Aa
Double dosing question
Has anyone's Dr. recommended double dosing? I was under the assumption that it was a personal choice people made and did on their own.
If I don't decide to go with a trial, my Dr. wants me to double dose peg 180 mg 2x per week and 1400-1600 copeg (weight based) for 4 weeks. If RVR at 4 weeks, continue SOC for a total of 48 weeks. If no RVR, continue double dosing until week 12, the SOC to 72 weeks.
For the record, I am a genotype 1a, stage 4 compensated, no varices, normal platelets and INR, NAFLD and cyroglobulinemia. I was just getting my head around SOC and this has got my head spinning.
Any thoughts? Pam
If I don't decide to go with a trial, my Dr. wants me to double dose peg 180 mg 2x per week and 1400-1600 copeg (weight based) for 4 weeks. If RVR at 4 weeks, continue SOC for a total of 48 weeks. If no RVR, continue double dosing until week 12, the SOC to 72 weeks.
For the record, I am a genotype 1a, stage 4 compensated, no varices, normal platelets and INR, NAFLD and cyroglobulinemia. I was just getting my head around SOC and this has got my head spinning.
Any thoughts? Pam
Yes, had the procrit talk too. Hgb is at 15.8. I hoping that being on the high side of normal will bode well for me, but don't know for sure. Need to work full time to keep the insurance running, but know that I may have to make adjustments as needed.
I'm trying to figure out if certain days are better for injections...maybe Friday/Tuesday...but my work week will be more challenging whatever the schedule with a mid-week shot, I'm thinking.
I'm trying to figure out if certain days are better for injections...maybe Friday/Tuesday...but my work week will be more challenging whatever the schedule with a mid-week shot, I'm thinking.
Good luck if / when you launch into it. It might be good to have the procrit discussion before you drop that first riba with early and frequent labs. And, see if you can cajole the hgb range to 10-11, rather than 9-10. You''ll feel better for it, especially if you need to carry on life during treatment.
desrt:
The addition of Metformin definitely looks promising! Will add this to my question list.
http://clinicaloptions.com/Hepatitis/Conference%20Coverage/AASLD%202008/Tracks/Approved%20HCV%20Agents/Capsules/LB6.aspx
FlGuy:
Your Dr. sounds like mine with the exception that if no RVR at 4 weeks, we will continue to "nuke" until 12 weeks AND extend to 72. My Riba will also be at 1400 rather than 1200.
It's great to hear about the SVR's !!
The addition of Metformin definitely looks promising! Will add this to my question list.
http://clinicaloptions.com/Hepatitis/Conference%20Coverage/AASLD%202008/Tracks/Approved%20HCV%20Agents/Capsules/LB6.aspx
FlGuy:
Your Dr. sounds like mine with the exception that if no RVR at 4 weeks, we will continue to "nuke" until 12 weeks AND extend to 72. My Riba will also be at 1400 rather than 1200.
It's great to hear about the SVR's !!
I like the plan. Similar to Spaceman who recently reported svr. Except his continuing SOC has Peg every 5 days, rather than weekly for a while.
I also did similar 2 x 180 for 4 weeks, then soc the rest. Kept the riba at 1200 all the way through, but pre-dosed it for a week before first pegs. I'm also early cirrhosis. G3, but got to und after week 2. Doc told if und by week 4, do 48 otherwise go 72. I think it's worth the nuking approach. I would have doubled longer if not undetected.
I also did similar 2 x 180 for 4 weeks, then soc the rest. Kept the riba at 1200 all the way through, but pre-dosed it for a week before first pegs. I'm also early cirrhosis. G3, but got to und after week 2. Doc told if und by week 4, do 48 otherwise go 72. I think it's worth the nuking approach. I would have doubled longer if not undetected.
Insulin sensitizers help your body use the insulin you're already producing more efficiently. With the growing evidence of Insulin Resistance and Interferon Resistance being linked, and the recent report from the SF Liver conference of Metformin adding to SVR %s (specifically for women advised to lose weight) it's worth asking your doctor.
Thanks for the feedback and info and I will check out the CCO link you suggested.
The encouraging information I hear and read about double dosing is that it IS do-able. I was made aware that one of the significant sides with the increased Riba was the rash and itching and this was more common with the generic version that most Insurance companies cover. We are pushing for the straight Copeg right off the bat.
It also is good to hear both here on a couple threads and from my team that Stage 4 compensated IS reversable in some cases..a full stage or TWO. That's huge! And makes me very hopeful!
