Red Blood cell drop

[sherritaylor12]

Anyone had a major red blood cell drop and had to reduce the ribavirin to 4 pill instead of 6?

[Trish77]

sherri, I didn't know any of these terms either when I came here, like many of us.  Like Dave said, obvious what you meant, I was a bit confused by the RBC and asked.  Thanks for clearing that up.

Thanks also for the information on the trial.  Response-guided therapy is an interesting approach and I hope it goes very well for both of you.  Good luck with your doctor's visit tomorrow also.

Trish

[spectda]

"When I was refering to RBC I was speaking of hemoglobin count. "
based on the numbers you provided it seemed apparent that you were referring to HGB, not RBCs

Most people recover well after treatment. Some have issues but many don't. Hopefully you and your hubby will be free of hcv when it's over.

Best of luck to you,
Dave

[willbb]

  You may want to touch base with Mary4now...I believe that is the study she is currently in.

WILL

[sherritaylor12]

Thanks for the article, very interesting since a transfusion is how I got Hep C in the first place.
When I was refering to RBC I was speaking of hemoglobin count.  My medical jargin is not what it should be.  I've never been very sick before.  

[sherritaylor12]

The study is "A Phase 2b, Randomized, Double-Blind, Placebo-Controlled Trial Evaluating 16 and 24 Weeks of Response Guided Therapy with GS-9190, GS-0256, Ribavirin (Copegus) and Peginterferon Alfa 2a (Pegasys) in Treatment Naive Subjects with Chronic Genotype 1 Hepatitis C Virus Infection.  WOW what a mouthful.  Anyone else on this study? It's in San Antonio, TX

[Trish77]

Hi sherri,

Question - I notice you are referring to RBC's and we're talking HGB - hemoglobin.  Two different things.  Is your trial paying attention to RBC counts in particular for some reason?  I know my trial was particularly looking at Lymphocyte counts in addition to the usual white blood cell counts.  Would you mind sharing what Gilead study you're on?

With regards to your hemolytic anemia (anemia caused by medication in this case) - my Hepatologist put me on B12 and Folic Acid when my hemoglobin dropped - it doesn't help in alot of cases but helps in some - my hepatologist said about 20% - so I took it.

Usually anything you add like that while on a trial should be run past your trial team so you might want to ask them about that on Monday also.

Generally dose reduction in the first 12 weeks in particular is not ideal, so anything that can be done to avoid that is preferable.  The transfusion question is an interesting one.

Good luck with this, sherri.

Trish

[spectda]

http://www.anemia.org/patients/feature-articles/content.php?contentid=000482&sectionid=00015


"Treatments for anemia are also varied and which one is right for you depends on what is causing the anemia. In many cases of mild or moderate anemia, treating the underlying condition will be enough to get hemoglobin levels rising again. Patients with mild or moderate anemia may not have any anemia-related symptoms or only a few signs of tiredness. However, when anemia becomes severe – generally when hemoglobin drops to or below 7-8 g/dL – transfusions are often used to quickly raise hemoglobin levels to a normal range and reduce symptoms like significant fatigue and dizziness."

[spectda]

I don't know what your trial parameters are but Im pretty sure that you would need to be in the 7s before a transfusion was required. I guess asking your doctor or trial nurse will give you the answer though. The trial I was I've been in had a line in the sand at 7.5 hgb for both men and woman, I went to 7.0 and didn't transfuse but treatment ended early because of it.

[blondie717]

  Wishing the best for you and your husband. Rest well.

[James10500]

Echo Dave's statement.

Good luck and hope for it to stabilize

[spectda]

Welcome to the forum
Your husband may feel better then you, but you are kicking hcv A$$ if your viral load was under 25 at week 3, and that's the point of treatment after all? Although you had a very low vl at the start of tx, you had a 3 log drop in 3 weeks which is a great response. Hopefully at week four you will be undetectable.

The anemia is most likely causing you to feel so poorly, but it is also a good indicator that your absorbing a good amount of ribavirin. It's unfortunate that you can't take procrit for the anemia rather then dose reduce. Still you may be getting enough based on your response. The dosing to begin with is based on your weight as I would guess you are aware of. Maybe you were close to the next lower riba weight class to begin with.

Good luck with treatment. Hopefully your hgb will stabilize.
- Dave

I

[sherritaylor12]

Thanks for your fast response, I will discuss with them on Monday.  Am pretty tired now so will check back on this great forum tomorrow.  

[willbb]

  I Imagine that after 39 years you have learned a few tricks :)

It would make sense that he feels better than you do..your Hgb. being that low is what can make you fatigued ,,out of breath quickly etc.

I believe  the trial I was in for a female th ey would transfuse at 9,so if yours is the same protocol,obviously you are very close.

  You are both having excellent results..so you would only want to dose reduce again as an absolute last resort, however with the hgb that low you should be discussing with  your study team forthwith their plan of action.

  And congrats on both of you having such good response to treatment.

   Keep us informed..

WILL

[sherritaylor12]

They said that if it went to low they would tranfuse.  My husband is on the same study at the same time his vl has dropped from 5,500,000 to 11,000 in the same time frame and his blood count is fine.  He seems to feel better than I do, but still hard on him.  We are in our 60's so it's a challenge.  Thank for all the replies.  We do have to try very hard to have patience with each other, but after 39 years together we've learned a few tricks.  

[sherritaylor12]

I did not add I am Hep C, geno 1a

[willbb]

  I see you responded at the same time sent that......9.2 is getting low and if their is no rescue drug allowed then a transfusion or a dose reduction would be the only alternative.

  You are having a good response  to tx. being <25 at three weeks, .  is their protocol transfusion in that trial?

[sherritaylor12]

I am on week 4 but results on vl are from week 2 and rbc from week 3

[willbb]

    yes some studys are restrictive  that way....the one I was in din"t allow rescue drugs either...they would  let the Hgb. go quite low actually before they would dose reduce..and some even want you to have a transfusion  before they will do that.

  As Fnzol  asked how low is it and as Pam asked what week are you in?

[sherritaylor12]

My red blood cells have dropped from 13.9 to 9.2 in 3 weeks but my vl has also dropped from 250,000 to less than 25 before they reduced the rib.  they started with a reduction of 1 rib but the rbc kept falling so they reduced 2 pills daily just a few days ago.  Said they would add back in if rbc came back up.  Anyone had this experience? Any knowledge on this sort of thing?

[sherritaylor12]

No, I am on a Gilead study (no insr.) and they are strict about what is allowed

[paen53]

Good questions above...One I would add is -  where in your treatment are you? Early on, as in < 12 weeks?

[willbb]

    Have they discussed the helper drug procrit with you before they dose reduce such a large amount?

[Fnzol]

How major?