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233616 tn?1312790796

help-being cut off of treatment

starting with a 1.4 mil VL

at 4 wks down to 300,000

at 6 wk back up to 700,000

just got the call.

thinking of continuing tx until I can get in to see Benner in Jan.
but med will run out late Dec.

suggestions for this and/or things to ask for.

please help anyone.
Mary B
54 Responses
Avatar universal
Mary,

Very sorry about the news.

I confess to not remembering any of your stats, or even if this is your first time treating, so I will limit my comments in a very general sense.

Both your week 4 and week 7 response are less than one log, which basically is no response at all, given the variances of these tests. Therefore it's uderstandable -- again depending on individual stats -- that a doctor might pull a patient off treatment to spare a non-responder the treatment drugs.

Curious if they took any action at week 4? With less than a one-log response at week 4, I would think that something would have been changed in your treatment to accelerate the viral drop. For example, if you weren't too anemic, then more ribavirn might be added, and I'm assuming you're on weight-based riba already. Or maybe even the peg dose might be increased, possibly even the type of peg changed. Bottom line is that some thinking should have gone into why is Mary not responding as fast as we like, and what can we do to make her respond faster. Did you have such conversations with your doctor? Is your doctor a liver specialist (hepatologist) or a GI?

Now your're probably around week 10 or so, and not sure if a change will be in time -- unless of course you have significant liver damage, are willing to treat 72 weeks, etc, with a diminished chance of SVR.  In that case, maybe it might be worth changing something to get you UND (or as near to UND as possible) by week 12.

Again,hard to know what to advise based on not knowing the stats -- but if it were me, I'd want more info than "the call". I'd want to speak to my doctor and go over my options and I would not want to wait until January.

Again, sorry about the news.

-- Jim
233616 tn?1312790796
thanks for the quick response JIm, ,,,,,,,thank you, and yes, yours was the one "club" on here I was hoping not to join. I've been bedridden most of the last 4 years (partly from the brain/pituitary stuff)
and with swollen liver/spleen the whole last 12 months...and yet they still said today, you aren't sick enough to get on a transplant list.

,,,,,,.>>>>>>>>>>>Curious if they took any action at week 4? With less than a one-log response at week 4,

I wonderered myself why they didn't up the riba, but they had said you are doing fine,
but I didn't pursue it, figuring the guys an expert....and figuring what I learned in here was true, not being a quick responder didn't mean if I droped 1 log in 4 wk, I couldn't drop another logat least in 8 more weeks.

I am at the 9th shot now. only one day past 8 wk. treating.

my VL was a log drop, Doctor Benner is supposedly one of the best here abouts, but he's very business like, in and out of every visit in 10 minutes.

Yes, "to the if it were me" I already asked to stay on tx until I got seen or have doses uped meanwhile. the nurse practioner kinda nixed those, saying they see no improvement with Interfergen
except for worse sides, no clearing. Same with Riba, although I doubt this, after reading in here.

I'M NOT YELLING HERE, JUST WANTING EXTRA ATTENTION TO THIS NEXT DETAIL:

my one concern is, could the Human Growth Hormone I'm taking for my pituitary dysfunction also be growing the virus??????

HR HR HR HR HRRRR    if you see this, I've already asked all 4 of my docs and no one can give me an answer as to whether something that helps healthy calls to repair and reproduce could also help a human virus to grow stronger as well.

talk about a dilemna.  I will post my stats on my profile soon so you can see them.

thanks again.
Avatar universal
MB: ut they had said you are doing fine,
but I didn't pursue it, figuring the guys an expert.
--------------------------------------------------
Look, I'm no doctor, but something is wrong if a doctor tells you things are "fine" with less than a one-log drop at week 4. Things were not fine, and either your medical team was too busy to notice, or you maybe have the wrong team. Again, less than a one-log drop at this point means you are not responding.

MB: yours was the one "club" on here I was hoping not to join.
------------
Not sure the meaning. I treated 54 weeks, was RVR, and am SVR for over a year now.
144210 tn?1273092382
Sorry for the news, that just sucks. God Bless.
233616 tn?1312790796
OH OK, sorry, for some reason, with all the reading, and remembering your "afterwards" side effects etc. etc. somehow
I thought you were a non-responder, never saw your original stats either........well glad to hear otherwise for you!!!!

and kudos for staying in here and helping folks.!!!!!!!!!!.
86075 tn?1238118691
just soooo sorry to hear of this...youre one of the most informed too...course, sound like a broken record but it is true, these new cocktails are on the horizon, which will give you a much better chance, all the best to you, youre a strong one, I can tell...you'll get past this...
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