ALTERNATIVE Treatments if NO SVR after TX

[NYgirl]

Well I saw my doofus doctor today (told me he's NEVER had anybody before who had NO fever or body aches during tx - I was a bit surprised) but I might be anemic now so did the blood work.

Anyways I asked him what we would do if I was not responding. HE said we would NOT base it on the 4wk PCR (which I had to beg for) - we would not get all suicidal but continue onwards. Duh.

SO I said what if I am not responding at 24wks.  What will we try next?

He said nothing. That would be IT.

I said wait I know a lot of people who continued onwards...

So here is my question which I think might be useful for others later too just in case:

What are the next treatment regimens that others have been put on if they did not respond to the first tx?

this way I can begin to have my argument completely ready - otherwise I will find a new doctor who will agree with the next phase.

He told me the only thing he would try is to find a trial = protocol or something I didn't understand.

I need all the ammunition I can get and all the proof that longer/new whatever treatments DO LEAD TO SVR.

Just in case!

Thanks,Debby

[cougareyes]

My ALT/AST immediately normalized after starting tx. I didn't get a 4 wk, but was undetectable at 12. There are many who clear while their ALT/AST are still elevated, some theories suggest the interferon as the culprit. I would also be concerned because more late and non responders and relapsers also had elevated enzymes throughout tx. I think the difference was in spiking ALT/AST versus continual high readings. Just my thoughts.
At any rate these reading indicate inflammation. If the levels normalize then you know the inflammation is starting to subside. And if you believe the interferon reverses fibrosis, this then give it a chance to do that. If these levels are still elevated it means there is some inflammation going on, I don't think this is of no consequence.  Peace

[jmjm530]

My enzymes (esp ALT) have shown a direct relationship to viral load during tx. I believe this holds true in a majority of cases although a small percentage on tx become non-detectible with persistent elevated enzymes. So while monitoring enzymes is a good indicator, PCR always overrides and there's absolute no reason (other than insurance) to have to guess based on enzymes alone.

NYGirl...based on your enzyme levels I wouldn't at all be surprised if you're non-detectible at week 4 or at least have a two-log drop.

Kpj...Good luck with future tx. It sounded like you had a lot of issues with drug delivery last time. The non-refrigerated pegalayted interferon alone should be a big concern. I agree it's  important to take all your meds all the time (or at least 80/80) but as long you take the required riba each day, I don't think it important what time of the day you take it. Ribavirin has a very long half life -- over 100 hours.

-- Jim

[GoofyDad]

Been doing some pondering. Any commentary on how AST/ALT reductions corellate to VL reductions? Some googling suggests that they previously used ALT to monitor tx progress prior to using VL. Generally, it looks like ALT and VL movements relate, but that VL is the better yardstick. Trying to crystal ball the  4 week VL test, for no justifiable reason.

[go-girl]

To know your stage you need a liver biopsy (bx) it will give you a grade for lobular, a grade for portal and stage is 0 to 4 for fibrosis, a 4 would mean sclorosis, hope this helps,

[SJL]

I cannot tell you how very IMPORTANT it is to find the right Doctor. If you are seeing a Gastro, I truthfully feel like most of them have had very little experience with Hep C., and just don't know how or when to treat. You must trust & have faith in your Doctors.

I wasted a full 48 wks. with a Gastro who was tops "in his field," but had very little knowledge about the disease.( Peg-Intron/Riba)I am sure that there are some good Gastros, but make sure before you start treatment that you, he or she is in agreement on treatment. I cleared the virus & relapsed after I had shown that I was undetectable.

I then researched finding the closest Hepatitis C Specialist. I am now under the care of a knowledgable, caring Specialist.

I have done 52 wks. of Infergen/Riba, showing 7 mths. of undetectable, feeling reasonably sure the virus was gone. I ended treatment this treatment in July of 2005. Before my 12 week test my body started telling me that something was wrong.
I phoned his office & explained and they immediately had me take a VL and a Hepatic function table. Indeed the virus was back, but not just back, but with a venegance. The highest my VL had been on both treatments was 5M. This time Sept./05, my VL is 14,300,000.

