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!
Shep said
Jun 14, 2012
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!
Margo said
Jun 14, 2012
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!
LanaiSurferGirl said
Jun 14, 2012
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. :)
mallani said
Jun 14, 2012
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!
LanaiSurferGirl said
Jun 14, 2012
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
Margo said
Jun 14, 2012
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:)
LanaiSurferGirl said
Jun 14, 2012
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
Margo said
Jun 13, 2012
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...
davesf said
Jun 13, 2012
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.
Margo said
Jun 13, 2012
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 . 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:)
news said
Jun 13, 2012
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 . This is the new normal. Good thing is, it has a definite end. We just need to get there without going crazy.
Alan
Margo said
Jun 13, 2012
Hi Mallani, my HGB is 10 hematocrit 32, MCV 90.6.
mallani said
Jun 13, 2012
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.
Margo said
Jun 13, 2012
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!
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. :)
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!
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
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
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.
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
. This is the new normal. Good thing is, it has a definite end. We just need to get there without going crazy.
Alan
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.