Temporarily stopping Riba

[Maui lover]

My husband's labs as of 09/15 show his HGB at 7.0, down from 9.7 on 09/01.  He started on 40,000 Procrit on 09/12 and just did his second shot today.  He's Geno 3, VL 4,600,000 and just finished his first month of Tx yesterday.  He had his PCR done on 09/15, but I don't know what that result is yet.  The doctor just called me and said they want to temporarily stop the Riba until his blood counts start going up.  He's currently on 1,000mg per day.  I asked about reducing it to 800mg and they don't want to do that, they said they feel that because his HGB is so low it should be stopped for right now.  I'm really upset about this because I don't want him to have to stop treatment, but we definitely want him to start feeling better.  They are keeping him on the IFN.  Has anyone heard of this or done this?  They feel like the Riba would only need to be stopped for a week or two.  I didn't even ask about a transfusion, I was so flustered when they called.  All I heard was "we want to stop the Ribavirin" and my mind went blank!  We're both so bummed.  We just never saw this coming.

[cuteus]

that is a very low hgb and could be dangerous to individuals with cardiac conditions or the propensity to them.  They could get it to increase by transfusion also.  How often were they doing the cbc? they should have noticed early on the speed by which his counts were dropping and started the Procrit then! It seems that they waited a bit too long and now his only chance is to stop the riba or lower it too much to be of any benefit.  it is not a good thing to happen so early on tx. there have been a few members here with a hgb of 4-6 and they were transfused.  One such person, with very low hgb while on tx, wasabi pea, is now svr, but I don't remember if her riba was lowered while on tx.  I don't think the Procrit will work fast enough with a riba dose of 1000.  800 has worked for some people here while the procrit kicked in, it might work for him

[GrandmaA]

Listen to the doctor, a friend of mine almost died that way.

[Maui lover]

That's the thing, he started Tx on 08/18 and didn't have his first labs done until 09/01.  That's when the 9.7 HGB was discovered.  The doctor didn't inform us of that count until 09/06 and then by the time the Procrit was prescribed it was already 09/12.  I really feel that they dropped the ball.  I'm not looking to lay blame, but I am extremely frustrated.

[cuteus]

you are only frustrated?? I would be LIVID!!  his tx was mismanaged for sure, and so early!how long will they stop the riba?

[Maui lover]

They said they'd stop the Riba for a week or two, depending on how fast his counts go back up.  I can't even believe this has happened.  It's hard enough to go through all of this (and I'm not even the one treating) and then to have it screwed up like this just completely sucks on all levels.  I am pretty livid, now that you mention it!

[mycoldfeet]

It takes a while for procrit to kick in, and yeah your Doc should have been in front of the ball, but at least you're only on shot 2, not later in tx, get the labs right, and start like day one. I had 48 wks of tx and had tx stopped in the middle for 3 wks and relapsed, back then they didn't know the importance of keeping riba levals up, now I'm doing 72 wks on shot 6 so I know where your coming from.

[sfbaygirl]

Ugggghhhh! It makes me mad that dr's don't check labs at least once a week and get back that day if something is wrong. This is the main reason I get my labs before the dr's do and call them if my counts are low.

It would be a shame to start over after a month. Perhaps a blood transfusion would tide him over until the procrit starts to work. Then perhaps he wouldn't have to reduce meds. I would try and get the dr. to do this before giving up the Riba. Perhaps he needs more procrit. Does he go to a Hemotologist or a Hep Dr.?

[Maui lover]

He goes to a Gastro and no, they do not want to do a transfusion.  I called the on-call doctor tonight and discussed it with him.  <I actually liked him better than his regular doctor.>  He said he's treated hundreds of HepC patients and he's never had to transfuse any of them.  He said if there were any heart or lung problems they would definitely do it, but he feels that he's young enough (43) and strong enough to handle it.  That's easy for him to say, right? The hope is that by stopping the Riba for a week and staying on the Procrit his HGB will go back up to 10.  He also said stopping for 1-4 weeks isn't really a problem and it most likely won't extend his treatment out any further.  