How could this happen I ask myself?

I am now on Pegasys Maintainence. I will take my 4th. injection next Mon. The sides have not been to bad, still a few lingering ones from the Infergen/Riba treatment.

My ast & alt skyrocketed the 2nd. week. AST., (393), ALT (420).
My spirit almost gave in but I had promised myself a minimum of 4 wks. maintainence to see what happened? My Doctor suggested stopping treatment as interferon can cause serious side effects if it is not treating the virus. We collectively agreed on one more week with a VL and Panel being done. Hallelujah, his office called yesterday and my ast and alt had reduced tremendously. AST(270), ALT (290). GOD IS GOOD.

I am still not close to being out of the woods, but this gave me re-enforcement to stay on maintainence a little longer.

I will not give up unless forced to. I cannot afford to. In my notes of 1994, when I was contemplating a career move, I wrote "Make sure when you approach a fence, Who built that fence & what purpose that fence is serving." Yes I live on Values, Missions, Goals, and GOD! HE will see us through this time of our lives. Watching over, Guiding, and Directing. God is awesome!

Another little tidbit-I go by:
S=Select your goal
U=Unlock your negative thinking
C=chart your course
C=commit yourself
E=expect problems & difficulties
S=sacrifice yourself
s=stick with it

I hope this gives you a little insight into my treatment. It is not easy, but God did not intend for all of us to go through this. In my thinking, if for some ridiculous reason my body cannot accept this interferon, then this is God's plan for me and I will do my best to enlighten anyone with encouragement and positive thoughts.

FIGHT HARD, THINK POSITIVE, YOU ALL CAN DO IT,
Fondly
SJL

[NYgirl]

I'm a 2/2 - verging on 3/2.  I want to do everything I can but I guess right now the best advice is keep on praying and doing what I am.

It was on my list of questions today so I asked him.  4 week PCR.  Slow responder - stuff like that.  Just finding out where he stood.

I am going to win anyways here so it's not really an issue is it?  ;-)

Shot 3 tonight. YAY!  Kill more! Die you little critters die!

I'm sorry you are feeling so punk Jim.  You've been such a grounding force here for so long - that having to know you are getting beaten up right now just SUCKS. I'm going to pray for you tonight while I pray. Lately it seems a blanket prayer for everybody in here is good - but I can be doing more while I'm in bed you know?

I believe that that will help!

[NYgirl]

Thank you for your words.  I am lucky that I am in NY - this guy just doesn't seem enough "up on the latest" really to me and a bit laid back.

I'm sure it's just cause the 4week pcr is coming - and I started to think hum...what if?

This whole disease is not only physical it plays some mind trip on you as well. that is a fact!

Just got to get my gusto back.  This week I've been physically DRAINED - and fainting and having this buzzing in my head that it's been a bit difficult.  Of course he seemed to think the buzzing WAS in my head but I am here to tell you it is not.  ;-)

[sunspot]

I went through the same anxiety as you, one week before my first PCR. I was bouncing off the walls with.

[FlGuy]

If you go to www.thebody.com and find the forum on hepatitis treatment you'll see Q&As to/from Dr. Douglas Dietrich who is at NYU school of medicine.  He has frequently told questioners/people in treatment to contact his group for treatment/consultation.  Just one of many in the sea of Drs. Not sure if you're in the city - but he could be an option.  The Q&As are interesting - but brief.

[NYgirl]

I am always looking to read more. I find is fascinating having some clue about what's what.  i'm a kind of nosey in person I guess in real life now..I want to understand how everything works.  Maybe since my body is so tired my brain is trying to make up for things!

Going to go read there now, thanks again, thanks a million!

[susan400]

There's always off label treatments if you can find a doctor who is willing to be more aggressive in treating you.  There's higher doses of Ribavirin, which is what I'm doing now.  And there's always the wait and see approach if you're able to do that.

Susan

[PasoPerson]

Just wanted you to know that my VL pre-tx was 1,300,000.  My 4-week PCR found me every bit as anxious as you, probably worse.  Results, of course, take over a week after the test, too.  When they came, I was so disappointed.  My VL at 4 weeks was 427,400.

