Aa
it is today
Hello my dear friends! I am starting treatment in 10 minutes, thank you for all of your support, I might be not a real candidate for actual treatment yet( low viral load, normal LFT, stage 1 fibrosis, I am 30 years old, looking forward for better future, and I made up my mind and about to begin journey with you, wish me luck. I wish you all the best as well.
Thank you everybody for such a worm responses, for last 2-3 weeks I have been waking up and going to bed with this forum, I am glad that you all helping me to go through this difficult time, I hope some day we all be able to celebrate our victory!
welcome aboard, suiting up is half the battle, now just cinch up that saddle and hop up.
Some trails are smoother than others but as long as you have support, courage, and are sure footed you'll be alright.
the first day after shot is the hardest for me, do that shot when you don't work,
stick around and live and learn, it's all good. Just sometimes we all have hard choices.
Hope you do excellent with treatment.
Some trails are smoother than others but as long as you have support, courage, and are sure footed you'll be alright.
the first day after shot is the hardest for me, do that shot when you don't work,
stick around and live and learn, it's all good. Just sometimes we all have hard choices.
Hope you do excellent with treatment.
Whatever works, works, and I've seen others with similar strategies -- FLGuy comes to mind.
That said, if you have the energy -- and not sure how you'lll find it given your hgb drop -- try and and get a back up hepatologist in place. Just in case. I had a hepatologist with the "one stop shopping" approach and found it worked very well.
Sometimes it's just easier to find a doc that does it right as opposed to doing a lot of the work yourself.
Good luck with the vira load test, but most don't give them until week 4. Still, can't hurt to ask. One that goes down to 10 IU/ml is very sensitive so that's good.
-- Jim
That said, if you have the energy -- and not sure how you'lll find it given your hgb drop -- try and and get a back up hepatologist in place. Just in case. I had a hepatologist with the "one stop shopping" approach and found it worked very well.
Sometimes it's just easier to find a doc that does it right as opposed to doing a lot of the work yourself.
Good luck with the vira load test, but most don't give them until week 4. Still, can't hurt to ask. One that goes down to 10 IU/ml is very sensitive so that's good.
-- Jim
I believe the Labcorp PCR quant that goes down to <2/<5 is the 'Quantasure'.
iu/copies or copies/iu ?
One of these days I'll remember which is which.
iu/copies or copies/iu ?
One of these days I'll remember which is which.
Forgot to get back to you on the viral load thingie myself. I didn't get tested for viral load at wk two as hoped, but for enzymes etc and cbc, etc etc. Really minimal cbc in my case they said, so they quickly got me set up with the hematologist. I may ask HIM to do viral loads weekly along with the other testing. Anyway, my doc's office does my first at four weeks and it is sensitive to 10 iu's.
I am loathe to switch to another primary hepc treatment provider as I do not wish to slow down my treatment on what I see as my golden shot for this tx (given my acute status and early intervention with the disease). I'd prefer to box him in with ancillary professional providers and fit additional testing in with them or my primary if need be. I can bring additional testing to him if I need to do so. In many ways, I have managed my health care like this for a while. I know it seems quite odd, but its worked for me for a number of years. Call it a system of checks and balances if you will. Kind of like the government. Oh wait... that actually hasn't always worked quite so well has it? ;oX
I am loathe to switch to another primary hepc treatment provider as I do not wish to slow down my treatment on what I see as my golden shot for this tx (given my acute status and early intervention with the disease). I'd prefer to box him in with ancillary professional providers and fit additional testing in with them or my primary if need be. I can bring additional testing to him if I need to do so. In many ways, I have managed my health care like this for a while. I know it seems quite odd, but its worked for me for a number of years. Call it a system of checks and balances if you will. Kind of like the government. Oh wait... that actually hasn't always worked quite so well has it? ;oX
Hi Nency,
Sorry you're not feeling great, but the treatment drugs are often like that. Still, you might want to update your medical team on your fever and symptons.
As to viral load tests, different doctors have different protocols.
A few here, including myself, had weekly viral load tests starting from week 1. This IMO is ideal but a lot of doctors won't give you the test this early. Still, I see no harm asking.
Then there's a group that had their first viral load test at week 4. And lastly, some doctors wait until week 12 for the first viral load test. The week 12 test used to be the standard, but studies suggest that everyone should minimally have a viral load test at week 4.
As to which test, the one I took early in treatment was "Heptimax" by Quest Diagnositic Laboratories. It goes down to 5 IU/ml which is very sensitive. LabCorp also has a couple of very sensitive tests but I don't have the names handy.
Best day to take the viral load test is the day before your injection day, or the day of your injection but before the injection. My injection day was Wednesday, so I always had blood drawn for my viral load tests on Tuesday.
Using this system, you draw blood for the week 1 viral load test the day before your second shot. You draw blood for the week 4 viral load test the day before your fifth shot, etc, etc.
Hang in there and do let us know things go.
All the best,
-- Jim
Sorry you're not feeling great, but the treatment drugs are often like that. Still, you might want to update your medical team on your fever and symptons.
As to viral load tests, different doctors have different protocols.
A few here, including myself, had weekly viral load tests starting from week 1. This IMO is ideal but a lot of doctors won't give you the test this early. Still, I see no harm asking.
