Thanks for that. It looks better that way :)
Only took two little pinkies tonight, the reduction has begun...
74 kg was my tx weight and I got 1000 mg riba. So I wouldn't fret too much about a dose reduction.
1000 mg / 74 kg = 13.51 mg/kg
1200 mg / 74 kg = 16.21 mg/kg
NB: 'they' in the 5th paragraph means Hb levels... Wish there was a preview function...
Thank you, thank you all for your excellent feedback. I sure am wrestling with this as my gut instinct is also not to dose to reduce BUT, as CS points out, a reduction is preferable to cessation. On top of all this, I am having a typical tx tuesday (we're day ahead over here) and suffering from brain fog and the desire to just forget all about it.
It has been my experience that my hb levels have jumped around a bit in the past and have managed to stabilize themselves without any change in dosage. I recently had a .7 increase in just 10 days. I'm also aware there are many factors, such as dehydration, that have a part to play.
Two months ago I was at 10.1 and that was perfectly acceptable, and yet here we are at 9.7, a .4 decrease, and all of a sudden it's alarm bells! But I suspect it's the fact I dropped from 10.8 to 9.7 in a few weeks that is bothering them. They like things to be 'stable'...
I am also thinking about increased riba absorption vs the actual amount of riba taken or ingested. I mean, it doesn't matter how much Riba one is taking if it is not being properly metabolized by the body, right? And although I hate to say this, the drop has coincided with me amping up my fat intake to ramp up the riba absorption.
Does it follow then that if I continue at full dose but lower my fat intake I will affect my serum levels and (hopefully) they will rise? Or do I adhere to the reduction and ramp up the fat again to keep up the serum levels. It all seems a little imprecise and unquantifiable and that's just not medical science, right?! And does all this matter or am I just driving myself crazy.. I just wanted it to be plain sailing on the home stretch!
I am thinking about 'saving' the riba, if I go the reduction way, and then adding them in to the last month of tx. I would wait till after my week 44 blood results when there will be no other blood draws until EOT.
My reduction is due to start tonight so I have a few more hours to come to my decision...
I'm surprised you all can't hear my mental gymnastics from way over there!
Btw, Deb, on 1200, borderline weight based as I am 74 kgs. Also a G3 so as far as my nurse is concerned I am on a hefty Riba dose for a G3. I think she forgets the standard dosage didn't work last time!
Thanks for your support, guys, you are absolutely fantastic...
Epi,
I'm just behind you, doing 40 tonight. Your thread made me wonder what I'd do if my nurse called today and told me to reduce by 200.
I'd have to weigh:
1) my gut reaction of not wanting to reduce because I stubbornly don't want to reduce
2) with good evidence that reducing riba a bit at this stage is insignificant
3) with wanting to not end up in the emergency
My spontaneous reaction would be to recklessly full dose. I'm not recommending this, though, because it could be just that, too risky.
My HGB went from16 to 10 but never below ten. I simply don't know if you can or should full dose against your nurse's advice. Below 10 was my nurse's red flag. It's very interesting to hear from 'Wheremystrength is' and Zazza, whose doctors were willing to go lower.
I have access to Procrit, unlike you, but haven't needed it. I've been very impressed at how my counts fluctuate, and just when I think I'm a goner, up she rises.
All the best in your decision. I'd wrestle with this a lot because I simultaneously am eager to finish, eager to be active again, want to be SVR and don't want to end up in emergency as my finale.
Around week 35 of tx, I went down to 9.4, but my doctor did not want to reduce the riba, so he just monitored it. When I went down to a 8.6, he put me on Procrit. That made such a huge difference in my energy! My last test showed I'm up to a 9.3...better...but hopefully the next test will be even better.
I didn't want to to anything to keep me from being SVR. I now only have 4 weeks left...I can see the end...you will too. Don't give up! :-)
Linda
Hi Epiphany,
I was talking about just this to my practitioner the other day and knowing we do not have access to Procrit certainly makes it difficult. In the long run we need to follow the practitioners advice. She did say to me though that they allow the levels to drop quite significantly before dose reduction. Might pay to check out how far down you could go first? Zazza's results look encouraging. How often are they testing you now? Sorry to hear you are having problems so close to the end - hang in there....jankar
Why won't they consider putting you on procrit? Have you spoken to a hemotologist if your hep-doc won't? If you are week 41 I don't know it won't make a difference but honestly there is just no way to really know or be sure. Although my hemo was at about 10.5 on procrit it did sure help to get out of the 9s.
"Next week it would be back up again."
Correction: "Next reading it would be back up again."
My hgb hovered around 10 for the majority of my tx. Several times I went below 10 down towards 9.5, and although 10 is the cutoff for dose reduction, my doctor said nothing. Next week it would be back up again. I was on 1000 mg riba, and for a month very late in tx I even took an extra pill I had laying around every other day. These are my readings for the second half of tx:
Baseline: 15.2
Week 36: 10.1
Week 40: 10.6
Week 41: 10.5
Week 42: 9.5
Week 45: 10.5
Week 48: 10
Week 52: 9.9
Week 56: 10.1
Week 60: 10.5
Week 64: 10.3
Week 68: 9.4 (see the effect of the extra riba)
Week 72, EOT: no test taken
6 weeks post tx: 13.9
13 weeks post tx: 16.4
Not saying that you should not dose reduce, but I wouldn't have.
I've heard/read that a week or less of reduction this late in tx has no impact on SVR. Is that true?
Does anyone have experience or studies or thoughts they could share on this?
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Dose reducing for a week or 2 this late in Tx will have no Impact on your svr.
If you have to stop ribavirin that might be a different matter.
Below is what Shiffman has to say about dose reducing Riba
CS
Optimizing the Current Therapy for Chronic Hepatitis C Virus:
Peginterferon and Ribavirin Dosing and the Utility of Growth Factors
Clin Liver Dis 12 (2008) 487–505
Mitchell L. Shiffman, MD
Impact of adverse events and dose reduction
As opposed to interrupting or prematurely stopping ribavirin, which enhances breakthrough and relapse, recent data suggest that merely reducing the dose of ribavirin in response to adverse events does not significantly affect these milestones, and therefore has little impact on the SVR.
A more recent analysis has evaluated the impact of stepwise ribavirin dosing, from greater than 97% to less than 60% of the total expected cumulative dose, on virologic response and SVR [9].
It is important to note that this study included only those patients who remained on full-dose peginterferon for 48 weeks, and therefore evaluated the impact of reducing only the ribavirin dose. No significant impact of ribavirin dose on virologic response was observed.
A significant decline in SVR (from 57% to 67% to only 34%) did occur but only when the total cumulative ribavirin dose declined to less than 60%.
In fact, the medical and nursing staff at the author’s institution frequently perform a one-step (200 mg) ribavirin reduction in a patient who has developed severe fatigue even if the hemoglobin has not declined to less than 10 mg/dL. This small reduction in the ribavirin dose does not have a significant impact on the total cumulative ribavirin exposure (see Fig. 6) and, in many cases, yields significant symptomatic improvement and allows the patient to be more enthusiastic about continuing therapy.
The goal of dose reduction is to prevent the hemoglobin from decreasing so much that the patient must interrupt ribavirin dosing, which clearly increases the risks of breakthrough and relapse.