Double Dose

[TeeTom]

I've been reading some of the posts here and there are a few people recommending Double Doses of medication to try and curb late stages of hep c. I have a few questions...

#1 - Do you think it will increase the percentage of annihilating the virus, taking the nip-it-in-the-bud approach?

#2 - What are the sides, are they doubled also?

#3 - Why wouldn't the Dr's recommend it if it does a better job?

#4 - Has anyone experienced double dosing on this forum and willing to share the effects?

The reason I'm asking is the obvious, I have never been treated and am considering it, so I want to give it my best shot in round one so I wont have to deal with it but once. Anything that may increase my success I am willing to try.

Thanks

[TeeTom]

Thank yee, thank yee, thank yee, I have been in and out of the Kirkland Clinic in Birmingham for the past 3 years for tests and stuff. I did not get copies of my test results, bad dog on my part, I did have a biopsy in February and I didn't get the full results yet even though Dr Bloomer says I have 'some scarring' and 'fatty something or other'. I have a request to get copies of the tests in progress and I go back to see the Dr. in October. I think he wants me to do the tx asap. As soon as I get my test results I'll post them for all to see. I wish there were test kits at CVS I could get and do myself but..

Tommy

[Trish77]

lol...sorry if you thought I was being hard on you, not the case.  Just how I phrase things I guess - just wanted to make sure I understood your drift.

Not sure of your stats - you haven't posted them yet.  Have you had a biopsy to determine what stage of liver damage you're at ?  What genotype are you?  

First suggestion is to seek out an experienced hepatologist who knows their stuff.  

Next would be to have a biopsy to determine stage of liver damage.  I know some recommend not bothering with a biopsy if you're going to treat anyway but I look at that differently.  If you go into treatment and you have to make a decision on whether to stop or dig in even deeper and keep fighting, knowing how serious your battle is can be a big factor in making that decision.  

As you consider on starting treatment now or later, figure that new and potent drugs that may give a shorter duration of treatment are expected on the market in 2011.  If you're going to wait, you need to find out the level of liver damage that you have so you know if you CAN wait and how often you need to monitor progression of liver damage while you're waiting - back to that biopsy again.

And if you do go into treatment - be prepared to take every day at a time, be prepared to roll with whatever comes your way and have your backup plans in place in the event that side effects may hit you hard and yet hoping that they don't.

Hope that helps.  Welcome to the forum.

Trish

[TeeTom]

Thanks Trish, I'm new here so be easy on me. I'm just trying to get a handle on things. I do appreciate your input and I hope to be a positive statistic for this forum and the people here. As time goes on I'll be able to share my experience with you and everyone else. I can say I'm in what seems to me good health and spirits, so I guess I'm in for a long hard ride.

I guess I was insinuating that healthy people would seem to suffer (cope) less, that is wishful thinking on my part.

Do you have any suggestions for me?

Thanks

[Trish77]

Those I know that double dosed are those that relapsed or didn't respond to treatment well enough first time around - the theory is that it indicates those virons need a harder kick, not because a resistance to interferon develops.  There isn't a reason to double dose first time around.  

"Is there any one who has had a high level of immunization to sickness that has went through the treatment? It would seem to me through logic that a person that got colds and/or flu every year that took the treatment would have a harder time of coping than a person that hardly ever got sick unless they sucked face with someone that had the flu or someone sneezed directly into their face. ?"

Not sure what you mean by coping.  In some ways, those who are used to dealing with sickness would theoretically have an easier time dealing with treatment because they're more used to being ill and having to accommodate that whereas those who are used to being strong and healthy and active are going to take awhile to cope with having their activity level being seriously curtailed and going through all the various side effects.  Not necessarily but simply conjecturing there.

If you're offering up the theory that those who are generally healthier would be less susceptible to side effects, the unscientific scan of experiences on this forum would say that ain't the case.  Two people with generally the same healthy constitution and comparable levels of healthy activity prior to treatment have been hit differently with side effects, one seriously debilitated, another one managing to work and maintain reasonable quality of life even though reducing physical activity to a great degree.  This treatment is a wildcard and you don't really know what sort of side effects will come your way until they actually do.  

