To Pre-load or not to Pre-load

[Mikkimoe]

Hi all - I am finally ready for "Blast Off" (start tx next Monday) and have gotten some great info from everyone  - thanks so much for being here for me. I 'm sure I'll have a ton more questions but I I'll start with these two. I have heard from a few posters that you should pre-load with the riba a week before the Peg. My doc didn't mention this so thought I'd throw it out there - should I?

Also on suppliments - my doc said they are all OK but I don't want to be counter productive. (I also have RA and am on Enbrel and Prednisone - I'll get to the meds on another post)

I take the following suppliments (slit up during the day)
Protien drink with all aminos etc
Flax seed
Calcium - mag
Biotin
C (500) - E (400) combo
Centrum Silver Multi Vit 1/2 tab
Stress Tab with the B's and Iron  1/2 cap
Q-10 (200)
Multidofilous (Acidophilus, Bifadus etc) occational Inulin powder in my drinks
Lecithin
Cranberry (500)
Hyaluronic Acid (20)

Thanks for your input,

Mikki

[Mikkimoe]

Thanks Dan - great info that I will heed. I had never heard of the pearls - although I do freeze some things if I want them to release later. Do you think that would work with the acidopholis? Since I already have several bottles on hand?

[D977]

I can comment on your vitamins a little.
The c vitamin is it ascorbic or buffered.?  Buffered is much easier on your stomach and your bowels.
The multi centrum well its good you take it but there are better ones out there
The acidophylis is ok but the acidophilys  pearls are better they are ecoteric coated and bypass the stomach released directlty into the bowels where they are needed.Otherwise the acid in your tummy will kill most of it before it reaches your bowels.
All vitamins should say standardised on them for best quality.
I like that lecithin and eat it fresh every day right out of the bag yummy :)
Golden flax seeds are the better vesion but all else looks great.
I wish you the best of luck on your journey to remission
Dan

[Mikkimoe]

Awesome!!!! You go girl!

[Trish77]

Mikki ... Week 3 VL results today!  615 IU/ml!  

Trish

[Mikkimoe]

Trish - That's great news...what log drop is that? Love the anti-riba rage story.

4-c....we are buddy teaming right? We both start on Monday - yes? Even if yours is just the riba (and the Alinia) that's OK...I may do the riba over the weekend and the Peg on Monday. I do have a horse show on Sat and Sun...think I'll be OK? (not riding in this one just spectator). We will hold hands here...I started a day by day journal on my profile to help me thru it and look back on after the brain fog. Also kinda planning on writing a paper on the auto-immune - HCV - Enbrel connection after all is said and done.

All- thanks for helping get me through this...love the feedback...your the best.

Mikki

[FlGuy]

Is that to say that you have already started your introduction to the wonderful world of riba?

[desrt]

The question in my mind has always been, are serum riba levels important enough to justify creating riba-tolerant / riba-adaptive quasispecies. This is an issue important for you as a patient and also possibly important as a general public health issue.

[Trish77]

Thanks for asking, Mikki ... yes, started tx on Feb. 29 .. Leap Year!!  I like that, I take it as a good sign. :)   PCR's are good so far.. went from 2.1mil to 1,650,000 at baseline to 300,000 at Week 1 (not quite so happy with that) and dropped to a lovely 5,050 IU/ml at Week 2!!  Sat there in the nurse's office and cried.  Wasn't expecting that.  Went and bought Tim Horton's coffees for the doc, the nurses and the clerk I like at the front desk... gave the NP a hug .. then settled down on the one hour drive home and later thought.. "who the heck was THAT???"  lol  :)  ah well.. reverse of riba rage, I guess.  Could be worse.  I know it isn't UND just yet .. but I wasn't expecting those results and I could feel an RVR as a possibility all of a sudden where before it seemed slim to none.   Now waiting for Week 3 and Week 4 ...

Will be thinking about you when you start tx .. we'll all be here for you.