They did not recommend predosing with riba, but would they if I asked...perhaps. I need to read more about Alinia too. I will meet with them once again to go over whatever plan I decide upon, though I am leaning heavily towards the double dosing...not as a knee jerk reaction to the Stage 4 bx, but because it is looking better and better. I already have my Peg kit and learned to give my injections yesterday. Maybe 1st of the year........
The encouraging information I hear and read about double dosing is that it IS do-able. I was made aware that one of the significant sides with the increased Riba was the rash and itching and this was more common with the generic version that most Insurance companies cover. We are pushing for the straight Copeg right off the bat.
It also is good to hear both here on a couple threads and from my team that Stage 4 compensated IS reversable in some cases..a full stage or TWO. That's huge! And makes me very hopeful!
They did not recommend predosing with riba, but would they if I asked...perhaps. I need to read more about Alinia too. I will meet with them once again to go over whatever plan I decide upon, though I am leaning heavily towards the double dosing...not as a knee jerk reaction to the Stage 4 bx, but because it is looking better and better. I already have my Peg kit and learned to give my injections yesterday. Maybe 1st of the year........
I am not on an insulin sensitizer. Don't even know what it is, but will add it to my "homework". My blood sugar has been elevated for the last year consistently at 120, along with elevated triglycerides and low HDL. Until then all were normal. BP is good at 112/68, give or take a few. (Except for this week!) Postmenopausal with the additional inches around the waist and a BMI of 26.5. Diet is good to excellent. Yoga and walks daily.
Recommendations were to increase aerobic activity, lose weight and take an additinal 1000mg fish oil daily for a total of 2000 mg. Will see what the next labs show.....
Recommendations were to increase aerobic activity, lose weight and take an additinal 1000mg fish oil daily for a total of 2000 mg. Will see what the next labs show.....
Go to the clincal care options web site and search for the Dieterich/Jensen video "Doc eye for the Hep Guy" (Search box upper right). Double-dosing is covered as a part of a re-treatment strategy but I've also seen it recommeded in general for difficult to treat cases. As a stage 4, you fall in the difficult to treat category. Free registration to the site is required but it's a great site and well worth the small effort.
Correction:
My comments on "pre-dosing" vis a vie Dr. Dieterich were related to pre-dosing ribavirin, not Alinia.
On second thought, my first NP told me she would "fight" for a Heptimax at week 12, not week 4. LOL. Again, she didn't have a clue how the insurance works which is interesting since she has a case load of hundreds of patients and I have a very major insurance carrier. Often, a very busy office will take the easy way out which is to do as little as possible. Maybe, sometime in the past, they were refused an early viral load test by such and such insurance company. So, now, instead of trying, they just take the easy way out and don't. The difference with us is that we only have one patient to focus on -- ourselves. A busy office has hundreds.
My comments on "pre-dosing" vis a vie Dr. Dieterich were related to pre-dosing ribavirin, not Alinia.
On second thought, my first NP told me she would "fight" for a Heptimax at week 12, not week 4. LOL. Again, she didn't have a clue how the insurance works which is interesting since she has a case load of hundreds of patients and I have a very major insurance carrier. Often, a very busy office will take the easy way out which is to do as little as possible. Maybe, sometime in the past, they were refused an early viral load test by such and such insurance company. So, now, instead of trying, they just take the easy way out and don't. The difference with us is that we only have one patient to focus on -- ourselves. A busy office has hundreds.
Double dosing Peg for 4-12 weeks is not as radical as some may suggest, so personally I don't see your decision as "difficult" given your stats.
Progressive liver specialists have been double-dosing for some time and a few studies suggest side effects are similar to normal single-dosing.
I double-dosed myself as a stage 3 in order to give myself the best chance of RVR which I did achieve. As a stage 4 I wouldn't even give it a second thought and in fact would demand it if treating with the SOC drugs.
Just be happy you have a doctor who apparently is up on the current literature and trends. Recently, someone with less liver damage suggested double-dosing for up to 72 weeks and many of us gave pause. That's an altogether different animal.
Is your doctor a hepatologist (liver specialist) or a GI? He/she appears to be a liver specialist but in any event the protocol seems very sound. And again, I'd bring up the discussion of pre-dosing ribavirin and Alinia. Pre-dosing doesn't have much study backing but Dr. Dieterich in our Expert Forum likes the concept. There are studies to support Alinia as an additive.