[Krusing]

That just scares the bejesus out of me, thinking about double dosing!!  This next Monday, 08/31, will be my 1 yr anniversary of my 48th Pegasys shot.  I soooooooo suffered from sides and simply cannot imagine what would have happened to me, mentally as well as physically!
Although I was NOT believing I would clear, being 1a, stage 3-4, vl 29,000,000 and 58 years old, I did, by week 4 and have remained SVR.  My doc is an infectious disease doc and he knew what he was doing, I believe.  Each warrior is different.  My riba dose had to be adjusted with my dramatic weight loss, a little over 100 pounds.  I had to go on Procrit for 3 or 4 months.
Now I go in, next Tuesday for my 1 yr blood work.........OMG.........I get sick just imagining being told.........another 72 weeks!  Please send up a prayer to your Higher Power!!
And hang in.......it gets better (if you don't die first)

Shannon

[Rockerforlife]

Dont mean to be to personal,but you dont work in this condition do you?....if you do .you are tuffer than me....now please.i hope nobody gets upset...BUT...please try the aglae and mushroom extracts....i will bet my life you will feel better

[Rockerforlife]

I was referring to the real DD

[DoubleDose]

TeeTom , welcome to the forum and do feel free to ask questions, make comments, and join in at any time.  You will get lots of feedback, and I am certain your learning curve will be rapid and helpful.  My only other comment on therapy is that getting an early response, that is becoming undetected while on treatment is the best possible sign of success.  Becoming undetected before 12 weeks into tx will allow you to have tremendous odds of achieving SVR as long as you complete a FULL course of tx, as prescribed by your doctor, and keep the medications at optimal levels.  The Ribavirin is very important to getting the long-lasting SVR, and not relapsing after stopping, so be sure to have a strategy with your doctor to keep the Ribavirin at full dosage.  If you choose to try therapy now, you still have excellent odds.  The situation will only improve as newer drugs come onto the market after testing and approval.  

Rocker:  I do have a good many side effects from all the tx time, and many of my old threads will bear that out.  Much of the after-effects have continued to develop well after ending tx six years ago, and at this point I have figured out that most of the sx are related to my developing a 'lupus-like' autoimmunity which causes randomly: joint and back pain, costochondritis (ribcage pain), periodic numbness in limbs or back, lots of reactions to the sun which I never had before, like rashes, feeling feverish, fatigue, and almost flu-like symptoms from too much exposure...I also have periodic bouts of mouth, tongue, and nasal sores, dry eye and irritation, fatigue, muscle weakness, and difficulty rebounding from lots of exercise or exertion. Developed high BP after tx, some thyroid deficiency (hypo), and on-and-off ED. But I still manage to live a full life, run a business, travel, and workout.  Its hard to sleep well many nights, due to rib, shoulder, or neck pains, but other times I feel sort of fine.  It all comes and goes....but never goes AWAY.  

That's my story...and I'm sticking to it.  Have a great weekend all.

DoubleDose

[WriteItDown]

Oh, that is scary.... but thanks for posting anyway.

[Bill1954]

Have you been to Janis and Friends yet?

http://janis7hepc.com/have_you_been_just_diagnosed.htm

Here are some other reference sites to bookmark:

http://www.hivandhepatitis.com/hep_c.html

http://www.clinicaloptions.com/Hepatitis.aspx  (free registration required)

http://www.labtestsonline.org/

http://clinicaltrials.gov/ct2/search

There are a few more to get you started. Take your time, and develop a sound plan to follow—

Bill

[newleaf09]

Please reread my posts.  I did not say that HCV develops resistance to interferon.  I'm sorry to say that I did find what my doctor was talking about.  In some patients, antibodies develop to interferon.  I believe that you start with a clean slate but if you develop antibodies, the next go is going to be less effective.  Antibodies to the main therapy drug, interferon, explain what they call 'breakthrough' - everything going fine then virus returns during TX.  Patients were assayed for anti-interferon antibodies at beginning.  It showed up in the 'breakthrough' patients at the same time the virus broke through and became detectable again.  Here is the reference for the first paper I found:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=2200453&blobtype=pdf  

The first attempt is the best attempt.  Apparently there is no way to know if you will be one of the unfortunates who develops antibodies and starts to fight the therapy drug until you try the drug.

