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Hep C Discussion Forum -> On Treatment -> Looking for strategy to deal with falling Hemoglobin (Riba caused)
Post Info TOPIC: Looking for strategy to deal with falling Hemoglobin (Riba caused)
longld


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RE: Looking for strategy to deal with falling Hemoglobin (Riba caused)
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One month into Sovaldi/Riba treatment - Hg went from 12 to 8 (present).  Doctor has reduced Riba and explained to me that the treatment can still work with reduced Riba.   Note that many insurance companies will not pay for ProCrit until under 10 and some are under that within specific treatments.   Also, transfusions carry very real and specific risks - should not be considered lightly - don't ever forget that many HCV patients are trying to slay a dragon that began in a transfusion (when hep c was 'not a, not b').

hanging in there with you - did three minimal tasks today - each wore me out!



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62 Yrs Old, CHC Geno 3, Cirrhosis, Kidney Transplant (13 yrs), On Sovaldi/Riba Treatment (24 week) since Feb 01,2014

Viral Load 7M on 1/8/2014,  UND at EOT 7/18/2014
Gracie


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Mine went down to 9.8 and they dose reduced my RIBA. It worked and it went back up over ten. With triple, RIBA reduction has no effect on SVR IF you are anemic (or so my hepologist assures me). It use to have an effect on the double therapy. It's a personal decision and not an easy one. I do sneak RIBA when I'm feeling good, keep the dose reduction when I'm not. He made it clear if my counts went too low, they may have to stop treatment, although he did say he would give me a transfusion first. But no rescue drugs for me, they don't do that here. I am negative of hep c now, so it's working which is the main goal! I wouldnt worry too much, your counts aren't too bad. 10.6 is awesome actually, I haven't seen that all treatment.

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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
hepcsurvivor


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Thank you so much for sharing this with me my friends.  This is the kind of stuff I was looking for. It helps give me hope at least.



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Genotype 3A. Failed Peg and Ribivarin about 2006. Currently UND after 1 month Sovaldi and Ribavirin.
globetrotter


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Hi HCS

I am on the same treatment as Scruffy and my HB dropped to 9.0 from 15 in the first four weeks and explained why the dog walks were getting harder..I had no rescue treatment as my nurse said as long as I can cope then carry on without reduction but was to rest...they weren't going to intervene unless it went to 8 or below just to give me the best chance of clearing. Im now level at 10.5 and although knackered can function and you learn quickly what you can and can't do..cant wait to feel turbo charged when Hb back to normal.

 

 

 

Sally



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51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Scruffy


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Hiya hcs

Heres my tx story with anemia you can take it for what it is. On my 7th week Three drug tx (incivek) I got a call from my Doc. Do not pass go, go to the emergency room for a transfusion. My hb was 7.4 and I was out doing light labor. ( looking back I don't know how I managed that) I had the transfusion and started procrit no riba reduction. My hb would fall 1. a week so over the next 4 weeks I had 2 more transfusions and procrit injections. It was then I started practicing Tai Chi. I stopped being short of breath and felt a lot better. My hb dropped .1 week instead of 1. After about 3 weeks it started to go up still getting procrit. It went up to 9.4. After a while I got c@ckey. My stances went from relax to martial art. I worked standing on my feet for the last 40 years so the muscle memory was there. My legs doubled in size. I was practicing 2 times a day and lifting weights twice a week. My hb took a nose dive and I had to get shots for my wbc also. Last week my hb was 8.2 I stopped the weight lifting and backed off on the aggressive Tai Chi stances and went back to the high stances (beginners). This week the nurse asked me if I had a transfusion. I told her no why? She said my hb shot back up to 9.4 and my wbc were 28.4 big difference from the week before. So I learned a lesson.

Attitude means a lot as far as dose reduction goes. If your Doc sees you can tolerate the lower hb he might not lower your dose of riba.

Best wished for you!



-- Edited by Scruffy on Tuesday 4th of March 2014 04:16:22 PM

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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Enavigo3891


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I am only 21 days into treatment however I know that my doc was very clear on the Riba induced HGB drop. The only options are Riba adjustment, procrit, or transfusions and it was explained to me there are too many variables to say today, what we may do IF/WHEN that happens. As Malcolm said, it depends on what your body/mind can tolerate. And that's very specific to your labs and other health variables at that time. Person A may respond to you that they did transfusions but maybe your doctor won't allow it to get to that ... Person B may respond to you that they lowered their Riba but maybe you don't want to.  I think its going to be trial by fire for any of us who haven't gotten there yet and your doc is going to have a pretty good impact on the final decision.

On a side note - I can't tell you how many posts I've seen from people who rec'd calls from their docs telling them to drop their riba dose but they post that they will "sneak" it or wait just a few more days before they lower it because they want as many days on full dose as possible. I think everyone's got the same ultimate goal but you need to listen to your body.