I wish I had the 4 week PCR results.  We will definitely have those tomorrow.  I tell ya, Six Flags has NOTHING on the roller coaster ride that is HepC.

[sfbaygirl]

I have a GI too and he wanted to lower my dose when blood counts went down. I refused and went to the hemo. My Primary care dr. sent me to a hemotologist who now monitors all my blood. I have had low Hgb and WBC, so have used Procrit and Neupogen type drugs.

In my opinion your dr. is wrong to say a few weeks off of the Riba will be okay and won't extend tx. You need another opinion. I have seen too many here say that they relapsed from going off of Riba for several weeks. I know Jim went off of it for a few days maybe? and has SVR. But if hubby has 48 weeks to tx, I sure wouldn't want to take the chance of txing for too short of a time.

Oh yeah, someone here said if you go to the ER and claim he is having chest pains, they will most likely give him a transfusion. Maybe just give him a little punch and make it true! Kidding, but I sure would work it to keep the meds up. 7 is REALLY low. I know I would be in the ER in a heartbeat for a transfusion. Just my opinion though.

Sorry you have to go through this!!

[GrandOak]

My first doc was an Infectious Disease specialist and she cut my riba in half (1200 to 600) after my first month of tx when Hgb dropped to 9.8.  She was simply following the protocol as prescribed by the Product Insert.  As I learned more about HCV, it became apparent she knew next to nothing.  Bein two years out of school, I can not really fault her for not being knowledgable, but I do in that she took far too long, in my estimation, before admiting that she was in way over her head in treating my HCV.

I've since learned that a HCV knowledgeable doc would not let it drop that low before administering Procrit, unless cardio issues prevent them from doing so.  I am also fairly certain that the reduction seriously jepordized my chance at SVR this go around.

About the first thing my new doc did after I switched at 7 wks as administer Procrit. It has since taken me months of Procrit and Riba increases to get me back to full riba dosage. During that time I experienced a serious viral breakthrough (at least I consider a jump of 1.1 mil in VL serious).  But I am being given a shot at a full 12 wks of full med dosage before yanking me off of tx.  If I can show a 2 log drop from my original 72 million, we will discuss tx continuation.  I say discuss because of the level of Procrit I'm on (100,000 U per wk) coupled with the fact that we needed to add Neupogen very late in tx (i.e. wk 20 or so), makes the issue of tx continuation a bit more risky.

Bottomline, I think folks should be immediately looking for a new doc if Hgb drops into 10's, or begins to drop quickly, and the discussion of rescue meds is never brought up.

I too waited until too late (who woulda thunk 4 wks would be waiting to long) and may wind up not being able to complete tx this time, and being a Geno 1a Stage 4 already, I do not feel I have the luxury of waiting for new meds to hit market.

I pray the same does not hold true for your hubby Maui.  I'm simply giving my testamony and hoping that your hubby does not end up walking the same road as I.

[sfbaygirl]

You are a perfect example of why someone should not reduce meds! Sorry to say this, as it has to be really hard for you. Thankfully when my Hgb dropped 5 pts in 2 weeks, I had the hemo to turn to. My dr. wanted me to reduce meds. I was only on my 3rd week when this happened and I didn't know much at all about this stuff. Thankfully I was visiting here and learned that I shouldn't reduce meds, if at all possible. Especially in the first 12 weeks.

I guess it's like getting old, don't you wish you knew then what you know now?

When is your 12 weeks up? Are you doing a PCR at 12 weeks or before?