[TeeTom]

Rocker are you refering to me or DoubleDose?

[TeeTom]

Thanks for sharing DoubleDose. I apoligize for stealing your name as a topic.

I have learned so much in the past few days my head hurts from all the information that I have tried to absorb. Ive been sitting at my computer today since this morning @ about 8 am. My wife has tried to talk to me and I have completly shut out the rest of the world.

I'm like most of the people on this forum. Try and find out the do's and don'ts, eat right, take any herbal aids if there are any that wont contribute to the illness, share my results so others can see, thank God that I am still kicking, encourage others and keep on keeping on.

Thanks

[Bill1954]

Tommy- as this thread progresses you’ll hopefully begin to receive enough input from different players to mount a plan. As DD says, you’re receiving the cumulative knowledge of many patient-years; this is developing into a rather interesting little talk here. Perhaps others like ‘Willing’ will weigh in for you here as well. Welcome to the discussion group by the way—

Bill

[Rockerforlife]

you are a modern day gladiator,do you have any disabiling sides after all the fighting?

[DoubleDose]

And my forum name is DoubleDose precisely because I did double doses of Peg-Intron on my second tx, as well as extending the tx to 72 weeks.  Bills advice is very solid, and HCA's comments on resistance relevant as well.  The reason that I used a double dose was that I was not only a slow responder, but normal doses did not seem to knock the viral load down to undetected.  During my first treatment, I even got up to using daily dosing of the old standard Schering Plough Intron, in large doses, and did not get undetected even by week 26.  I kept going, switching over to Infergen, in very high doses,(15 mcg. 2X/day for the first two weeks, then 15 mcg. /day) for the last nine months of the first tx.  I got undetected fairly quickly, but could not stay on the meds long enough to secure a full SVR, due to extreme anemia from the RIBA.  We had to cut it down drastically just to make it to the end.  I did fifteen months total on the first round, but only about eight months, toward the end, were while I was undetected.

My second tx started off slowly as well, but we beefed up the dosage, and I got undetected around week 19, and kept the pedal to the metal using this double dose for the 18 month duration, along with full dose Ribavirin, assisted by Procrit.  I just barely made it to the finish, my red blood cells were dropping to dangerous levels even with twice a week Procrit.  BUT, I got the SVR on that round, and did not have to go back again and again, as some others have.  I wanted to do everything possible to assure the SVR, thus the double dosing (which I think I really needed just to get undetected within six months), and the long duration.

Luckily, my doctor is from the #1 teaching hospital in the country, and had tons of experience doing clinical trials with every drug used for HCV...he had run Pegasys, Peg-Intron and Infergen studies...was using Procrit very early on, and was extending patients with difficult response patterns to 18 months, and some to 2 years.  I know several relapsers who got their SVR's because of my doctor's tailored treatment plans....geared to each specific individual and their response pattern.

That being said....today I think the game will be changing greatly...with the PI drugs, and new immune system modulators, and other types of inhibitor class drugs....we should SOON see a 'cocktail' approach, still using interferon as a core drug, but shortening both the duration of treatment, and the dosage levels of interferon as well.  This may also help prevent the horrible after effects that many have developed from lengthy doses of interferon, or multiple tx'es.  My acquired autoimmunity is certainly an issue after my tx'es, and my symptoms after SVR  (six years after being cured) are at times pretty harsh and debilitating.  The newer treatment protocols should amelioriate these problems significantly...we all hope, at least.

So, good luck to you, and keep tuned into the Forum.   You will experience lots of 'food for thought' and the wisdom of many people who have gone through a lot of work and learning to get to where they are now.  The more knowledge the better, and it allows for a more enlightened dialogue with your doctor.  