This was only a .66 log drop.  I got so depressed, convinced myself I would never be SVR, etc.  What a twit I can be!  A dear person on this board pointed out to me that, sure, I was not SVR at 4 weeks, but a .66 log drop is one-third of the way to SVR.  

Four weeks is one-third of the way to 12 weeks.  Well, duh duh duh ... this little ole lady picked herself up and on we go.  The folks here are closer than anyone I know, except for my wonderful hubby.

So, even if it's not what you WANT, it will be what you need to know at this time.  Keep on keeping on.  The chance we take with a 4-week VL test is just that - a chance.  The truth can be painful, or it can be just what we hoped.  But it's the truth nonetheless.  God is in control.  God will help you.  But He will do that in HIS time, not in our time.  (He's pretty sneaky about that in my life, anyway.)

I will pray for you daily, NYgirl. God bless you.

[NYgirl]

What a lovely and eloquent post.  

Everything you said makes such perfect sense. Everyone has made such perfect sense.

God is in control and I know with ME He always comes crashing in to help me at 11:59pm you know? One minute before doomsday He looks at me and says Oh you silly girl of little faith!

I do believe I will be right on schedule and if I am not I will continue on anyway knowing that He will be there just when I feel like I can't go on anymore.

One of the biggest bummers to me so far is I am just not up to going to church on Sundays yet. My church is over an hour away and the whole project...is too much.

So it's nice to find some people with faith in here too.  It means a lot to me to be able to saying things and not be considered a "nutjob".

I hope that others don't find talking about God offensive at all but if you do please just try to skip over - it's very important to some of us.

And thanks for your tolerance!

And thank you susan and pasoperson for your great words.

[MichaelT]

The alternative treatments are really just variations on the blessed-approved interferon/riba treatment. That is, different dosages, different dosing intervals, different interferons, etc.

Every treating doctor knows the standard treatment is "acceptable" for most of the folk being treated, whatever the heck "acceptable" means. I pessimistically interpret it to mean "I won't get my *ss sued off if I stick to the script." This also means that they know the standard treatment has a good chance of not being optimal for <i>you</i>.

It takes a lot of work by the doctor, well let's be honest, it probably takes a lot of work from a team of people, including more treatment involvement by the patient than with most other diseases, to make the standard treatment work. Optimizing treatment is much more work. There are doctors who will do this to provide the best care possible for a patient, but they are a very rare bird.

Still, giving it a good go may not eradicate the virus and it may be necessary to explore treatment options to best preserve liver health to keep a person in fighting trim to fight the battle with better weapons tomorrow. God bless!  -Michael

[new-sojourn]

Healing takes place when mind, body and spirit are all working towards it.  Stress is as toxic as alcohol for your body.

If you want to be more involved in your treatment, take charge of your diet, your exercise, your rest and meditate those destructive emotions away.  Badgering your doctor will not improve the chances of clearing.

I had very few sx's-mild @ worst.  My 3wkly shots w/the peg pen hit me like speed and I was very busy.  I took my shots in the morning and walked off any immediate sx's.  Around month 4 my hair started thinning.  My skin was dry, so I added things and slathered up.

I cl'd by day 18, fin 24wks 3 yrs ago.

It may sound old fashion in this 'wired-connected' age b/ buy a few good books on hep c and educate yourself.

I barely talked to my doctors, all I wanted was the meds to kill the virus.  The rest I handled @ home.  And I'm end stage and did have a 37yr transfused infection.

B/get your stress level down and after you have done everything you can to facilitate healing, then badger your doctor w/'what ifs.'
  that's God's plan.  the healing is in your hands, the tools are in the doctor's hands.  And you can't hear god's plan until you can be still and 'thy will be done.'

[jmjm530]

Heed Coug's advice. It's good to be proactive with your doctor but sometimes not to far ahead or everyone loses focus/interest.

I forgot your stage, but if I were a stage 0 or 1 (possibly even 2) I would stop treatment if I didn't have a two-log drop by week 12 -- wouldn't even bother to see what week 24 brings -- well, maybe if I were a stage 2.