Then there's a group that had their first viral load test at week 4. And lastly, some doctors wait until week 12 for the first viral load test. The week 12 test used to be the standard, but studies suggest that everyone should minimally have a viral load test at week 4.
As to which test, the one I took early in treatment was "Heptimax" by Quest Diagnositic Laboratories. It goes down to 5 IU/ml which is very sensitive. LabCorp also has a couple of very sensitive tests but I don't have the names handy.
Best day to take the viral load test is the day before your injection day, or the day of your injection but before the injection. My injection day was Wednesday, so I always had blood drawn for my viral load tests on Tuesday.
Using this system, you draw blood for the week 1 viral load test the day before your second shot. You draw blood for the week 4 viral load test the day before your fifth shot, etc, etc.
Hang in there and do let us know things go.
All the best,
-- Jim
oh sorry, didn't see your post about temp and such. Yeah. I guess the tx just took a little longer getting started on you. Good news is its definitely getting into your system. Bad news is, you feel like ****. I too have a fever every night now. It goes away during the day. Mine usually goes up to a little over 101 at night. Please be sure and check your blood work often as anemia is also an issue as you go into treatment and it can and does hit very quickly.
If you can get a pcr after one full week of treatment, that would be great. It will give you a look at your response to the meds and that could be useful in treatment decisions later. There are several different viral loads tests that can count down to 50, 10, 5 or 2 iu's per ml of blood. The more sensitive the better. At least that's what my wife always says to me. If you go to a Quest lab, for example, 'Heptimax' is a good one
Just count yourself blessed with the no/low sides, and good luck txing!
I also read the first statement where you said you may not be a good candidate for tx since you had a low viral load and no damage, or something of that sort. In my mind that makes you an excellent candidate for treatment, someone who perhaps has a chance to hit the virus hard and heavy and SVR before real damage takes place. Others may differ with me on this, however. The most important thing now that you ARE on tx is to be as responsible as possible with your meds. Jim is one of the best sources of info on this board. Value any wisdom he happens to drop your way.
I also read the first statement where you said you may not be a good candidate for tx since you had a low viral load and no damage, or something of that sort. In my mind that makes you an excellent candidate for treatment, someone who perhaps has a chance to hit the virus hard and heavy and SVR before real damage takes place. Others may differ with me on this, however. The most important thing now that you ARE on tx is to be as responsible as possible with your meds. Jim is one of the best sources of info on this board. Value any wisdom he happens to drop your way.
Thank you for your support and responses, today is a 4Th day, I have been having temp102 for 24 hours, missed my work and very weak, but I believe it is all for good. On Thursday my first blood work, should I check my VL, and what is the most sensitive test to detect if VL low, because mine was low from the beginning?
Thank you, Nency
.
Thank you, Nency
.
No, it doesn't mean your're not responding.
Everyone reacts differently to the drugs, especially the first week. I didn't have much of a reaction in the first two days, and ended up with an RVR (rapid viral response). My side effects started around week 2, but again, everyone is different and maybe you will luck out.
Best -- and only accurate -- way to find out if you're responding is to do early and frequent viral load tests.
The week 4 viral load test is becoming more standard, at least with the more cutting-edge doctors. So, if you're not scheduled for a week 4 viral load test, ask your doctor for one -- and ask for a sensiive one -- preferably down to 5-10 IU/ml. Test best taken the day before your fifth injection. Your medical team also should be scheduling other blood tests, including CBC's (complete blood count) during this period as well.
Don't leave these blood tests up to guesswork --if you haven't already, make sure you inquire IN ADVANCE, exactly WHAT tests they will give you and WHEN they will give the tests.
All the best,
-- Jim
Everyone reacts differently to the drugs, especially the first week. I didn't have much of a reaction in the first two days, and ended up with an RVR (rapid viral response). My side effects started around week 2, but again, everyone is different and maybe you will luck out.
Best -- and only accurate -- way to find out if you're responding is to do early and frequent viral load tests.
The week 4 viral load test is becoming more standard, at least with the more cutting-edge doctors. So, if you're not scheduled for a week 4 viral load test, ask your doctor for one -- and ask for a sensiive one -- preferably down to 5-10 IU/ml. Test best taken the day before your fifth injection. Your medical team also should be scheduling other blood tests, including CBC's (complete blood count) during this period as well.
Don't leave these blood tests up to guesswork --if you haven't already, make sure you inquire IN ADVANCE, exactly WHAT tests they will give you and WHEN they will give the tests.
All the best,
-- Jim
Honestly I do not know what is going on, so far no symptoms day 2 after begining of the tx, weird!The only thing i HAD IS SLIGHT, VERY SLIGHT muscle ache but nothing disturbing, instead I feel more like exited and with a good mood! I am afraid my body not responding what do you thing?
so how are you doing ?
how was the first night?
how was the first night?
Thank you for your support, 14 hours after injection, trying to follow all your advices to handle the symptoms. After I found out about this forum I realized that so many good people together fighting with this disease and I that's what important! Thank you and I wish we all together will win this bottle.
welcome and good luck!
Iam praying for ya
wish you the best!
good luck. hopefully you will be one of the lucky ones that do not have any side effects that requirer help. but if you do there are great people here to help you.
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