Aa
Continue treatment or not???
HELP - this is my first time posting a question although I have been observing for some time. I will try to be succinct as it seems as though you all are so knowledgeable!!! I am 46, weigh 215lbs, @ 5ft 3inches fat as you can see. I started treatment for my Hep C Genotype 1A with a plan of going 48 weeks 1200 Riba/day and Interferon 1x/wk.
Viral load started at approx. 700,000 oh by the way my cirohsis (I can never spell that) is stage 4 of 4 - that ***** right? OK - onward...At 4 wks my viral load went down to 3,600 and I am now at week 12 and it is still detectable at 99. I am not having horrible horrible side effects but my body is not tolerating too well the meds - my WBC is 2.2, my RBC is 3.27, hemoglobin 10.6 and hematocrit 31.4 - ok so studies say to lower riba by 200mg if my hemo goes lower than 10 and hematocrit lower than 30 - I know it is a fine line but my nurse practitioner has lowered me from 1200 to 800 and ordered me to discontinue my interferon because my WBC is so low.
She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx. So as of now I can take only 800mg riba and NO interferon for at least 2 weeks until my #'s come up.
The main question and most troublesome of all is that she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return. I am having a hard time finding this information online and wondered if this is something that others are experienced with? She said she did not want to take away all hope but she is a #'s person and if it were her (which she acknowledged it is not) it would be hard to go through so many weeks of hell just to have the virus return. She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???.
Of course my question was well will it not do any good to have the virus out of my system at ALL like even for a year? OK so those of you who think like I do know that my real question was will it buy me another year to live if it is gone for even a while? She said no.
So I am considering getting a 2nd opinion but before I do that I wanted to check in with the people who are living the issue like me and who are really the most in the know. Even though I have been watching from afar your comments and conversations have boosted me far more than I could say. Thanks for any help or info you can offer.
Tracy Hopkins
Viral load started at approx. 700,000 oh by the way my cirohsis (I can never spell that) is stage 4 of 4 - that ***** right? OK - onward...At 4 wks my viral load went down to 3,600 and I am now at week 12 and it is still detectable at 99. I am not having horrible horrible side effects but my body is not tolerating too well the meds - my WBC is 2.2, my RBC is 3.27, hemoglobin 10.6 and hematocrit 31.4 - ok so studies say to lower riba by 200mg if my hemo goes lower than 10 and hematocrit lower than 30 - I know it is a fine line but my nurse practitioner has lowered me from 1200 to 800 and ordered me to discontinue my interferon because my WBC is so low.
She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx. So as of now I can take only 800mg riba and NO interferon for at least 2 weeks until my #'s come up.
The main question and most troublesome of all is that she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return. I am having a hard time finding this information online and wondered if this is something that others are experienced with? She said she did not want to take away all hope but she is a #'s person and if it were her (which she acknowledged it is not) it would be hard to go through so many weeks of hell just to have the virus return. She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???.
Of course my question was well will it not do any good to have the virus out of my system at ALL like even for a year? OK so those of you who think like I do know that my real question was will it buy me another year to live if it is gone for even a while? She said no.
So I am considering getting a 2nd opinion but before I do that I wanted to check in with the people who are living the issue like me and who are really the most in the know. Even though I have been watching from afar your comments and conversations have boosted me far more than I could say. Thanks for any help or info you can offer.
Tracy Hopkins
Tracy,
Do you have your list of questions ready for the doc on Monday? Is he a GI at least? You called him an MD. Your interim time while you wait to get in to a hepatologist is vitally important so I'd suggest you fight hard for full resumption of interferon AND ribavirin. Neither of your numbers suggest a reduction at all and particularly with Stage 4/4, the line you want to get close to is pushing for treatment success as hard as possible and that means full dose for as long as possible. If that means extra blood tests to monitor more closely then do that but reducing treatment drugs should only be done at this stage if it's clear that there is trouble. I went through most of my treatment from 15 weeks on having weekly blood tests because my numbers were always so close to the line.
I'd rather see you do at least 1/2 or 3/4 of your interferon because it will make the ribavirin effective but I understand the hesitation. If you're afraid she's going to pull your drugs completely, that's a tough call. Interferon lasts 7 days in the body and that's why the shots are 7 days apart. Right now your ribavirin is working on it's own so it's of limited effectiveness without the interferon. Whenever you resume your interferon, your next shot should be no more than 7 days after that.
