't even put you on a helper drug like Neupogen. Or perhaps it's your low platelet count which is the concern? Still, not low enough to stop treatment.

Has your GP given you a reason? Have you contacted your Hep Dr. yet?

Here's the thing. Most GPs know next to nothing about hep C. its treatment, or what the blood values on treatment really mean. Gastroenterologists know more, but many of them also behind the curve of them in terms of how to treat hepatitis C.

For this reason, the person who should be making call is not your GP, but your treatment doctor. And hopefully, your treatment Dr. is a hepatologist and not a gastroenterologist.

you should also know that stopping interferon, even temporarily, can have a negative effect on your treatment outcome. For this reason, it's very important that you try to straighten this out with your treatment Dr. right away.

As someone new here, you should understand that none of us here at doctors and that the following are very general statements based on the little information you've posted.

All the best,

Jim

[jt57]

My hep dr. does make the calls.  My GP draws my blood once a week, because she is located very close to my home.  

He said to stop because of my platelets.  My WBC has been this low the whole time.  My HGB has been lower, but I am on procrit now.

He just said to stop interferon.  Did not mention the ribavirin.  I could afford to reduce the riba.  Am on 1000 daily.  But at 110 lbs, I could get away easily on 800.  I am not in a trial.  I am under the opinion that until my platelets hit 30, I can still treat, but I may need to reduce.  I don't take my next shot until Monday, so maybe I will get the cbc redone Mon. a.m., and go from there.

Jean

[sunshine585]

I can only speak for my own situation. I wasn't stopped until I was far lower than that. My wbc was always < 2.0 I think your doc might be more cautious than he might need to be. Are you on a study? Studies tend to be more restrictive. I would try to push for a dose reduction. In the initial stages of tx, it's crucial to have your maximum dosage, better chances of svr. I was on a study, and in the initial weeks my dosage was stopped restarted, cut numerous times. I'm told my chances of svr are between 20-30%.
So you need to advocate for yourself. Good luck

[Trinity4]

Your numbers are better than mine were and I was advised to dose reduce to 135 mcg.  I did not reduce and as far as my doc goes he'll never know the difference. I was given Neupogen last week.  Whites came back up lickity split.  Have never had a problem with hgb but that would be riba reduction not peg.  This was my local hep doc advising the reduction.  My hep doc in Atlanta would not have blinked at my low ANC.  That's the difference between a doctor who treats many with hepc and one that does not.  
Bottom line, do what you think you can live with.  

[jt57]

Again, as I said, my GP called my hep dr., and my hep Dr. said to stop the interferon.

My GP isn't making ANY calls on my treatment.  Just monitoring my blood draws...

Jean

[jmjm530]

You really need to find out from your hepatitis Dr. the reason he wants you to stop the interferon. Is it your WBC? Is it the ANC? Is it the platelet count? Is it something else?
Because if your help Dr. for stopping treatment based on the blood values alone, he may be doing it unnecessarily.

In this case, you should try for a second consultation with a liver specialist (hepatologist) ASAP.

Do you knowif your current Dr. is a hepatologist or is a gastroenterologist? As stated many gastroenterologist simply do not know enough about treating hepatitis C.

[epiphiny]

Getting another blood test on the day of your shot is a great idea, as numbers are at their highest on that day.  That is what I do as well.  And the one day the counts were low is the day I did it 20 hours earlier.

[jmjm530]

sorry, missed your last post, and I now see that the issue is the platelets. Again, if it were me treating, I'd speak to another liver specialist to confirm that I needed to stop treatment.

[jt57]

yes.  he wants to stop because of my platelets.  and he is a hepatologist.  But he is very quick to say, "stop treatment".  I've been down this road with him before.  at 11 wks.  I am now at 20 wks.  My platelets are the lowest they have been.  I say reduce.  Not stop.  But I'll see what the cbc says on Monday, and then make my decision.  How much of a reduction do you usually make?

Jean

[jmjm530]

Here is what Dr. Dietrich in our expert forum says on the subject
http://www.medhelp.org/posts/show/586333

Can't speak for him, but based on what he said in the link I just gave you, my guess is he would say continue on full dose. By the way, are you undetectable and if so at what week? Also, what's your genotype?