Try and relax ... take it day by day. You're 5 weeks in - it's possible you'll level off and it won't ever become an issue.

Keep your head up and best of luck!



-- Edited by Enavigo3891 on Tuesday 4th of March 2014 03:25:27 AM

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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
hepcsurvivor


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mallani wrote:

Hi H.C.S,

We discussed this at length in your post of Feb 2nd.  From memory, your Hb was only 12 pre-Rx, so you haven't really dropped much. Your platelets are low, but I forget what they were before Rx. Are you cirrhotic?

Basically, you have to decide on what Hb level you can tolerate. A lot of us went through Rx with Hb levels well below 10. You may have to convince your doctor if you want to stay on the full dose of Riba. I doubt whether a transfusion would be suggested unless your Hb was 8 or less. Certainly, procrit is an option, and this can be discussed. I fully understand your desire to do what you can to stay Undet. at your age. Good luck.

 

Hi Mallani,

Reviewing that post (Why does Ribivarin lower Hemoglobin) I do recall (now) that the discussion turned to options, but I  didn't see much in the way of a clear path there. Perhaps there isn't one. Sorry if this is a double post in some eyes.

To answer your question, I recall the doc who did the biopsy commenting there was some degree of cirrhosis - he wasn't very specific and that was quite a while ago. 

This time, I am hoping to hear from anyone who had the same issues I am, and was able to overcome it. Any actual success stories would be great. Maybe I should have stated that more clearly. 

Thanks 

Gary

 

 



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Genotype 3A. Failed Peg and Ribivarin about 2006. Currently UND after 1 month Sovaldi and Ribavirin.
mallani


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Hi H.C.S,

We discussed this at length in your post of Feb 2nd.  From memory, your Hb was only 12 pre-Rx, so you haven't really dropped much. Your platelets are low, but I forget what they were before Rx. Are you cirrhotic?

Basically, you have to decide on what Hb level you can tolerate. A lot of us went through Rx with Hb levels well below 10. You may have to convince your doctor if you want to stay on the full dose of Riba. I doubt whether a transfusion would be suggested unless your Hb was 8 or less. Certainly, procrit is an option, and this can be discussed. I fully understand your desire to do what you can to stay Undet. at your age. Good luck.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
hepcsurvivor


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Hello People,

I'm about 5 weeks into TX and my blood levels are falling. Sorry this is hard to read, its a copy paste. I think each lists my numbers, followed by the normal range. So for Hemoglobin I am at 10.6 for example.

I did go UND after my 1st monthly, so I know the Sovaldi/Riba (1200mg) is working. I feel like this may be my last chance. I have to make this work. Have had Hep C for 35 years, I may not get another chance. So I am motivated to stay on full dosage.

My question is, assuming I get permission, which would be a better strategy:

Wait till HG falls under 10 and then at some point get Procrit?

Or, same but get a transfusion?

Any other thoughts on the best way to make it through would be most welcome. I have an appointment with my Doc in about 8 days and will ask her about the options - would really like to know what works best so I don't go in asking for something dumb. I have a LONG way to go (24 week program).

Many thanks in advance. - Gary

Result Date: 02/27/14 03:34 AM 

Analyte Result Value Ref. Range Units Abnormal Lab 
WHITE BLOOD CELL COUNT 2.9 3.8-10.8 Thousand/uL L SJ 
RED BLOOD CELL COUNT 3.26 4.20-5.80 Million/uL L 
HEMOGLOBIN 10.6 13.2-17.1 g/dL L 
HEMATOCRIT 31.1 38.5-50.0 % L 
MCV 95 80.0-100.0 fL 
MCH 32.5 27.0-33.0 pg 
MCHC 34.1 32.0-36.0 g/dL 
RDW 16.8 11.0-15.0 % H 
PLATELET COUNT 47 140-400 Thousand/uL L 
Review of the peripheral smear reveals decreased numbers of platelets. 

ABSOLUTE NEUTROPHILS 1682 1500-7800 Cells/uL 
ABSOLUTE LYMPHOCYTES 812 850-3900 Cells/uL L 
ABSOLUTE MONOCYTES 319 200-950 Cells/uL 
ABSOLUTE EOSINOPHILS 58 15-500 Cells/uL 
ABSOLUTE BASOPHILS 29 0-200 Cells/uL 
NEUTROPHILS 58 % 
LYMPHOCYTES 28 % 
MONOCYTES 11 % 
EOSINOPHILS 2 % 
BASOPHILS 1 % 

 



-- Edited by hepcsurvivor on Tuesday 4th of March 2014 01:35:16 AM

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Genotype 3A. Failed Peg and Ribivarin about 2006. Currently UND after 1 month Sovaldi and Ribavirin.
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