Aa
Thinking to stop tx.
i have completed 9 weeks hardly. last night was much bad for me. i couldt sleep whole the night. it was difficult for me to breath. Sometimes i hardly manage myself to stand up from bed. some times it is hard to speak. i feel energyless all the time. i can hardly walk 50 steps and then feel tiredness in legs. This tx is very hard to me. i m thinking to stop tx right now. What will happend i stop tx now. is it safe and sound? i dont know if i m undetected yet but i hope im undetected. But it is badluck for me that i cant complete it as i have done 27 shorts and 45 shots are remaining. Please tell me what should i do. i dont want to complete this tx over my deadbody.
Nov 10, 2008 11:14PM
During week 4,5 my hgb reduced 14.5 to 12.8 so it was very bad. At week 6,7 it was little better. week 8 is again very bad and my hgb is reducing to 12.2 again. whenever my hgb gets reduce i feel very much weak and itching and un-easiness all in my body. My heart beat is often 80-85 / minute even if i m in the bed. sometimes it comes down to 60. I have to go for work.
-can i get blood transfusion now at 12.2 hgb level?
As of mid November, he didn't need procrit. He may have to adjust to lower levels of hgb but most would love to have 12.2 hgb. In my opinion, he's just having a hard time adjusting to the effects of the meds. Weakness is a constant, just has to get used to it.
During week 4,5 my hgb reduced 14.5 to 12.8 so it was very bad. At week 6,7 it was little better. week 8 is again very bad and my hgb is reducing to 12.2 again. whenever my hgb gets reduce i feel very much weak and itching and un-easiness all in my body. My heart beat is often 80-85 / minute even if i m in the bed. sometimes it comes down to 60. I have to go for work.
-can i get blood transfusion now at 12.2 hgb level?
As of mid November, he didn't need procrit. He may have to adjust to lower levels of hgb but most would love to have 12.2 hgb. In my opinion, he's just having a hard time adjusting to the effects of the meds. Weakness is a constant, just has to get used to it.
you will not have much of a chance of clearing the virus if you stop this early. like the other poster said the virus may even come back stronger. Sounds like you need a better doctor, hepatologist if possible. your symptoms suggest you may need recue drugs, procrit, etc.
"Dr did not advised to check my genotype. he said in pakistan g3 is common.
Never got biopsy."
Unbelievable. No genotype, no biopsy. I understand the biopsy thing even though it's important for everyone to have a biopsy with hepc, but no genotype? So you will treat for 24 wks and you may require 48 wks? The doctor assumes your 3a? What if it isn't? I don't care what part of the world you come from, basics are basics. And rescues are not part of the equation as it appears.
I've read many of your post aligee, and you've been wanting to quit tx for a long time due to reduced hgb levels and weakness, almost from the start, which if you were familiar enough with hgb you would know numbers are excellent compared to most.
Attittude has alot to due with how we react to the medications as well. I've gotten through dizzy, throwing up, weak, fever, aches, chills, blurred vision, breathless, hairless days and still work. I know, not everybody is the same, but I'm doing it at 56 and you're only 28. Keep pushing hard, don't cave in to the symptoms.
I know you can't get the type of medical care in Pakistan that we have here, but tx is tough and you've just got to suck it up or quit. There are no other options.
Good Luck and hope you level out.
Trinity
Never got biopsy."
Unbelievable. No genotype, no biopsy. I understand the biopsy thing even though it's important for everyone to have a biopsy with hepc, but no genotype? So you will treat for 24 wks and you may require 48 wks? The doctor assumes your 3a? What if it isn't? I don't care what part of the world you come from, basics are basics. And rescues are not part of the equation as it appears.
I've read many of your post aligee, and you've been wanting to quit tx for a long time due to reduced hgb levels and weakness, almost from the start, which if you were familiar enough with hgb you would know numbers are excellent compared to most.
Attittude has alot to due with how we react to the medications as well. I've gotten through dizzy, throwing up, weak, fever, aches, chills, blurred vision, breathless, hairless days and still work. I know, not everybody is the same, but I'm doing it at 56 and you're only 28. Keep pushing hard, don't cave in to the symptoms.
I know you can't get the type of medical care in Pakistan that we have here, but tx is tough and you've just got to suck it up or quit. There are no other options.
Good Luck and hope you level out.
Trinity
If my math is correct, the hemoglobin values you posted were BEFORE you started treatment. The important hemoglobin values are DURING treatment. Have you had your hemoglobin taken during treatment at all? Do you know what it is now?
A significant drop in hemoglobin during treatment is primarily caused by the ribavirin pills and is called hemolytic anemia. It can become quite serious and the fact and is consistent with many of the symptons you mention. Having difficulty breathing is serious and should be brought to your doctor's attention immediately. You should have a hemoglobin test done right away, if you don't have a current one.
If it turns out that your problems are due to hemolytic anemia, then you have a few choices. You can ask for the helper drug, Procrit (epo) which is injected usually once per week. Procrit can take 2-3 weeks to start working so it's not a quick fix. Another alternative is to reduce your ribavirin dose. Not ideal because lower ribavirin doses are associated with lower SVR rates, but sometimes this is necessary. A third choice is blood transfusion if things are really bad. And fourth, sometimes it's necessary to either temporarily or permanently stop treatment. Because as you suggested, the idea is to kill the virus, not your body. And no, stopping treatment will not make the virus stronger and more resistant to future treatments. This simply isn't the case.
But again, you first have to bring all this to your doctor's attention right away and at a minimum get your hemoglobin tested. You also didn't mention anything about having a viral load test. Have you had one since you started treatment? If not, I would ask for one now to see if the drugs are working or not.