Take care.

Trish

[Trish77]

I guess I could point out that I've repeatedly stated throughout this thread that my comments are my opinion only, an alternate thought and explain why I think so just as others do, what I would do if it were ME and suggested that Mikki do what is best for HER .. and that there are OTHERS throughout this thread stating THEIR opinion in response to Mikki's question...but since you decided to overlook all that and b*tch at me anyway ... would be kinda pointless.

If you took offense at the words I chose to use or how I said it .. that's YOUR problem and I'm not making it mine.

Gorgeous day out there and I think I'll just keep right on enjoying it.

You have a nice day, TeeVee.

Trish

[Forseegood]

you convinced me, (though I know youre too polite and diplomatic to try to convince anyone of anything, youre just stating your opinions) I'm predosing with Riba for a week...my doc is okay with it...

[FlGuy]

You are correct that riba is not intended as monotherapy.  As the charts (see Willing's post) show, the steady concentration of riba is not immediate. So, introducing riba some time before the introduction of Peg can possibly create a more dynamic intersection when the Peg comes rolling down the perpindicular road. If rate of response (time to VL drop and/or undetectability) is a determining factor in length of treatment duration, then it makes sense to me to take advised steps to meet, and exceed if possible, those timeframes.  A hepatologist put it to me this way; "Florida Guy, if you get undetectable by 4 weeks you do 48 weeks, if not it's 72".  It did't take me long to understand the math and the situation.  The result, in an aim to reach that mark, was doctor-suggested pre-dosing riba for a week in addition to other measures.  The other measures were, I'm sure, contributing factors but I was undectable (from about 5 mill) in two weeks.  I think thye riba had a part in saving me from an additional 6 months of misery.  As it worked out I did approach anemia, but I think it was from the all the riba, not just the first week.
The jury is still out for me - well they are back in the jury box and the foreperson has the verdict in her hand (I get results tomorrow) but I think I got it this time.  I would hope that patients talk to their docs about enhancing opportunities and that doc explore some of these possibilities as well.

[TeeVee36]

My doctor explained to me that taking the Riba by itself wasn't good and that all it would do is make me anemic.  That the tx is a combination of both Interferon and Ribavirin.  I believe in the Ribavirin insert it says that you should not be taking it alone only for use in combination therapy with interon.

Trish77 - when did you become a doctor?

[Mikkimoe]

got it - thanks

[FlGuy]

Ribasphere is a brand name for ribavirin, as is the name Copegus.  It's all riba.  It goes by other names as well.  If I listed those other things that I call it you would see a series of asterisks separated by commas.

[Mikkimoe]

You guys are great - thanks.

Allan - good site you created. I may have to do the same to track this journey of autoimmune and Hep C.What is the difference in Ribasphere and Ribavirin?

Trish - good points - how did your first PCR's turn out? Did you start tx in Feb?

[Trish77]

Willing, an alternate  thought on that. The reason for pre-loading with Riba is not the anti-hcv effect of riba as a mono-therapy.  It's to allow the body to absorb the riba and get to that two weeks of full efficacy for when one starts the INF for maximum synergy.  If anemia is going to happen due to the riba, it will simply happen two weeks earlier, would it not?  I don't think the two weeks of pre-loading is going to be that much more of an anemia risk but it might allow a good start into SOC on day 1.

Again, that is my opinion only and my current thought on the subject.

Whatever makes sense to you, Mikki.  Lots of thoughts and opinions to go around when one asks for them and in the end, it's what makes sense to you.

Good luck with your treatment and I hope you have an easy time of it with not too many complications.  

Take care.

Trish

[Mikkimoe]

Good points- thanks...as I am already in poor health and have been anemic in the past without tx... i think I will follow the basic SOC and just pray I can make it to at least 4 months.