As to viral load testing, ironically most doctor's (good ones included as well as their NPs) often don't have a clue what an insurance company will cover and what it will not. My first NP told me she would "fight" for a sensitive Heptimax at week 4 but I shouldn't count on it. I ended up switiching doctors for other reasons just before starting treatment. My second doctor ordered WEEKLY viral load tests FROM WEEK 1 until I was UND. And yes, I got Heptimax when I requested it. And guess what? No problems with the insurance company at all. No fight. LOL. Fact is, most insurance companies will honor almost any blood test a doctor orders. He just has to write an rx. The only "fight" many will find is convincing their medical team to write that rx.
-- Jim
-- Jim
Progressive liver specialists have been double-dosing for some time and a few studies suggest side effects are similar to normal single-dosing.
I double-dosed myself as a stage 3 in order to give myself the best chance of RVR which I did achieve. As a stage 4 I wouldn't even give it a second thought and in fact would demand it if treating with the SOC drugs.
Just be happy you have a doctor who apparently is up on the current literature and trends. Recently, someone with less liver damage suggested double-dosing for up to 72 weeks and many of us gave pause. That's an altogether different animal.
Is your doctor a hepatologist (liver specialist) or a GI? He/she appears to be a liver specialist but in any event the protocol seems very sound. And again, I'd bring up the discussion of pre-dosing ribavirin and Alinia. Pre-dosing doesn't have much study backing but Dr. Dieterich in our Expert Forum likes the concept. There are studies to support Alinia as an additive.
As to viral load testing, ironically most doctor's (good ones included as well as their NPs) often don't have a clue what an insurance company will cover and what it will not. My first NP told me she would "fight" for a sensitive Heptimax at week 4 but I shouldn't count on it. I ended up switiching doctors for other reasons just before starting treatment. My second doctor ordered WEEKLY viral load tests FROM WEEK 1 until I was UND. And yes, I got Heptimax when I requested it. And guess what? No problems with the insurance company at all. No fight. LOL. Fact is, most insurance companies will honor almost any blood test a doctor orders. He just has to write an rx. The only "fight" many will find is convincing their medical team to write that rx.
-- Jim
-- Jim
I'm not in favor of 'shock and awe' just for the hell of it, but in your case it seems reasonable - and your doc has a good plan and use of epo/neup. Are you currently on an insulin sensitizer?
I appreciate all your comments.
The double dosing option was one I hadn't even comtemplated. Scary really, when it was brought up yesterday.
I'm leary of the meds too, Foo....always have been. But now that my options have been narrowed in scope I'm trying to muddle through what will give me the best chance at SVR. And it seems that a 4 week RVR is critical, especially for one in my shoes.
I hate the thought of this assault on my system for a year or more. But I do know that I don't want to chance it any longer waiting for the PI's now with my metabolic/prediabetes thing going on contributing to the inflammation.. Then there's the other important things that factor in positively now...I have a job that do-able and supportive, I have medical insurance and my life is drama-free.
So do I slam it for four weeks in hopes of only having to tx for 48...or go with SOC with the likelyhood of having to extend. Either way the meds are in me for a LONG time with their own set of risks.
Difficult decisions, indeed....but, then again...it's good to have options.
The double dosing option was one I hadn't even comtemplated. Scary really, when it was brought up yesterday.
I'm leary of the meds too, Foo....always have been. But now that my options have been narrowed in scope I'm trying to muddle through what will give me the best chance at SVR. And it seems that a 4 week RVR is critical, especially for one in my shoes.
I hate the thought of this assault on my system for a year or more. But I do know that I don't want to chance it any longer waiting for the PI's now with my metabolic/prediabetes thing going on contributing to the inflammation.. Then there's the other important things that factor in positively now...I have a job that do-able and supportive, I have medical insurance and my life is drama-free.
So do I slam it for four weeks in hopes of only having to tx for 48...or go with SOC with the likelyhood of having to extend. Either way the meds are in me for a LONG time with their own set of risks.
Difficult decisions, indeed....but, then again...it's good to have options.
Wow, doc is willing to go nuclear it seems! Wonderful to have the choice, when so many have to fight for little tweaks to SOC. I am scared and want to do what I can to survive, but I am just so leary of the interferon. I must say, a four-week course of shock and awe seems to be a novel approach. The pre-load of riba, then hit it with the peg!
Do you remember DoubleDose? He still posts occasionally. Can't remember if he SVRd and how long he doubled up, but dig through his posts. I believe that HR chimed in on some of those threads. Maybe DD will bop in and see your thread (it should catch his eye being his name and all). Also did Gauf increase his interferon? We should come up with a new name for what he is doing.
