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2029713 tn?1373041104

Hemoglobin levels and anemia on Incivek/Inf/Riba

I started Incivek triple therapy on January 11 of this year. My baseline hemoglobin was 14.4, at two weeks into treatment it was down to 11.6, at four weeks it was 10.0. I go for my 8 week test this Thursday. I feel fairly weak and lightheaded most of the time. I feel a little worse than I did at my four week blood test. Depression is pretty bad, as I am not on any AD.

My questions are: Do some people's hemoglobin levels stabilize without adjustment to their medication or addition of something like Procrit? Will my hemoglobin definitely continue to decline on the same downward trend? Is there a hemoglobin number where I absolutely will require a medication adjustment, or are adjustments made based upon how much weakness the patient can tolerate? Is Procrit safe?

I'm not scheduled to see my GI until the end of the Incivek portion of the medication. I'm in touch with the Nurse pretty frequently. She said I was slightly anemic, and should add a multivitamin with iron to my diet. I'm not sure about that...any opinions?
Best Answer
2062453 tn?1350332942
Hi Sunflower:

Both Incivek & Riba is really hard on red blood cells (RBCs) & Hemoglobin (Hgb).

I don't believe the drop in Hgb is linear -- I believe Hgb decreases at a decreasing rate. That means it will likely continue to drop, but not drop as fast as in the beginning.

Your Hgb might stabilize after you stop taking the Incivek after week 12 because there will be one less drug killing your RBCs.

Hgb for men runs about 2 points higher than for women. For me, I was authorized an intervention (Epogen/Procrit) at 10.5 Hgb. Without the Epogen, I would have received a transfusion at about 7 Hgb. It took me 30,000-40,000 units of Epogen (Procrit) to stop my Hgb from decreasing and to get it rising again, but that was better than a transfusion!

You're probably lightheaded because you are hypoxic (i.e., your not getting enough oxygen to your brain because of the anemia). If true, it's likely your night vision is being affected so be careful driving at night (or don't drive at night).

My guess is your doctor will first try to control the anemia by reducing your riba and then use Procrit/Epogen to avoid a transfusion (if necessary).

Be careful about adding iron. That could be a good thing, but it could also have consequences. Recommend coordinating the addition of iron with the nurse after you get your Week 8 test results.

Best,
Sentinel
23 Responses
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2062453 tn?1350332942
Thanks for the update. I was wondering how you were doing.

It sounds like your doctor is following the standard protocol, which is to first reduce ribavirin.

The next step may be to intervene with Procrit/Epogen to keep you on treatment (or wait until your hemoglobin hits your doctor's threshold for a transfusion and then intervene with a transfusion to keep you on treatment).

My insurance starts paying for Procrit/Epogen when hemoglobin drops below 10.5 and stops paying when hematocrit rises above 36. Insurances are different, but it sounds like you could easily get insurance authorization for Procrit/Epogen (if you want to go that route).

I aded you to my "Watch List." Please give us an update when you get your next CBC results.
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Avatar universal
When my hmg hit 9.2 and was still dropping the doctor added Procrit but in my case it really hasn't helped much.  Level over 6 weeks of Procrit bounced up to 9.9 then down to 9.5.  Still feel lousy so I can only imagine that at 8.9 you aren't feeling great either.  Doctor should be taking CBC weekly, some people "fall off a cliff" in hmg and can get in trouble quickly.
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2029713 tn?1373041104
I want to thank everyone who took the time to address my question.

To follow up, the cbc results showed that my hemoglobin had dropped to 8.9, hematocrit 26. The doctor reduced Riba to 800mg with a follow up blood test this week.
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Avatar universal
Doesn't sound like your doctor is being attentive enough to your condition.  I have been seeing mine monthly and when my hmg got low, he started weekly testing, called that day with results.  He told me that hmg 10 to 8.5 is a quality of life issue (no strength...) but below 8.5 it can be a QUANTITY of life concern.  Some on here have reported level at 7 or less before the doctor took action.  Tells me some of the doctors don't really know what they are doing IMO.  Bottom line is as a patient you are responsible for demanding better support and if not, find another doctor quickly.
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1995824 tn?1330379049
We started greatment the same week and must be in exactly the same boat.Agree that all of this is a balancing act.

I just had my ribavirin reduced Thursday to 600 mg. my Hmg was 9.4 on the 24th and dropped to 8.2 last Friday. I just got home from having my blood drawn today and am hoping that the dose reduction may result in a slight increase in Hmg. The plan is to see that, and then possibly start on Procrit on Friday. If I am still showing a decrease, he mentioned a transfusion.

I can totally relate to where you are. I have the hypoxia...can't walk from one room to the other without having to sit down with the blood whooshing in my ears and head....feel lightheaded and not altogether here.