As for your viral load being 99 at 12 weeks, think about this. By the time you got those results, you could already have been at 0. The same day in fact. And that would have been a good result. So you are really close to that and there is good reason to keep fighting.
At some point, you might also want to start looking into going 72 weeks instead of 48. However, get through this current challenge you've got and get your meds restored, see how your next sets of CBC's turn out, get in to your hepatologist for a 2nd opinion and hang in there.
Trish
Do you have your list of questions ready for the doc on Monday? Is he a GI at least? You called him an MD. Your interim time while you wait to get in to a hepatologist is vitally important so I'd suggest you fight hard for full resumption of interferon AND ribavirin. Neither of your numbers suggest a reduction at all and particularly with Stage 4/4, the line you want to get close to is pushing for treatment success as hard as possible and that means full dose for as long as possible. If that means extra blood tests to monitor more closely then do that but reducing treatment drugs should only be done at this stage if it's clear that there is trouble. I went through most of my treatment from 15 weeks on having weekly blood tests because my numbers were always so close to the line.
I'd rather see you do at least 1/2 or 3/4 of your interferon because it will make the ribavirin effective but I understand the hesitation. If you're afraid she's going to pull your drugs completely, that's a tough call. Interferon lasts 7 days in the body and that's why the shots are 7 days apart. Right now your ribavirin is working on it's own so it's of limited effectiveness without the interferon. Whenever you resume your interferon, your next shot should be no more than 7 days after that.
As for your viral load being 99 at 12 weeks, think about this. By the time you got those results, you could already have been at 0. The same day in fact. And that would have been a good result. So you are really close to that and there is good reason to keep fighting.
At some point, you might also want to start looking into going 72 weeks instead of 48. However, get through this current challenge you've got and get your meds restored, see how your next sets of CBC's turn out, get in to your hepatologist for a 2nd opinion and hang in there.
Trish
Glad you have a plan. It kills me that the doc is making the big bucks but you have never seen him / her. Good luck & you sound very determined.
Denise
Denise
I am humbled by all of you - thank you so much more than a few of you need a np or md behind your name. Here is my plan - best i could come up with:
1. I have increased my riba up to 1000 (know i need at least 1200 but will have procrit on monday) even though she told me to go to 800
2. Have an appt with md (who I have NEVER seen) as i said when i started this treatment i never saw a dr - only the np.
3. Taking first neupa shot tonight friday
4. Have only skipped 1 shot of interferon (i know that is less than ideal) but with a cbc draw first thing monday am and an appt monday pm then he should get prelim cbc results by tuesday am in time for him to hopefully feel comfortable letting me take my shot on my normal day (tuesday) which will keep it at only 1 missed dose. I know a lot of you advocated for me to do the shot anyway but besides not wanting to get in a situation where they tell me i was irresponsible for doing that against medical advice and because of that they would not refill - I had this thing in the back of my head that what if it did tank me and all i got was a big fat i told you so ha ha. Mostly the first reason though.
5. Will have referral done to uw requested on an emergency basis (talked to guy at uw and he said he would try to rush through) so hopefully i will be delivered into the hands of a good hepatologist within 2 weeks.
You all have armed me to the teeth - i am not a shrinking violet and usually have no problem pushing my cause with dr that I am paying - i think her combative nature and defeatist tone caught me by surprise. Because i was not armed with all the information you all have given me i was forced to comply but it will NOT happen again.
Maybe it is that woman thing of taking care of everyone else first as I have gone through similar stuff with my mom and ABSOLUTELY knew that I had to be almost more knowledgeable than the docs and was - that way i knew i could force them to give her the best care. Why I have not become knowledgeable yet on myself is a mystery to me but in the process of being remedied.
Thanks again to you all. Especially info on insulin resistance. I did have a fasting sugar done a while back which was normal - i had had problems with low blood sugar mostly related to not eating very much so that would be hypoglycemic but that has been addressed with my diet. I will look into the insulin resistance information thanks.