While difficult to determine the severity of someone's symptons over the internet and without blood tests -- potentially they sound quite serious and it's not something you want to toughen out without a full medical OK based on more blood tests and a physical examination. Things can get very serious.
All the best,
-- Jim
A significant drop in hemoglobin during treatment is primarily caused by the ribavirin pills and is called hemolytic anemia. It can become quite serious and the fact and is consistent with many of the symptons you mention. Having difficulty breathing is serious and should be brought to your doctor's attention immediately. You should have a hemoglobin test done right away, if you don't have a current one.
If it turns out that your problems are due to hemolytic anemia, then you have a few choices. You can ask for the helper drug, Procrit (epo) which is injected usually once per week. Procrit can take 2-3 weeks to start working so it's not a quick fix. Another alternative is to reduce your ribavirin dose. Not ideal because lower ribavirin doses are associated with lower SVR rates, but sometimes this is necessary. A third choice is blood transfusion if things are really bad. And fourth, sometimes it's necessary to either temporarily or permanently stop treatment. Because as you suggested, the idea is to kill the virus, not your body. And no, stopping treatment will not make the virus stronger and more resistant to future treatments. This simply isn't the case.
But again, you first have to bring all this to your doctor's attention right away and at a minimum get your hemoglobin tested. You also didn't mention anything about having a viral load test. Have you had one since you started treatment? If not, I would ask for one now to see if the drugs are working or not.
While difficult to determine the severity of someone's symptons over the internet and without blood tests -- potentially they sound quite serious and it's not something you want to toughen out without a full medical OK based on more blood tests and a physical examination. Things can get very serious.
All the best,
-- Jim
Oops - I did mean to remind you to keep the fluids up and make sure you eat as much and as often as you can. Best wishes..
Someone told me that 'it's okay to stay in bed all day'; at the beginning of tx I sometimes stayed in bed for most of the day.
Ali, it's lovely to hear that you've made it to week 9. This can be really gruelling treatment; some people are bed ridden, others aren't. Personally, at week 10, things started to get just a little better for and I understand what people mean when they say up to the first 3 months are the hardest. Keep taking baby steps; prayers are with you.
Ali, it's lovely to hear that you've made it to week 9. This can be really gruelling treatment; some people are bed ridden, others aren't. Personally, at week 10, things started to get just a little better for and I understand what people mean when they say up to the first 3 months are the hardest. Keep taking baby steps; prayers are with you.
i m trying to my best to complete the course but when things get worst i loose heart. i want to get rid of this virus but weakness is main hurdle. unfortunately im much weak. Morning time is always bad for me and sometimes my hands start shivering. Thank you very much for everything. i will try to my best.
Dr did not advised to check my genotype. he said in pakistan g3 is common.
Never got biopsy.
it is my first time tx
hgb was 12.2 on 08.11.08 and wbc were normal at that time.
Never got biopsy.
it is my first time tx
hgb was 12.2 on 08.11.08 and wbc were normal at that time.
I have heared that stopping tx CAN make Hep-c virus more stronger and more resistant to the medication. I still thinks you should go for complete tx as what you are feeling is same as felt by majority of us and life gets better after 10-12 weeks usually. get you PCR test , i wish you will be undetected or your VL will be so low and this thing will motivate you. Improve your diet and take rest
BTW whats your latest blood count, infact dont mind but i feel like your problem is more psychological then physical. YOU CAN KILL THESE ALIENS, BELIVE ME.
BTW whats your latest blood count, infact dont mind but i feel like your problem is more psychological then physical. YOU CAN KILL THESE ALIENS, BELIVE ME.
... and change your life according to that.
P.S. Where you able to get leave from work?
P.S. Where you able to get leave from work?
As you know, I have been feeling more or less like you most of my tx, except I do not have the difficulty breathing.
Since all my blood counts are still in the normal range, my doctor again told me yesterday, that there is nothing one can do. Some of us just react stronger to the meds, than others, without it showing in our blood counts.
I have accepted that I might be like this until EOT (end of treatment), if I want to get rid of this virus, I will just have to continue living in my bed. Lying down helps it a lot, as you won't feel as dizzy. Often one is dizzy, even when lying down, but at least you cannot fall. So take all kind of precautions and change your live according to that. Sometimes, you might need to crawl on all four to get around.
Have a big jar of water next to your bed and something to nibble on. Unfortunately you do not have internet at home, if not a lap top in bed works great. Get some good books and watch some funny movies. Make your bedroom as comfortable as you can. And have your living room as an alternative, so you don't get bored.
Soon you will reach the 12 week mark and then you will be doing your count down. Really, just try to take a day at a time and in a few weeks you will see that there will be a light at the end of the tunnel. You do not want to do this again in the future, you want to get rid of it this time!!!
We're here to support you my friend.
Hugs, Marcia
Since all my blood counts are still in the normal range, my doctor again told me yesterday, that there is nothing one can do. Some of us just react stronger to the meds, than others, without it showing in our blood counts.
I have accepted that I might be like this until EOT (end of treatment), if I want to get rid of this virus, I will just have to continue living in my bed. Lying down helps it a lot, as you won't feel as dizzy. Often one is dizzy, even when lying down, but at least you cannot fall. So take all kind of precautions and change your live according to that. Sometimes, you might need to crawl on all four to get around.
Have a big jar of water next to your bed and something to nibble on. Unfortunately you do not have internet at home, if not a lap top in bed works great. Get some good books and watch some funny movies. Make your bedroom as comfortable as you can. And have your living room as an alternative, so you don't get bored.
Soon you will reach the 12 week mark and then you will be doing your count down. Really, just try to take a day at a time and in a few weeks you will see that there will be a light at the end of the tunnel. You do not want to do this again in the future, you want to get rid of it this time!!!
We're here to support you my friend.
Hugs, Marcia
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