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Hep C Discussion Forum -> On Treatment -> Now it's anemia, no wonder I feel like crap...
Post Info TOPIC: Now it's anemia, no wonder I feel like crap...
Margo


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RE: Now it's anemia, no wonder I feel like crap...
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Shep wrote:

My doc put me on Procrit 13 weeks ago--saw him yesterday and said my numbers are not coming up but holding steady. I am really not liking the Procrit-in addition to having no energy, the Procrit sx make my muscles stiff and bones hurt. WBC dropped a little later--he reduced my Pegasys. I am just maintaining for the next 3 weeks--then I am going to give all this up!

Oh Shep, things I hear a about Neupogen and Procrit, bless them... Interferon isn't enough, it's whole 9 yards that we get. 3 weeks is not bad, you'll make it and forget it!

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
Shep


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My doc put me on Procrit 13 weeks ago--saw him yesterday and said my numbers are not coming up but holding steady. I am really not liking the Procrit-in addition to having no energy, the Procrit sx make my muscles stiff and bones hurt. WBC dropped a little later--he reduced my Pegasys. I am just maintaining for the next 3 weeks--then I am going to give all this up!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
Margo


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Thanks Meghan I will test frequently.:)I went in 2 weeks because of my low WBC count last time and found out low HGB and hematocrit this time. Always something. Mallani, Funny thing you mentioned about muscles. I noticed the injection sites on my thighs are a little pushed in or feel empty can't find the correct word for it. Interferon does destroy the muscle. I need to shoot in the belly to destroy some fat not muscle lol!

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
LanaiSurferGirl


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Malcom...I totally agree with you.  Especially when on the 3 drugs I felt like my body was overwhelmed with drugs and could feel my body trying to overcome their side effects.  The first 12 weeks of treatment I slept about 12-14 hours per day and was still tired.  Like you I had to cut back on physical activity and just surrender to the medication and let it do it's job.  If you are taking incivik...know that I felt much better after that ended although I still have fatigue and sleep now about 9-10 hours per night. :)  In the mornings and late night I really feel the medication slowing me down and making me tired.  I usually don't drink caffeine but do drink a cup or 2 of tea in the mornings to clear the brain/medication fog I feel. :)



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
mallani


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There has got to be more to it than the Hb and haematocrit. Before Rx, I played golf 3 times a week, went to the Gym. and took my boat out fishing. Now I am virtually confined to the apartment. Alan could do a 100km bike ride and his blood figures are similar to mine. I have trouble drinking water as it tastes bad and makes me nauseated. I probably manage 1.5-2 litres a day. I also can't stand the taste of coffee and diet coke so may be caffeine challenged. Perhaps there's a breakdown product from the drugs that makes the lethargy so intense. I was out for 3 hours yesterday having my 6 monthly liver imaging ( CT this time), and by the time I got home had to have a liedown. So I don't think it is mental. We all seem to react differently.

At this rate, after 48 weeks, I won't have any muscle left!



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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
LanaiSurferGirl


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Yes, that's lots of energy to chase kids around! :)  Monitor the anemia through more frequent blood tests.  I got in trouble because I was borderline and then didn't have another blood test til 4 weeks later.  In that 4 weeks it had dropped significantly.  I would suggest getting tested every 2 weeks to make sure it isn't dropping more.  When mine was really low and I had started procrit I got a CBC every week to monitor progress. :)

aloha,

Meghan



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
Margo


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LanaiSurferGirl wrote:

everyone is different and has a different patient history so you have to rely on what your body is feeling and what you and your physician agree on.  My HGB went down to 6.3 at the lowest but I am younger so my body was feeling the effects but I wasn't in immediate danger.  That was back at the end of January-early February.

It took procrit a while to kick in but it started rising slowly and now I hover just below normal...off of the telepravir helps too.  Good luck to you and start procrit earlier than later if you need it.  You can do a blood transfusion but I recently heard on the news that now people are contracting something called "Chagas Disease" that used to only be in South America but has spread up here so be careful and only take the blood if you are on your deathbed!

aloha,

Meghan

Hi Meghan, my dOctor doesn't feel I should start procrit yet. I am also young but it did catch up with me this time..,I do try to go on my day as usual, kids, work out, house work etc. I can't afford to rest, but by 6pm I feel exhausted. Blood transfusion, scary, I'm good with one virus, don't need anymore:)

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
LanaiSurferGirl


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everyone is different and has a different patient history so you have to rely on what your body is feeling and what you and your physician agree on.  My HGB went down to 6.3 at the lowest but I am younger so my body was feeling the effects but I wasn't in immediate danger.  That was back at the end of January-early February.

It took procrit a while to kick in but it started rising slowly and now I hover just below normal...off of the telepravir helps too.  Good luck to you and start procrit earlier than later if you need it.  You can do a blood transfusion but I recently heard on the news that now people are contracting something called "Chagas Disease" that used to only be in South America but has spread up here so be careful and only take the blood if you are on your deathbed!

aloha,

Meghan



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
Margo


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You are right Dave, looks like my test is not so bad but I feel bad. Can't imagine how people function with severe anemia...

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
davesf


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Yep, anemia is not a question of if you're going to have it.  That's a given.  The question is how bad.  Prepare for the worst and hope for the best.



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
Margo


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news wrote:

Yeah, Margo, by the standards they use for us, you are totally normal. My doc doesn't worry about hematocrit until it gets to 29. My MCV has been hovering up around 105 for months. HGB hangs around 9 to 11. So I guess we are supposed to huff and puff up the stairs, and make those little moans whenever we do anything strenuous, like get up out of the chair ashamed. This is the new normal. Good thing is, it has a definite end. We just need to get there without going crazy.

Alan

Thanks Alan:)

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
news


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Yeah, Margo, by the standards they use for us, you are totally normal. My doc doesn't worry about hematocrit until it gets to 29. My MCV has been hovering up around 105 for months. HGB hangs around 9 to 11. So I guess we are supposed to huff and puff up the stairs, and make those little moans whenever we do anything strenuous, like get up out of the chair ashamed. This is the new normal. Good thing is, it has a definite end. We just need to get there without going crazy.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Margo


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Hi Mallani, my HGB is 10 hematocrit 32, MCV 90.6.

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
mallani


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Hi Margo, Anaemia is a pretty vague term for us on Rx. What is your Hb, Haematocrit, MCV etc.? My Hb is 9.1, Haematocrit .31, MCV 110. My doc. wouldn't consider reducing my Riba from 1200 mgms a day, until my Hb was below 8.5! The usual definitions of low red cells, white cells and platelets have been thrown out the window for us! My platelets are 61, and he is happy for them to drop to 30! No wonder we feel so bad.



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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
Margo


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My WBC have increased from 2.3 to 2.7 but Hemoglobin and hematocrit have dropped. I Am constantly out of breath, even when I sleep I breath heavily. At least I know that Incivek is doing its job!

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
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