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Hep C Discussion Forum -> On Treatment -> Hemoglobin and platelets dropping faster than normal
Post Info TOPIC: Hemoglobin and platelets dropping faster than normal
CodeNameBleu


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RE: Hemoglobin and platelets dropping faster than normal
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Am so sorry you are having such a hard time. When my Hb started going south and talk of transfusions surfaced my soul almost left my body. I

dread transfusions! Its my nightmare realized. Luckily when they reduced the dosage it slowly crept back up. Am currently chronically neutropenic,

so sneeze near me and don't bother cover your nose and mouth, you get yourself a pimp slap.  Its hard though, with some people being so uncouth

and all, i have to wear one of those masks when am allowed to leave home. I have received several vaccinations since October 2013 and i have

several more in the next months. I would say listen to the doctors. If you have a good doctor, listen to them. We all want to go through this

treatment one time and one time only. For as long as they say, keep going. Don't stop for nothing. #Cheering you on from the UK!

 



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Diagnosis:2012. Tests Results: GenoType 1/ Viral Load 51,000/ Liver Normal.

Rx started: 10.06.2013 Copegus (Ribavirin) 200mg + Peg Interferon 180mcg . Down to

Peg Interferon 135mcg 3 months later. No Virus Detected (NVD) result to date. Rx duration: 48wks.
dustbear


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mallani wrote:

Hi dustbear,

I was surprised by the FDA opinion of Procrit. The Reference No. is 3138387 (not 3138383).  You have mis-quoted the article. It actually reads that Procrit should not be used for the Rx of anaemia if you have cancer etc. and in place of EMERGENCY Rx of anaemia.  Procrit has been used by many Forum Members. This is an article, dealing specifically with Procrit in HCV Rx.

 

http://www.natap.org/2003/DDW/day18.htm

 Just caught up to your reply Mallani. Thanks for correcting my mistakes!



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Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
rotting to the core


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Hey Dust,

It's been awhile I am sorry to hear your struggling so, you have gotten some great feedback. So all I can offer beyond that is some positive progression for you. And you prayers and best wishes.   pray.gif



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Timothy

GT3a Baseline VL 514,000, Week 4 VL 130, Week 12 UND and have been UND ever since.  

Completed 48 week of Pegasys & Copegus. EOT VL UND.   Achieved SVR after 48 weeks of treatment.                                                   

ucbgal


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dustbear,

     i'm starting to rethink my response to you. the sx from the procrit for me are worse than the pegasys. on wed. i give the pegasys,recover by sat. and give procrit sat. night. usually by tuesday the flu like sympthoms are gone! bottom line is i only have 2good days out of the week. in contrast i found the transfusions easier to handle and worked like lightning.

     therefore i believe if you're fortunate enough to have an outpatient center nearby,do it and get relief.

sandy,ucbgal



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2willy


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For me they waited until hemo went down to79 then had transfusion actually three 2 baggers over the 48 weeks. I had Melenoma cancer in2000 and Carsanoma 1996 but risk was way lower than option off coming off treatment.  This was my personel choice as I did not want to stop treatment and I did beat it and learned some valuable personal lessons also about expectations of others weaknesses or strengths each case is different and discuss it with your doctor and spouse

Bill and emma and raven



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Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
garfield


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Hi dustbear, hi mallani,

                                    as we know there are sometimes differences in treatment between the "Old and the New World".

In Germany procrit is forbidden for treatment of anemia in the case of hcv on medical reason. All with severe anemia get blood transfusion.

Comfortingly anemia is a good sign for svr.

 

Good luck

 

 

 



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mallani


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Hi dustbear,

I was surprised by the FDA opinion of Procrit. The Reference No. is 3138387 (not 3138383).  You have mis-quoted the article. It actually reads that Procrit should not be used for the Rx of anaemia if you have cancer etc. and in place of EMERGENCY Rx of anaemia.  Procrit has been used by many Forum Members. This is an article, dealing specifically with Procrit in HCV Rx.

 

http://www.natap.org/2003/DDW/day18.htm



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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
dustbear


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To ubcgal: I ended up staying with the dosage of riba and not lowering it until I see the doctor. I have a good idea why it happened. My hubby got the norovirus and ended up in emergency and I ended up in bed for 5 days fighting it off with what little immune system I had left. I'm positive that the next blood test results will be back to where they have been and this was just a blip in the map. My hubby is driving me so I'm ok.

To Mallani: As for the procrit, the US FDA as of 05/2012 ref#3138373 says "Procrit should not be used for treatment of anemia: in place of red blood cell transfusions. Procrit has not been proven to improve quality of life, fatigue or well-being".

I am leary of adding more chemicals to my body, esp after rejecting Victrelis.

I'm taking it day by day, and Monday I get 2 units of blood. It's not a hassle with my awesome medical team behind me. I pick up the phone one day, the next day I get a cross-match and the 3rd day I get blood. Everything is within 5 minutes of eachother and my home so my experiences have been positive. It's a break from this routine, I get to read a good book and meet people who have stories to share with me. The blood test results for a basic CBC is available to me online within 24 hours of testing.



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Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
ucbgal


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dustbear,

      sorry to hear your hemo & platlettes are dropping again. i'd give the procrit a try like mallani said. you may have to play w/ the dosage

in order to ensure it works effectively. also i'd  look at the sx charts to determine the proper ribo dosage w/ your hemo count.

      i started treatment w/800mg. of ribo, then 400 mg. and 2 wks ago went up to 6oo mg. my hemo dropped again as well to 7.8 and now i'll

be upping my procrit dosage and/or down to 200mg of ribo. i don't always listen to my dr.,who said they're god? think out side the box,take a risk,

live life. in fact tomorrow i go to a new dr. and i'm certain he'll be able to resolve this in a much better fashion.

     also,please don't drive!!! i may even go & get a cane like tig suggested!

sandy,ucbgal



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tonib


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sorry your having a hard time of it....hope things get better for you soon.



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
dustbear


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mallani wrote:

Hi dustbear,

Have you discussed Procrit with your Hepatologist? Getting repeated transfusions is a pain, and I would look for another way to raise the Hb. Your Riba dose is too low to be effective IMHO. Good luck!

 No I haven't discussed procrit with him and I won't see him for another 4 weeks!

I have been UND since week 4 and my riba was already lowered once before.

I'm not sure what to do, other than listen to the doctor and ask to see him soon

l just read a post that said riba reduction is due to low hb/rbc/platelets.

I trust him, but I am at a loss, do I listen to him or not?confuse

To Tig: I am going to have my hubby drive me for now!



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
mallani


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Hi dustbear,

Have you discussed Procrit with your Hepatologist? Getting repeated transfusions is a pain, and I would look for another way to raise the Hb. Your Riba dose is too low to be effective IMHO. Good luck!



__________________

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
Tig


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Those numbers are getting low! I've been having some severe dizziness myself, you be careful! I have had a number of falls because of it and that should be a big concern for you as well. I started using a cane when it gets bad, but find that using caution getting up from a chair or out of bed keeps it in check. I'm concerned about your low Ribavirin dose though. I haven't heard of a dose that low before. Anybody else hear of that? Hopefully it will be a short reduction. Sorry to hear about your headaches. Can your Hepa give you something for the severe ones? I hope so!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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dustbear


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I just had 2 units of blood 4 weeks ago. My hemoglobin has already dropped from 96 to 84 inside of 2 weeks, & my platelets are at an all-time low of 60. Blood pressure is 100/58 and I am having flashes of dizzyness.

The hepa just returned my call and ordered more blood and to reduce my ribavirin to 1 pill twice per day.

I feel like crap with a constant headache. no



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
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