2b, week 7, holding dose's

[Lady Lauri]

  
   Okay! hgb now at 10.3 in 6 week labs. Was told as we have already dose reduced, that if it drop's to 10 or below next labs, they may 'hold dosing' until back up. Confused as has been posted that it could go as low as 8.5 before that happened (but in a trial).
   Now I am worried. I will get shot 8 in before next labs, but very concerned as isn't this when, even with RVR at week 4 , the virus can sneak back in....missing dose's?

  To refresh: 2b, VL at start 1, 550,000
  5 weeks at 180mg Peg/ 800 Riba
  RVR week 4 labs
  Reduced at 6th shot to 135mg Peg/600 Riba

  6 week labs: Posting all
   Glucose: 53 (whats up with that, way low, eating LOTS of suger?)
   T. Protein 6.3
   Alb. 3.7
   LD 161
   T. Bili 0.5
   AST 22
   Alt 12
   Alkphos 59
   GGT   17
   Amylase  54
   NA    135
   K (?) 4.3
   Mag 2.3
   Bun  9
   RBC 3.19
   Hgb    10.2
   Hct     30.8
   Plt       173
   WBC      4.3
   ANC    2.3   (what are these? Where's neuts this time??)

Pigeona, Ladybug….you both had to stop early, both SVR, but why did you have to stop?
Ladybug…think you did the 16 weeks, why was that decided? He did say last week I could just get to week 16 and he’d be comfortable with SVR for me.
I'm stressing :{   Really want to at least get to 13-16 weeks. Any input on how bad this could affect RVR. SVR if I miss a few weeks dosing? OR if I ask if we could try the 90mg Peg/400 Riba first?

                                           Thanks, not happy with this :{                           LL

[alagirl]

oh sh^t! Sorry, didn't realize that was a novella on your thread.  Brain addled.

[alagirl]

Stop the ribavirin completely if the hgb goes below 8.5. It also states it's better to reduce than stop.
-----------------------------------------------------------
I just wanted to say here that there are two ways to come at that problem.  You can either stop or reduce the ribavirin or the other option is to increase the blood cell count (or some of both).  My doctor's office has all of the combo treatment guidelines that pegasys gives printed at the bottom of the testing schedule chart they give you to keep track of when you need to come in for viral loads and other labwork.

It has the guidelines you list above.  However, in practice my doctor actually prefers to attempt to manage the side effects before taking the step of changing or withdrawing doses.  And I have to say that I have never been bustled into a hematologists office as fast I was by my HCV doctor when he saw what was happening with my red blood cell lines.  It actually was remiss of me not to say something to him sooner because my blood draws with him are monthly and I was monitoring my own cbc's but not taking them to him until each monthly visit.  After seeing that I was getting into trouble with my cbc's he did not waste any time but was very proactive about the consult.  At the first point that they became aware I was having issues they got me in to see the hematologist asap with hardly even a waiting time (due to my hx of anemia).  Usually, they handle the procrit scrips and things in house.  But it encouraged me to know that A) they took it seriously and that they wanted quick intervention, and that B) even though they have about 400 HCV patients, they are are able to respond to the individual treatment issues of one patient.  (When I say they, I mean his office.  His nurse still sucks.)  lol

Also, my hematologist seems very bright and he is willing to do whatever he can for me and is following me very closely.  The next time (if it happens) that my count crashes he wants me to come there immediately so they can admit me at his hospital so he can get a testing battery done prior to transfusion diluting the results because it will better allow him to get a complete picture of exactly what is happening in my body at that time just prior to the intervention.  He said I did the right thing going to the ER and going ahead with the transfusion this last time given the time constraint and the fact that I needed to be in court, but he really wants me there if and when there is a next time so he can tailor the intervention to the exact cause of the anemia.  There are apparently some additional modalities they can use to stop hemolysis other than just blood transfusions and/or the addition of procrit.  Which was news to me, I'd thought those were the only options.  Also, the hematologist followed up immediately with the GP at Rapid Care where I get my blood draws because I saw a note in my chart that he had called right after he talked to me and made them highlight my chart so that he'll get immediate faxes on my twice weekly cbc's with reticulyte counts.  

So yes, I am working to get an outside consult also which will include him and my HCV doc so we can plan for contingencies but I guess I am just impressed that my current doctors are working so well together to help me.  I have had health issues most of my life and I am used to having to practically fight for intervention at times.  So this little synergy my providers have going at the moment is really sweet.

Extreme Treatment - that's what I've decided to call my course on this combo therapy.  

I know that a lot of people complain about their docs really not paying attention to their concerns all the time but all of my doctors, even the ones I interface with at the ER really seem to have this committed attitude towards MY treatment.  In other words, while it may eventually come to pass that there is a dosage change made in my therapy, they all seem willing to do everything they can to support me so that I can stay on it and they all seem to agree that due to the fact that I'm treating while in the acute phase there isn't even a question about "whether" I should stay on it even though I'm having some health issues.  But I mean, transfusions in the ER?  That was really them going totally out of their way.  I had no idea that it was such a complicated time consuming process, and it also meant that literally one of the ER nurses had to sit next to my bed for the entire first hour of each unit of blood.