[painterlady13]

I had the lowering HGB fairly early (3 weeks)into TX also and my doc reduced my riba 200 a week till I got to 600, but only after transfusing and I am still on low riba until bloodwork evens out. Also I have been on procrit since then. it took 3 more weeks for the hgb to get back above 10.  I do believe that if my HGB had not started rising Doc would have taken me off temporarily also.  Listen to the doc, give it 3-4 weeks for procrit to kick in, during that time the doc should also be doing weekly blood tests.  I wish him good luck and SVR

[Maui lover]

Thanks GO and SF Bay (I'm also in the SF Bay Area) and everyone else too!  Oak, I really feel for your situation.  I really hope that you get through this and can continue for that additional time.  I can relate to your first doc scenario.  We deal mostly with the NP and she is really new to HepC.  I think at this point I know more than her just from reading this board.  I did get nervous last week when the doc said he'd never prescribed Procrit before and that made me wonder how many HepC patients he's actually treated.  But apparently he consulted with the doctor that I spoke with tonight and that guy sounded like he had much more experience treating HepC.  

I will say that the doc prescribed the Procrit as soon as the 9.7 hgb labs came back, but a week passed in between him writing the rx and actually starting the med.  That was because he wanted the NP to show us how to do it and it was like pulling teeth getting an appointment for that.  He should have had the Procrit in the office and ready that first day. If so he'd have three injections already and we might be looking at an entirely different situation.  Grrrrrrrr...........  

[bobbyullc]

the drop to 7.0 of hgb in the 1st month seems serious. he must be very careful as this could be an immediate health problem as opposed to a long term hep c problem. he may not be able to take peg/riba tx. hopefully he is not too serious and can wait. ask about procrit and transfusions but be careful. good luck.
bobby

[sfbaygirl]

Cool! Another bay area person! We're gonna have to all get together one of these days! Where are you?

[Maui lover]

Sfbaygirl, I'm in Marin County.  Where are you?  

Bobby, he started Procrit last week and docs aren't willing to transfuse at this point.  He's stage 2-3/grade 4, so he probably doesn't a whole lot of time (meaning years) to wait.

[Snookmiester]

Just take him over to your local ER, and tell him that he is short of breathe, etc... When They run labs, they will see the low Hemoglobin, and policy is to transfuse ANYTHING under 8..
This would buy him some time. Then you can discuss more options with Dr, as stopping Riba all together will SEVERELY jeopardize his chances of obtaining SVR...
I would drop to 800, or possibly 600 if not dramatic results are seen. But transfusion will get IMMEDIATE results.

[NYgirl]

But why are they going to STOP the Riba...it takes from 2 - 6 weeks for the Procrit to WORK!

It hasn't been long enough!!!!!!

I dealt with a very long hemo for quite a while because I did NOT want to even reduce meds at all. It was HELL but I did make it through!  I am SO MAD why in the world don't they up the Procrit and give it TIME!  It's NOT an instant shot and they know it!

ARGH doctors!

[sfbaygirl]

Snook: I totally agree. Take him to the ER!

GO; It is frustrating knowing that something could have been done back then. I was lucky enough to listen around here to the advise and not reduce meds. I sure hope you are UND this time Next month you will know.

Maui: There are some great docs around here. Dr. Gish is one of those Rock star docs. Goofy is in Marin, I am in East Bay in Alamo.

[Maui lover]

I'm so upset and frustrated at this point.  I don't know what to do.  We spent so much time talking about it last night and it didn't end well!  We're both just angry about what's happened and we let emotion get in the way.  I didn't even discuss any of it with him this morning before leaving for work.  I do like the idea of just walking him into the ER.  I'll try to approach him with that this afternoon.  As for the Riba, that's where I'm having the problem.  I don't want to step on any toes, but I feel they way most of you do, that he shouldn't stop it.  I think reducing it would be the way to go for now.  At the same time, I feel like I'm micromanaging his care and it's overwhelming to me.  He's just doing what everyone else is telling him to and I think he's feeling VERY confused as well.

[GrandOak]

SF: I'm a little over half way of my 12 wks on 1400 mg of Riba.  My next PCR is 10/20/06.  So I'll know on 11/3/06 what it says and be meeting with doc to discuss where I go from there.  The sad thing is that 10/20 will be 39 wks and I could have been nearly done with tx if first doc was not so incompetent.  I can not really blame her for not knowing, but I do fault her for not being up front enough to admit that she did not know much about treating HCV beyond the textbooks.  Too many times I think a lot of problems result because of peoples pride keeping them from saying those four simple words "I do not know".