[willing]

I'm a big fan of soc lead-in for PIs, but, with respect to riba pre-loading, it's helpful to remember that riba on its own has been repeatedly shown to have almost no anti-hcv effect. It takes the  riba/ifn combo to make things happen. Thus the major argument for doing this would be to stabilize the body's steady-state concentration of rbv before adding the ifn; beyond that, I think you're just signing up for more misery and anemia.

Figure 1 of the following paper
http://jvi.asm.org/cgi/content/full/81/14/7732
gives an idea of how long it takes rbv concentration to reach steady-state; two weeks seems plenty. Lindhal's dissertation, which zazza posted a while back ( I didn't save the link) should provide lots more similar information.

[Mikkimoe]

Good info thanks much.

I see the doc Friday...they are actually making me take a HCV treatment class before I can start. (Gee UCI - University of Cal - classes - go figure). At least there will be a large group to discuss it with.

The only issue I have with it is how it effects your baseline and in my case the 2 week and 4 week PCR.

Since I am on bio's for the RA (Enbrel) and am soooo sick and symptomatic I may only be able to do 4 months of tx (am 2b). So it will be very good to know if I was UND at 2 or 4 weeks.

CMCH - I have lots of info on the RA connection. I have had severe RA for 14 yrs - 15 surgeries...but since I have been chronic the last yr my pain and destruction has doubled. I can't help thinking it will have to get a little better after this virus is gone. There is a 5 percent chance that the tx will throw you into autoimmune syndrome...(major constant unforgiving pain)....at which point you will have to stop tx - other wise the odds are good you will feel worse during tx but bearable...I'm on permanent disability so will struggle through it.

Did they test you for cryoglobins? mine was neg...to bad. This indicates the arthralgia (arthritis symptoms) that is a hepta manifestation that brings the joint pain with the HCV.
I have tons more I'll share later....but bottom line is it is best to treat.

FIguy - that's my servant who spoils me to death...do you like my blaze?

[Deb_c430]

Good luck Mikkie! I won't be around much next week,  but will keep you in my thoughts!

Best wishes and good luck!

[nygirl7]

Mikki

This is really just a new idea that's floating about I don't think there have really been any big proof positive studies done either way so for every yes you get you'lll probably get a no.

I am a big believer in the ribavirin and how crucial it is to our success.  However, it has a few really really big problems associated with it that are drawbacks (like the anemia and the rash). In truth while it makes good sense to me to try and build a good serum level up BEFORE starting the Interferon.........the only thing that worries me is that when you first start the interferon you want a great big BANG ZOOM kick to the gut of the virus.  you want to start hard and heavy and I don't know if pre-loading has any signficance in a decline anyhow.

I guess what I"m trying to say is I don't really know but it's something TALK OVER BOTH SIDES WITH YOUR DOCTOR!  Serious.  We are just patients witha  little bit more knowledge than the rest, nothing more.

Make sure that you do get the weight based riba and DONT forget to take it and ALWAYS take it with fat or what I did (breakfast at 7am dinner at 7pm).  It's CRUCIAL to your success that you don't underdose or reduce dosage.

The rest...........I don't think anybody is really "sure" but of the above two things we can all agree.

Good luck!

[FlGuy]

If it was me, I'd pre-dose the riba for at leaset a week. But, keep an eye on the refill schedule down the road to make sure you don't have a riba gap later.

By the way, who is the cutie standing next to you holding the watermelon?

[gauf]

Yes preload the riba!  At least for 2 weeks. Remember to take it with fat!

[Trish77]

Well, just from reading things on the forums - wiser person's insights and experiences, reading studies and drawing conclusions from those things... pretty sure Jim (jmjm) has things to say on that and after awhile of reading certain things you form an opinion and that's all that is from me.. an opinion.  When ribavirin takes awhile to settle into and out of your body .. pre-dosing with Riba makes sense to me to get full synergism with INF as quickly as possible instead of a couple or more weeks into SOC.  Sort of like the warm-up a runner does before doing the actual race...

Trish