We are talking about a smalltown ER that was willing to provide this type of support when they were already having a busy night and were short staffed, just so I could have a successful treatment.  Then there is my local rapid care who is not charging me a copay but letting me come in twice a week for bloodwork AND they are going out of their way to run an additional quick cbc in their office on each draw just so they'll know right away if it looks like I'm really in trouble (that quick cbc is what gave us the alert on Monday that I'd taken a dive in hgb that put me kind of into the danger zone).  Since the lab they send off to doesn't come back until usually at least the next day if not two days this is a really helpful quick check.  And the staff there especially was so excited to see my 4 week negative/UND when I brought it in for them to add to my chart.  So, I just feel very fortunate and grateful for the attitude of so many of my providers.  They take me seriously, they listen to me, and most of them just seem to be so invested and working so hard to see me through treatment that it really just touches me.  All of the support I've been given is definitely one of the things I'm drawing on when I have these difficult days like today.  And that's to say nothing of my family.  They call and check on me constantly and whoever is in town (which is sometimes a bit more problematic because the family I have here is gone a LOT) but anyone who is here will always drop everything if I just can't drive to a medical appointment.  And with all of these specialists it just seems like I have multiple physician visits every week.

And then there's my actual primary care doc who just has made it a habit to call me twice a week to get an update on my condition and usually he'll stop by here on Saturdays and check on me too.

Anyway, I just feel so fortunate that my providers seem to CARE.  It makes me feel a greater commitment to my own treatment since so many seem to be going out of their way to help me get through it.

[Lady Lauri]

   Be thinking of you when I get to my 'thats it' point, gut feeling!  Course will have facts to decide on, not JUST 'had it'!  (We'd all quit at week 5 if that was the case :}

  Do the favorites thing, need to clean it out actually. Pulled up that site and couldn't get it at 1st. Got it, saved it, great site for reference, questions. And staying stubborn, doubt that will EVER be a problem, LOL.

   Going to meet some heppers at the Ocala, Fl. camp out tomorrow! ( I'm in Ocala) So cool they do this. Can't wait..... a SOCIAL event....1st one in mths. Whoo Hooo! Thought about walking up with a big Smirnoff bottle.....with WATER in it, heh, heh! But don't know their sense of humor yet :}

Gotta go 'foo foo' a bit! Been walking around in jogging pants and hair in a bun for weeks. Make up.....do I even still own make up ???? Car keys??? Purse???? Money, do I have any money???
LOL.....joining the land of the living for a day is sounding a bit hectic:}

                                         Hope to join you in SVR land soon,   LL

[ladybug52]

I am the stubborn type to take things into my own hands,


Me TOO! I decided when I didn't need the procrit even when the dr was still telling me to continue taking it. I stopped when my hgb got to 11.3 and she thought I was still taking it when it rose again to 12. I thought I'd save it for someone who would need it more later, and luckily that was the right decision for me. I also decided to end tx on my own and I had many wonderful well wishers who wanted me to continue so that I would have a higher chance of success. I appreciated every ones concern, but I had to do what felt right for me.
When I find a website I like, I save it in favorites under Ladybug. It's an easy reference tool for me to pull things from later.
Hope you stay stubborn!
hugs,
Bug

[Lady Lauri]

  THANK YOU! Never quite 'got' the 1/2 life thing, you explained in layman’s terms, which I need:} Also was looking for that answer of when Riba MUST be stopped , (as you said 8.5) since in the trial they lean towards 10 and below?? I will reduce the Riba more if it gets to even 9.5. Just no ‘extra’ room here, per trial.
I also think the Riba is the worst for me, just going from 800 to 600 seemed to make a difference, but than 4 days later, he also reduced the Peg. And of course, my body could also be adapting to the drops in hgb now.

  My Dr. suggested at last app. that I could 'safely' stop at 16 also, so my own personal 'goal' is to do 18-20, than I'll feel safer. At this point, now grasping for 16 , as per them stopping. From all the help here, and my own SLOW research, it is pretty clear that reducing, Riba,  (even if I have to without telling them!) is a much safer step than holding dose's. (I could also increase my own Peg. a bit! 180mg. in each syringe still. ) I am the stubborn type to take things into my own hands, if need be, and not be just a # in a trial nor take their 'standard' advice when it's obvious theirs a better way, for me. Never been much of one for rules, being told what to do, LOL.
  For now, next labs will tell, but must keep hgb at 10.2 or up!! Going to check out the site you sent.
                                      Thanks much, Bug :}..............................LL

[ladybug52]

Here's the same info on ribavirin and anemia.
http://hcvadvocate.org/hepatitis/factsheets_pdf/anemia.pdf
Basically echos what Cocksparrow and Jim have said, but it's in pdf form and I'm unable to copy and paste.
Here's the highlights:
Riba dose reduction or the use of a growth factor harmone (erythropoieton) is recommended when the hemoglobin goes below 10. Stop the ribavirin completely if the hgb goes below 8.5. It also states it's better to reduce than stop.
Ribavirin has a 1/2 life of 12 days---in other words, 12 days for the ribavirin to achieve 1/2 of it's original value. Peg-intron is approximately 40-60 hours. I have read studies that state the peg-intron is harsher than pegasys although they are basically the same drug.
My ribavirin dropped from 14.3 to 10.1 after three weeks of tx, but I started procrit, then stopped because my hgb rose again and stayed stable thru tx.
My stopping at 16 weeks was by choice, not dr's recommendation. I felt lousy, was working, did not have much of a brain and was afraid of long term side effects. I felt that I would be ok with my early und at 3 weeks. Jim had posted studies re: 12 weeks tx with peg-intron and 16 weeks with pegasys. I did 16 weeks with peg-intron and was willing to take the chance.
The meds (don't know which one but I bet it was the riba) stayed in my system for about 4-6 weeks after because I  continued to lose hair by the handful, and developed severe itching and hives. I felt worse after tx with the itching plus hip pain. I got a steroid shot, finally, that saved me.
Good luck, I hope you lower the dose and keep at it till at least week 12. Just do what's best for you and make the decision on your own. You'll get a lot of opinions and advice (probably already noticed!)
hugs,
Bug