1. I have increased my riba up to 1000 (know i need at least 1200 but will have procrit on monday) even though she told me to go to 800
2. Have an appt with md (who I have NEVER seen) as i said when i started this treatment i never saw a dr - only the np.
3. Taking first neupa shot tonight friday
4. Have only skipped 1 shot of interferon (i know that is less than ideal) but with a cbc draw first thing monday am and an appt monday pm then he should get prelim cbc results by tuesday am in time for him to hopefully feel comfortable letting me take my shot on my normal day (tuesday) which will keep it at only 1 missed dose. I know a lot of you advocated for me to do the shot anyway but besides not wanting to get in a situation where they tell me i was irresponsible for doing that against medical advice and because of that they would not refill - I had this thing in the back of my head that what if it did tank me and all i got was a big fat i told you so ha ha. Mostly the first reason though.
5. Will have referral done to uw requested on an emergency basis (talked to guy at uw and he said he would try to rush through) so hopefully i will be delivered into the hands of a good hepatologist within 2 weeks.
You all have armed me to the teeth - i am not a shrinking violet and usually have no problem pushing my cause with dr that I am paying - i think her combative nature and defeatist tone caught me by surprise. Because i was not armed with all the information you all have given me i was forced to comply but it will NOT happen again.
Maybe it is that woman thing of taking care of everyone else first as I have gone through similar stuff with my mom and ABSOLUTELY knew that I had to be almost more knowledgeable than the docs and was - that way i knew i could force them to give her the best care. Why I have not become knowledgeable yet on myself is a mystery to me but in the process of being remedied.
Thanks again to you all. Especially info on insulin resistance. I did have a fasting sugar done a while back which was normal - i had had problems with low blood sugar mostly related to not eating very much so that would be hypoglycemic but that has been addressed with my diet. I will look into the insulin resistance information thanks.
Without reading through the whole thread here, I think it’s important to point out that cirrhosis is reversible to a point; as long as the patient remains compensated (CTP class 1). When evidence of decompensation is present, I believe the patient will require a transplant at some point; this also marks the distinction of ESLD. This might have been noted above; I skimmed the thread, and didn’t notice it, though.
Tracy, it looks like you’re on top of things, and getting excellent advice here. Welcome to the discussion group; glad you found your way here. Take care, and good luck to you--
Bill
Tracy, it looks like you’re on top of things, and getting excellent advice here. Welcome to the discussion group; glad you found your way here. Take care, and good luck to you--
Bill
>>>>>>>No it's just patently not true in any way shape or form.
Too bad Nurse Ratchet doesn't read studies or obviously anything new on HCV.
wow, expecting a practicing professional to keep up with current research, that really would be... "asking for the moon AND the stars"... there Betty D.!!
you are too funny!!
You ever wonder how many people have gone home to die based on the old research in the last 2 years,... since all the new contrainan study info came out....how do they sleep at night.
mb
Too bad Nurse Ratchet doesn't read studies or obviously anything new on HCV.
wow, expecting a practicing professional to keep up with current research, that really would be... "asking for the moon AND the stars"... there Betty D.!!
you are too funny!!
You ever wonder how many people have gone home to die based on the old research in the last 2 years,... since all the new contrainan study info came out....how do they sleep at night.
mb
"She certainly didn't have cirrhosis and she wasn't obsese. point being that the fact her dose reduction didn't hurt her SVR really has little to do with your case. "
Before anybody gets too far off in left field thinking that I was suggesting that Tracy doesn't have to worry about a dosage reduction because I had one and SVR'd....my POINT was more to the fact that even though treatment choices have to be made, it ain't over til it's over and it can still work out.
I wasn't suggesting her case was anything at all like mine or that we're in the same boat, OTHER than having to make tough treatment choices and hoping for the best regardless and sometimes it still works out, even when you get pulled from treatment at 34 weeks. That's it, that's all.
Simply a statement to keep the faith and don't let it get you down and hang in there.
Before anybody gets too far off in left field thinking that I was suggesting that Tracy doesn't have to worry about a dosage reduction because I had one and SVR'd....my POINT was more to the fact that even though treatment choices have to be made, it ain't over til it's over and it can still work out.
I wasn't suggesting her case was anything at all like mine or that we're in the same boat, OTHER than having to make tough treatment choices and hoping for the best regardless and sometimes it still works out, even when you get pulled from treatment at 34 weeks. That's it, that's all.
Simply a statement to keep the faith and don't let it get you down and hang in there.
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