Maui:  I too have experience the frustration with being prescribed and getting the necessary paper to obtain the meds.  I found that sometimes one needs to be a real PIA and keep hounding.  I told my doc and nurse that I've given more injections to dogs during my years as a breeder/exhibitor that I felt more than comfortable enough with drawing from a vial and injecting.  But I did still have to persist to get the prescription in order to get the meds.

[Snookmiester]

Yeah, my wife is an RN in a step down unit...It's pretty much like ICU, but they classify it as Step down.. But a few of her good friends are in the ER....
Policy, is anybody below 8, IMMEDIATE transfusion!!!!! The transfusion will bump CBC's up considerably, and buy a few weeks time to see if procrit is working, or whether the Doc need to increase the dosage.
It is not safe for anyone to expose the body to prolonged periods of low Hemoglobin.. I know we have enough to worry about with all the other sx's, but low hemoglobin increses the risks of permanent damage, most noticably to the brain...
Run him over to the ER!!! It will buy him some time for sure!

[MissMiss]

I finished tx (48 wks) about 5 weeks ago.  My GI also told me he has never had a patient who needed a transfusion or rescue drugs.  Well, I blew his record all the pieces.  The last month of tx my hgb dropped to 7.4 and another .2 each day for almost a week.  Weekly invites for blood but I chose not to take them and a short reduction in Riba.  

Point is, sometimes your doc just doesn't have all the facts because this is really a very new tx.  There is still so much to learn about this awful disease.  So many of us have had to "teach" our doctors things they were just not aware of.  Docs need to start thinking "outside the box", so to speak.

I feel for your hubby.  HGB that low is no fun at all.  Let him know many of us fully understand what he is going through.  Best of luck with it all.

miss

[FlGuy]

Just as the riba causes the hgb to slope downward the procrit will cause it slope upward, taking some time in both directions.  Instead of waiting for the hgb to arrive at the desired level before re-starting the riba mabye talk the doc into re-introducing gradually starting now.  For example, if procrit #1 was 9/12 and procrit #2 was this week, then maybe you can begin the riba now at 400 (for example) and ramp it back up over the next week or ten days (for example) and then get back to full dose at about the same time that the procrit has become effective. Then, continue to monitor the hgb weekly, applying more procrit with the aim to keep riba full.

[GrandOak]

When I first seen your nick, I thought you were from Maui.  Then when you mentioned being in the bay area, I figured your hubby must be named Maui.  But I wondered who would name their kid Maui, was it something like a boy named Sue ;-P

Eureka, I think I've finally got it, your a bay girl who would rather be in Maui!  Wouldn't we all.


Hey, let's protest for hut there for tx duration and a hot tub to be in the goody pack we all get when we start tx. Sure would make tx alot more enjoyable.  It might even get a few more folks to acknowledge that they have this insidious disease so we could show the true level of infection and maybe get more funding to find a better tx.

[Maui lover]

GrandOak, you hit the nail on the head!  As much as I love the Bay Area, there's no place on earth I'd rather be than Maui.  Especially right about now.  =(  I love your idea, where do we sign up??

Again, I want to thank EVERYBODY for their input, you have all helped immensely.  I called the doc's office this a.m. and left a long-winded message, basically laying out ALL my concerns and frustrations.  We'll see how far that gets me.  

I did also get a hardcopy of the labs and his actual HGB is 7.6, not the 7.0 I was originally told.  So while it is still low, it's closer to 8 than 7, so again, I'm not understanding the Riba stoppage.  His WBC and RBC are also really low, in fact the report says "alert" rather than the usual "high" or "low".  His WBC is 2.1, down from 3.8 and his RBC is 2.25, down from 3.02.  What was interesting to me is that his platelets actually went up from 123 to 138.  Is that unusual?  His Absolute Neutrophils are also at the "alert" stage at 1.0.