It's a matter of risk/reward. Why subject yourself to these toxic drugs with diminishing odds (and less than a two-log drop at week 12 is diminishing odds) and/or extended treatment unless you have signficant liver damage?

Knowing your personality a little, I have a feeling this response will go against your grain but you asked for opinions. In the end, you go with your gut on things like this , but hopefully an educated gut.

-- Jim

[chellski]

from my readings here, you certainly are a "scrapper" - just what we need around here - lots of energy......i haven't been posting much as the sx have gotten to me.....im type 1; bx 2/2; and im wk 26/48....i didn't have a 4wk pcr - my doc doesnt do it until 12wks - i showed undetectable then.  however b4 i went to see him i was armed with info i received from various places, mostly here at m.h....i too was afraid i might be a slow responder and wanted to fight for my right to tx!  he would've taken me off meds tho and i feel MY only alternative would be to look for another doctor....mine is definitely of the "cookie cutter" variety...doesn't think outside the box, ya know?   no "individual" treatment....
as new sojurn says - TRY not to worry about it (easier said than done) you're probably fine and the meds are working...
be well!
michelle

[kpj49]

Hi, try not to worry about it right now, you will do fine and kill this virus.
I just finished 6 months of tx.  At 15 weeks, I was down 1.5 log and at 24 weeks I was up to where I started.  I have been told(something the doctor said, "no, big Deal"..).that because I ran out of the shot and was 2 days late and twice I forgot the riba and took them at anytime during the morning and night that if you aren't precise it gives the virus time to mutate and get stronger.  Now the doctor never said anything about this and it makes sense to me.  So be very precise, just to be sure.  Plus I had the drug manufacturer ship me the drugs every month and they came from Florida and I live in Oregon.  (the kind you mix) well, it was in the summer and once it was refrigerated and all the other times it wasn't.  It just didn't make sense to me. The doctor took me off( 2weeks ago) at 24 weeks...basically I had had minimal sx.
He now says there is a shot you take EVERYDAY along with the riba. But wants me to take 3 months off.
All I'm saying is try to be precise when you do the shot and take the pills and don't listen to them if they say, don't worry about it.
Think positive and I know you'll be ok.

[NYgirl]

My original ALT and AST were over 200.  Well out of the range. Through the roof he said.

Well this morning they gave me the WRONG test instead of the CBC they tested my ALT and AST and Albumin etc.

Well my ALT is down to.....29!!!!!!!!!!!!!!!!!!  My AST is down to 24!!!!!!!!!!!!

From being in the 200s.  I am just so shocked something good must be going on!  :)

I had to share this. Nobody in the outside world will understand this at all!

[v eggie dip]

wow, that is a drastic reduction in such a short time, you sure they gave you the right test results and not someone else

[friole]

You will both kill this virus, I am sure.  NY, you need another doc.  I just asked my GI the same thing Wednesday at my 12th week visit -- what if I don't clear with this PCR.  He is willing to do whatever I want -- extend treatment or go to daily infergen.  We will do this.  Like New Soujourn said, we just need to arm ourselves with as much information as we can find.

Carolyn, please don't be discouraged.  You have significant damage and perhaps it will take you a bit longer.  But look at all those nasty viri you killed already.  I know you can do it.  Please just hang in there.

Note to kpj -- I also think it is important to get your doses as close to the same time each day with the riba, and as close to the same time each shot day. I think it helps the body maintain a constant level of the meds needed to kill and stop the mutations.

[GoofyDad]

They added a liver panel to my 3 week CBC. Just got off the phone and my AST/ALT are low 30's - lower than they've been in forever (normally 50's & 120's - or the other way 'round).

WBC is up to 4.0, with ANC over 2K, thanks to a boost from the Nuep on Tuesday.

HGB? Well we can't ask for it all, now can we? 11.5 - down 4 grams from baseline. But I'm hanging. Figuratively speaking.

[GoofyDad]

Sorry, forgot to offer congratulations. Awsome job, girl!

[friole]

You went from 400 something to 2000 ANC???????? wow that is incredible.  Looks like you need to watch that hgb - mine is about the same as yours right now too.  Anyway those labs look mighty fine.