So go and get that bloodwork done! We are not going to let anemia keep is for SVR!
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Avatar universal
Our tracks are running parallel, so we can use each other for comparison.  Very interested in your progress and wish you the very best.

I started treatment 1/13.  HGB 15.3 to 13.9 on 1/23 then 11.4 on 2/6.  After the 2/6 lab, was also UND on triple tx (incivek).  My doc was afraid the anemia was going to slip too fast so he reduced riba to 600.  Next lab was 10.9, so still dropping, but stablizing.  I did labs Monday and have a follow-up tomorrow.

His view is that 600 mg ribavirin in enough to be succesful on the tx.  If hgb drops below 10, then we start procrit and increase riba; if it stays about 10, we stay the course. The view is if you have to have procrit, then might as well increase riba (better more than less); if reduced is working, stay with it for now; when incivek is done, then evaluate.

I have had labs every 2 weeks since I started tx and a dr followup afterwards; once we get through incivek, then believe it will move to monthly and follow-ups with NP.

My doc is a familiy practitioner and treats a large population of hepC and HIV in Austin.  Have been with him for a long time.  At the last appointment we discussed pros and cons of GI and hepatologist drs.  His view as a family dr, he is treating the patient for all issues, of which hepc is just one; fortunately this is an specialist area for him and would not expect the same view to hold for other significant health issues.  He is genuinely concerned over my well being as a human, not just as someone that needs to take a bunch of drugs to kill the virus.

All through the years, we have evaluated when would be the best time to try treatment; both the first time and this round.  I trust him completely.

To weave back to the original question on anemia, this seems to me very much a balancing act drugs versus some quality of life.  We still have to function.  Currently, I got the itches and start of a nasty rash, so have addred atarax into my daily regiment with a passle full of ointments; it has affected my sleep, so taking ambien  a little more frequently to get through the night.  Possible that I will drop below 10 on the HGB and maybe to tangle with procrit.  Hopefully I can get through the next 5 weeks of incivek before the heat increases.

Sorry for the long and rambling missive.  Burst of energy late in the afternoon. Now I shall scratch.
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1972385 tn?1343827076
Stay well aware of you're anemia.See your dr on this.I got in a lot of trouble because I didn't now I had it because of this is a side effect I neglected.
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2062453 tn?1350332942
My experience is Incivek enhances many of the duel therapy side effects. The worse thing is it tends to accelerate the reduction in RBCs & Hemoglobin.

My baseline Hgb was 17.3. At week 8 it was 10.7. Sorry, can't find my week 4 results. Keep in mind that the normal range for a man's Hgb is higher than a woman's.

Oh, when it comes to anemia, it's not just the Hgb count that is important -- it's also the Hematocrit (Hct), which is the volume percentage (%) of red blood cells in blood (among other things).

Okay, don't want to get too technical, just want to ensure you give your doctor an opportunity to consider all of the lab results (and your description of signs/symptoms) so he/she can determine the appropriate action.

In closing, I don't suspect you are in danger -- provided you see the doctor soon. So, sleep well tonight and consider letting us know how your visit with the doctor went!
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1815939 tn?1377991799
Here is another site with some cut-off numbrs but I am not sure these numbers are the ones now being recommended by the experts.

http://www.drugs.com/pro/ribavirin.html

Go down a little ways to table 2 and you can see the chart and recommendations. (I tried to copy and paste it but it was unintelligible, lol.)

I still think there is another set of guidelines but I just cannot find it. Someone knows the site and the numbers, though, and I am sure they will post it.



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2029713 tn?1373041104
Thanks. I look at that now.
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2029713 tn?1373041104
Thanks pooh. I have an appt for tomorrow morning.

I used to work for a Doctor, so I'm hesitant to complain about them, but this is the third GI I've used. I liked my last GI that I used for my first tx in 1999, but he is in the medical center here in houston. It's an allday affair for a simple appointment. But, I'm regretting not using him this time around.

I felt bad the last time I treated, but not this bad.
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2062453 tn?1350332942
Here's one of many links for hypoxia:

http://www.medicalhealthtests.com/askquestion/185/what-are-the-signs-of-hypoxia.html

I suspect almost everyone on Hep-C therapy becomes hypoxic because of the drop in hemoglobin (that's called anemic hypoxia).

Suggest familiarizing yourself with hypoxia signs & symptoms and using these to help communicate the severity of your anemia to your doctor.

Be careful about delaying communicating with your doctor. You could really put yourself in a bind. There are interventions available, but your doctor needs to know what you are experiencing to help determine when to intervene and how to intervene.
Helpful - 0
2029713 tn?1373041104
Yes, I have standing orders. I had considered going in earlier, but wasn't sure how that would affect results, if at all. The order for this thurs is just for CBC. My insurance pays for Quest labs, and their turnaround for CBC is about 3-5 working days.