DoubleDose

[TeeTom]

That's good stuff. I really would like to wait till the PI's are released, but I'll leave that up to the Dr. I've been reading some of the trial results and it looks like the boceprevir results are better than telaprevir.

Is there any one who has had a high level of immunization to sickness that has went through the treatment? It would seem to me through logic that a person that got colds and/or flu every year that took the treatment would have a harder time of coping than a person that hardly ever got sick unless they sucked face with someone that had the flu or someone sneezed directly into their face.

I'm just saying...


Tommy

[HCA]

The Hepatitis C virus does not develop resistance to interferon treatment.
I treated three times as a non-responder.On the fourth attempt I became UND  post week 12 but relapsed.
On the fifth attempt I became UND at week 6,but had to stop due to complications.
The virological response in my case became progressively better.
I am currently deep into a telaprevir based treatment which I have a reasonable expectatioin will succeed

[WriteItDown]

Then it would follow that the reason Newleaf's doctor would hold off on treating all patients who don't have positive indicators of success would NOT be because of viral mutation, but because of other factors, i.e. becoming harder to treat after relapse.

My understanding was that with harder-to-treat patients it might be preferable to wait until triple therapy is available, because this gives the best shot (thus far) at eradicating the virus with a single try.

[newleaf09]

I'll see if I can look up some of the IFN info from my doctor and find you guys some references.  The interferon primes the system by putting the immune system in high gear, manufacturing killer t cells to kill hep c virus, which is also made more 'recognizeable' to the system by the interferon.  SOC priming also knocks the viral load down for starting the PI.  The PI's interfere in viral reproduction of Hep c viral units, so there are several different kinds of activity going on, with the PI being very specifically targeted to the virus itself.  The IFN 'mop-up' keeps going on in the liver cells after the virus has been killed out of the blood.

We were warned that the PI can never be skipped or delayed because if it's not kept at steady state in the body, the virus may mutate.  A study may reduce your peg or your ribavirin but they will not reduce your PI, I guess because of the mutation risk.  

[Bill1954]

My understanding is that there is very little escape mutation involved with interferon treatment; in fact, this is in part why interferon is used in the PI trials; to ‘mop up’ behind the protease inhibitors to prevent us from manufacturing ‘monsters’.

With that said, a patient that suffers relapse from IFN treatment will be harder to treat in the future; either because of poor host *or* poor viral dynamics.

Bill

[Willy50]

I was stumped when I first read the headline until I read the post.

Be aware that there is also a member here called Double Dose, note the *capitals*.  If you write about double dosing I'd leave off the caps to avoid confusion.  That member also is SVR and has no particular dosing regimen he recommends, to my knowledge.    Nuff said on that.

I think that pre dosing or induction dosing may have merit.  I think we're seen it work with some members here.  The jury is out on it as some members rightly noted.  Unless you have a good doctor who is also on board with you and who can provide the additional care one may need when attempting it be careful.

Many people can easily "tank" and get dosing reduced or even stopped.  I also think that some of the successes that we have seen here were not only based purely on double dosing but through a variety of tactics and supplements.

I think that another unasked question(s) in this thread might be which might provide a more certain outcome; waiting for the new PI's or attempting double dosing?  
Can one wait or might one give TX a try?
Risks vrs rewards on either type of treatment.....

My feeling is that if one could safely wait (that is a question for you and your doc) the PI's might provide a shorter, safer and more predictable outcome.  I'm not familiar with your circumstances however...

I think MJ's example would be closer to the guy who brought candy for everybody in his class but instead ate it ALL.  Double dose?  Yeah, and then some.  ; )  

best,
Willy

[WriteItDown]

I was under the impression that viral mutation is only a result of the protease inhibitors themselves, and not SOC. Is this incorrect?

[newleaf09]

Source for me is my infectious disease doctor. He is trying to hold off treating all patients who don't have positive indicators of success if they can wait for triple therapy, just because of poorer response on the second go.  There have been many posts talking about viral mutation and its effect on future response but I don't remember any of the titles about retreatment.