It's good that you're seeing a hepatologist, book from someone with experience there -- I've seen at least a half dozen over the years -- they are certainly not all created equal. Could be wrong, but it sounds like this fellow is a little too quick to pull the trigger. Perhaps, you want to find a more aggressive hepatologist. On the other hand, there may be other factors involved, so again this is just a general statement.

Good luck!

Jim

[comeagain]

Are you UND? if so which week did that happen?
Its always worse to dose reduse in the beginning I´ll take it your a geno 1.

Its very good if you state those basic info on your profil, save us all a lot of time and its easier to help the more we know of your situation.

ca

[jmjm530]

Comeagain makes a good point. if I were treating now, and had questions to ask, my profile would be as complete as possible.

[jt57]

yes.  I am und.  Between wk 8 and 11.  Gen 1b.

Thanks for the link.  

My problem is that the NP handles everything and goes by "guidelines".  that is why I seem to always be second guessing my hep. dr.   and rightfully so..

If you were to miss the interferon for a dose or two.  Does this impact svr?

Jean

[Deb_c430]

You can cope with low ABN's,  mine are 1.2 now,

Hgb just dropped to the 8's again.  

Riba is more responsible for  low HGBs, I reduced recently  from 1000 riba to 800.

Best of luck  

[jt57]

ok, ok guys.  I updated profile with a couple of basics.  will do more later...

[jmjm530]

Missing two weeks of interferon in a row has a decent chance of completely ruining your chance of SVR. And don't think just because you're staying on the ribavirin that it will help much without the interferon.

Even a dose reduction in interferon is not recommended unless absolutely necessary.  Again, see Dr. Dietrich's answer in the previous post.

If you can't get to your doctor directly, and get satisfactory answers, then get to another doctor.

The name of the game here is being proactive. There are probably as many as SVRs lost by bad doctoring as by the virus itself.

I realize the last thing you probably feel like doing now is making waves at your doctor's office, or trying to get an appointment with another liver specialist on very short notice. But frankly, at this point don't see what else you can do.

Good luck!

Jim

[geterdone]

Do you have any other medical issues besides treatment? The reason I ask is that you are at a higher risk of bleeding and this may be the doctors reasoning. You did say the NP told your hepc doc to tell you to stop the interferon so there must be a valid reason for two doctors to tell you to stop. It takes the interferon a week or better to bleed out of your system (no pun intended) so I would not think that it would have a great impact on your UND status and the riba will keep on working in a mini clean up mode until the platelets are rechecked. I would advise to not shave you legs or pits and stay away from any sharp objects. Hope your dilemma is corrected in the coming week.

jasper

[epiphiny]

I agree with Jim.  This your health and your future, you don't want to be doing this again if you can help it.  I was under treated first time round cos the Doc's used standard protocols and here I am doing it again, but this time in a much more proactive way, and it's working.

Go for it girl, you'll feel so much better.  Otherwise you'll may always wonder whether you should have fought harder...

[jt57]

I know.  I don't intend to stop, unless my platelets drop below 30.  I do have a hematologist as well, and I am going to speak with him on Monday. Hopefully my platelets will be higher and there will be no reason for this discussion.

I have plenty of meds, and 3 docs monitoring me.  GP, hep dr. (NP) and hematologist. I won't stop treating unless I have to.

The only issue here is the platelet count.

Thanks for your help.

Jean

[geterdone]

I don't agree with jim at all on this one. I read Dr. D’s reply but it is not this person.

jasper

[jt57]

two drs. did not tell me to stop.  

My GP drew my blood and ran the results...saw how low my platelets were.  called my hep dr.  my hep dr's NP called back and told my GP to tell my to stop.

I have no other medical issues.

i just think my hep dr's NP operates by guidelines and did not even talk to the dr.   Have had this happen with that office before.  My hep dr. does not always get the info.  Seems the NP is running the show.....that is why I have a GP and Hematologists monitoring me as well.

Jean

[geterdone]

Good Luck to you.

jasper