low hemoglobin

[chelsee75]

Ok, so I had my first round of blood work thursday and my doctor called me today. She says that my hemoglobin has dropped from 14 to 8 and I need to reduce the riboviron from 3 in the morning and 2 at night to 1 in the morning and 1 at night. I have to go see her monday and she says I may need a blood transfusion. Im scared. I cant catch a break with this treatment. Im afraid if I cut down on the riboviron that it wont work and I wont be undetectable. I dont want a blood transfusion. This is crazy. I dunno whats going on and I dont like it. Any thoughts?

Chelsee

[alice]

Chelsee,

Anemia on tx is common and many of us have had to either reduce or ribavirin dose, get transfusions and/or start on injectable drugs (Procrit or others) to raise our hemoglobin. Your Hgb dropped a lot very fast and I think your doctor is wise to cut your ribavirin. Since you are a Geno1, I suspect that you are taking incivek? Is this true? That's important information but either way, your doc is right to do something about this.

many people get transfusions and say they are no big deal.... they are kind of boring having to sit there for so long and then they feel MUCH better when it's over. However, I share your feelings about them, and I did not get one when  my Hgb dropped to 8.4. I cut my ribavirin dose (with my doctor's agreement) by 20o mg/day and started Procrit. It took 6-7 weeks before I was above 10 again.

***Since you are taking 5 pills of ribavirin /day, I am guessing that you are taking 200  mg/pills. If this is correct, then your doctor is asking you to drop to 400 mg/day. I think this is too low if you are taking incivek now. The clinical trials only dropped to 600 mg/day. Ask Hygiea about this and please talk to you doctor about this ASAP.****

Don't panic! There are plenty of people on our site who have been in this situation and I'm sure they will respond to your post too. Hang in there.

alice

[DougV]

Chelsee,

How long have were you on treatment before you had these test ran?  What type of drugs are you taking? 

Reducing from 1000mg to 400mg is a big reduction, but a drop from 14 to 8 is a big drop too.

At 8.0 and presumably still falling you have limited choices.  Dose reduction may work but can take awhile to take effects.  Just as an example when I finished treatment and thus reduced to no RIBA it still took three weeks before my hemoglobin ceased falling.  You are already at 8.0 which is getting low.  Life threatening probably not but low.  You can fall lower and be okay, I've known some that have fallen below 5.0 but only a few.  Personally my lowest was 5.8 and it was not very fun.  Procrit and Aranesp take time to start to work as it takes time to produce red blood cells, so here again even if prescribed it will take awhile to do anything, in the meantime your level can continue to fall.

This all may be crazy and you don't like it, but sadly it is a risk of treatment.  Almost bet you are taking Incivek as a rapid drop like this at the beginning of treatment seems more common with it than with IFN/RIBA alone.

Big question too is how do you feel?  Reactions to low hemoglobin vary widely.  Some at 8.0 are gasping for air like a fish out of water, others are working and going to school seemingly little effected.  How you feel and look is in large part what determines what you should do.  If you are feeling fine perhaps you might want to suggest do labs in one more week after reduction and see where you are.  But be careful, there is a level beyond which things get dangerous.  Another consideration might be have you had any unusual bleeding, even extremely heavy period, something that might have affected hemoglobin.  If so your doctor may consider that.

If I may, whay the big concern with transfusion?  Today blood is screened well, certainly it is not without risk, but neither is being told you have to discontinue treatment, or risking organ damage by constantly running low hemoglobin levels.  The advantage is it will work, work for all intents and purposes instantly, and with modern typing and crossmatching risk are low.  The rescue drugs were totally ineffective for me and I lived on transfusions.  And if you are worried about dose reduction and impact on clearing the virus, transfusions can be the way to go.  They allowed me to continue dosage at 1200mg RIBA throughout treatment.

I would suggest you talk to your doctor about seeing a hematologist if insurance allows.  That was a huge help with me.

My suggestion...

Go see her Monday, talk to her about your fear of reducing drugs.  Ask here about a referral to a good hematologist.  And if she wants to give you a transfusion in the intern period, go for it.

Doug

[chelsee75]

thanks for the advice. I am on incivek. This is my 5th week of treatment. Im just scared of needles so the thought of a blood transfusion freaks me out.

[chelsee75]

oh, and, I do get really winded easily. Climbing stairs kills me.

[TakkiC]

Important Note: I am not a doctor and my opinions may be total BS.

Chelsee:

Your one-month Hgb drop is similar to that I experienced over the entire course of my treatment. I am speculating that the drastic reduction in your ribavirin dosage is a temporary measure until the anemia is stabilized. If they can keep it from dropping any lower, you are probably out of immediate danger.

I am not too familiar with Telaprevir, but I know you will go off it in about 7 more weeks. Afterward, there will be one less drug eating away at your blood.

In the meantime, take any and all rescue measures available to you to preserve the integrity of your treatment. You only get one shot with the protease inhibitors, so it needs to work now.

Anemia sucks. Its effects were among the most challenging of my treatment. My Hgb levels were always just high enough to disqualify me from receiving rescue drugs. Strangely, my doc finally offered me Procrit with only three weeks of treatment remaining. I passed. "Where was this when I was really feeling like cr*p!" I asked.

Be assured, you have our full support. Please keep us updated.

[chelsee75]

thank you so much! Im so grateful I found this site! There are so many caring people here. It makes me feel so much better!

[ole44]

they sure helped me out chelsee, not sure where I would be with out this support group of special people

[chelsee75]

 

[banarep]

the good news is that there is a great deal of evidence to show anemia is a sign of the meds working.  that drop is a bit low.  I was on telaprevir and they dropped me from 1200 to 600, I concur you need to see about rescue drugs at least till your 12 weeks of the PI are done.  Then it does not seem to be that important with the riba amount.

good luck and let us know.

[greyrocker]

FYI re:anemia

Hepatitis C Virus Treatment-Related Anemia Is Associated With Higher Sustained Virologic Response Rate

http://www.gastrojournal.org/article/S0016-5085%2810%2901222-9/abstract

http://hcvsupport.org/forum/index.php/topic,1289.msg18786.html#msg18786

GR

[DougV]

If that was really a good indicator I should be the most cured person on the planet instead of having just finised round 3. 

Doug

[Trinity]

It appears the later in treatment one is ribavirin dose reduced the better off they are.  If you were UND by week 4 that is also a plus.  From what I've read riba dose reduction with Incivek doesn't have as negative an impact on achieving SVR  as it does with SOC only but I do think dropping the dosage by 600 mg daily is too much.  Has your doctor spoken with you about starting Procrit (Epogen) immediately?  He really should be thinking about intervention now.  Blood transfusion is more of a PITA than a scary thing.  Thank goodness Procrit and transfusion are options if we need them because they certainly have helped many stay on treatment without having to jeopardize treatment outcome due to dose reductions.

Trinty

[chelsee75]

Yes, my doctor said procrit is an option. The drastic drop in riboviron is only temporary. I see her on monday (tomorrow).

[TakkiC]

@ GreyRocker:

My doctor always said, "If we're not making you anemic, it's probably not working."