Calling Doc now.
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1815939 tn?1377991799
I don't know the answers or have a comment on all of your questions but I can address a couple of things.

First, If you started with a Hgb of 14.4 and it dropped to 11.6 in 2 weeks and then 10 at 4 weeks, that is quite a drop in 4 weeks. I think your doc or nurse or both are dropping the ball on monitoring this problem. If I recall correctly, the treatment guidelines call for every 2 week blood counts, so right there they have dropped the ball. I feel the nurse and/doc should have seen that you were getting close to the edge rather rapidly. In addition, with a Hgb of 10 at 4 weeks, I think your blood counts should have been checked at week 5 and weekly until stabilized. (Just for the record, my GI checked my blood counts every week while I was on Incivek. Now it is monthly since I am off Incivek. I alsdo saw the case manager every week while I was on Incivek. Now I see her monthly.) It has been almost 4 weeks since your last blood count. Your Hgb could be very low and could be causing your symptoms of weakness and lightheadedness. So I would contact the doc about this and your symptoms.

Many people's Hemoglobins do stabilize without med adjustment or Procrit, (my Hgb. did stabilize with no med adjustment and no procrit, but mine did not drop as rapidly as yours and it never went below 11.1. It sits in the 11's now and has been there since week 8). The problem with your Hgb is that it dropped rapidly and no one (doc/nurse) has followed up on that drop and checked your counts weekly to see if the rapid decline has continued.

I am not quite sure what the lower cut-off number is. I think it is in the 9's. I will try to find that data and post it. There are guidelines.

As far as depression, I would recommend seeing a psychiatrist for evaluation and the addition of an anti-depressant. Many of us are on anti-depressants and they generally work well. You do not want to let the depression get worse. Also, anti-depressants take a while to fully work so if you are depressed now you should be evaluated and get on something very soon.

I know nothing about Procrit. I also cannot comment too much on the iron, but with your Hgb. dropping as rapidly as your's is, I don't think iron alone is going to correct it. The drop is probably not from iron deficiency but rather from the drugs themselves. Iron might help some, but depending on how low your Hgb is now, you might need med adjustments.

Some links to Hep C treatment and anemia:

http://www.incivek.com/hcp/anemia

http://depts.washington.edu/hepstudy/hepC/mgmt/anemia/discussion.html

I cannot find the Hgb. cut-off number when Ribavirin is reduced. I will keep looking.
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Avatar universal
Do you have a standing order for your blood tests?  Can you just go in today?  maybe call your doc and ask?  Explain to him/her whats going on, it doesn 't take long to get CBC results back, I have gotten them back as soon as the same day before, but depends on what lab you use, my place has it;s own lab for CBC's
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2029713 tn?1373041104
Thanks. Calling the Doc seems to be the consensus, so I will do that.
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2029713 tn?1373041104
Thanks for the info on the Epogen and hemglobin levels. I tried searching the site here, but was overwhelmed.

I try to avoid driving at all any more.
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179856 tn?1333547362
It doesnt matter if you know what the cut off is because you need to get in there and get your CBC, asap. You were at 10 at week 4 and now it's week 8.....at one time he probably could have given you procrit but it takes time to work, either way now if you are down low enough they are going to dose reduce and or transfuse.....

You need to call.
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2029713 tn?1373041104
Thanks.

I'm still up and around, but I'm a slug for the most part. It's hard to think straight, as well. I feel confused sometimes.
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Avatar universal
My doc said that  <10 is when they start discussing rescue drugs or modifying Riba, but I have seen others on here be as low as 7 before they knew they knew things were that bad, that is pretty low and makes you feel very bad, some can't even hardly get out of bed....it can become dangerous if it gets too low
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2029713 tn?1373041104
Thanks. I know I should make an appointment, but...

I'm afraid if I go in, he'll lower my meds, which I would like to put off for as long as I can. That was why I wanted to know if anyone knew if there was an absolute cut off where the hemoglobin levels are dangerously low, or if it is a matter of how much the patient can tolerate.

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Avatar universal
i would see the dr i really would, I had to have two blood transfusions and my hgb stayed in the very low 8s for most of the treatment. I don't understand why you are only to see the doc at the end of the incevik part of treatment, to me that was the worst part and I had to see my doc and have bloodwork every week because of the anemia and the other sides I was having. I was told to take an iron tab as well, I haven't done it and I can't tell you not too as that is between you and the doc. But I would for sure see the doc before the incevik part is done that is just weird not to see them.
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