2 week blood results

[jelise]

I just called the nurse about my 2 week blood results (they came in on the 19th, but the doc apparently hasn't even looked at them yet) and am really getting convinced that I need to be on more riba.  Not only do I feel fine at 3 weeks into treatment, but my hemoglobin only went down from 14.1 to 13.3.  I am very juicy - like 250 pounds - and am only on 1200 mg.  From the suggestions I've seen on this forum (15.5mg/kg) I should be on more like 1800.  I spoke with the nurse about it and she says he has never put anyone on more than 1200 (like it says to on the medicine itself), and that people heavier than myself have gone SVR on 1200/day.  I am not convinced that this dose gives me the best chances.  I made an appointment for next Thursday (when my 4 week results should be in) so i can try to convince the doc to at least put me on 1400. If that doesn't make me too sick, in two weeks I'll push for 1600 ha-ha.

Does anyone know if there is a reason he cannot raise the dosage of riba above 1200?  Is it too against the prescription protocol or something?  How do some of you get so much riba?  Is it only by participating in studies or something? If it is because insurance will not cover more than the "recommended" dosage, I will pay out-of-pocket for the extra.

Lots of questions I know, but I really appreciate all the input I get here =D

[Bill1954]

I see you’re up to monkey business already :o). As far as feeling good still, you have plenty of time left to feel crummy. The standard of care drives doctor’s treatment decisions; and insurance companies usually follow suit as well. One think you can do is to present peer reviewed, published studies to your doctor, in hopes they might sway his position. Same with insurance companies, although I believe they are becoming more flexible in this regard lately.

You might want to review your viral response; if you are responding rapidly at two weeks, you might not want to increase anything. I had a poor initial response in my first treatment, and my doctor was very aggressive. I used the ’05 Lindahl studies to support high-dose ribavirin; my doc not only approved my increase, but began increasing riba on *all* his patients, whenever he could justify it. In my case, he provided the extra meds out of his own cabinet no charge… my insurance denied any increase.

I tolerated ribavirin very well; I took 1800 mg/day for 36 weeks the first Tx, and 2000mg/day for 98 weeks the second time. I didn’t require epo/Procrit either time, and my Hgb never fell below 11.2 g/dL. During me last treatment, I was taking ~20.2 mg/kg/day. Remember that you are early in treatment; often, Hgb doesn’t fall off until later. If you do increase, be sure you are followed by labs very carefully; and have a plan in place for intervention if needed.

Here’s the old Lindahl abstract; if you need full test, I might have it in hard copy somewhere; let me know and I’ll fax a copy to you.

Here you go:

http://www.ncbi.nlm.nih.gov/pubmed/15660393?dopt=AbstractPlus


Good luck—

Bill

[newleaf09]

It took 6 wks for my hgbt o start dropping and I didn't drop below normal range until 9 weeks.  It actually went up by .7 at 2 wks.  I had a successful treatment and a very rough ride.  I felt nothing at all for the first month.  When it drops you will know it and feel exhausted and possibly breathless.  It will happen in a few weeks.  Don't rush it, watch the drops in your VL for an indication of response.

[copyman]

watch what you wish for. give it a few more weeks and you most likely will see the HGB start dropping. if you over do it and your numbers tank fast you could be taken off treatment. that is the last thing you want.
I felt fine until around 10 weeks then HGB dropped below 10.  Hang in there.

[jelise]

Thank you.  These answers contradict a lot of what I've read here and I am glad.  I have been really anxious the last few days thinking that I am not getting enough medicine.  I am definitely looking forward to my 4-week tests next week as it is the first time they are checking my viral load since starting treatment.  It was at 5 million the first time they checked it (about a month and a half before I started treatment) so what should I hope for at 4 weeks?  How big of a drop would be a decent sign?  

[Bill1954]

Of course, an undetectable viral load would be outstanding, and would classify you as RVR (Rapid Viral Response). This is significant enough so that in combination with low initial viral load, the E.U. qualifies it for shortened treatment protocol.

If you achieve a 2 log reduction, it will qualify for EVR (Early Viral Response); and anything in between is great. Remember that many patients achieve SVR as long as they receive a 2 log reduction by 12 weeks; this was and still is the benchmark for traditional treatment.

Best to you—

Bill

[jelise]

Thanks again - I will wait and look at my response rate (and probably ask you to look at it tee hee :) before deciding on the dosage increase.