In any trial there is still a chance you end up with SOC and no flexiblility to tweak anything. With a doc like yours, sounds like you will have an ala carte menu.
The one thing about the Boceprevir trial is that the SOC arm will be offered a rollover at W28 if they have not cleared. The rub is they don't know if it will work added that late in the game. And also the pesky mutation issue with PIs as well.
Difficult decisions.
Do you remember DoubleDose? He still posts occasionally. Can't remember if he SVRd and how long he doubled up, but dig through his posts. I believe that HR chimed in on some of those threads. Maybe DD will bop in and see your thread (it should catch his eye being his name and all). Also did Gauf increase his interferon? We should come up with a new name for what he is doing.
In any trial there is still a chance you end up with SOC and no flexiblility to tweak anything. With a doc like yours, sounds like you will have an ala carte menu.
The one thing about the Boceprevir trial is that the SOC arm will be offered a rollover at W28 if they have not cleared. The rub is they don't know if it will work added that late in the game. And also the pesky mutation issue with PIs as well.
Difficult decisions.
now that you clarified it sounds like a very good plan. sounds like you have a doc that is up to date and very aggressive. he should know about ALINIA. ask about adding ALINIA to the combo drugs. arm yourself with data to show him just in case he says no or does not know about it.
Not 100% sure but we have a member -- Andiamo -- who I believe was stage 4 and sucessfully treated with Telaprevir after several failed treatments with SOC. You might want to send him a private message. You can probably find him in this thread here:
http://www.medhelp.org/posts/show/678223 The idea with the riba was only if you didn't have much of a viral response AND if not overly anemic. Even though you are being dosed by weight, not everyone absorbs ribavirin the same way even at the same weight.
-- Jim
http://www.medhelp.org/posts/show/678223 The idea with the riba was only if you didn't have much of a viral response AND if not overly anemic. Even though you are being dosed by weight, not everyone absorbs ribavirin the same way even at the same weight.
-- Jim
I appreciate your comments. I would like to have a VL run often in those first four weeks if insurance would cover them.
I don't know if I would want to up the Riba anymore. Per her recommendations 1400-1600 weight based with me at 1400.
Rescue drugs, yes. They want to keep my hgb at 9-10, WBC's no lower than 2.0, Platelets 2400 (gulp) and ANC greater than .4. Neupogen and Procrit as needed to stay the course.
I don't know if I would want to up the Riba anymore. Per her recommendations 1400-1600 weight based with me at 1400.
Rescue drugs, yes. They want to keep my hgb at 9-10, WBC's no lower than 2.0, Platelets 2400 (gulp) and ANC greater than .4. Neupogen and Procrit as needed to stay the course.
This protocol would call for double dosing for 4 weeks with weekly bloodwork and a VL at the 4 week mark. The double dosing would only be extended to 12 weeks if not RVR at 4 weeks. I certainly have the option to go for a trial and will explore that option carefully. Also checking into the Alinia.
It seems the deciding factor to be aggressive is because I have Grade 3 inflammation which could worsen my existing well- compensated cirrhosis and perhaps limit my options in the future.
Thank you for your feedback. PS I also just found a similar post about double dosing from a couple weeks back and am reading through the info there.
Lots to ponder......Pam
It seems the deciding factor to be aggressive is because I have Grade 3 inflammation which could worsen my existing well- compensated cirrhosis and perhaps limit my options in the future.
Thank you for your feedback. PS I also just found a similar post about double dosing from a couple weeks back and am reading through the info there.
Lots to ponder......Pam
Given you're a stage 4, sounds like a sound good plan. You might also ask your doctor about pre-dosing ribavirin and/or adding Alinia to the mix. Also, if you're overweight, getting down to your ideal BMI prior to treatment would increase your chance of being successful. I would also ask the doctor for viral load tests at week 2 (or even week 1) and permission to increase the ribavirin if you don't have at least a one log drop, assuming your hemoglobin hasn't dropped too much. I'm assuming he will use helper drugs like Procrit (epo) should your become too anemic. Are you treating with a liver specialist (hepatologist)? It sounds like you might be and my experience is that some of the very good ones are open to patient input assuming it's sound
-- Jim
-- Jim
You doctor sounds like a very agressive treater. not sure if you are who I posted to before but like I said I would not double dose. I would pre-dose and up the riba and maybe double dose for the first month or so but not for the whole duration. I would rather add something to the regular combo drugs. Something like alaina or better yet get into a trial with Telaprevir or Boceprevir. Don't think Telaprevir allows cirrhotics but Boceprevir does. good luck
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